Last Wednesday Jeff, Sam and I again traveled to Baltimore for Sam's 3rd hip surgery...the removal of the external fixator. I don't know if I can put into words the feeling for ME of having that device removed. It was like a huge weight was lifted from my shoulders. No more pin care, no more gross photographs of stuff oozing or flesh collapsing or black flesh. No more worries about him accidentally hitting the device on the wheelchair or the doorway or it getting stuck in a cushion. Now keep in mind that's just how I felt can you imagine how Sam felt?? I think in some ways he missed it but that was short lived and he seems happier that it is gone. Of course he wasn't happy when he realized the external fixator was gone and a brace on both of his legs took its place. As I spoke to parents of children with Perthes and the kids themselves many of them didn't like the extension bar that had to be put on to the external fixator twice a day and at night and most of them didn't like the brace. But in true Sam fashion he would ask for the bar to be put in and he is happier with his brace on than when it is off. Surgery is never something we take lightly with Sam but this particular surgery went very well...guess those special angels were helping him along. Sam had a little bit of a melt down when we got to the pre-surgical suite.
I know every child is different and for Sam who has multiple speech issues, bi-lateral hearing loss, processing and sensory issues there are so many little things that can be the difference between a pleasant experience and a major melt down. Because I am with Sam 24/7 and we have gone through a lot on our journey I can often anticipate how he's doing or in what direction he is headed. We were originally given an arrival time of 6:30 a.m. and surgery at 8:00 but then we received a 2nd call from Dr. Standard's office that we were to be there at 8:00 with surgery at 10:00 a.m. At 7:00 a.m. we received a call from the OR wondering where we were and when they could anticipate us. I explained the situation and we rushed over to the hospital. Because they were now behind schedule they were trying to rush things along...big mistake...Sam doesn't like to be rushed, he needs time to process and if he feels rushed he often feels threatened and will just shut down. The nurse went through the usual questions attempting at first to address them to Sam but not waiting long enough for an answer so he quickly withdrew from talking to her. The dreaded hospital gown was on the end of the bed which means Sam would not transfer to the bed. More people began to arrive and Sam unable to follow all the conversations began demanding my attention because he needed to hear my voice and reassurance that he was okay and I would be with him. When Sam continued to refuse transferring from his wheelchair to the bed I asked if they could all leave the room for a moment and then I asked Jeff to remove the gown and the blanket from the bed. I got down to Sam's level and said "On the bed, watch your movie." Sam smiled, stood up and allowed me to transfer him. Some things are just that simple if you respect Sam's needs and the way he communicates best. I discussed everything with the anesthesiologist explaining Sam's anatomy anomoly of 3 bronchial tubes instead of two, his floppy and reactive airway, his extra esophagul fold, his upper airway issues, starting the IV after he is in the OR and suggesting that they put it in his foot instead of his hand if they want it to remain in when he wakes up. We talked about the Versed and how I would need to administer it from a syringe with fewer people in the room and that Jeff and I would get him into the hospital gown after it took affect. This was the first time I was brought back to the OR with Sam until he was given the mask and before they intubated him. I told them to take good care of him, I gave him a kiss and told him I loved him and I walked back to the waiting room to sit with Jeff. As I removed my blue suit I sensed such a feeling of comfort that I knew my Mom was right there with me and that my family and friends were busy praying.
As I sat in the waiting room I replayed in my mind the twists and turns of my journey with Sam. During Sam's 12 years I have been required to make so many medical decisions for him and each and every time I wonder if I did the right thing. I thought about how I chose to homeschool instead of send Sam to school because of his weak immune system and his speech issues. I thought about how I chose NACD over traditional therapy methods and suddenly I began to feel at peace...a peace that has been years and years in the making. None of the things I describe above were quick decisions, each was researched, prayed on, discussed between Jeff and I and all of them came with people who supported our decisions and those who questioned if we were really considering the best option for Sam...but that's just it...I have spent all these years taking my lead from Sam, trusting my gut and trusting the Lord.
I had such a difficult time wrapping my mind around the external fixator process for Sam. There were so many reasons I could come up with on why we shouldn't do this but only one on why we should...what if?? What if this is his chance to regain his mobility and walk without pain? During the last 4 months I have been tested to the depths of my soul. I chose to travel across the country and do the surgery and we endured the challenges and struggles that came with that decision. I then lost the person that supported me in everything, my rock, my sounding board...the person who took care of me when I wasn't taking care of myself. I didn't just lose my Mom, I lost a part of me...an extension of me. I took on Sam's complete medical care and therapy needs. I had originally planned to have nursing care if I or Sam could not do the required pin care. I had therapists lined up for PT and Aqua therapy. At first Sam fought pin care and I struggled with the process and just seeing the device sticking out of my child's body. But as Sam adjusted...so did I. He and I figured out a system of transferring, showering and completing the process. He trusted me and I listened to him...both his verbal and non-verbal expressions. I adjusted and tweaked the areas that caused him anxiety or discomfort. This is what often happens with Sam. He guides me.
So then I have a decision...do I turn that responsibility and process over to someone else? Being a Type A personality...the answer is usually "No". It is not because I feel I am the best at everything. I'm not the best speech therapist, I'm not the best PT, I'm not the best teacher, I'm not a trained medical person, I am not perfect or claim to be...but I do understand and love Sam with all my heart and sometimes that's the real difference. Sam's education has never been about goals written in an IEP, his speech has never been about programs to re-mediate the effects of apraxia and aphasia, his PT and OT has not been about reaching normal milestones and his behavior is not based on a proven system of modification.
Sam and I are living each day together, learning from each other on what works and what doesn't work for us. We have good days and bad days but each day we learn something that worked or something that didn't work. We choose to change, to try, to learn from each other because we genuinely love and care about each other. We respect our differences, we laugh a lot and we are encouraged and motivated not by a paycheck or a set of goals written on an IEP but instead by a smile or an exclamation of "We did it" or that look of pride that a child or parent gets when they have figured it out, when they have succeeded. I don't know what Sam's future holds but I do have the ability and means to meet a few very important goals for Sam...to be happy...to feel safe...to be loved...to be appreciated...to be listened to...to be valued...to enjoy his family and his life at his pace and in his way.
Just like any parent, but especially a parent of a child with special needs I do some of those things that a parent should never do...second guess, compare, worry, envy, talk more/listen less, be inconsistent, over-protect, make excuses for bad behavior and do things for Sam instead of helping him to do them on his own which in turn disables him further. Yep, I'm not perfect...but Sam loves me anyway.
As I've traveled this journey and have spoken with many wonderful families I have come to the conclusion that each and every one of us is on a very different journey with very different children. I share Sam's story as my therapy and to inspire and encourage. I have always kept it real sharing the good, the bad and the ugly. I had a request to show more of Sam's hip x-rays so I compiled some of them here.
Sooooo...here is what Sinai shows hip abduction and hip flexion exercises should look like. I always love when they show a typical fairly flexible person doing the stretches. I always want to volunteer Sam and see how that photo shoot goes.