Tuesday, January 19, 2016

Jack's One Level

I've switched my reading up over the past couple years. Instead of spending a lot of time on preemie blogs or post-NICU forums, I've found myself in a new place, drawn to resources about caregiving. Caregiving is a broad term, often associated with caring for an elderly family member in one's home during their final years. However, it also encompasses a small, but mighty, group of parents taking care of their children for the entirety of their lives. These are children who for whatever reason, medical or developmental, will never be able to live independent of someone caring for them on a day-to-day basis.

As each year passes, we are more aware that this will be our greatest calling in life - being caregivers to Jack. In this, it brings up an interesting set of questions to consider. Things to get in order. Wills to write. A lot of planning. A lot of trying to imagine what the future will look like and praying to God that we are strong and able to take care of him well into our old age.

I won't deny that this has been an interesting juxtaposition, watching others begin new phases of parenting their children who keep growing up, all the while preparing to continue day-to-day care of Jack for the rest of our lives. But the more I come to terms with it, the more I see how this is not something entirely unique for my parenting journey. Jack has never fit the mold, has never followed the typical timeline, and really, I know nothing different. This is our story and I love most everything about it.

Which leads me to something exciting I'm going to tell you about. Those who follow on Insta will have already seen the news, but after three years of searching for the perfect spot, we found our land and as soon as the ground thaws, we will begin construction on Jack's totally accessible, one level home.

We have known for quite awhile that our home now, with its stairs, is dangerous for Jack. He cannot walk up or down any of the stairs unassisted. And as we age, we will not be able to carry him up and down anymore. Our home right now creates barriers for Jack, a kid who already has enough barriers in his life. Our greatest desire for our future home is that Jack will have access to the entire house and will have the ability to go to any room or area he wants without risk of injury.

We don't tell you this lightly or to gloat. Yes, we are so excited, but since we purchased the land, I have been tentative in sharing because I understand building an accessible home is out of the reach for many. We fully realize that this is a dream for many of you and we don't take it lightly that we are able to build this home. But I have shared our story with you until this point, and I don't want to stop now.

As far as homes go, Jack's one level will be pretty simple. Bedrooms surrounding a central, open space consisting of a living room, kitchen, and dining area. We finalized our building plans last week and now we wait for the thaw.

I'm not sure if this will be our forever home, but it sure is feeling that way.

The funny thing about this land is that for two years we had our heart set on some property in a different area. We drove by it all the time, called it "ours", but kept waiting and waiting for it to go on the market. One day, Jon was wasting a few minutes before dropping Jack off at school and happened to take a right on a road he had never been down before. He looked over and there was this beautiful land, for sale, a minute from Jack's school. It was perfect. The icing on the cake was that the owner of the property was actually one of our favorite Montana non-profits, so we got to purchase the land with sale proceeds going directly to a great organization.

We snapped these photos on a cold, gray, and dark day, right after we signed all the paperwork. We felt warm, colorful, and bright, though. Jack's one level, coming soon!

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1 comment:

Beverly said...

So exciting for all of you. Can't wait to see the new one level house. I can only imagine how happy everyone will be there.