austin said to me today" now im knowing what it's really like to not be able to walk anymore..." i am so heart broken when he says things like this. its true, today for some reason he hasn't been able to move very well. he's 10.5 and i knew he wouldn't be walking much longer, but somehow im still not ready yet. his power chair wont be here until august at the soonest, we don't have a lift on our van yet. we just finished handicap additions to the house, and the driveway still isn't level enough to get a chair up to our door... austin isn't ready yet. i asked him how it feels to him, and he said "it hurts, my legs don't work very well mom." he then asked if he was going to feel better and i dont know was the answer, he may have an easier time walking tomorrow, he did ok yesterday. or he may wake up and not be able to walk at all. im at such a loss as to what to say or do for him, he has always been so active, such a fighter, and its horrible to see him so sad and tired. i guess today is just rough.

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Comment by Penny Hauer on September 4, 2010 at 12:29pm
just read your storyabout not walking very well Caleb is going thur the same how did this thrn out could he walk after this Caleb has him chair but just cant walk much but contines to say not ready for the chair yet. went to Pt and she said what I already know that its time he can not get on the bus safetly is even worse getting off the bus. but he says no no to the chair.he asked the pt if she could make him stay in the chair she told him no to witch he was happy we just want you to be safe. dont worry I am safe that is. so I watch him fall and listen to him cry when he is to tired to go anymore he takes the chair when we go out cause he knows he cant walk but not school next question what did you do????
caleb is adopted and I have never cried about his disability but my heart is broken for him he is my baby and I love him so I know you understand the pain I do beleive in God and the power of prayer but someome like yourself could help thank you so much. Penny
Comment by Jacobs Mommom on June 27, 2009 at 8:06am
Just a thought. Maybe they can talk over the phone together and be phone pals.
Comment by jenn on June 26, 2009 at 7:11pm
thanks so much, thats why i love this website, it does help to know other moms are going through the same stuff. we have a scooter, but its bulky for me to get out of the trunk of our van into the house thats not yet totally accessible... we always use it out in public but im just not yet used to needing it all the time. thanks again for your reply... take care. oh, austin is severly dyslexic and does not read well yet, im sure he'd love a pen pal, but needs to get better at it first!
Comment by cheryl cliff on June 26, 2009 at 6:46pm
Hi Jenn,

I'm so sorry to hear your son is having a difficult time adjusting to the changes. My son, Alexander is the same age, soon to be 11. I understand how hard it is hearing those words from your son. Alexander still "walks" although we see what is coming. Can you borrow a scooter from MDA or somebody until yours arrives? If you can see if you can get one that breaks down into portable parts. Alexander really leans on having his handy. We've begun using it for more ordinary things where it was used for things like zoo trips or long walks. Alexander has some bad and some good days too and I know he feels isolated. If you want - Alexander and Austin can e-mail each other this summer.

I hope tomorrow is better for Austin.

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