I was looking through old photos from our first "Gala" to do some marketing for our upcoming 12-04 event and I ended up going down a little memory lane. What a time that was for us! We had planned and executed our first sit down event, brought in all the tables, and decorated the space in a few hours with a ton of help to turn a brewery into a night of sparkle and Christmas ambiance. We had one of the most fun nights I can remember- the food, beer pairings, decor, the cause, it was such a special night! I believe everyone who attended felt the same way. It was a night of fun for a wonderful cause all inspired by our son Andrew and other PKS families. You'd be surprised that just a few days after this event, Andrew underwent a major, life changing surgery.
Just a few days after our PKS gala, Andrew had his spine surgery. All I see in those pictures of him sleeping while waiting to go back in to the O.R., is that mountain of a hill that was always present on his back. Almost two years have gone by and I have almost forgotten what that looked like So disfiguring, most wondered how he could even sit at all. The 100 degree S curve and 90 degree kyphosis curvature of his spine caused Andrew to be found upside down on the side of any chair, while the arm rest would put pressure onto his side. It was one of the most common positions you would find him in. While we may not have always realized it, his spine became a barrier to his learning, communication, and overall happiness.
I remember talking to the spine surgeon prior to surgery. Andrew at the time, was being evaluated and treated by Palliative Care. If you aren't familiar, this is the place that focuses on anything and everything we could do, to make Andrew's quality of life better. I remember seeing the tears come down our surgeons face as we discussed all the possibilities and our options. One of our choices was to let his spine continue to curve naturally, which would eventually change the longevity of Andrew's life. Surgery was another option but Andrew was at a higher risk of bone complications given his previous hip surgeries that had had unforeseen difficulties in healing. For those who don't know our son's history, he had hip dsyplasia. And because his trajectory was to walk, we felt it was in his best interest to fix his hips for future of preventing pain, arthritis, and a host of other things. What we didn't know, was that PKS had really affected his bone health, and his ability to heal. This was not in any literature we knew of with PKS, so it was not something we were prepared to face. He looked quite healthy for a boy with a rare syndrome. He was nice and "full" with quite a bit of muscle for having severe hypotonia, or low muscle tone. We never could have imagined the complications that happened as a result of these hip surgeries. Quite frankly, we were all terrified of putting him through yet another surgery with all the uncertainties from his prior response to operations.
We had to make a decision with Andrew's best interest in mind. Surgery's intent is to give you a better quality of life, but that hadn't been the case for Andrew given his last 5 hip surgeries. While we continued to see his spine progress, we had a difficult time addressing what to do. We felt like we were putting out too many fires from his re-fractured hips or bone infections to even think about possibly doing it all again. We eventually, decided to change our expectations to focus on keeping Andrew healthy and with us. It didn't matter to me anymore that he couldn't stand, or walk. I just wanted him with us, and if it meant we didn't push him physically, that was our new standard. Meanwhile, we were up against this invasive, curving spine that was starting to really compromise his lungs and heart. Our doctor said we were up against time. The decision was made for us. We had to try.
Fast forward two years to see Andrew now. He uses his walker with the assistance of a seat that allows him to sit when he is tired. Because of being upright, he has new interest in the world around him. Exploring his environment, we hear new sounds coming from the living room while Andrew is touching/pounding the walls or doors, staring at the pictures on the wall of his sisters and family. We might find him in front of the t.v. mesmerized by the colors, motion and sound! He is engaging more than he ever has. He has shown us his strength time and time again. Andrew has changed our world, our every fiber of being. He has shown our family that life can be quite messy, and sometimes dark- but in this darkness is clarity, God, light, hope, love, kindness and a million other things. We have learned that darkness doesn't stay for good. Every day you wake up and there is another chance to climb out and keep trying. We have also learned that the picture we once painted in our heads of perfection and life, is often a painting of detours with fun little day journeys. Our moments are made of the smallest of accomplishments with the biggest praises, because we know how hard we had worked to get here.
As I plan our next 12-04 Gala and 12-04 season, I am reminded of how far we have come. I sit here with tears streaming down my face, so thankful for new chances, Andrew's life saving surgery, and his miraculous recovery.
We are so blessed.
In hope,
Nicole
(p.s. SAVE THE DATE! 12-04-21 GALA AT LUPULIN BREWERY in Big Lake, MN. Details soon!)