A blogger friend asked me awhile ago, if i had ever wrote about our story on my blog. I know i've referred to different events that have happened over the years. but i realized i have never put it down for you, the reader to read, start to finish. so if you're interested, here is the story behind the title.
10 years ago when our first born son was born after several years of infertility and sporadic miscarriages, we were ecstatic. Our prayers had been answered and here we had a son. The first year was a wonderful year of bonding for the 3 of us. But there were little things that didn’t seem to add up. Josiah didn’t seem to be maturing and reaching those baby milestones. My pediatrician didn’t seem worried and didn’t order any testing til after Josiah’s 1st b-day. When we finally got some answers he was 18 months old and all we knew was that he was delayed. Whatever that meant. We enrolled Josiah in physical therapy and speech therapy. Over the months progress was slow and no one had anymore answers than we had at the beginning. We were in the midst of moving our family to Idaho while Michael was still working in Seattle. It was hard to be apart half of the week and I wasn’t’ dealing well with Josiah’s delays and the uncertainty of the future.
I remember dropping Michael off at the Boise airport and heading home. I cried out in my heart to the Lord: “God, I can’t take it anymore. I need to know what is wrong with my son.” being a person who needs to know and have closure with stuff, this was a real cry of my inner heart and soul.
As I reached home, I got Josiah set up with something to keep him occupied and jumped on the computer. I remembered that someone had mentioned a website that had an index of special needs and their symptoms. I read a few that I had heard of, but none seemed to fit. Next I decided to go ahead and read alphabetically. In the A’s I found Angelman’s Syndrome and read a list of symptoms my son showed. I wanted to laugh, I wanted to cry. Here was my answer. I had a name, I had a diagnoses. Oh, but now here was a answer and that meant he wasn’t just slightly delayed and would catch up afterall.
At Josiah’s doc appt that week, I brought in the pages I found off the internet and showed my pediatrician. He was hesistant, but I was insistant. He finally relented and ordered testing.
A month later we got the phone call that indeed Josiah tested positive for Angelman’s Syndrome. Oh, how I cried. Tho I wanted to know, I never wanted, nor thought I’d ever have a child with handicaps, special needs, or a diagnosis. After so many years of infertility, so many dashed hopes with miscarriages, this wasn’t suppose to happen. Where was God now?
We had moved back to the Seattle area to be together as a family, to be close to extended family and close friends, and to allow me to get my head together. I was deep in grief over my son’s disability and started to question my faith in God, my understanding of his character, and where Josiah and I fit in all this. I remember being angry, with picking fights with Michael over God’s character and how He could do this to me, to our family. I remember crying myself to sleep, cuz there didn’t seem to be a solution. I couldn’t just leave my husband and son and start over, I couldn’t take Josiah to the doctor for a surgery that would cure his problems, I didn’t have a magic wand to wave. And yet, I didn’t feel like I could live with the way things were.
Over the period of the next year, I met with a sweet christian gal who ministered to me thru our church’s Stevens Ministries. She listened to me, she prayed for me and with me, she shared scriptures with me. She held my hand as I struggled with deep truths of God. Somehow I came to realize that God is indeed a good God. That despite my circumstances, my life, my feelings, God is good. And that despite how much it didn’t make sense, I could trust God. I could hold onto Him as I struggled to make sense of my life. And whether I ever understood His ways, I could cling to Him, trust Him, and find safety beneath His wings.
I read a lot of psalms, the book of Isaiah, and many other comforting scriptures. Slowly, I began to accept my life, my son and our family for who and what we were/are. We learned how to care for our son, how to get help when we needed it, and how to have fun with a son who doesn’t talk and didn’t always understand. Who couldn’t do what others his age could do physically. Then we noticed every difference, now we rarely notice at all.
Fast forward to Jan 2, 2003 ....
Part 2 Coming Soon
I've got the blues....
1 day ago