Since originally we were told Braxton was unlikely to live past two, we were hesitant to make any big decisions or long term plans. Our huge leap of faith was having a second child before fully knowing Braxton’s diagnosis or what his life would look like. Braxton went downhill while I was pregnant with Zander and we took him to Mexico, thinking it was very likely his only chance to see the sun and ocean (and although he has made it to more summers of warm sun, we are still doubtful we can take him to see the ocean again). Once Zander arrived it was survival mode. Any new mom can tell you the ups and downs with a new baby, and with a medically complex toddler in and out of hospital in the mix, 2015 and 2016 were hard years. But though the difficulty we learned just how strong and resilient our Bubbe is. He fought off pneumonias that were likely to end his life, regained skills after status seizures and brain slowing medications made him regress back to a baby again and again. He showed us that he was getting ready to go to school, being happy in his wheelchair for long periods of time, learning to communicate ‘yes’ and ‘no’ by turning his head right or left, loving to be around people, and eager to participate in tasks that were purposeful and useful. Our Braxton understood us and wanted to be part of our world.
It is exciting to be putting down roots. After years of not knowing if we were staying or going, if Braxton was staying or going, if I was going back to work or remaining a stay at home mom, we are putting down roots. We are saying to the world we believe in Braxton, we feel he’s here to stay. That brings with it a whole new set of shifts in our thinking. Like school, for example, Braxton will be starting kindergarten in September. And what are the needs of an older disabled child/preteen, and how do we meet them?
We started looking for a house that would meet Braxton’s needs. It was a hard search for a house that was wheelchair accessible or could be made accessible. We were looking mostly in Calgary, as that had better access to both Alberta Children’s Hospital and Emily Follensbee (an elementary school for children with medical and developmental complex needs like Braxton). Even with pushing our budget to its max there just wasn’t the right house for us. We talked to three different home builders in areas east of Calgary, and even put a deposit on one, but the house we needed continued to fall outside our budget. We did find a house in Langdon that could be made to meet our needs and put our current house on the market, but our house did not sell. So after more than a year of house hunting we decided to renovate our house. Once again the process was much slower than expected, with frustrating delays getting plans and approvals in place. And even now with the renovation started, it’s been slow going with hold ups and weather testing my patience. Originally the plan was to be done at end of January, but we are far, far, from that now. We now have a wheelchair lift on our front porch to get Braxton in and out of the house. We are building into our backyard. Braxton will have a new bedroom with accessible en-suite bathroom on the main level. We are also renovating our kitchen/dining room/living room area to make it fit our crazy life.
The next piece in our accessibility puzzle is a wheelchair van. Braxton is getting too tall and heavy to be lifted in and out of a child car seat. And I’m getting too pregnant to be lifting the wheelchair (~70lbs) in and out of the vehicle’s trunk. Braxton will be able to stay in his wheelchair and travel from the house, down the front porch lift, and up a rear entry ramp into the van, where the wheelchair will be secured in the back row. There will be room for Zander and baby in the middle row. When we get to our destination, be it the hospital, school, or church, we can easily roll the wheelchair out of the van. That is of course once we actually get a van. Handicap accessible vans are ridiculously expensive, we are looking at $20-40000+ for a used van that meets our needs. Similar to the house, we have been keeping a close eye on the used accessible vans for sale, but haven’t seen what we need in our budget. We will be setting up a fundraising page in the close future to try to help Braxton get his much needed wheelchair van.