Saturday, January 14, 2012

Sighing...But Surviving!

I've been putting off this post. I was so touched by all the wonderful prayers and reassuring messages I've received in the last couple of weeks and they allowed me to feel so positive going into Sam's doctor appointment on Friday. But on the ride in, the radio announcer brought to my attention that it was Friday the 13th.

It's funny how something so insignificant can throw you off balance. I thought about it and then shook it off but that little shred of doubt/worry seemed to take root. I began to get nervous. Sam was his usual bundle of joy talking to everyone he saw, smiling and of course calling for Mom at least 100 times in the waiting room. I never feel ignored or neglected around Sam.

They called us in for the x-ray. Sam began to complain...okay it was more like staging a battle but we finally worked through it, got him on the table and got an x-ray. I prayed a little more as we went back to the waiting room.

They finally called us in for our appointment. Sam's x-ray was up on the screen and although I'm not a doctor or radiologist I desperately scanned the x-ray for white fluffy stuff which would signify new bone growth...but there didn't seem to be any. My mind began to reason that I'm not really sure what I'm looking for...I'm not a doctor...and yet my eyes continued to go back to the x-ray searching for some type of change, something that looked different. For the next half hour I went from talking to Sam to searching the x-ray.

The resident came in to ask the standard questions and to check Sam's range of motion and his gait. I felt a tinge of hope when I found out his name was Ben...could this be a sign God??? The resident having the same name as Sam's brother. I was grasping at straws.

Sam's range of motion had improved...that was great news. His walk/gait is still compensating for the lack of bone in the hip...that remained about the same. I finally could not stand it any longer I simply asked "Is there any new bone growth indicated on the x-ray?" Dr. Ben searched and compared and searched and compared and said "No, that doesn't seem to have changed." He said it so matter of factly, like he was replying to my inquiry on if the weather still predicted more snow. My shoulders dropped, my expression was as lifeless as the long sigh that escaped me. No bone has been over a year and we still have no new bone growth.

Dr. Thometz came in and seconded Ben's opinion but his expression resembled mine. He, like I, wanted to see that white fluffy stuff...but then his expression became even more pained as he explained that he could still see the subcondral ridge which is the first thing that starts to become less apparent as the healing process begins.

I took a deep breath, gathered my strength and asked, "So what do we do?" He again reviewed with me that his colleagues had not come up with any suggestions at the conference that Sam's case study was presented at. He assured me that Sam's surgery was very successful in containing the femur and he was happy about that but he pointed out that Sam's healing rate is slow. He would want to continue to wait and see. My mind is thinking...wait and see??...Sam is 11 years old and we are running out of time.

I asked, so if we wait and see and in a year or two Sam still doesn't have adequate bone growth what happens then. He said we would be looking at a total hip replacement and with Sam's low tone and lax joints that would come with it's own set of problems. The Friday the 13th doubt and worry had just blossomed into a nuclear bomb.

I asked if we are in agreement that the best possible scenario for Sam would be to try to save the existing hip. He agreed. I asked if he would be willing to confer with Dr. Dror Paley and go over Sam's case with him. He sighed and said "Yes, I would do that for Sam." I went on to explain, while trying to keep my composure, that I want to do everything possible for Sam to give him the best chance at mobility and pain free mobility. He's my child and I have never been the type of parent to agree that another deficit would be okay because Sam already has other issues. I want him to hear the best he can, see the best he can, breathe the best he can, feel the best he can, speak the best he can, learn the best he can....and walk the best he can. I have had to focus on aspects of Sam's health and life that most parents will never have to think twice about.

I look over at Sam, he turns and smiles and says "Hi Mommy" "Go home?" I say "Yeah Buddy, it's time to go home". He thanks Dr. Thometz, jumps in his wheelchair and continues to smile and say "Hi Lady" or "Hi Man" to everyone we pass. I pray for continued strength and the positive outlook that Sam naturally exudes.

We head to Children's Hospital for the dreaded blood draw. When they call Sam's name he happily sits in his wheelchair as I wheel him into the room. He even gets out of his chair to sit in the blood draw chair but the happiness ends when he sees the blue bands and he realizes a needle is soon to follow. As usual reinforcements are called in and they work their hardest to try to comfort Sam but Sam is beyond comforting. I begin to pray and say out loud let's just make this as quick and accurate as possible. I wish I could say that the screaming no longer bothers me...that I have learned to shut it out but I would be lying. It kills me every time my child screams like that and I will never get used to it. When they finish Sam immediately stops screaming and crying, he smiles, thanks them and says "Okay Mommy, go home?" "All done".

I load him into the wheelchair and as he happily meets and greets everyone we pass I try to put myself back together piece by piece. I load him and his wheelchair into the car and I put my head on the steering wheel and again pray for strength, courage and a whole lot of stamina. I start the car as Sam begins to sing with the song on the radio "It's 5:00 o'clock somewhere"...and I couldn't agree more. As I listen to Sam's sweet little voice trying to articulate the song I grab on to the life raft he's offering and begin to sing along.

This next week will be filled with getting Sam's records, x-rays and CT scan to Dr. Paley and setting up a conference between Dr. Paley and Dr. Thometz. I will then wait for Dr. Paley's recommendations, pray on them, discuss them with my family and make some more very difficult decisions. And I know that when ever I begin to feel overwhelmed a certain little boy will come and give me a hug or tell me he loves me or put his shirt over his face to make me laugh and I will carry on.


  1. Oh Sue, this is so disappointing to hear. My heart sunk when I read your latest blog. I know we have never met in person but I am with you & Sam in spirit & soul! It's amazing how our special children can bring us parents together in support & friendship & I will always be here for you anytime your need me. I will continue to have hope for Sam & pray for any good news to develop. Stay strong hon & know you have a lot of people who truly care about you, Sam, & your family ..

    Melissa Hartley
    Adrian, Missouri
    Proud mom to 3 wonderful boys
    Eric, DS (almost 27), Kasey (19 1/2), & Travis (almost 17)

  2. Thank you Melissa!! I have met so many wonderful people through this blog.

  3. I am too so sorry about the bad news. Your post was so well written I cried more than once and could feel Sam's spirit lifting me along as it does you. You truely are talented an amazing writer and mom.....Kristen

  4. Hi Sue,
    Prayers for you and Sam! I was hoping you were just being superstitious with the 13th thing, and perhaps you were.
    A girlfriend recently sent me an e-mail and it stated "When God takes something from your grasp, he is not punishing you, he is merely opening your hands to receive something better". "The will of God will never take you where the Grace of God will not protect you."
    It also had a prayer attached... "God our Father, walk through my house and take away all my worries and illnesses and please watch over and heal my family. In Jesus' name, Amen."
    I have this statement and prayer on my bathroom wall so that I see it every day.
    Blessings to you my friend!!! As always, whether you feel it or not, you are my inspiration!
    In peace and friendship,
    Raquel and Noah