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!!"
