In the last month or so I needed to take a break because as I often explain to people...life happens. I was already to jump back on my blog and wrap up the vacation when three weeks ago Sam stopped walking. There was no event that led up to it, he didn't fall, he didn't bump into something, he just stopped walking. My first indication was when he army crawled into the living room to tell me something. Hmmm...but that's the funny thing about Sam...he doesn't cry...he doesn't complain...he just adjusts. He wakes up each day and he says "God, this is what it feels like to be Sam Mayer and I am thankful." Do you wake up each day and say that??? Do you wake up each day and feel blessed for the simple reason that you woke up?? Would you even have that thought if you woke up with the type of pain and discomfort that would drop you to your knees??
At first I thought it was just a bad day and given time and rest he would improve and begin to walk again. Perthes is a nasty disease that can have good and bad days, sometimes all in the same day. But one day became three days and then a week and then two weeks.
This new development dropped me to my knees as I asked God to heal Sam's hip and allow him to regain his full mobility. As many of you know, my faith is what gets me through the many twists and turns of my journey with Sam. But I am human...and I am weak...and I sometimes wonder if God is listening to me. When Sam was born I didn't spend a lot of time asking "why" I instead asked God to guide me every second of every day. But if I'm perfectly honest...I did wonder why other children with Down syndrome seemed to have fewer struggles than Sam. I was jealous and I wanted an easier path...so I prayed. I'm a stubborn German and I tend to be a wee bit too analytical, call me an A type personality...so I wondered if I wasn't praying correctly, maybe I wasn't asking for the right things because not only did Sam have more difficulty but he seemed to be collecting new diagnosis like an athlete collects trophies. Now I was told Sam had a brain injury and dysphagia along with respiratory/immune system issues, a year later apraxia, a few years later bi-lateral hearing loss and then came cross dominance/dyslexia and more recently Perthes.
If I was a betting person...I would say the odds are not in my favor. My faith was being tested...I wish I knew why and I would rather it wasn't but then again one of the many lessons I've learned is that I'm not in control. This is a really difficult concept for an A type personality and obviously I have had more trouble accepting this than most since I keep getting tested. Recently another friend's son had been diagnosed with Perthes and I again rejoiced but struggled when I heard that miraculously he is not showing any further signs of the disease. As happy as I was for my friend and her son that old doubt crept back into my head and heart, "Why not Sam, Lord??" Again I wondered if I was praying wrong, if I prayed the same verses would the miracle happen? Was my faith not as strong as my friends, did she have a better connection...maybe a direct line that I was not given? Were all the parents that had less to deal with than I did with Sam better connected with God? I began to question the very thing that I thought was holding me together.
In the last week I have struggled with scheduling issues with Children's Hospital and I found myself now yelling at God. I apologized and prayed for forgiveness and I again pleaded to show me, to help me...to be with me.
He then ended the sermon with something that stopped me in my tracks. It was one of those moments when the background and people fade and the message is louder, stronger and more powerful for reasons you do not understand. The pastor said "God Loves YOU!" I began to tear up because that message was the one I needed to hear the most, that my soul longed for. I began to actually cry when I looked at Sam and saw tears running down his face as he continued to fold his hands in prayer. After the sermon we went into the prayers for the church and by the time he said the prayer for Sam I had all to do to keep myself together. I was humbled.
When we got home Sam took 5 steps across the living room and I again broke down and cried. It took me a while to put myself back together and as I sat in my room and got ready for bed Sam told me over and over "Love you Mom, my heart" which I know means "I love you Mom with all my heart". Each time I would answer him back that I loved him with all my heart to the moon and back. This back and forth went on for almost an hour. Sam walked over to my bed from his room next to ours. I smiled and gave him a hug and began to think to myself, he's walking...do I need to go to Children's and have the sedated arthiogram CT scan? I didn't say this out loud but Sam looked at me and said "Dr. Thometz, Childrens, man sleep". And I knew that he and God were telling me that he still needed to go to Children's to see Dr. Thometz and have the man put him to sleep for the procedure. More tears and prayers thanking God for strengthening my faith...to simply believe that he will indeed guide me. I believe the more time I spend off my computer, reading the Bible, praying, talking with Jesus and simply believing in what I hope for but do not see will help God to lead me through my ongoing journey with Sam. Good Night everyone!!