Sunday, May 22, 2011

Just When I Think I've Come To Terms With Everything...

We headed out on Friday for Sam's appointment with his orthopedic surgeon. He was happy and talked to me all the way to the appointment, which was probably good so that my mind couldn't become preoccupied with what the x-ray might show. We prayed as we do before every appointment asking that God comfort Sam, keep him calm and allow him to cooperate in order for us to receive the best information possible. Sam requested his wheelchair to go into the appointment as he normally does when he is not sure how much walking will be required. We were in good company with 3 other children also being in wheel chairs that day.

I watched as one Mom communicated with her son through gestures, kisses and smiles. Although he couldn't speak his facial expressions and gestures spoke volumes...he loved his Mom...for that I could be sure. Sam began his usual routine of talking at me which I try to turn into conversation exchanges and I could see this Mom watching us with a look that said "I only are blessed". These exchanges occur often between parents of special needs children. We don't need to speak, our eyes, our expressions, our feelings are more than evident. It's funny how I can wrap myself up in knots worrying about Sam's lack of conversational speech and then I come across another Mom, like this Mom, who would just love to hear a word or even a sound from her child and I am again reminded that blessings are abound.

They call Sam in for his x-ray and he is asked to stand in front of the screen. They try to position his feet and he resists because it is uncomfortable to turn his feet forward and put his legs together. They continue to push and encourage him to move his feet and part of me wants to scream, did you not just see him walk in with his feet turned out and on his toes on the left side. Figure it out, he's trying to find some way to walk and stand that is comfortable, a position that might reduce the pain. And another part of me says "Come on Sam, you can do it" we need a good x-ray.

As we wait in the appointment room I am disappointed that they have not put Sam's x-ray up on the screen like they usually do. My mind begins to reel "Why don't they want me to see it?" Is it because it's worse and they want to prepare me before showing me or is it because the miracle I have been praying for has happened, a big white beautifully round ball has suddenly appeared on the top of Sam's left femur. After an agonizing 15 minutes the resident walks in and finally brings up the x-ray on the screen. I sigh because I don't see any white fluffy stuff on the x-ray. Another dream dashed in an instant. I just see glowing hardware and a picture of two not so pretty hips that are misaligned. I answer the resident's questions and I wait until he walks out to take a closer look and compare this x-ray to the last one. The good news is Sam's hip doesn't look any worse unlike the last appointment where the bone had continued to break down. The bad news is it doesn't show any improvement either. We are status quo...still waiting, still wondering, still hoping and most of all still praying. When I look close I do notice a little white fluffy stuff in the area where the hip has been rebuilt and for that I say a prayer of thanks.

Dr. Thometz confirms my suspicions and you could tell that he too hoped for some forward progress. He checks his range of motion which is a part of the exam Sam is not real fond of. He resists but relaxes enough for them to get a pretty good idea. Sam is still having pain and discomfort but Sam being Sam doesn't really express this well, he simply repositions himself. The doctor watches him walk and examines the new curvature in Sam's spine that is more prevalent when he walks than when he sits. He notes the toeing on the left side and I tell him we are scheduled for a gait study next week. He doesn't feel the gait study is needed and orders a leg length x-ray instead. Our 1/2 hour appointment now becomes 2 hours.

We head back to x-ray and I inquire how this x-ray will have to be done. Sam will need to lay down, I sigh knowing how much Sam hates the x-ray table. To my surprise they have arranged to have Sam lay on the floor which takes away the fear of the table and the x-ray goes wonderfully. I thank the x-ray technicians for their out of the box thinking without me even being required to make a suggestion.

We head back to the appointment room and the x-ray is up on the screen. In this x-ray Sam's hips are even and you don't have to be a rocket scientist to see that Sam's left leg is much shorter than his right leg. The resident comes in and begins taking measurements on the x-ray. I learn something new that we are looking for centimeters not inches. He estimates that Sam's left leg is 1 1/2 centimeters shorter than his right leg. I thought, wow, that doesn't seem like much and then he tells me that anything over 1/2 centimeter would be noticeable to a child. Dr. Thometz comes in and remeasures and says Sam's leg length difference should be much more but for some reason his left tibia is much longer than his right tibia. Great, another Sam anomaly!! He asks that we change our gait study to an appointment at Hanger Orthotics to get Sam fitted for a lift. He also eludes to the fact that leg length surgery may be in Sam's future. Another surgery, that brings us up to at least 2 more.

And yet when I walk out of the appointment I'm at peace that Sam's hip didn't get worse and we can help him with a lift to improve his gait hopefully correcting the curvature of his spine and give him more stability and comfort while walking.

At least I thought I was at peace...

Today I went to my niece's graduation from Marquette University. Sara I am so very proud of you and I hope your new job is fantastic. You have worked hard for this and I have lived through you and loved hearing about your studying abroad to places I may never see. I watch as each of the graduates comes across the stage and receives their diploma. My eyes tear up when I hear them call Sara's name but it isn't until a little later that something shakes my world.

I watch as one of the graduates, a young man with Cerebral Palsy walks with canes across the stage to receive his diploma. As he walks and I see his crooked gait, his struggle to get from point A to point B...I lose it. The flood gates open and I begin to sob. I try to gain back control but my mind has taken off thinking of Sam. In that moment, I feel tenfold everything that young man's parents are feeling. It's funny how something like that can set you off, trigger a heart wrenching emotional response. I didn't even know this young man but he touched a very, very tender spot in my heart. I didn't know what my in-laws were thinking as I got up and headed to the bathroom with tears streaming down my face. I knew I needed to pull myself together but the intensity of that reaction left me breathless. If this happened at home I would have jumped into the shower and had myself a good long soul soothing cry but I needed to go back into the auditorium. It took every ounce of strength I had to pull myself together, dry my eyes, fix my make up, take a couple deep breaths and head back in. Luckily my brother in law was standing waiting for them to finish with the names so it gave me an opportunity to pull myself together, calm my mind and finish the program.

I'm often told by my readers that I'm a rock and I am so strong and then I have a moment like today and even though I try my best to place my worries and concerns in God's hands...I hurt, I breakdown, I sob and I have to pick myself up again.

I came home to Sam's smiling face. He hugged me and I looked into those big blue eyes and found all the strength I needed staring back at me. We're gonna make it Sam! You and I are going to get through another week of appointments and we will work together. Please know that I will always love you. Being the Mom of a wonderful child with special needs has made me feel, notice, persevere and most of all love more. I again cried as I put my feelings into words tonight but I also dreamed of a day when Sam will walk beautifully again and without pain.


  1. Oh I'm so worried about Jax legs! Partly because of his severe osteoperosis, but his legs look crooked to me. I was going to show my ped at our next visit. Granted he will never walk, but I'm so worried we are going to be in your boat with hips and severe leg problems.
    Praying his hips start to heal!