I take Colbey Raye out in public A LOT! I always have, it’s always been extra hard for me to leave her with anyone (even my husband). This has gotten better, MUCH better and I have left her with a baby sitter once or twice and my parents, inlaws and aunts a few times too. But I like her with me, incase of that dreaded “what if?” Anyways back to what I was trying to say, I take her out and about a lot! Between therapies, doctor visits, store runs and so on! And I’m usually holding her because she can’t walk, or she’s in a stroller, shopping cart, front pack etc… But today we went to the children’s museum, and she was free to roam around without being held, tied down or strapped into something! She had a blast I have to say! And this is her 3rd time there, but today someone noticed her, and said something. Colbey Rayes inability to walk has been noticed, and as soon as a person realizes how “old” Colbey Is they say “she doesn’t walk?” So I explain. Or they try to hand her something and she reaches all around twisting trying to grab it and they say “why doesn’t she use her right arm?” Those types of questions I’ve gotten, here and there. But yesterday the conversation I had was different than any other. The question this lady asked, and the statement she made was a first for me, but probably not the last time it will happen. Our conversation:
Lady: you have three? Three (pointing at Austyn Jayne)?
Me: yes, three, and yes she’s three almost four.
Lady: two (pointing at Colbey Raye) and ? (Pointing at Beaden).
Me: she’s almost two and he is 4 months.
Lady: what school does she go to?
Me: (thinking she is talking about Austyn Jayne) I explain that we do preschool at home, and haven’t decided what route we want to take yet when she is “school age.”
Me: no lacey.
And then I realized, she was not talking about Austyn Jayne. She was talking about Colbey Raye! So
Me: are you talking about her (pointing at Colbey Raye)?
Lady: yes. Is she getting support? She needs some vision assistance.
Me: well yes, she does OT and Pt twice a week and has Speech once a week at St. Peter’s pediatric therapy center.
Lady: so she doesn’t get any help at home? Because she clearly needs support. Is she part of the birth to three program in your school?
Me: she is part of the program, and she has a cognitive teacher and vision teacher that comes to the house once to twice a month. But we have had a lot going on and her teacher is on maternity leave so we haven’t seen anyone from the program in a while. But she is getting a lot of outpatient therapy.
Lady: okay, good. So she is getting some type of support. That is good.
I explain that she had a hemispherectomy almost a year ago, and she went on to ask why. Come to find out she worked with visually impaired children as well as a psychologist for rare mental disabilities. I know she was probably trying to help, but does she think I’m oblivious to her needs? I know she needs extra help, support and assistance, and I bend backwards to get her all of the help I can get her. no one has ever told me my child needs assistance before now. It’s never come from someone as “a matter of fact” statement. I get questions like why she doesn’t walk or talk at 2! But no, “your child needs more support.” I knew it would happen one day, when Colbey Rayes set backs were more noticeable, but it was a lot harder for me than I thought. Yes, I know she has some delays and no she can’t see well, but I’m doing the very best I can for her! And she’s doing GREAT for all she’s been through. No she doesn’t walk, she doesn’t say many words, her favorite game is sit “I throw it and you pick it up for me and repeat.” But she’s come so very far. For having 2 brain surgeries, countless seizures, being on so many meds, I think it’s fair to say that Colbey Raye has overcome and accomplished so so much!! We know she “needs assistance” and with therapy 5 times a week, spending weeks in rehab and going to weekly appointments in Seattle I think (not to pat my own back) we are getting her the support she needs!
Colbey Raye is doing so well! She’s standing better each day, pulling her self to her knees and even trying to pull herself all the way up to standing! She has been having some different issues, some facial weakness again continued minor staring spells and circulation problems but all in all she is doing really good. She has begun to play more “appropriate” with toys and loves baby dolls. She’s always on the go, trying to keep up with big sister and she’s very busy learning! We are so proud of how far she has come, and we can’t wait to see how far she will go! She will run far this girl, my sweet tough little girl!