I have two preschoolers in my house now, and I’m a little confused about where my babies have gone. Maybe it’s because we don’t yet know if we’ll have another child [yep, crazy for even considering…], but I’m a bit shocked at how suddenly grown up my boys are. It could also be that I was so wrapped up in the disorienting turmoil of Joel’s diagnosis (at 13 months old) that I failed to notice how huge turning three was for our big guy Luke. But, age three is MAJOR. (So is age five…more coming about big brother in my next post!)
The birthday boy discovers his sled and other presents!
On December 23, we finally received Joel’s first set of wheels. It was a long process that we are about to begin again as we work on acquiring more equipment to assist Joel. We were so happy that our equipment rep. was able to push through the wheelchair before the end of the year. Otherwise, we would have had to begin all over again with approval, ordering, etc. and would have lost our Durable Medical Benefit for the year. What was truly amazing, other than the obvious fact that our vendor works directly for Santa, is how instantly ecstatic Joel was when he first sat in his chair. This is a child whose vision and other senses require time to process new things, people, places, etc. But he was ready!
He is learning to propel his wheels, little by little, and has shown some impressive understanding of turning already. It took months of work this past fall for him to touch wheels and now he prefers to keep his hands on at all times, especially if it means he’s in charge! In addition to celebrating Christmas, New Year’s Eve, and then both of our boys’ birthdays this month, we also marked Joel’s one year anniversary at the Perlman Center at Cincinnati Children’s. I cannot explain how Perlman has changed our lives. Last year he was a child who had no idea that his feet and legs were meant for standing and walking, and this year he laps the hall loop in a gait trainer. And then there are the amazing families who share ideas, hopes, fears, support, and everything else. They are family to us now.
By the way, Joel decided to sit up by himself for the first time at our boys’ family birthday party. We were quite surprised!:
We also celebrated our one-year “van-niversary”…which is so cheesy I should delete it. But, I love the van! Being able to haul around a stroller, wheelchair, children, and groceries, etc. makes life easier. I’m in a bit of denial about the potential need for a van that can accommodate Joel sitting in a wheelchair as he grows. We might just paint flames on the side and embrace it, though!
When children receive early intervention services from the county, their case is transferred to the school district at age three. (At least in Ohio, anyway.) Our education specialist, physical therapist, and occupational therapist worked with Joel in our home since he was about ten months old. (We added speech about a year ago, too.) It was so hard to say goodbye to them in the past few weeks because they have helped with every aspect of diagnosis, therapy, and life in general. I will be forever grateful for their wisdom, cheerleading, and care over the past two years. Our county has a Developmental Disabilities Services levy on the ballot this May, so local friends especially will be hearing more from me about the phenomenal work they do!
And this week Joel went to his first day of preschool! For me, it felt a little bit like the first time I flew in a plane…excited, nervous, elated, and a tiny bit nauseous all at the same time. But he loved it! I’m pretty sure he was thinking, “Hey fam, love you and all, but there’s fun stuff to do in there. See ya!”
We are so very proud of this boy who has changed our lives in ways we never anticipated. A great friend shared this quote today, and it’s exactly what I’ve been trying to explain to others, especially those who wear the “oh, such a pity/how sad/I’m sorry” faces when asking about Joel. I personally wouldn’t have been ready for my jacket right away (maybe delivered about six months post-diagnosis), but John (who, thankfully, is the steadiest person I’ve ever met) would’ve said, “Sweet!”, and put it on immediately. This is taken from an interview with the actress Laura San Giacomo (whom I adored in Pretty Woman and the TV series Just Shoot Me) who has an 18-year-old son with CP:
“I think first of all there’s so much negativity around [disability]. Perhaps a really difficult birth, a really difficult childhood trauma, an extremely difficult diagnosis and there’s a lot of mourning that goes on and a lot of fear. And trying to adjust your mind around what you thought your parenting was going to be to what it’s now going to be.
And I wish that medical professionals would tell parents, ‘This is your chance to be the most incredible person, to be better than you ever thought you were going to be, to become smarter than you ever thought you were, to become more imaginative than you ever thought you could be. And this is your chance to really shine and step up to the plate for the biggest game of your life.’ There’s a lot of great power surrounding the community and I sort of want to inject with, you know, the green masters of jacket – of the golf world.
And I wish that doctors and medical professionals when they give the diagnosis would also put a green jacket on your shoulders and say, ‘Hey, this is your chance. You have been given this most incredible and amazing challenge and it is going to be the hardest thing you will ever do in your life, and it is going to be the thing that is going to be the most joyful thing in your life. You will experience the highest of highs and the lowest of lows and you are going to be amazing and your child is going to be amazing.’
And they will play basketball, whether it is from a wheelchair or someone helping them, they will find all kinds of things that you do not know, because your mind is too closed to what a disability might be. They will find and they will show you what they are going to be excited and passionate and joyful about. And your job is to take a machete and carve the path in front of them. Find out what they love to do and carve it and let them experience all of the world.
And that’s a lot, and nobody is going to want to hear that. They just want to cry, but at the other side of the crying is going to be a full and rich life that is going to be tiring, but also extremely fulfilling and joyful.”