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!!!!
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!!!
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