I always like to blog about the extraordinary things that happen in our lives. Mostly because we all enjoy a God story now and then, and also because writing them down helps me to remember and to be thankful for them. So here are a few special things that have happened to us in the past few months...
If you recall in one of my previous blogs, I mentioned that our Suburban was at the garage and needed some unforeseen repair work done to it, and it was going to cost more than we anticipated. Well, to start with, we are so grateful that the problem was detected before we picked up the Suburban, before we took it on a day trip- BECAUSE the issue was brake related. I'm so thankful that we were not going down a mountain road only to have our brakes quit working on us!! So we are thankful for God's protection!! Also, friends of ours that visited that same weekend had felt led to give us $1,000... that covered the extra expense of the brake repairs BEFORE we even got the bill!! So again God was taking care of our needs.
Another cool story is that I got a FB message from a friend saying she had had a dream that our kids needed shoes. She said she felt a little funny telling me that she would buy our kids each a pair of shoes, but she really felt the dream was something that God wanted her to act on. The amazing thing is, that a week before she messaged me, we went to a church outing. The weather had faded from summer to fall and I knew it would be pretty chilly since we were going to be outside. I said to Dutch, "I need to go shoe shopping, all we have are flip flops for the little girls". We went to the outing in flip flops and yes, it was chilly!! I knew for certain that I needed to get shoes in the near future, then I got this message on FB!! What I love about this story is not only that God provided shoes, but the obedience of the one that gave them. Many times the Holy Spirit prompts us to do things, and sometimes they put us out of our comfort zone, but its so important that we obey that voice. When we follow through on the things He lays on our heart, we learn to trust that inner voice and we become a vessel He can use.
Here's one more little story- a few weeks ago I planned a day out. I was meeting some ladies friends from Lancaster, in the Selinsgrove area. Selinsgrove is about exactly half way from here to Lancaster, so it makes a great meeting place plus there are lots of stores there to shop. The one we were headed to was a particularly large re-uzit store. Community Aid is the name of it. But the store itself has nothing to do with my story!!! So anyway... of course since there's a Starbucks in the area my first stop that morning was to grab a "Tall White Choc. Mocha Non-fat w/ Whip", notice I said "tall" and not "venti" this time. Wow, I'm changing my ways!! Ugh, bunny trail again!! Back to the story- enroute to the store that morning, my dear ShaLyn informed me that my coffee was "on her" that morning- meaning she was buying it for me. I thought it was sweet of her, and I asked if she was planning to have one too. She said "Nope, I'll pass, I just want to bless you with one this morning". When we got to Starbucks, I placed my order and Shay started counting out her change, (she's like her mama, she justifies these things by using pocket change instead of dollar bills:)) when we pulled up to the window to pay, the cashier was laughing. She took my money and said, "For some reason the barista made two drinks for your order, do you want the second one free"??? Ummm, why sure we do, thank you very much!!! So, my daughter who of course drank the other coffee, saw her giving come right back to her!! She was so in awe of it. We thanked the Lord and went on our merry way!! Sidenote- Now, I realize that our kindness does not always come back instantaneously, but it does come back sometime... that's a promise!!
Monday, November 24, 2014
Friday, October 24, 2014
Mystery of Marriage
Mystery of Marriage. Wednesday evening 6:00 p.m. - Sunday 2:00 p.m. Sounds long. Too long- too long for the kids, too long away from work, too long for a retreat. BUT. If you're looking for more than just a marriage retreat, if you want to hear some really good teaching, if you want to "go deeper" with God, grow closer to your spouse, and if you want to find out what "church" really is- you may want to consider attending our next "Mystery of Marriage" in May 2015.
Last week we had such a wonderful time as a group. Sharing, laughing & crying together. We learned to "turn to Jesus" early in the morning before we were even fully awake. We shared communion together and were reminded that we were not to examine ourselves to see if we were worthy to take communion of our own righteousness but rather dressed in His robe of righteousness. Hallelujah!!
Every couple shared a piece of their story, their life journey- because we ALL have a story. Our lives have been shaped by that story, the good, the bad- all of it really. So we give couples the opportunity to share their story, and to say what's on their hearts. If they have something they want to work through, we pray with them. We try to be sensitive to the working of the Holy Spirit at all of our retreats, so while we have a schedule, we are also flexible.
A few highlights of the week were- the one couple renewed their wedding vows, the formal dinner on Friday night, the one couple felt a powerful move of the Spirit while praying together in their room the one afternoon, the good laughs (especially about the one couple's honeymoon trip to Alaska), and so much more.
Without sharing too much personal info about the people's lives that were here, I wanted to give you a glimpse of the exciting things God is doing. We have another one of these retreats schedule for May of 2015. Please let us know if you or someone you know is interested in attending.
Last week we had such a wonderful time as a group. Sharing, laughing & crying together. We learned to "turn to Jesus" early in the morning before we were even fully awake. We shared communion together and were reminded that we were not to examine ourselves to see if we were worthy to take communion of our own righteousness but rather dressed in His robe of righteousness. Hallelujah!!
Every couple shared a piece of their story, their life journey- because we ALL have a story. Our lives have been shaped by that story, the good, the bad- all of it really. So we give couples the opportunity to share their story, and to say what's on their hearts. If they have something they want to work through, we pray with them. We try to be sensitive to the working of the Holy Spirit at all of our retreats, so while we have a schedule, we are also flexible.
A few highlights of the week were- the one couple renewed their wedding vows, the formal dinner on Friday night, the one couple felt a powerful move of the Spirit while praying together in their room the one afternoon, the good laughs (especially about the one couple's honeymoon trip to Alaska), and so much more.
Without sharing too much personal info about the people's lives that were here, I wanted to give you a glimpse of the exciting things God is doing. We have another one of these retreats schedule for May of 2015. Please let us know if you or someone you know is interested in attending.
Wednesday, September 24, 2014
Stories, updates, and more
Many things happen on a daily and weekly basis around here that I never take the time to write about. And I know we all have things like this... little everyday things and even big "God" moments that we are in awe of but never take the time to share them. Today's blog is a compilation of events, updates and God moments that have taken place since the last time I blogged.
The Ministry-
God has been using this place of rest to touch so many people. There is a steady flow of guests coming and going. And we, as an on-site team, interact with nearly all of our guests at some point. It might be anything from sitting with them for several hrs. through a "counseling" session, to having a meal together, sitting around the campfire together, or spending some time in prayer. It varies so much- the people, the needs, the time spent... but one thing that doesn't change, it is evident that the Holy Spirit is at work here. (I know there are people on-site (and abroad) who are praying on a regular basis, and that directly affects the Kingdom work being done here). Many people testify to feeling a peace while they're here. We praise the Lord for what He is doing!!
Highlights-
The experience that one of our most recent guests had while spending time alone at The Garden Cottage, brought a renewed sense of joy and awe at what God can do in a person's life when they are ready to surrender to Him. "David" (name changed to protect identity) came here in desperate need of something, and in his heart he knew what that something was. He knew He wanted to find God in a real, tangible way. He had been raised in church, but said he had never really connected with God in a real way. When he arrived here, Dutch and Dan were actually praying with three brothers and their dad that had come for the day to work through some tough "guy" issues. Dutch invited "David" to join them down at the barn. One of the brothers experienced a major breakthrough and he had a desire to be baptized. Hey why not?? Here's someone who has a revelation, all the stuff he's known in his head finally reached his heart and he wants to outwardly show what just took place inwardly. So we headed to the pond. All the while "David" was taking all of this in....
"David" told us later that what he saw that afternoon and evening with the brothers and their dad, and the baptism and all- seemed real to him. And that was what he was looking for- real Christians. He also told us that when he sorted through what was going on in his life, he had a desire to be baptized as well. To make a long story short- "David" connected with God during his week here, and to see the change that took place was awesome!! He was excited to go home and live out what God had started in his life, knowing, of course, that this was only the beginning of the journey. Challenges would lay ahead of him, but change had come and he left here different than he was when he came.
To add to the story, "David" returned last weekend, bringing with him his wife because he wanted to show her the place where God had started changing his heart. He also wanted to be baptized. After church on Sunday, we, along with quite a few of the folks from LHF Fellowship, headed to the Loyalsock creek to allow "David" to publicly confess that he believed in Jesus as his Savior and was ready to die to the old, and walk in the new!!! It was so refreshing to see his excitement about what he had found, his hunger for truth, and his desire to follow the voice of the Holy Spirit in every decision he makes!!!
Shay & Matt-
ShaLyn had mentioned earlier in the summer that she had a desire to be baptized. We talked about it some, but didn't make any official plans. We knew she was ready, but were waiting for the right opportunity. When, LHF Fellowship, the church we attend up here, held an outdoor service here this summer, several people were baptized in the pond that day. If Shay had known ahead of time that that was planned for that day, she said she probably would have done it then. So when the decision was made to baptize the one brother (from the story above), we asked her if she wanted to take this opportunity and be baptized as well!! It only took her a minute to decide- YES!
We also gave Madison the option of being baptized since he had made a commitment to Jesus a while back and we knew that baptism was something he desired as well. He also decided to get baptized. So on the evening of Sept. 9th both Shay & Matt took the "cold water":) challenge for Jesus. They were baptized in the name of the Father, His son Jesus, & the Holy Spirit- they made a public statement that they had died to self and the world and were ready to follow Jesus!
Gracie-
The last time I posted about Gracie, we were scheduled to have a surgery to put tubes in her ears. Well, that appointment happened to be scheduled on a very busy week here at The Haft, and I could not see pull everything off. I cancelled the surgery!! So as of now, Gracie does not have tubes in her ears and the surgery has not yet been rescheduled.
As for her overall progress- she is really doing well. She has been healthy! She is learning to get around!! She doesn't venture all over the house like a typical child her age that can see far and wide, but considering her seeing handicap she is doing QUITE well. She pulls herself up on furniture, she interacts with her siblings, she half crawls, half scoots with her head and makes her way from one area of the room to another. She is very social with us her family, but when others talk to her she often puts her thumb in her mouth and lays her head on the shoulder of the person carrying her. We've discovered recently that she loves to be outside. She also loves when we sing (more on that below).
"Holy Moments" w/ Gracie-
Gracie absolutely loves when I sing to her. I have started recently to intentionally sit on the rocking chair at some point in my crazy day and just rock her and sing. I really love to sing to begin with, so now I finally found someone that really appreciates it.:) I often sing old hymns that I grew up singing in church- Amazing Grace, Just As I Am, My Hope is Built on Nothing Less, and many more. Gracie simply positions herself, head tilted, and looks directly in my face and watches me for as long as I'm willing to sing. And you know what? Time stands still!! And Gracie and I worship together. I refer to these times as "Holy Moments". I have no doubt that this child will sing and worship in a powerful way one day. I also told the kids recently that if Gracie can't see well in the physical realm, she will certainly see into the spiritual realm. It will be exciting!!
The Suburban-
I find myself writing this blog right at the same time we get a call from the garage where our Suburban is once again having work done to it. And the repairmen says to Dutch when he answers the phone- "I'm afraid you don't want to hear what I have to say".
Our Suburban has served us well in that it has made many trips back and forth to Lancaster and beyond, but this vehicle has not been without its many problems. Every garage visit, or so it seems, is not a small deal- it has had rust issues, therefore causing many parts needing to be replaced. When we purchased this vehicle we would have told you that God provided it at just the right time since we needed something on rather short notice (back in 2011 when we moved to the Haft the first time). We were not planning to trade in our minivan (that never caused us any problems) until plans changed and we realized we couldn't use a truck from Twin-Mar Const. to haul our trailer back and forth. We had to have a vehicle that could pull a trailer and we knew a car dealer that had this Suburban on his lot, so it seemed like the perfect fit. We purchased it a week before we moved North. If any of you recall- the very first weekend we were planning to head back to Lancaster, this same Suburban had a major leak in the gas line. We didn't know it then, but that was one of many issues we would have with it.
I say all of this to say- pray for us that we have the wisdom to know what to do? Do we continue to fix it? Do we trade it in? I still believe God provided this Suburban, but I certainly question why it has had so many issues.
And one more thing- we had planned to take a family day tomorrow, go off-site to Cabela's, and celebrate Madison's 10th birthday. Now that the vehicle is not fixed, we may have to change all those plans, which would be disappointing for all of us... so if you think about it, say a prayer for the Suburban situation.
The Rest of Us-
As for life in general, and how we are doing overall? We are blessed, and most days we're excited about what God is doing in our lives and the people around us. Of course, we feel completely overwhelmed some days and even get burned out. We appreciate all the prayer support we can get!!!! We love hearing from our friends whether it's through FB, email or phone calls.
PS- And we're looking for someone to come serve here at The Haft with us. Is God calling you????
Be blessed!!
The Ministry-
God has been using this place of rest to touch so many people. There is a steady flow of guests coming and going. And we, as an on-site team, interact with nearly all of our guests at some point. It might be anything from sitting with them for several hrs. through a "counseling" session, to having a meal together, sitting around the campfire together, or spending some time in prayer. It varies so much- the people, the needs, the time spent... but one thing that doesn't change, it is evident that the Holy Spirit is at work here. (I know there are people on-site (and abroad) who are praying on a regular basis, and that directly affects the Kingdom work being done here). Many people testify to feeling a peace while they're here. We praise the Lord for what He is doing!!
Highlights-
The experience that one of our most recent guests had while spending time alone at The Garden Cottage, brought a renewed sense of joy and awe at what God can do in a person's life when they are ready to surrender to Him. "David" (name changed to protect identity) came here in desperate need of something, and in his heart he knew what that something was. He knew He wanted to find God in a real, tangible way. He had been raised in church, but said he had never really connected with God in a real way. When he arrived here, Dutch and Dan were actually praying with three brothers and their dad that had come for the day to work through some tough "guy" issues. Dutch invited "David" to join them down at the barn. One of the brothers experienced a major breakthrough and he had a desire to be baptized. Hey why not?? Here's someone who has a revelation, all the stuff he's known in his head finally reached his heart and he wants to outwardly show what just took place inwardly. So we headed to the pond. All the while "David" was taking all of this in....
"David" told us later that what he saw that afternoon and evening with the brothers and their dad, and the baptism and all- seemed real to him. And that was what he was looking for- real Christians. He also told us that when he sorted through what was going on in his life, he had a desire to be baptized as well. To make a long story short- "David" connected with God during his week here, and to see the change that took place was awesome!! He was excited to go home and live out what God had started in his life, knowing, of course, that this was only the beginning of the journey. Challenges would lay ahead of him, but change had come and he left here different than he was when he came.
To add to the story, "David" returned last weekend, bringing with him his wife because he wanted to show her the place where God had started changing his heart. He also wanted to be baptized. After church on Sunday, we, along with quite a few of the folks from LHF Fellowship, headed to the Loyalsock creek to allow "David" to publicly confess that he believed in Jesus as his Savior and was ready to die to the old, and walk in the new!!! It was so refreshing to see his excitement about what he had found, his hunger for truth, and his desire to follow the voice of the Holy Spirit in every decision he makes!!!
Shay & Matt-
ShaLyn had mentioned earlier in the summer that she had a desire to be baptized. We talked about it some, but didn't make any official plans. We knew she was ready, but were waiting for the right opportunity. When, LHF Fellowship, the church we attend up here, held an outdoor service here this summer, several people were baptized in the pond that day. If Shay had known ahead of time that that was planned for that day, she said she probably would have done it then. So when the decision was made to baptize the one brother (from the story above), we asked her if she wanted to take this opportunity and be baptized as well!! It only took her a minute to decide- YES!
We also gave Madison the option of being baptized since he had made a commitment to Jesus a while back and we knew that baptism was something he desired as well. He also decided to get baptized. So on the evening of Sept. 9th both Shay & Matt took the "cold water":) challenge for Jesus. They were baptized in the name of the Father, His son Jesus, & the Holy Spirit- they made a public statement that they had died to self and the world and were ready to follow Jesus!
Gracie-
The last time I posted about Gracie, we were scheduled to have a surgery to put tubes in her ears. Well, that appointment happened to be scheduled on a very busy week here at The Haft, and I could not see pull everything off. I cancelled the surgery!! So as of now, Gracie does not have tubes in her ears and the surgery has not yet been rescheduled.
As for her overall progress- she is really doing well. She has been healthy! She is learning to get around!! She doesn't venture all over the house like a typical child her age that can see far and wide, but considering her seeing handicap she is doing QUITE well. She pulls herself up on furniture, she interacts with her siblings, she half crawls, half scoots with her head and makes her way from one area of the room to another. She is very social with us her family, but when others talk to her she often puts her thumb in her mouth and lays her head on the shoulder of the person carrying her. We've discovered recently that she loves to be outside. She also loves when we sing (more on that below).
"Holy Moments" w/ Gracie-
Gracie absolutely loves when I sing to her. I have started recently to intentionally sit on the rocking chair at some point in my crazy day and just rock her and sing. I really love to sing to begin with, so now I finally found someone that really appreciates it.:) I often sing old hymns that I grew up singing in church- Amazing Grace, Just As I Am, My Hope is Built on Nothing Less, and many more. Gracie simply positions herself, head tilted, and looks directly in my face and watches me for as long as I'm willing to sing. And you know what? Time stands still!! And Gracie and I worship together. I refer to these times as "Holy Moments". I have no doubt that this child will sing and worship in a powerful way one day. I also told the kids recently that if Gracie can't see well in the physical realm, she will certainly see into the spiritual realm. It will be exciting!!
The Suburban-
I find myself writing this blog right at the same time we get a call from the garage where our Suburban is once again having work done to it. And the repairmen says to Dutch when he answers the phone- "I'm afraid you don't want to hear what I have to say".
Our Suburban has served us well in that it has made many trips back and forth to Lancaster and beyond, but this vehicle has not been without its many problems. Every garage visit, or so it seems, is not a small deal- it has had rust issues, therefore causing many parts needing to be replaced. When we purchased this vehicle we would have told you that God provided it at just the right time since we needed something on rather short notice (back in 2011 when we moved to the Haft the first time). We were not planning to trade in our minivan (that never caused us any problems) until plans changed and we realized we couldn't use a truck from Twin-Mar Const. to haul our trailer back and forth. We had to have a vehicle that could pull a trailer and we knew a car dealer that had this Suburban on his lot, so it seemed like the perfect fit. We purchased it a week before we moved North. If any of you recall- the very first weekend we were planning to head back to Lancaster, this same Suburban had a major leak in the gas line. We didn't know it then, but that was one of many issues we would have with it.
I say all of this to say- pray for us that we have the wisdom to know what to do? Do we continue to fix it? Do we trade it in? I still believe God provided this Suburban, but I certainly question why it has had so many issues.
And one more thing- we had planned to take a family day tomorrow, go off-site to Cabela's, and celebrate Madison's 10th birthday. Now that the vehicle is not fixed, we may have to change all those plans, which would be disappointing for all of us... so if you think about it, say a prayer for the Suburban situation.
The Rest of Us-
As for life in general, and how we are doing overall? We are blessed, and most days we're excited about what God is doing in our lives and the people around us. Of course, we feel completely overwhelmed some days and even get burned out. We appreciate all the prayer support we can get!!!! We love hearing from our friends whether it's through FB, email or phone calls.
PS- And we're looking for someone to come serve here at The Haft with us. Is God calling you????
Be blessed!!
Tuesday, August 12, 2014
The latest on Gracie's eyes....
If you put your fingers on your eyes and held them closed part way, you would get an idea of how much Gracie sees. At our most recent visit with the ophthalmologist, the Dr. explained that at 8 wks along in the womb, the part of the eye that forms at that stage of gestation, simply didn't develop like it was supposed. So when he looks into Gracie's eyes, what would typically be a healthy eye, is in Gracie's case- undeveloped tissue. They call this coloboma. In her case, the coloboma is extensive, meaning that over half of her eyes are of no use to her. She would be considered "legally blind", but let me clarify that a person can be "legally blind" and still see something. So let me try to say this in a way that makes sense- Gracie can see, but the vision she has is not even half of what you and I have. And I don't know how clear or blurry it is. No surgery will correct it. Glasses may be a help down the road, but that is yet to be determined. Only a miracle from God will correct Gracie's eye sight.
It breaks my heart when I think about how little she sees. I do, however; choose to pick out the positive things like- she could be completely blind, but she's not!! or the fact that this is all she knows from birth so her brain and other senses will make up for her poor eyesight. I believe she will use her mind to do amazing things!!
As for our medical expenses with Gracie- someone asked recently what kind of coverage we have for all of Gracie's Dr. visits etc. Several months ago we were told by "Early Intervention" that we would most likely qualify for the PA Medical Assistance Program. We weren't sure at first if we should apply or not, but after asking several people and talking to parents of special needs children that are part of the program, we decided to apply. And because of Gracie's diagnosis she qualified. The next step was to insure that the Dr.'s we've been seeing were on the list of caregivers on the program. Thankfully they were, so all of Gracie's medical bills have been paid by the state or by the sharing program (Samaritan Ministries) that we are apart of. We are so grateful for this!! So for us personally, the only expense that we've had (and trust me it does add up) is the cost of travelling back and forth to Lanc or Delaware (DuPont Hospital) for her appts and check-ups. We try to make our trips count, and work around other plans or events that we may already scheduled to go to Lanc. for. Unfortunately, it doesn't ALWAYS work out that way.
We appreciate all the prayers on our behalf. And for all who truly care. It is our desire that Gracie's story, and her life be a testimony of God's goodness and faithfulness. Continue to believe with us for miracles for Gracie's life!!!!
It breaks my heart when I think about how little she sees. I do, however; choose to pick out the positive things like- she could be completely blind, but she's not!! or the fact that this is all she knows from birth so her brain and other senses will make up for her poor eyesight. I believe she will use her mind to do amazing things!!
As for our medical expenses with Gracie- someone asked recently what kind of coverage we have for all of Gracie's Dr. visits etc. Several months ago we were told by "Early Intervention" that we would most likely qualify for the PA Medical Assistance Program. We weren't sure at first if we should apply or not, but after asking several people and talking to parents of special needs children that are part of the program, we decided to apply. And because of Gracie's diagnosis she qualified. The next step was to insure that the Dr.'s we've been seeing were on the list of caregivers on the program. Thankfully they were, so all of Gracie's medical bills have been paid by the state or by the sharing program (Samaritan Ministries) that we are apart of. We are so grateful for this!! So for us personally, the only expense that we've had (and trust me it does add up) is the cost of travelling back and forth to Lanc or Delaware (DuPont Hospital) for her appts and check-ups. We try to make our trips count, and work around other plans or events that we may already scheduled to go to Lanc. for. Unfortunately, it doesn't ALWAYS work out that way.
We appreciate all the prayers on our behalf. And for all who truly care. It is our desire that Gracie's story, and her life be a testimony of God's goodness and faithfulness. Continue to believe with us for miracles for Gracie's life!!!!
Wednesday, July 2, 2014
Gracie: A Wildflower Child
Someone once referred to their special needs child as a "wildflower child". And I can't think of a better term to use to describe our Gracie. When I think of a wildflower I think of a flower that grows differently then a typical annual that you would plant in your flower bed. Wildflowers are so pretty, yet they grow in different places, and under different conditions.
Gracie is now 7 months old. And yes, she is growing and learning things at her own speed. In a lot of ways she's like a typical child, and yet, there are ways, because of her vision issues, that she is developing slower (and sometimes faster) then other children her age. I did not realize how much the human mind learns by seeing until I was given a child who only sees "in part". For instance, what would drive you to sit up, and put your head in space, if there was nothing to focus on or look at? It's kinda scary putting your head up not knowing completely what is around you. Wouldn't you choose to roll or scoot around on the floor too, where you can "feel" what's around you? This explains why Gracie learned at a very early age to "feel" her world by putting her butt in the air, and her head on the carpet. It "feels" safe. So one of the areas we are working on with Gracie is sitting- teaching her to feel comfortable with her head up, even though she can't see completely or feel what's around her.
Observing Gracie, the things she does and doesn't do, and why she does or doesn't do them has been so fascinating to me. Not that I have time to sit around all day and watch her :) but when I do spend quality time interacting with her I'm amazed at her world!! She, for the most part, is a happy baby. In ALOT of ways she is MUCH more content playing with toys, being in her saucer, and just plain down entertaining herself then what our Gabby ever was!!! (thank you Esther Riehl for the saucer, it has been good for strengthening her back and teaching her to hold her head). She explores the floor by rolling, scooting and almost crawling... she plays in her saucer and "feels" the different toys, she watches her own hand and she LISTENS. She knows when I walk in her bedroom to get her out of her pak n' play after a nap- not because she sees me too well, but because she hears and senses that I'm there. If you watch her eyes you will see her "scanning" a lot, when she does this, she is tracking with the vision she has and processing with her mind. I can almost "see" her little mind working sometimes.
As for Gracie's over all mental development... I can't tell you exactly where she is at compared to a "typical" 7 month old. She seems, from my view point, to be doing things on time. She seems to understand and interact with us. From what I've read of children with CHARGE syndrome, their mental ability varies from child to child, and a lot of the ones that are delayed mentally become that way because of their overall health conditions and from spending months in the hospital due to physical complications. Gracie is very fortunate to have had no hospital stays or surgeries.
What is next on the "to do" list for Gracie with her ears and eyes?? She has a follow-up appt. with the ophthalmologist (eye specialist) on Aug. 1st. I don't know what this appt. entails or what we'll find out. The first time the ophth looked in her eyes, he didn't give a lot of hope of future development. He made it sound like the hand she's been dealt is not a good one when it comes to sight and that this all happened in the womb already so it wouldn't change as she grows. BUT people have been praying for her and her eyesight, SO that means things could change. It will be interesting to see what they say at this follow-up visit!! And as for her ears- the fluid is still in her middle ear, and it is affecting the quality of hearing. This causes her to not pass her hearing test. This means Dr. O'Reilly will be putting ear tubes in, which will help the fluid to drain. They will put her to sleep to do the minor surgery. While she's asleep anyway, they will do the ABR test again to get a good read on her overall hearing. Now, I can tell you that she hears! She jumps at noise, she sleeps lightly and hears me if I walk into her room while she's napping- but how CLEARLY she hears, we do not know. Does it sounds muffled like we're talking to her under water? If so, this could affect her speech development. So again it's one of those things that we "typicals" take for granted, but for the "wildflowers" they need some assistance in some of these areas. Of course, my prayer would be that the fluid would disappear and none of these tubes, tests, etc. would be necessary, but on the other hand I do not want to be negligent. There is always the fine line of what does God want us to do in this situation?? I'll never forget what another mother of a special needs child once said about believing for healing versus accepting this to be God's will, she said- "I don't know if this is something that God wants me to cry out and ask Him to heal/change my child or is He asking me to accept this?" In other words, does He want to increase my faith and want me to see a miracle and completely heal my child or is He asking me to love this child just the way he/she is? I've come to the conclusion it's both- God wants us to ask for the miracle, believe for it, but ultimately He wants to change me by givng me the opportunity to love a wildflower child!!!!
PS- We appreciate your continued prayers for Gracie's healing, for us as we make decisions, for the Dr's that are working with Gracie, and for safety as we travel to and from her appointments.
PSS- And to the mama who referred to her special needs child as a "wildflower child"- we don't know each other and you might never read this blog, but if you do: "I hope you don't mind me borrowing the term. I don't know if you coined it yourself or heard it somewhere else, but it is a brilliant way to describe a special needs child!! And by the way- I know that your 'wildflower child' was picked for a Heavenly bouquet... I'm sure she's blooming beautifully there among all the others who have gone on before!!"
Gracie is now 7 months old. And yes, she is growing and learning things at her own speed. In a lot of ways she's like a typical child, and yet, there are ways, because of her vision issues, that she is developing slower (and sometimes faster) then other children her age. I did not realize how much the human mind learns by seeing until I was given a child who only sees "in part". For instance, what would drive you to sit up, and put your head in space, if there was nothing to focus on or look at? It's kinda scary putting your head up not knowing completely what is around you. Wouldn't you choose to roll or scoot around on the floor too, where you can "feel" what's around you? This explains why Gracie learned at a very early age to "feel" her world by putting her butt in the air, and her head on the carpet. It "feels" safe. So one of the areas we are working on with Gracie is sitting- teaching her to feel comfortable with her head up, even though she can't see completely or feel what's around her.
Observing Gracie, the things she does and doesn't do, and why she does or doesn't do them has been so fascinating to me. Not that I have time to sit around all day and watch her :) but when I do spend quality time interacting with her I'm amazed at her world!! She, for the most part, is a happy baby. In ALOT of ways she is MUCH more content playing with toys, being in her saucer, and just plain down entertaining herself then what our Gabby ever was!!! (thank you Esther Riehl for the saucer, it has been good for strengthening her back and teaching her to hold her head). She explores the floor by rolling, scooting and almost crawling... she plays in her saucer and "feels" the different toys, she watches her own hand and she LISTENS. She knows when I walk in her bedroom to get her out of her pak n' play after a nap- not because she sees me too well, but because she hears and senses that I'm there. If you watch her eyes you will see her "scanning" a lot, when she does this, she is tracking with the vision she has and processing with her mind. I can almost "see" her little mind working sometimes.
As for Gracie's over all mental development... I can't tell you exactly where she is at compared to a "typical" 7 month old. She seems, from my view point, to be doing things on time. She seems to understand and interact with us. From what I've read of children with CHARGE syndrome, their mental ability varies from child to child, and a lot of the ones that are delayed mentally become that way because of their overall health conditions and from spending months in the hospital due to physical complications. Gracie is very fortunate to have had no hospital stays or surgeries.
What is next on the "to do" list for Gracie with her ears and eyes?? She has a follow-up appt. with the ophthalmologist (eye specialist) on Aug. 1st. I don't know what this appt. entails or what we'll find out. The first time the ophth looked in her eyes, he didn't give a lot of hope of future development. He made it sound like the hand she's been dealt is not a good one when it comes to sight and that this all happened in the womb already so it wouldn't change as she grows. BUT people have been praying for her and her eyesight, SO that means things could change. It will be interesting to see what they say at this follow-up visit!! And as for her ears- the fluid is still in her middle ear, and it is affecting the quality of hearing. This causes her to not pass her hearing test. This means Dr. O'Reilly will be putting ear tubes in, which will help the fluid to drain. They will put her to sleep to do the minor surgery. While she's asleep anyway, they will do the ABR test again to get a good read on her overall hearing. Now, I can tell you that she hears! She jumps at noise, she sleeps lightly and hears me if I walk into her room while she's napping- but how CLEARLY she hears, we do not know. Does it sounds muffled like we're talking to her under water? If so, this could affect her speech development. So again it's one of those things that we "typicals" take for granted, but for the "wildflowers" they need some assistance in some of these areas. Of course, my prayer would be that the fluid would disappear and none of these tubes, tests, etc. would be necessary, but on the other hand I do not want to be negligent. There is always the fine line of what does God want us to do in this situation?? I'll never forget what another mother of a special needs child once said about believing for healing versus accepting this to be God's will, she said- "I don't know if this is something that God wants me to cry out and ask Him to heal/change my child or is He asking me to accept this?" In other words, does He want to increase my faith and want me to see a miracle and completely heal my child or is He asking me to love this child just the way he/she is? I've come to the conclusion it's both- God wants us to ask for the miracle, believe for it, but ultimately He wants to change me by givng me the opportunity to love a wildflower child!!!!
PS- We appreciate your continued prayers for Gracie's healing, for us as we make decisions, for the Dr's that are working with Gracie, and for safety as we travel to and from her appointments.
PSS- And to the mama who referred to her special needs child as a "wildflower child"- we don't know each other and you might never read this blog, but if you do: "I hope you don't mind me borrowing the term. I don't know if you coined it yourself or heard it somewhere else, but it is a brilliant way to describe a special needs child!! And by the way- I know that your 'wildflower child' was picked for a Heavenly bouquet... I'm sure she's blooming beautifully there among all the others who have gone on before!!"
Thursday, May 29, 2014
Gracie update
Last week I took Gracie to see Dr. O'Reilly, the ENT at DuPont, concerning her ears. This visit was necessary because she didn't pass her hearing test several wks ago. If you remember from one of my earlier posts, I mentioned that the Dr. that performed the hearing test said she felt like things were developed inside the ear, but the reason she didn't pass the test was because of fluid in her ears. So the test last wk. was a follow-up visit to see if we should put tubes in her ears to drain the fluid build up. However, when Dr. O'Reilly looked in her ears last week he said- "She only has fluid in one ear."
To which replied- "Well, we do have people praying for Gracie, so maybe that's why the fluid disappeared in her one ear."
His response- "Yeah maybe that made a difference. Probably depends who you have praying though."
Me- "What do you mean by that?"
"Well", he said, "If I'd (meaning himself) be the one praying it probably wouldn't make a difference. Him (meaning God) & I aren't really on good terms right now."
I said something like- "Oh! Well, you might want to work on that."
And he replied, "Yeah, I've been trying."
The conversation was lite and mostly said in a humorous, joking way, but basically he was saying that he doesn't have a relationship with God right now. I do hope that every encounter like that on our "Gracie Journey" can plant a seed in the lives of the people we come in contact with, and will spark an interest in them coming to know Jesus in a personal way.
As for the next step w/ her ears- Dr. O'Reilly wants to see her again in a month and possibly redo the hearing test before going ahead with tubes. That means another trip to Lancaster in June, but this time we won't have to go to DuPont- we can get an appt. with this same Dr. at Dr. Morton's office in Strasburg.
I also want to mention a little about Gracie's over all progress. She now has a therapist that comes out once a week for an hr. We work mostly with her on her vision. I can tell you this- Gracie can see to some extent. Even though her eyes don't always co-operate for her, she does have a certain way of holding her head and you can see that she is tracking things. The therapist put it this way on Wed. when she was here- "she has low vision, not no vision." We are grateful for this!! Even though we don't know exactly what or how much she sees, we do know that her world is not completely dark.
And her motor skills- wow! she gets around. She entertains herself for long periods of time by being on the floor, standing on her feet with her butt in the air, her head on the floor and scooting around like that. She also gets herself in the crawling position, but she hasn't actually crawled yet. She is also working on the sitting position.
Gracie is so lovable and cuddly- we love her dearly. Thank you for praying for Gracie and us!!
PS- "thank you" to my sister Sue for going with me to DuPont last wk.!!
To which replied- "Well, we do have people praying for Gracie, so maybe that's why the fluid disappeared in her one ear."
His response- "Yeah maybe that made a difference. Probably depends who you have praying though."
Me- "What do you mean by that?"
"Well", he said, "If I'd (meaning himself) be the one praying it probably wouldn't make a difference. Him (meaning God) & I aren't really on good terms right now."
I said something like- "Oh! Well, you might want to work on that."
And he replied, "Yeah, I've been trying."
The conversation was lite and mostly said in a humorous, joking way, but basically he was saying that he doesn't have a relationship with God right now. I do hope that every encounter like that on our "Gracie Journey" can plant a seed in the lives of the people we come in contact with, and will spark an interest in them coming to know Jesus in a personal way.
As for the next step w/ her ears- Dr. O'Reilly wants to see her again in a month and possibly redo the hearing test before going ahead with tubes. That means another trip to Lancaster in June, but this time we won't have to go to DuPont- we can get an appt. with this same Dr. at Dr. Morton's office in Strasburg.
I also want to mention a little about Gracie's over all progress. She now has a therapist that comes out once a week for an hr. We work mostly with her on her vision. I can tell you this- Gracie can see to some extent. Even though her eyes don't always co-operate for her, she does have a certain way of holding her head and you can see that she is tracking things. The therapist put it this way on Wed. when she was here- "she has low vision, not no vision." We are grateful for this!! Even though we don't know exactly what or how much she sees, we do know that her world is not completely dark.
And her motor skills- wow! she gets around. She entertains herself for long periods of time by being on the floor, standing on her feet with her butt in the air, her head on the floor and scooting around like that. She also gets herself in the crawling position, but she hasn't actually crawled yet. She is also working on the sitting position.
Gracie is so lovable and cuddly- we love her dearly. Thank you for praying for Gracie and us!!
PS- "thank you" to my sister Sue for going with me to DuPont last wk.!!
Saturday, May 24, 2014
Chocolate Lab Puppies
For Sale - Choc Lab Puppies
For what it's worth I decided to post this on my blog. :)
We have choc lab puppies for sale.
They're registered ACA- they're English choc labs.
Currently 7 wks old. Ready for good homes on June 1, 2014.
1st round of shots and wormed.
6 females
4 males
Asking $650
Many people say to advertise them on Greenfield Puppies but I was hoping to sell them w/o doing that:) :) so if you know of anyone looking for a puppy send them our way!!
570.363.2405
PS- I'll be posting a Gracie update soon...
Friday, May 16, 2014
She's strong
I'm posting this video for those of you who don't have Facebook. Hopefully you'll be able to watch it. This is the kind of stuff Gracie has been doing on the floor for a month already. She spends a lot of time exploring on the floor.
Wednesday, April 30, 2014
PAMPERED CHEF HAFT WISH LIST
PAMPERED CHEF HAFT WISH LIST
Sorry I should have explained this post for those of you that do not have FB...I am hosting a Pampered Chef show to benefit the Haft kitchen. Any of these items can be ordered through me or my online party link. Or people can order items for themselves and the credits benefit the Haft.
Quantity for items
are all (1) unless otherwise noted in parenthesis
#1088 – Professional Shears pg. 25 -- $26.50
#1755 – Chef’s Silicone Basting Brush pg. 42 -- $10.00
#2071 – Small Spreader pg. 54 -- $6.50
#1642 – All Purpose Spreader pg. 54 -- $6.00
#2622 – Mini Serving Spatula pg. 54 -- $6.50 (2)
#2626 – Lg. Serving Spatula pg. 54 -- $10.50
#2981 – Microfiber Towel pg. 59 -- $9.00 (2)
#1321 – Deep Dish Covered Baker pg. 36 -- $88.00
#3081 – Small Round Bowls pg. 46 -- $18.00 (2)
#3084 – Round Serving Bowls pg. 46 -- $18.00 (2)
#1678 – Spoon Rest pg. 17 -- $12.00
#2340 – Small Turner pg. 19 -- $5.50
#1182 - Egg Slicer pg 29 -- $13.00
#1054 – Chef’s Knife pg. 30 -- $79.00
#1055 – Bread Knife pg. 30 -- $69.00
A day at DuPont
DuPont hospital is situated among the horse farms of Wilmington DE., or so it seemed to me as we sipped our coffee and made our way through the scenic route to get there. :) I had never been there before, and I was genuinely impressed with the facility and the service. I thought the valet parking was an added bonus.
Yesterday was the day that we were scheduled to do a series of tests/ultrasounds on Gracie to be sure she didn't have any more of the conditions, that can be tied to the CHARGE syndrome, that we were not aware of. The letters in the word CHARGE stand for a number of body functions that can be affected by having the syndrome. C=coloboma (eyes), H=heart, A=atresia choanae (closed area in nasal passage) R=retardation of GROWTH or development (I did NOT say they are retarded :), it simply means their growth and development may be slow) G=genital abnormalities, E=ear abnormalities.
We arrived at the hospital at 8:00 a.m. and made our way to the cardiology unit. We filled out the usual papers and shortly after were called into the Dr. office where they gave us a little hospital gown to put on Gracie. She cooperated for most of the things the nurse wanted to check- weight, length etc. and did well for the EKG, but she had an issue with the whole blood pressure procedure (cutest little blood pressure cuff ever). After this the Dr. ordered the ultrasound part of the appt. to be done. Dutch and I worked together to keep Gracie entertained and tried to keep her from grabbing the ultrasound technicians hand etc. All in all Gracie was fairly cooperative through the procedure. I didn't realize how much I was holding my breath about the outcome of this test until I left out a sigh of relief when the Dr. said- "Her heart looks great. It looks normal for a 5 month old. I see no complications relating to CHARGE syndrome". Praise the Lord!! I guess thinking of living here at the Haft and having to have Gracie go through any major or minor heart surgery seemed a little overwhelming to me. How would we juggle everything? So it was a big relief to know that she doesn't have any heart condition. The next appt. was to check her kidneys, not that that's one of the major things they find affecting CHARGE syndrome, but more because its something that in general can be affected by genetic disorders. But "Sue" our ultrasound tech assured us that she has two kidneys, and they're in the right place!! Another good report!! The last test was her ears. Now we were quite certain she could hear to some extent but were not sure how much etc. This test was a 2 hr. test where they put the little stickers on her- behind her ears, and on her forehead, and there are wires they connect to this and they do a computerized test of sound waves etc. (glad somebody understands that stuff and knows what they're doing, it was just a bunch of squiggly lines to me). We needed her to be still or sleep for this procedure to get a really good reading. I was hoping she would do just that, but babies can be unpredictable... praise the Lord she slept/nursed the whole way through. The outcome was this- the inner ear etc.is developed, she doesn't show signs of underdevelopment and that is great news. She does, however; show signs of her earing being somewhat impaired right now, but the tech was fairly sure that was because she has fluid laying in there that needs to be drained. Tubes inserted in her ears will most likely be something she will need in the near future. So, in other words, her hearing is probably muffled right now, but it doesn't look like permanent hearing loss. Oh and a bonus to this appt was that the Dr. that did this test was a Christian, and she shared a piece of her testimony and of how God had worked in her life. We invited her to come to the Haft, and she "you haven't seen the last of me". Those are the kind of things we are always looking for on our life journey and especially through the journey we are on with Gracie. God moments! Divine appointments!
Thank you all for caring and praying. The texts etc. mean so much. Thank you. It was a good day!
Yesterday was the day that we were scheduled to do a series of tests/ultrasounds on Gracie to be sure she didn't have any more of the conditions, that can be tied to the CHARGE syndrome, that we were not aware of. The letters in the word CHARGE stand for a number of body functions that can be affected by having the syndrome. C=coloboma (eyes), H=heart, A=atresia choanae (closed area in nasal passage) R=retardation of GROWTH or development (I did NOT say they are retarded :), it simply means their growth and development may be slow) G=genital abnormalities, E=ear abnormalities.
We arrived at the hospital at 8:00 a.m. and made our way to the cardiology unit. We filled out the usual papers and shortly after were called into the Dr. office where they gave us a little hospital gown to put on Gracie. She cooperated for most of the things the nurse wanted to check- weight, length etc. and did well for the EKG, but she had an issue with the whole blood pressure procedure (cutest little blood pressure cuff ever). After this the Dr. ordered the ultrasound part of the appt. to be done. Dutch and I worked together to keep Gracie entertained and tried to keep her from grabbing the ultrasound technicians hand etc. All in all Gracie was fairly cooperative through the procedure. I didn't realize how much I was holding my breath about the outcome of this test until I left out a sigh of relief when the Dr. said- "Her heart looks great. It looks normal for a 5 month old. I see no complications relating to CHARGE syndrome". Praise the Lord!! I guess thinking of living here at the Haft and having to have Gracie go through any major or minor heart surgery seemed a little overwhelming to me. How would we juggle everything? So it was a big relief to know that she doesn't have any heart condition. The next appt. was to check her kidneys, not that that's one of the major things they find affecting CHARGE syndrome, but more because its something that in general can be affected by genetic disorders. But "Sue" our ultrasound tech assured us that she has two kidneys, and they're in the right place!! Another good report!! The last test was her ears. Now we were quite certain she could hear to some extent but were not sure how much etc. This test was a 2 hr. test where they put the little stickers on her- behind her ears, and on her forehead, and there are wires they connect to this and they do a computerized test of sound waves etc. (glad somebody understands that stuff and knows what they're doing, it was just a bunch of squiggly lines to me). We needed her to be still or sleep for this procedure to get a really good reading. I was hoping she would do just that, but babies can be unpredictable... praise the Lord she slept/nursed the whole way through. The outcome was this- the inner ear etc.is developed, she doesn't show signs of underdevelopment and that is great news. She does, however; show signs of her earing being somewhat impaired right now, but the tech was fairly sure that was because she has fluid laying in there that needs to be drained. Tubes inserted in her ears will most likely be something she will need in the near future. So, in other words, her hearing is probably muffled right now, but it doesn't look like permanent hearing loss. Oh and a bonus to this appt was that the Dr. that did this test was a Christian, and she shared a piece of her testimony and of how God had worked in her life. We invited her to come to the Haft, and she "you haven't seen the last of me". Those are the kind of things we are always looking for on our life journey and especially through the journey we are on with Gracie. God moments! Divine appointments!
Thank you all for caring and praying. The texts etc. mean so much. Thank you. It was a good day!
Friday, April 25, 2014
She's a joy... Keep praying...
Many people have heard about or read "Gracie's Story". Many people are praying for her and our family, and for that we are so grateful. Gracie is truly a joy at this stage of life. She loves her swing and she loves to be on the floor rolling all around from her belly to back, and back to belly. She has been doing this for several weeks already so it seems like she may be a little ahead for her age in that area. An area that I have noticed that she may be slightly lagging in developmentally is sitting. A simple prayer request is that her back muscles be strengthened so she's able to hold her weight and sit. Other areas that we are praying for Gracie and we invite you to join us are- that her body comes in complete alignment with the WORD of God, that her hearing will be excellent, her heart will have no complications, and we even pray that when they do the lab testing to officially diagnose her with CHARGE syndrome that they won't even find a mutated gene, but that her genes will be perfect in every way. The verse that God has put on my heart recently is that "HE is able to do exceedly, abundantly above all that we can ask or think"!!
We are always looking for the big and "little" things in Gracie's development. The other day she put her hand in front of her face and it truly looked like she was focusing on it and tracking it. These are all huge to a mama & daddy who have been told that their child may not be able to see.
We have to spend the better part of Tuesday April 29 at DuPont Hospital in Delaware doing some tests. We will be testing cardio (heart), audio (ears), and medical imaging. We realize that these tests could reveal complications that will require us to make major decisions, but as I mentioned we're praying that God heals and REVEALS things all along the journey. Pray for safe travels, divine appts, and cooperation from Gracie.
Tuesday, April 8, 2014
He cares about the details-
On the dresser in my bedroom is a piece of paper that says "PA Early Intervention" and it has a phone number on it. Dr. Williams gave it to me last week and said- "You will want to call them at some point. Maybe tomorrow, maybe next week, or maybe in a couple months."
"Early Intervention" is a free program offered by the state. It offers therapists etc. who will come to your house and work with your special needs child. I wondered what kind of therapists we might find in the hills of Bradford Co.? Would it be someone I was comfortable with? Would I be happy with what he/she had to offer etc. So I was hesitant to make the call... processing that fact that someone would come to my house, sit on my floor or wherever and work with Gracie. I knew it would probably be a good thing for her, but did I really need to go through with it. You got to know me, I don't like appointments, not big on strict schedules and that type of thing. Having people come in and out of my house would be a big adjustment. So I hesitate. And pray about it.
Enter Sunday night.
I'm down at the barn, pulling leftovers out of the fridge to offer to the youth group that uses the barn every Sunday for a place to gather. I'm talking to one of the ladies, Lori is her name, she attends Living Hope Fellowship, the church we attend up here when we're not busy w/ a retreat or guests. She says, "Hey I read your blog about Gracie. And you really need to talk to Trishia Winehardt tonight, she's teaching the young adults in the lounge, she works for "Early Intervention" and has worked with kids w/ CHARGE syndrome."
Me: "Really? Are you serious? Is this her region? Would she be our EI person?"
Lori: "I'm not sure what area she covers, but you really need to connect with her. And from what I hear her co-workers are really great people too."
So I stuck around until youth group was over. And I talked to Trishia. And I marvel at God and His cool ways!! As it turns out, this is in fact Trishia's region, and there is a really good chance that she would be one of Gracie's therapists. And while I don't know Trishia that well I feel really good about having her work with Gracie and getting to know her better myself. She seemed passionate about what she does. And she was so encouraging!! She said that the brain can be trained to make up for what the eye cannot see!! She gave me the phone number to call the Brad/Sull Co branch of Early Intervention directly, saving me from having to make unnecessary phones till I connect with the right region.
I totally felt like this connection was a "God thing"- a confirmation to me to make that phone call. So thanks to all of you who are praying! God really does care about ALL the details!!
"Early Intervention" is a free program offered by the state. It offers therapists etc. who will come to your house and work with your special needs child. I wondered what kind of therapists we might find in the hills of Bradford Co.? Would it be someone I was comfortable with? Would I be happy with what he/she had to offer etc. So I was hesitant to make the call... processing that fact that someone would come to my house, sit on my floor or wherever and work with Gracie. I knew it would probably be a good thing for her, but did I really need to go through with it. You got to know me, I don't like appointments, not big on strict schedules and that type of thing. Having people come in and out of my house would be a big adjustment. So I hesitate. And pray about it.
Enter Sunday night.
I'm down at the barn, pulling leftovers out of the fridge to offer to the youth group that uses the barn every Sunday for a place to gather. I'm talking to one of the ladies, Lori is her name, she attends Living Hope Fellowship, the church we attend up here when we're not busy w/ a retreat or guests. She says, "Hey I read your blog about Gracie. And you really need to talk to Trishia Winehardt tonight, she's teaching the young adults in the lounge, she works for "Early Intervention" and has worked with kids w/ CHARGE syndrome."
Me: "Really? Are you serious? Is this her region? Would she be our EI person?"
Lori: "I'm not sure what area she covers, but you really need to connect with her. And from what I hear her co-workers are really great people too."
So I stuck around until youth group was over. And I talked to Trishia. And I marvel at God and His cool ways!! As it turns out, this is in fact Trishia's region, and there is a really good chance that she would be one of Gracie's therapists. And while I don't know Trishia that well I feel really good about having her work with Gracie and getting to know her better myself. She seemed passionate about what she does. And she was so encouraging!! She said that the brain can be trained to make up for what the eye cannot see!! She gave me the phone number to call the Brad/Sull Co branch of Early Intervention directly, saving me from having to make unnecessary phones till I connect with the right region.
I totally felt like this connection was a "God thing"- a confirmation to me to make that phone call. So thanks to all of you who are praying! God really does care about ALL the details!!
Wednesday, April 2, 2014
A diagnosis...
We took Gracie to see Dr. Ladda at Hershey Medical Center on Monday. He looked her over from head to toe. He had a name for her "syndrome". Clinically she was diagnosed w/ CHARGE syndrome. But in reality Gracie hasn't changed from the baby we've been loving for the past 4 months. The funny thing is that my mind wanted to change the way I see her, but then I caught myself. ShaLyn asked me if this means Gracie is a "special needs" child. I responded that it does, BUT doesn't every child have "special needs"? No two children are alike, they're all special- they all have needs.
"Well, mom, will she be normal"?
"I don't know... what IS normal anyway"?? She will be "Gracie's normal" and what that looks like, remains to be seen. Of all the things that can be affected by having this syndrome the only thing we know that Gracie has is the coloboma (which is the part that affects her vision), the 7th nerve palsy (which affects her facial nerve- its what you see when she cries), and ears that look slightly different externally but as far as we know know they can hear. The fact that she is small and gains weight slowly, may or may not be a result of the syndrome.
We will need to take Gracie to see several specialists over the next few months. And we are so grateful to have Dr. Katie Willaims to help us schedule and walk through all of that. As of now we know very little about what she can or cannot see. She squinted in the sunlight the other day and something so simple as that made this mama heart smile. That means she sees some light!!! We also notice how often she holds onto a blanket, or our clothes when we hold her... she "sees" with her hands. I love to hold her close to my face, she will put her hands on my face to feel it. Touch will be important to her learning about her world. Hearing will be important as well.
As for how Dutch and I feel personally with it all- our hearts are at peace. We believe in healing, we believe in "inner" healing, we believe that ALL things work together for good to those who are called according to his purpose. We also know that there is power in a spoken word. We choose are words for Gracie's situation carefully. We are choosing words of life. We also realize that this journey isn't just about Gracie, it's for us- to teach us, stretch us, draw us. Personally it is teaching me to trust- to trust God, to trust my husband, to trust myself. Its teaching to me to love, to let go, and to live more fully. I'm learning to embrace pain all the while believing for miracles.....
"Well, mom, will she be normal"?
"I don't know... what IS normal anyway"?? She will be "Gracie's normal" and what that looks like, remains to be seen. Of all the things that can be affected by having this syndrome the only thing we know that Gracie has is the coloboma (which is the part that affects her vision), the 7th nerve palsy (which affects her facial nerve- its what you see when she cries), and ears that look slightly different externally but as far as we know know they can hear. The fact that she is small and gains weight slowly, may or may not be a result of the syndrome.
We will need to take Gracie to see several specialists over the next few months. And we are so grateful to have Dr. Katie Willaims to help us schedule and walk through all of that. As of now we know very little about what she can or cannot see. She squinted in the sunlight the other day and something so simple as that made this mama heart smile. That means she sees some light!!! We also notice how often she holds onto a blanket, or our clothes when we hold her... she "sees" with her hands. I love to hold her close to my face, she will put her hands on my face to feel it. Touch will be important to her learning about her world. Hearing will be important as well.
As for how Dutch and I feel personally with it all- our hearts are at peace. We believe in healing, we believe in "inner" healing, we believe that ALL things work together for good to those who are called according to his purpose. We also know that there is power in a spoken word. We choose are words for Gracie's situation carefully. We are choosing words of life. We also realize that this journey isn't just about Gracie, it's for us- to teach us, stretch us, draw us. Personally it is teaching me to trust- to trust God, to trust my husband, to trust myself. Its teaching to me to love, to let go, and to live more fully. I'm learning to embrace pain all the while believing for miracles.....
Friday, March 28, 2014
Gracie's Story
Gracie's story is actually a glance at my personal journey over the past few months since our little Gracie joined our family. From the first moment I saw her crying I had questions. I looked at my midwife and said "Why are her eyes doing that"? By "doing that" I mean- one eye was wide open while she cried and the other was closed. The eyeball in the open eye was rolling up toward her head, and it just didn't look quite right.
My midwife wasn't sure why, and not wanting to concern me, she didn't say much about it. We looked her over, as is typical when you have a newborn. She was fine except that her one ear was a little different looking too. Again I questioned it, and the midwife wondered if anyone else in the family had an ear like that, to which I replied- "Not that I know of."
We washed her, weighed her, and the midwife confirmed she was a healthy baby. I took her to bed with me and started to feed her, she had a bit of trouble latching on but the midwife was confident that she would figure it out and again assured me she's okay. Dutch and I prayed, thanking God for our new baby, and dedicated her back to Him. Then baby and I went to sleep for the night.
Now lets just say that iPhones are a good thing sometimes and a not so good thing other times. I did not own a smart phone back when I had my other babies so I didn't sit and do research while I nursed back then. But this time around, with a few questions in my mind about my baby and a handy iPhone at my disposal I would feed baby and google my questions. By the second day I had nearly convinced myself that Gracie had some kind of genetic disorder, and I told Dutch what I was thinking. Being levelheaded and remembering that a postpartum mama's mind is dangerously weak he reassured everything was fine, and if it wasn't, we were gonna love her anyway (which was never a question in my mind), but it can be overwhelming when you have questions about the wellbeing of your child. Nevertheless, I mentioned my concerns about Gracie to my midwife in a phone conversation a few days later and she agreed with me that it would be good to have a medical Dr. have a look at Gracie. So I, the person who is NOT quick to go to a medical Dr. for anything- much less one I had never been to before, consented to having the midwife schedule an appt. for us the following week. So when Gracie was one week old we took her to see Dr. Joseph Cama, whose office is in Towanda, approx. 30 minutes from here. Let me interject here that at this point (when she was around a week old) I was starting to think the appt. wasn't necessary. Her ear had taken on a much better shape and didn't look nearly as "low lying" as I had originally thought and her eye issue only showed up when she cried. When I say "eye issue" I'm referring to the fact that she cried with her right eye wide open and the left one tightly closed. By looking at her when she cried, we would have guessed that something was wrong with the left side of her face...
So even though I wanted to back out of the appt., Dutch and I, at the strong urging of the midwife, agreed to go through with it. Dr. Cama took one look at that crying face and said- "There's nothing wrong with the left side of her face. It's the right side. You see, most peoples faces do wrinkle up when they're crying." He said, "She has what we call 7th Nerve Palsy." And went on to explain that sometimes a facial nerve gets compressed (usually in a traumatic birth, which Gracie did not have) at the time of birth. If you've ever seen an adult w/ Bell's Palsy you know what this looks like. One side of the face doesn't show expression, a person smiles lopsided etc. He informed us that it should go away by the time Gracie is two or three months old. As for the ear, by this time it didn't look abnormal and he wasn't concerned about it. He was a little concerned that she had gone back nearly a pound from her birth weight and wanted me to keep an eye on that over the next couple wks. We did keep an eye on it, and the mid-wife became concerned when she weighed her several times over the next few weeks and her weight hadn't changed much.
I continued having my motherly concerns from time to time, never feeling completely convinced that there wasn't something "special" or "different" about her. When she was 6 weeks old, I pointed out to Dutch that her eyes do not focus. She never looked at your face and held your gaze. Again I researched it and found a name for "dancing eyes". It was called nystagmus- involuntary movement of the eye. Nystagmus can be a condition in and of itself or it can be an indication of an underlying issue. I decided this new discovery about her eyes called for another trip to the Dr. So I made another appt. It didn't take long for the Dr. to see what I was seeing- and he said that we needed to see an ophthalmologist- an eye specialist. He made an appt. for me with one in the Sayre area, but the appt. wasn't until May 16th. That's a little too long to wait when your hoping for answers. I talked to my sister about it because she has a son that sees an opthamologist in the Lanc. area. She recommended Dr. Klombers at the Lancaster Health Campus. I made an appt. for April 8th, but told the receptionist I was going to pray for a cancellation for March 25th (because I was going to be in Lanc. that day anyway) and I discovered that if you're going to ask in faith then you better be prepared. You had better pack and prepare ahead of time as though you will get a phone call saying we have an opening. To make a long story short- Dr. Klombers office called me at 9:50 on March 25th to tell me that they had an opening if I could be there by 1:15. Keep in mind I have a 3 hr drive, and my plan was to leave for Lanc. at 1:00 in the afternoon. Well I arrived at Dr. Klombers office at 1:24. Not too bad:):)
I want to wrap up this post by telling you that Gracie's story is the start of a new journey for us. I will tell you what the ophthalmologist said and will keep you informed along the journey. The news I received on Tuesday was not what I wanted to hear, and we are still processing it. In looking into the back of Gracies eyes, Dr. Klombers said she has "Coloboma" and some things were underdeveloped in the back of her eyes. He doesn't know how much Gracie can see. He said her chances of reading are slim. He said Coloboma can be linked to another syndrome, something genetic... possibly with other complications.... we will need to see a genetic Dr. in Hershey in the near future.
So I am writing this blog to inform you all of the journey we are on. The unknown looks scary. We ask that you pray for us. We are embracing this journey knowing it can mold us, shape us, and ultimately change us- all for God's honor and glory. I do not say that to sound like we don't feel the pain, we do. It broke my heart to hear what the Dr. said, but we do have a peace. God is already working in our hearts through Gracie. She will teach us to love deeper than we have ever loved. It will teach us to pray in faith like we've never prayed and quite possibly feel pain we've never felt before- not because we're numb to pain but because we've never faced something like this before. And ultimately it will bring us closer to the Father!!!
My midwife wasn't sure why, and not wanting to concern me, she didn't say much about it. We looked her over, as is typical when you have a newborn. She was fine except that her one ear was a little different looking too. Again I questioned it, and the midwife wondered if anyone else in the family had an ear like that, to which I replied- "Not that I know of."
We washed her, weighed her, and the midwife confirmed she was a healthy baby. I took her to bed with me and started to feed her, she had a bit of trouble latching on but the midwife was confident that she would figure it out and again assured me she's okay. Dutch and I prayed, thanking God for our new baby, and dedicated her back to Him. Then baby and I went to sleep for the night.
Now lets just say that iPhones are a good thing sometimes and a not so good thing other times. I did not own a smart phone back when I had my other babies so I didn't sit and do research while I nursed back then. But this time around, with a few questions in my mind about my baby and a handy iPhone at my disposal I would feed baby and google my questions. By the second day I had nearly convinced myself that Gracie had some kind of genetic disorder, and I told Dutch what I was thinking. Being levelheaded and remembering that a postpartum mama's mind is dangerously weak he reassured everything was fine, and if it wasn't, we were gonna love her anyway (which was never a question in my mind), but it can be overwhelming when you have questions about the wellbeing of your child. Nevertheless, I mentioned my concerns about Gracie to my midwife in a phone conversation a few days later and she agreed with me that it would be good to have a medical Dr. have a look at Gracie. So I, the person who is NOT quick to go to a medical Dr. for anything- much less one I had never been to before, consented to having the midwife schedule an appt. for us the following week. So when Gracie was one week old we took her to see Dr. Joseph Cama, whose office is in Towanda, approx. 30 minutes from here. Let me interject here that at this point (when she was around a week old) I was starting to think the appt. wasn't necessary. Her ear had taken on a much better shape and didn't look nearly as "low lying" as I had originally thought and her eye issue only showed up when she cried. When I say "eye issue" I'm referring to the fact that she cried with her right eye wide open and the left one tightly closed. By looking at her when she cried, we would have guessed that something was wrong with the left side of her face...
So even though I wanted to back out of the appt., Dutch and I, at the strong urging of the midwife, agreed to go through with it. Dr. Cama took one look at that crying face and said- "There's nothing wrong with the left side of her face. It's the right side. You see, most peoples faces do wrinkle up when they're crying." He said, "She has what we call 7th Nerve Palsy." And went on to explain that sometimes a facial nerve gets compressed (usually in a traumatic birth, which Gracie did not have) at the time of birth. If you've ever seen an adult w/ Bell's Palsy you know what this looks like. One side of the face doesn't show expression, a person smiles lopsided etc. He informed us that it should go away by the time Gracie is two or three months old. As for the ear, by this time it didn't look abnormal and he wasn't concerned about it. He was a little concerned that she had gone back nearly a pound from her birth weight and wanted me to keep an eye on that over the next couple wks. We did keep an eye on it, and the mid-wife became concerned when she weighed her several times over the next few weeks and her weight hadn't changed much.
I continued having my motherly concerns from time to time, never feeling completely convinced that there wasn't something "special" or "different" about her. When she was 6 weeks old, I pointed out to Dutch that her eyes do not focus. She never looked at your face and held your gaze. Again I researched it and found a name for "dancing eyes". It was called nystagmus- involuntary movement of the eye. Nystagmus can be a condition in and of itself or it can be an indication of an underlying issue. I decided this new discovery about her eyes called for another trip to the Dr. So I made another appt. It didn't take long for the Dr. to see what I was seeing- and he said that we needed to see an ophthalmologist- an eye specialist. He made an appt. for me with one in the Sayre area, but the appt. wasn't until May 16th. That's a little too long to wait when your hoping for answers. I talked to my sister about it because she has a son that sees an opthamologist in the Lanc. area. She recommended Dr. Klombers at the Lancaster Health Campus. I made an appt. for April 8th, but told the receptionist I was going to pray for a cancellation for March 25th (because I was going to be in Lanc. that day anyway) and I discovered that if you're going to ask in faith then you better be prepared. You had better pack and prepare ahead of time as though you will get a phone call saying we have an opening. To make a long story short- Dr. Klombers office called me at 9:50 on March 25th to tell me that they had an opening if I could be there by 1:15. Keep in mind I have a 3 hr drive, and my plan was to leave for Lanc. at 1:00 in the afternoon. Well I arrived at Dr. Klombers office at 1:24. Not too bad:):)
I want to wrap up this post by telling you that Gracie's story is the start of a new journey for us. I will tell you what the ophthalmologist said and will keep you informed along the journey. The news I received on Tuesday was not what I wanted to hear, and we are still processing it. In looking into the back of Gracies eyes, Dr. Klombers said she has "Coloboma" and some things were underdeveloped in the back of her eyes. He doesn't know how much Gracie can see. He said her chances of reading are slim. He said Coloboma can be linked to another syndrome, something genetic... possibly with other complications.... we will need to see a genetic Dr. in Hershey in the near future.
So I am writing this blog to inform you all of the journey we are on. The unknown looks scary. We ask that you pray for us. We are embracing this journey knowing it can mold us, shape us, and ultimately change us- all for God's honor and glory. I do not say that to sound like we don't feel the pain, we do. It broke my heart to hear what the Dr. said, but we do have a peace. God is already working in our hearts through Gracie. She will teach us to love deeper than we have ever loved. It will teach us to pray in faith like we've never prayed and quite possibly feel pain we've never felt before- not because we're numb to pain but because we've never faced something like this before. And ultimately it will bring us closer to the Father!!!
Thursday, March 13, 2014
Embrace the Seasons
I've come to realize recently how important it is to look at your life and recognize the "season" that you're in. Life is about changes, things don't usually stay the same especially with a growing family. The season I find myself in right now is a busy one, almost overwhelmingly so sometimes. And I could become overwhelmed if I focus on it and think it will be this way forever, but God has showed me- this is a SEASON- a sliver of time in our life, and a lifetime in itself is short!!
The season we're in right now, God has us doing things we enjoy doing, things we talked about in the past but had no idea how they'd come about. I will repeat- "it's a busy season" almost chaotic at times, but God is giving us the grace to do what He's called us to do. Dutch & I enjoy serving people. We enjoy speaking into peoples lives. We enjoy building relationships. But all of those things take time, energy, sacrifice.
We are also in a season of parenting. Raising five children is a full time job. Raising them with a kingdom perspective, and teaching them about God in a real tangible way can be a challenge. We want them to be a part of what we're doing here, yet allow them the freedom to express how they really feel about it. We want them to travel with us when we have the opportunity to share, but realize that's a sacrifice on their part sometimes because its not a typical lifestyle. We try to make up for the time we lose with them due to serving other people, by doing something creative one day through the week because we know our "season" of raising them is short but will impact and shape their future in a big way!!!
Another season we're in is one of cramped quarters!! Seven people in a 2 bedroom house, (with hardwood floor that causes noise to be amplified instead of drowned out by carpet) is not always ideal. Our house is also a hub of other activity, one room in our basement serves as a schoolroom for the on-site kids and another room as Dutch's office. Of course, Dutch, and the craftsman that he is, has an expansion plan- a vision in his mind of using the screened in back porch area and making it into a bedroom and a bigger sitting room area. The addition wouldn't be big, but would do wonders for us. And while the budget currently keeps us from pursuing that, I've been talking to God about it, after all He owns the cattle on a thousand hills. He (God) could sell a couple beef cows and that would probably cover the cost of the project;) In the meantime we remind our children, especially our son Madison who shares a room w/ 3 of his sisters, that this is a small window of time in his life. And these things can build character, teach us lessons, shape who we are!!! Many people around the world have much less than we do.
Some days this season of life is full of questions. Are we nuts? Is the Haft really becoming what God wants it to be? How do we best serve the different people and situations that come our way? Are we really making a difference in peoples lives? Is the Father pleased with our labor? And if this is only a season, then what will the next season hold??
I say all of this to say- life is a story book. It has chapters. They all tie together to make one book, but you have to read them in order, ONE AT A TIME. Enjoy each one, don't jump ahead. You may have a good idea what the outcome will be, but there will be surprises along the way. Take your time, don't be in a hurry, the Author will wrap it all up at just the right time. And if you give up before you finish the book, you'll never know what you missed. But when you stand on the shore of Heaven and you look back at your short life on earth, you want to be able to say- "I have embraced every season, I have lived & loved well, it has not been perfect, but I have made the most of every precious day He allowed me to live." And you want to hear the Father say- "I am well pleased."
The season we're in right now, God has us doing things we enjoy doing, things we talked about in the past but had no idea how they'd come about. I will repeat- "it's a busy season" almost chaotic at times, but God is giving us the grace to do what He's called us to do. Dutch & I enjoy serving people. We enjoy speaking into peoples lives. We enjoy building relationships. But all of those things take time, energy, sacrifice.
We are also in a season of parenting. Raising five children is a full time job. Raising them with a kingdom perspective, and teaching them about God in a real tangible way can be a challenge. We want them to be a part of what we're doing here, yet allow them the freedom to express how they really feel about it. We want them to travel with us when we have the opportunity to share, but realize that's a sacrifice on their part sometimes because its not a typical lifestyle. We try to make up for the time we lose with them due to serving other people, by doing something creative one day through the week because we know our "season" of raising them is short but will impact and shape their future in a big way!!!
Another season we're in is one of cramped quarters!! Seven people in a 2 bedroom house, (with hardwood floor that causes noise to be amplified instead of drowned out by carpet) is not always ideal. Our house is also a hub of other activity, one room in our basement serves as a schoolroom for the on-site kids and another room as Dutch's office. Of course, Dutch, and the craftsman that he is, has an expansion plan- a vision in his mind of using the screened in back porch area and making it into a bedroom and a bigger sitting room area. The addition wouldn't be big, but would do wonders for us. And while the budget currently keeps us from pursuing that, I've been talking to God about it, after all He owns the cattle on a thousand hills. He (God) could sell a couple beef cows and that would probably cover the cost of the project;) In the meantime we remind our children, especially our son Madison who shares a room w/ 3 of his sisters, that this is a small window of time in his life. And these things can build character, teach us lessons, shape who we are!!! Many people around the world have much less than we do.
Some days this season of life is full of questions. Are we nuts? Is the Haft really becoming what God wants it to be? How do we best serve the different people and situations that come our way? Are we really making a difference in peoples lives? Is the Father pleased with our labor? And if this is only a season, then what will the next season hold??
I say all of this to say- life is a story book. It has chapters. They all tie together to make one book, but you have to read them in order, ONE AT A TIME. Enjoy each one, don't jump ahead. You may have a good idea what the outcome will be, but there will be surprises along the way. Take your time, don't be in a hurry, the Author will wrap it all up at just the right time. And if you give up before you finish the book, you'll never know what you missed. But when you stand on the shore of Heaven and you look back at your short life on earth, you want to be able to say- "I have embraced every season, I have lived & loved well, it has not been perfect, but I have made the most of every precious day He allowed me to live." And you want to hear the Father say- "I am well pleased."
Tuesday, February 4, 2014
Look Out -- the time has come to get back to blogging
I am keenly aware that I have not written a blog post for several months. Nor have I written a letter to send out to keep people posted/up-to-date on our lives for many, many months. I have had intentions to do both, but good intentions tend not get the job done. So I'm writing a quick blog to inform you that I will be updating the blog over the next few days... so LOOK OUT!! There's a great possibility that you will see several posts from me (probably short and sweet ones) over the next few days/weeks.
I'll make this post into a belated birth announcement-
On November 26, 2013 at 10:30 p.m. we welcomed "Gracie Cheyenne" into this world and into our home. She arrived after a 3 1/2 hr. labor. She weighed 7 lb. 10 oz. She is named after her aunts, (my two sisters), Suzanne "Grace" and "Anne". The picture I'm posting was taken in Dec. when she was several wks old. Photo credit goes to Yason Akinin my "nephew to be someday" (hopefully:))
I'll make this post into a belated birth announcement-
On November 26, 2013 at 10:30 p.m. we welcomed "Gracie Cheyenne" into this world and into our home. She arrived after a 3 1/2 hr. labor. She weighed 7 lb. 10 oz. She is named after her aunts, (my two sisters), Suzanne "Grace" and "Anne". The picture I'm posting was taken in Dec. when she was several wks old. Photo credit goes to Yason Akinin my "nephew to be someday" (hopefully:))
oops, she's winking on this one...
We love her!!
Renewed the Vows
I'm so thankful for 12 years of marriage!! I'm so glad for all that we've learned! It hasn't always been easy, and we aren't finishing learning yet, but- our love is stronger now then it was the day we got married. We have learned so much, matured so much, & grown closer to the Lord (which automatically draws us closer to each other) in the past 12 years.
Two weeks ago we had the opportunity to renew our wedding vows!! There was a pastor and his wife here sharing w/ the on-site team and we asked them if they would be willing to have a little ceremony with us so we could pledge our love & devotion to each other once again!! Only this time we got to have our children with us which was special. ShaLyn's response when we told her what we were planning to do, "I thought you guys do have a good marriage."
To which I responded, "This has nothing to do with how good or bad our marriage is. This is just something daddy and I want to know to remind each other that we're committed to the end."
We wanted our kids to share that special moment with us, to feel secure in knowing that they have parents that love each other. And it really was a special time as we lit the unity candle together.
Two weeks ago we had the opportunity to renew our wedding vows!! There was a pastor and his wife here sharing w/ the on-site team and we asked them if they would be willing to have a little ceremony with us so we could pledge our love & devotion to each other once again!! Only this time we got to have our children with us which was special. ShaLyn's response when we told her what we were planning to do, "I thought you guys do have a good marriage."
To which I responded, "This has nothing to do with how good or bad our marriage is. This is just something daddy and I want to know to remind each other that we're committed to the end."
We wanted our kids to share that special moment with us, to feel secure in knowing that they have parents that love each other. And it really was a special time as we lit the unity candle together.
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