The Wheelchair, Per Santina

It arrived. No, I’m not referring to Sharknado. Or Shark Week (Bad week to be a seal). We just watched part of Sharknado to see what the hype was about and we’ve been watching Shark Week this week. I’m talking about the wheelchair. We got it last week.


This is Jackson at the Perlman Center the day we got the wheelchair.

What was the worst part of the whole wheelchair process? The anticipation. I’ve been dreading it since his diagnosis. The worst was when I found out it was in and we had to go get it. I cried when I saw it for the first time. It’s a little sad because no one wants their kid to be in a wheelchair. I couldn’t stop thinking that people would look at him differently when they saw him in a wheelchair.

It’s not that big of a deal now that we have it. Jackson sits up tall, his spine is straight and he feels safe and secure in it. There’s a strap around his waist, two pieces of fabric that criss-cross over his chest and two little bars under his arms, which keep him supported and upright. There’s also a head rest to keep his neck and head supported. This specific wheelchair is called an Xpanda seat.


The wheelchair is in two parts: the seat and the base. The seat comes off and the base collapses, making it easily transportable.

The wheelchair also travels nicely throughout our house. We’ve been wheeling him from the living room to the kitchen to the bedrooms.


The wheelchair fits well against the dinner table and computer desk.


The wheelchair will make it easy to take him to a restaurant. One thing most parents don’t think about is where their child will sit in public when he can’t sit up on his own and is too big for a pumpkin seat.

The wheelchair has a tray, which is great for feeding and playing.


This is Jackson playing with his Leap Frog School Bus. The School Bus makes noise when you touch it. It’s a good cause and effect toy. When he’s in the wheelchair, it’s easy for him to hit the School Bus and get it to make noise. It’s a great way for him to play and entertain himself. I think a lot about different ways for Jackson to entertain himself. I love it when he plays with toys and I can tell he’s having a good time.

We haven’t been out in public with it yet. The first big outing will be tomorrow at my dad’s birthday party.

When you first see the wheelchair, you can stare at it. I want you to become familiar with it. You can also ask me questions about it. Again, I want you to become familiar with it and comfortable around it. I don’t want the wheelchair to be some strange, foreign thing.

It seems like I’ve been waiting forever for the wheelchair.  Now that its here, we can see its benefits and are starting to like it and its really not that bad.  Just like Tom Petty said, “the waiting is the hardest part.”


6 responses to “The Wheelchair, Per Santina

  1. I love the look on Jackson’s face in the last picture. He looks really comfortable in his new ride. You are so right about the anticipation of a dreaded event is worse then the day itself. Enjoy your first outing!!

  2. Wow, Santina your writing is so raw it moves me to tears. I’m so happy to hear about the wheelchair and its success so far. Keep up all the good work.

  3. That is one impressive and great chair. He looks so cute sitting there. People stare no matter what, but now they will see what great things are out there for our special kids.

  4. The wheel chair looks great and so does its passenger! I think it is a Godsend. Enjoy taking Jackson out in it. Looking forward to seeing you in October. Love you. Aunt Jane

  5. Hi guy,
    Baby Jackson looks great in his new chair, he appears more alert and excited. You do not have to be concerned about traveling in a wheel chair, you see them everywhere now. Paula and I worked with people that used them and they seem like second nature to us. I am excited about this new adventure for J. He will be able to see more of what is going on and will encounter many butts at this level. I always think of two year old kids that are only able to see the tall person’s butt in front of them as they walk, now J. will share that bit of distinction. By the way L. and L. plan on attending the walk at the end of this month, so I will be traveling with them also. See you then if not before. Love, Elaine

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