Thank-You

What do you say when someone builds you a house? It’s seems preposterously small to just say thank-you.

I suppose I could write it in the sky in billows of airplane smoke to show the magnitude of our gratitude; or I could cry big sloppy tears to express the depth of this  feeling; I could tattoo my arm to show you this isn’t a passing thought. Would you hear me better if I wrote an acrostic? You know – T is for the time you gave H for all the hard work, A for accessibility and N for… never mind.

This project took many hands and many gifts. We’re thankful for every last one of them. It would not have gotten off the ground without the three team leaders. Sue, like many people who come into our lives, asked how she could help. She was persistent and did not go away when I said, “It’s all good. We’ve got this.”  She finally got out of me that the bathroom was a death trap of potential brain injury for Aidan and wouldn’t accept that it was a problem without a solution. Sue approached Talley, who with her bulldog tenacity said, “Oh, we’re gonna fix that.” She used her enthusiasm and networking skills to get people involved. Talley approached Jason the Builder to get some ideas. Not only did Jason see a solution to the problem, he committed himself to the project. Unbeknownst to any of us, Jason had been wanting to use his professional skills to give back to the community. Because of his stellar professional reputation, he was able to bring many contractors to the table. Sue, Talley, and Jason birthed this plan, invited you to be part of it, and saw it through to the finish, this amazing finish, and we are deeply grateful to them.

I also want to say thank-you to two people whom I actually stand here to represent. Liam, like me, would be completely happy to be locked in a room of books forever. He was flexible in the chaos, helpful with construction, and respectful to people who came to work. Since teenagers aren’t always known for those qualities I want to say thank-you to Liam for rising to the occasion. And thank-you to Garreth who simultaneously used his CNA skills to help Aidan recover from surgery, his finish cabinetry skills to work on the house, and his amazing husband skills to keep me sane. While you may have heard the unhelpful and inaccurate statistic that couples raising a child with a disability get divorced at an astronomical rate, all of our numerous pressure tests have made Garreth and I more unified.

This building project re-inforced some essential truths that I’ve learned mostly from raising Aidan.

First, see the possibilities. This project started with me NOT seeing a solution which is why I’m so glad that Sue, Talley, and Jason did. We hit a few snags along the way and had to be flexible. At times this project felt too big to finish. This was no easy task but we stand here today with it completed because you saw the potential for safe, accessible housing for Aidan.

Second, humor is a survival technique. Those of us affected by disability often  joke about things that may seem inappropriate. There has been much laughter in this project. Yes, Garreth answered the door in his underwear at 10pm after he had just come home from the hospital, and yes, I sang me some Neil Diamond karaoke on the stage of my open living room, and yes, what happens at Lowes, Sue, stay at Lowes.

Finally, and most importantly, everyone has something to give. Everyone. This project took money, time, professional skills, sweat equity, food, publicity, encouragement, and so much more. There was room for everyone.  We are grateful to each of you. I hope that you walk away feeling valued and appreciated. Take this moment to recognize how good it feels to say, “I participated. I gave. I’m part of something.” You can find someone who may not have that experience and create a space for them to belong.

So instead of a tattoo or sky-writing, I’ll say thank-you by telling you what you really gave us. Yes, in the most foundational sense, you built us a house. What that really means is that Aidan is safe in his own home, especially the bathroom, which is essential to daily living. He is also able to go wherever he wants in the house. Aidan can now maneuver his wheelchair around freely. He can go bug his brother, wheel away from his dad, take stuff down from the tables. You gave him independence.

Lastly, and most importantly, you showed us that we aren’t alone. Raising a child with a disability if often isolating and overwhelming. It just is. There was one moment of this project that captured the essence of this gift for me. It was Saturday March 9th. Aidan had just had major orthopedic surgery and Garreth and I were at the hospital with him. Being at the hospital is like being on another planet. We were far removed from the house project. Garreth and I were sitting in the hallway outside Aidan’s room, hoping that he would sleep. We were watching his monitors because his heart rate had been low. The alarm for the entire wing was right above our heads. We hadn’t seen fresh air or real food in awhile. We were anxious, stressed, and tired. This is our medical journey, the one only we as Aidan’s parents can take with him. Garreth and I sat together looking through the photos that Sue sent us from the day. There had been blue skies, sledge hammers, a feast, and smiley happy faces here at our home. It had been another productive work day. Because you were here, lifting this piece of our burden, we were free to focus on Aidan’s immediate needs.

You built this house. You built this community. We stand here humbled, grateful and amazed.

Thank-you.

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Wheelchair Update

Shasta of Outrageous Fortune recently wrote this regarding a search for an appropriate wheelchair for her son Malachai:

I worry that if I get him a power wheelchair that I’m “caving” or “giving up” on him ever walking, because why would he want to try crawling if he already had something that propelled him around? (Indeed, he already does that with me.) But I worry that if I force him to be in a manual chair that it will just become another piece of unused equipment that he hates being made to try and I will lose out on all the developmental and social benefits an effortless propulsion system would offer him.

I get it. I really do. Deciding to get Aidan a power wheelchair was a complex and emotional decision. It was absolutely the right decision for us and I shutter to think how close we came to saying no. I see the freedom it has given Aidan, the additional motivation to move in anyway he can including walking, the interesting way his wheelchair has become a tool for communication. This experience, however, does not entice me to run around Oprah Winfrey style and shout, “and YOU get a powerchair, and YOU get a powerchair, and YOU get a powerchair!”

It was right for Aidan, and I want all other parents considering the best mobility options for their children to find exactly what’s right for them and for their lifestyle. Getting a powerchair for Aidan meant getting an accessible van too; that’s no small commitment.

The powerchair does not come into the house. We still hold Aidan and help him walk these short distances. That means that Aidan’s movement is dependent on our initiation. He walks into the kitchen when I decide it’s time for him to get there. That kind of stinks for him.

Our home has recently been renovated by our community to be a much more accessible space for Aidan, leaving us to wonder how Aidan can best take advantage of that. He should be able to choose where he wants to go, and yet, the powerchair is not quite appropriate for Aidan (not all kids) to use in the home. It would take intense supervision to make sure he doesn’t hurt himself or destroy our house as he gets around.

So……..we decided to get him a second hand manual chair that he can propel. I’m SO excited about this. Aidan can go where he wants to go. He doesn’t have the strength to crash into walls and hurt himself, but he certainly has the strength to propel himself short distances.

See for yourself. (Subscribers will have to click through to the blog to view video)

After just one week of using the manual chair, here’s what Aidan has learned – the break in the front is not the same as the joystick on his powerchair; it takes both hands to propel; he can make the cognitive switch between both chairs and is motivated to use either of them; and yes, he can finally get over the bump into the kitchen. Check out this video:

I’m excited. Wheelchairs at first screamed to me “CAN’T” or “WEAK” or “DISABLED.” Now they shout for joy “CAN” and “STRONG” and “SMART” and “INDEPENDENT.”

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So, parents of kids with mobility issues, what questions do you have for me and what has worked for you in making this decision?

Bleeding Words

I wrote words on my walls because words matter, because the walls were coming down, because the words were more than words; they were my bleeding soul. I wrote words on my walls because I knew I would smash them down and somewhere in there I wanted those words to come alive, to be real; I wanted to destroy their truth and not just their letters.

I wrote words on my walls because my soul was bleeding.

One entire wall devoted to Epilepsy, written with the help of two seizure moms who have been important to me on my journey. Words like medical merry-go round, subtotal left hemispherectomy, refractory, intubation, and epic fail to declare the guilt of every medicine Aidan has tried.

I wrote words on my walls because my soul was bleeding.

There were words that have been wrongly taken over and used as weapons of heart destruction and needed to be smashed to be rebuilt for their glory, words like kanisani chetu. There were private grieving words for my childhood friend, whose words and imagination were sure to lead us both to Broadway someday, words like funeral and viewing. There were words for you too. Words that acknowledged that pain is part of life; that while we may grow from it we certainly don’t have to enjoy it, words like you will live, you will die, you will survive, you will be undone, you will be scarred, you will be stronger, you will be broken, you will be wiser.

I wrote words on my walls because my soul was bleeding.

Then I took a baseball bat and smashed them down. I felt like a conquering hero as I tried to undo them. From my bleeding soul…. to the crumbling boards… that held my broken words. They dented, they cracked, they relented and fell. Oh my word, my word, it was fun. I grunted and laughed and shouted and watched myself become stronger than their truth.

Bedroom Demo 047

Bedroom Demo 052

I went to bed that night, tired and worn out. The adrenaline of smashing took some energy, as fun as it was. But what exhausted me that day were the two seizures Aidan had before his school day even started, the ones that were stronger than usual, followed by the two calls from the school nurse about more seizures and a head bonk because of them, followed by the phone call to the hospital to schedule several appointments regarding Aidan’s upcoming surgery, followed by a visit to the doctor to have his heart and lungs checked and cleared for sedation for a CT scan.

It left my soul bleeding and exhausted.

I curled up next to Aidan who is having a two month slumber party in our room. I felt him breathing next me, listened to his silly little snore, sniffed his still sweet  cheeks and kissed his head. Sometimes my words fill me and feed me and heal me. Lying next to my son, being rebuilt by my love for him and healed by his closeness…

I understood why my soul will always bleed.

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Shared at the Extraordinary Ordinary