OUR HOUSE (Madness)
July 10, 2026

The move is official. We’ve found a place to land and escrow closed on our house. We have until early September to pickup thirty odd years of life at our beloved house – our home. We brought our son home to this house almost twenty-five years ago. We had our first kiss at this house almost thirty years ago. We’ve built a life in this house and compiled endless memories at this house.

It will be hard to say farewell, actually goodbye since the reality of a two bedroom, one bath house having life as such in 2026 is dire. The house will be knocked down and turned into a two-story massive structure. It might be tasteful as some that have been built on our street. It will certainly use up every available inch of space. We hope they’ll keep our pool. We added the pool almost ten years ago for Cole to have regular access to swimming. It’s the lone activity that allows his body to experience free movement and it’s become such a lovely family time for the three of us to sink into the warmth of the water and sun on weekends, floating and dancing to our various “swim” playlists. (Happily, this will continue in our rental as it too has a pool).

Now that it’s official, we have the daunting task of packing up our lives. My approach is going to be as unsentimental as humanly possible. We’ve amassed a lifetime of things, both needed and not. I see it as an opportunity to lighten our lives. We can travel a bit more thoughtfully as we journey into this next chapter. We’ve realized we have some pieces of furniture that have lived in our garage for decades that can be now repurposed and perhaps refurbished, rather than making big purchases to fill space and need. It feels comforting to take familiar, loved things into our rental house but also exciting to see how they can be set up in different ways to fill the new rooms.

The wannabe interior designed in me is beyond motivated to create a home for us that feels like us in a space that wasn’t initially designed or created by us. It’s a little strange to move into someone else’s “bones”, bones to be fleshed out by our collection of life.

Today we have a chance to get back inside for an hour to take measurements and take more specific note of all of the rooms and assets and needs. I tossed and turned all night – nerves and excitement wrestling in my brain. I had strange dreams about sunken rooms that Cole could not access and other people’s things in closets and on walls. Nerves and excitement wrestling in my brain…

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LIONS & TIGERS (Sleater Kinney)
November 4, 2019

Lions and Tigers and Bears, Oh My!  I haven’t written anything for ages. I don’t really know why because it’s truly therapeutic for me and I could really use the release of fret and fear that I have been carrying around for most of this year. Lions, tigers and bears seem minor in terms of the hurdles and challenges we’ve faced and are facing in 2019.  I plan to make time to write more so will use this first post as a bit of a matter of fact catch up.

Cole turned 18 in September so we spent several months getting things in order to set up a conservatorship so that we can manage his medical, financial and educational needs moving forward once he’s legally an adult.  All of the stress led up to a fairly innocuous court hearing whereby we granted the conservatorship rights.  It doesn’t feel great to know that we’ve essentially taken away most his legal rights, however he’s not capable of making a lot of major decisions on his own so it’s the best option.  We’ve always and will always consult with him and no one has his best interest ahead of all else than we do.  Though we received the official documents, there remains a lot of loops to close and loose ends to finalize, like closing the guardianship that was in place for most of his life.  It feels never-ending.

While all of the conservatorship stuff is going on, we also learned that Cole’s scoliosis has worsened to the point that he is having surgery in December to try to correct it as much as possible. His spine has curved to such a degree that the right side of his pelvis is nearly touching his lower right rib cage.  The distortion has caused his organs to squish together which can ultimately cause a lot of problems, including breathing and heart issues. It’s a fairly major surgery, with his back being cut open from top to bottom so that the surgeon can straighten his spinal cord and insert titanium rods to support the new position on either side.  It’s not without risks due to it being a lengthy surgery (about 10 hours), potential nerve damage, infection due to the size of the incision, but the outcome promises a lot of benefits and improved quality of life for him.  He’ll even end up appearing taller once his spine is straight, a benefit he favors most. I plan to document all of this as much as I can as I’ve not found a lot of parent information about the whole process and particularly the recovery and healing.

In the midst of these big events, we are also trying to prepare for Cole’s transition from high school to the next phase of his education and life skills training.  There are a handful of career transitional campuses (CTC’s) in our area that offer various programs for young adults with special needs where, dependent upon their abilities, they are exposed to different career tracks, in addition to life skills (basic computer skills, creating resumes, managing living spaces, finances, and the like), and continued education.  Cole’s next IEP, scheduled right when he’s due to return following the six weeks of recovery from the surgery, will start creating the foundation of the transitional IEP that will follow so we have felt pressure to make sure we are prepared in terms of knowing what we want for him moving forward.  Part of this has meant touring each CTC to get an understanding of what each offers.  There are two that are impressive, but only one that felt like it would be somewhat appropriate for Cole.  The next step will be to work with them to try to create the path for him that will feel wholly appropriate.  Never a dull moment!

If I stop to think about it and take everything going on at once, it’s overwhelming.  If I allow myself to think too much about the implications or potential outcomes of any one of these, there’s a darkness and sadness that creeps in.  At times it takes all I have to embrace the rites of passage that exist in my life, in Cole’s life.

More on that another time…There’s an amazing boy, young man, who needs me to be strong, smiling and his.  And I will be…I’ll be everything he needs.

 

Posted in cerebral palsy, Family Life, Fear, High School, Independence, Life, Special needs parenting, Surgery | Tagged: , , , , , , | Leave a Comment »