It’s been quite a year. I have not been able to blog nearly as regularly as I would like, but in all, I cannot complain. We had a hard start, seizures resurfaced, and there were serious bouts of constipation requiring a hospital stay. With all that I can honestly say we are lucky. We had control once, we got it back again. (knock wood) We are now 5 months seizure free, and that is amazing. Even more amazing is the long list of things “Buddy” has begun to do. He is more interactive. He is using communication cards to voice opinions. Oh, and he has begun to walk. Yes I said walk.
About a month ago I was waiting for “Buddy” to get off the school bus when I noticed a text from school. There was a video. I glanced up at him grinning ear to ear as they loaded his wheelchair onto the lift…I pressed play. There he was with Chris his Physical Therapist outside in the grass…Walking!!!! He has been walking holding our hands for some time. He has been cruising holding onto counters and furniture since the beginning of summer. So we knew it was coming. Still my heart swelled and filled my throat. It wasn’t a single step, or even two, he took 16 steps without any help! I completely choked up, my eyes filled with tears as I looked back up and my little man, still grinning ear to ear. He knew what he had done and he was proud. I felt like my chest was going to explode with pride. I started to damp down the tears because I was “in Public”, but then I let myself go. We have cried many sad and mad tears, we earned these happy ones.
The good news didn’t stop there. A week later he was walking all over the school without help. He still needs to pull up on something to stand, but the quality of his walking has improved incredibly. The whole team is having a blast helping him. They were all taking bets on when he would walk and he blew all their guesses out of the water. He is taking the world by storm.
(Now, I have to say, this is part of why I have not been able to blog. Trying to childproof a house to 4 feet is complex. Add to that climbing on the table and couch and anything else, well it will keep a mom busy.)
Around this time I was walking through a mall and saw a costume for an astronaut hanging in a store. It was pricey, but I was seriously thinking about getting it for Halloween. I simply did not have the time to make a costume this year. Then I joined an amazing page on Facebook called Buy Nothing Project. It is a gifting site. Much like you would share and hand-me-down things within a family, you do this within your larger neighborhood. At first I was excited to simply get rid of things I was no longer using, giving my loved but unused things to people who are excited to have them made it easier to do.
Then, one day, I saw someone giving away an astronaut costume very much like the one I was eyeing in the store. A young boy had out grown it but was very attached to it, so his mother told him he could decide who to give it to. She asked interested parties to tell a story about their child. Most began with “My Child loves space” or “My child just did a project in school on the moon…” I didn’t think I had a chance. After all, it was me who wanted it, not my son. “Buddy” is still just starting to get Halloween. I decided to try anyway. I wrote that “My son Buddy, is 4.5yrs old, and has just begun to learn to walk. Last week I decided he should be an astronaut because the sky is the limit.” Well the heart and soul of this group showed itself…and it really touched my heart. Many of the people who posted withdrew their name in favor of “Buddy” getting it.
The next morning, the mother gifting it posted:” I'm now a little nervous for the breakfast conversation with my now 9 year old son, where he's supposed to pick who this goes to. This costume was hard for him to let go of, so he insisted on picking if we were going to put it on BNNES. I'll add that I do have faith in his compassion, fingers crossed.”
Well he did pick “buddy” to which his father posted: “I generally "voice" my opinion in these threads by clicking the Like button, but in this one I have to use words to say how proud I am of my wife, and my son, E. I heard her read Jennifer's post to E this morning and silently voted for that one as well. Look forward to seeing the pics!”
I was in tears most of that day. Seeing all the love and support come in from virtual strangers was so wonderful. I am so amazed daily by all of “Buddy’s” hard work and determination. It is true the sky is the limit. And the love and support of our ever expanding community is the fuel that will get him there.
Thank you all…family and friends who have been with us from the beginning, friends who have joined us along the way, new friends just emerging and those yet to come. We see the impact of your love and support and appreciate it immensely.
And now…for the big reveal of cuteness!!!!
Oh, and the walking!!! These are his first independent Steps!!!
‘Buddy’ is determined to WALK!!! I am so excited to be typing these words. What an incredible gift! For him to be this healthy. For him to be so cognoscente. For him to be so determined. I am so honored to watch this process.
It started about a month ago with some very cautious pulling up. Then it got serious two weeks ago when he got good at pulling up but was frightened of getting back to the floor. Every five minutes or so he was pulling up somewhere new and fussing to let me know he was stuck. I made it my mission that weekend to teach him to sit back down. Every time he pulled up he would giggle at the accomplishment. Slowly the giggle would get more stressed as he got tired of standing and scared of sitting. I aimed to get to him just as the fun of standing started to peter. I would then place my hands on his hips for reassurance like a spotter in a gymnastics class, and talk him through it: “You just need to bend your knees. You can do it. I’m here if you need me.” By the end of the weekend he had it.
Next step: cruising. Typical kids cruise by moving their legs in a sideways stepping motion while facing a support structure like a couch or coffee table. ‘Buddy’ would turn his body so he could move his legs forward, which was much too hard for him. His Occupational Therapist wanted us to work on weight shifting side to side. He needed to organize his head around how his body should feel when doing this, so that it would become a tool in his movement toolbox. ‘Buddy’ LOVES Row Row Row Your Boat, so we do it A LOT. I decided a while ago to take advantage of this by adding verses to work on skills. So we added a few new verses all of which he now does while standing and holding my hands;
Row, row, row your boat
Gently down the stream
Merrily, merrily, merrily, merrily
Life is but a dream
Twist, twist, twist your arms
Twist them left and right
Twist them here and twist them there
Twist them everywhere
(to work on alternating movement)
Fly, fly, fly away
Way up in the sky
Fly here and fly there
Like a butterfly
(to work balance and trunk movement)
Reach, Reach, Reach Up high
Way Up to the Sky
Reach, Reach, Reach Up high
Way Up to the Sky
(Shift weight to left foot while reaching up and left, then repeat to right, back and forth, only within the range he is comfortable with. I sing this verse slower to allow him time to control the new movement.)
It made a big difference. In one week he started cruising. It is still slow and takes conscious thought on his part, but he gets it, and he wants to master it, so he keeps at it.
In talking with his teacher we decided that we should get ready for when he breaks free of furniture. There are so many toys out there for little one to walk behind and push, but they are made for kiddos half his size. So it was time for more adaptions. I went to a local consignment shop and found a little cart that seemed adaptable and bought it for $25. Then I headed to Home Depot for some 1x2, wooden dowels, and some hardware for another $25. I had them cut the pieces down to size and went home to get started. My first version is a little rough, there were mistakes in my calculations…We have not been sleeping much lately…silly kids want to work at night too…but I got it working well enough for a trial version.
My basic plan was to make attach 2 dowels to the 1x2s to make a wooden handle structure with a series of hole along the sides so that it would be adjustable up and down to grow not only with ‘Buddy’ but also with other kids in his school as I plan to donate it to them when he is done with it. Then once the height is set, we will load it with sandbags to make it heavy enough to support their larger bodies. ‘Buddy’ is not quite ready for it yet, but I am happy to say the other kiddos are enjoying it, although we may need to reinforce the axles…we’ll see. It is a work in progress, much like everything in our lives.
Sometimes things just fall into place. When you are used to fighting for every little scrap, it can take you by surprise.
Last Tuesday ‘Buddy’s’ new physical therapist (PT) put him in a Johnny Jumper to help him work his legs and have a little fun bouncing. He loved it. This led to a conversation the same day with his occupational therapist (OT) about trying a walker/gait trainer. I brought it up with his PT on Friday. He said sure, looked around the room and said “What about this one here?”
I was a little stunned. Could it be so easy? No jumping through hoops? No calls to suppliers, or insurance companies? Yes, it could. Tuesday, one week after the first thought was voiced, ‘Buddy’ was fitted into his gait trainer. But it didn’t stop there. He did not fuss. He moved his feet. It wasn’t perfect, but you could see the pieces were there. We made it from the classroom to the therapy room and back again. He was in it for just under an hour, and when he came out, he slept…hard.
My heart raced. My heart continues to race. ‘Buddy’ is three, and 35lbs. The thought of him walking has been my hope, a dream, but I was cautious about it. I was preparing myself in case it did not happen. I still caution myself that our successes are fragile. At the same time, they are successes. ‘Buddy’ is doing great! He is such a fighter. No matter what is thrown his way he just keeps moving forward. He is such an inspiration.
I am a believer in miracles. I have to be. But the miracles I believe in are the ones that we make happen. Through force of belief and efforts to push boundaries we can make the impossible, possible. We did it, bringing ‘Buddy’ into our live. ‘Buddy’ has done it by staying in our lives, and he continues to do it with each new milestone. But what an incredible blessing when pieces of those miracles fall in your lap.
Two years ago, the goal was life. Last year, the goal was to be able to sit on his own. Today, walking! It takes my breath away. What a gift to have people in our lives that see his potential and are so excited to help him reach it. What a gift to have a son who is so strong, determined and happy. I have not always felt lucky on this journey, but I do today. I feel very blessed. All because someone else saw my son and reached out to help make his way a little easier.