Thursday, January 24, 2008

Rough Day

We ordered her wheelchair today.
Why is that so hard on me? It is not like we are doing ANYTHING different. Our goal is still to get her to walk. We HAVE to have a wheelchair for preschool. They require all non-ambulatory kids to have one for school. That is the ONLY reason we ordered one.
Why then did I spend moments ALL day in tears?

The representative from National Seating was very nice and helpful and Nan (Brooklyn's PT) was amazing - she always is. We decided on a Zippie Wheelchair in pink with a grey seat ~ we even got Brooklyn written in pink script on it. As far as wheelchairs go it is very cute, "very girlie" she will love much as a kid that I am sure wants to get up and run with her friends can love a wheelchair.

My plan is to drop it off with her on her first day of preschool and leave it there. We have the Maclaren stroller to get her around town, we do not need the wheelchair for that. Not yet. I realize this post is coming off "anti" wheelchair. They are great things. I just do not want one. I do not want my daughter to need one.

Sorry, I am having an "I hate Rett" day. I will write more tomorrow.......


Anonymous said...

I am sorry for your tears you shed today. She will continue to walk as she does now and stronger I am sure you have to have hope and still believe. You are allowed to have a Rett Day anytime you want. You are in our thoughts and prayers today God will help you get through this time too. We miss you guys. Love The Petersons

shannon said...

I thought about you a lot today. I can't even imagine...I assumed it would be tough. I think your way of looking at the wheelchair is good. It isn't a life sentence of not walking. Brooklyn is so prayed over and her support system is out of this world! Our God is way bigger than any wheelchair. Just know you all are loved and prayed for continuously!

Kelly said...

Please know I was praying for you for a while last night. God is touching lives through your whole family. Thanks for being transparent on your blog and for teaching us things through your faith and love and lives.

Rebecca said...

We all have those "I hate Rett" qualifies as we talked to Caitlyn's teacher about the problems she will face in school if a teacher can't see past her physical limitations...I cried the day our disabled parking permit came, it almost seems funny looking back that I cried that day. Ofcourse every day that my back is killing me from lifting in and out of the car, and up and down the stairs is an "I hate Rett" day. Hang in there and we are thinking about you.

Alisa said...

We are thinking of you Brooklyn and your mom!!

I know I too cry mostly because of fear. Instead of fear, try to be guided by hope. I know it's so much easier said than done and you know what's healthy? ... having those days sometimes. You need too and don't beat yourself up over it.

You are are an incredible mom to Brooklyn. The chair sounds fit for a princess!!

hugs, Alisa, Ava and Andersen

Beth said...

Hang in there and have a good cry.
I just ordered armbraces for Kelly and I felt like I was giving up on trying to help her without them...I can't bear the thought of restricting her in any way but it's probably going to help in the long run. I felt terrible but remember there are no right or wrong feelings...they are all just human.
Take care and God bless.
Give that beautiful sleeping angel in the next post a big hug from angel Kelly

Sam and Finn said...

We can't imagine how hard this must be for you guys. Please know you are always in our thoughts and prayers.