Tuesday, May 12, 2009

4 Years Ago Today

Well, today, May 12, is the 4 year anniversary of our first diagnosis. Am I the only one who remembers their date? I don't mean to over-dramatize, but for me it was a date as much to remember as my miscarriage. Many of the same feelings and emotions. So, for my entry today I want to walk down a memory lane that took me closer to the Lord and showed me His great love for me and showed me that He really does care in the tough times. He cared so much, He gave me these great memories that culminate into His perfect and obvious orchestration of my precious Ian.

After Ian was born, but before his diagnosis, I was watching a Praise Baby video with him. As the music was going and the kids on the video were playing, there came a part with this boy in a wheelchair that had obvious special needs. It was the first time I had seen that part in the video, and I'll never forget the emotions that ran through me. I believe it was then that the Lord told me about Ian. (not audibly, but in my heart) Here's the part that took a while to figure out it was Ian. Ian had been born, but we had not yet had the diagnosis. I was pregnant with Avery as I watched the video. So, of course, I was convinced that it was Avery He was telling me about. It didn't take me long after our diagnosis for the video to hit my mind. It all clicked at that moment. The Lord was telling me about the specialness of Ian.

Ian is also the only child that I believe God gave us his name. Ian was never a name I would even have thought of. We had planned on naming him Brennan. I won't go into the long story of how I believe it was to be his name, but I remember it all happened as I was driving home. So, I immediately called Jim and asked him to look up the spiritual meaning in our name book. His name means "God is Gracious". I didn't argue. Jim and I both knew that was to be his name.

One more thing. I had chosen for my life verse(s) Jeremiah 29:11-13 early on in my Christian walk. At one point when I was so distraught and brokenhearted about the diagnosis, this part of the scripture reminded me that I'm not alone. "...plans to give you hope and a future." This wonderfully reminded me that as I seek Him and pray to Him, MY SON HAS A HOPE AND A FUTURE. It was then I realized that this part of scripture was not meant only for me to have as my life verse, but it was meant for me to have to turn to in that particular part of my life (and still today). God chose it for me to have it inbedded in my heart for just the right time.

Oops, I thought of something else. Again, I will shorten this story. My dad and I had never had what you'd call a great father/daughter relationship. It was just kinda 'there'. After Ian's diagnosis, something happened. See, my mom and dad had a son die at the age of 5. That son had Downs Syndrome. This was a place in our hearts where we could totally connect. It was not until we were talking about Ian one day that my dad opened up about things about my brother. He had NEVER talked about it to me before. Anyway, our relationship is so much different than it used to be. It's more like how its supposed to be.

So, I am one who believes that ALL things happen for a reason (even if I never know that reason this side of Heaven). And I believe that it's my role to bring all the glory to God that I can in all my circumstances. I fail miserably many times. But I do believe that Jim and I live out our life with our 3 Fragile X children well. (Again, not always, but overall) I want others to see a life of hope in me, not a life of pity. Afterall, Christ is all about hope.


SB said...

I just had my 17 year diagnosis anniversary. Floored me when I realized how LONG it had been. Didn't FEEL like that long.....

So glad that you shared your story.

And I believe like you, ALL things happen for a reason.

Jen said...

I don't remember the dates, but I certainly remember the emotions and events of "the day."
I believe that God spoke to me a few years before Kyle was born. There was a girl and her sister that moved to our high school--both I'm guessing had a diagnosis of mild retardation (maybe FX????--I often wonder now). One of them was in my homeroom, and although I didn't go out of my way, I was nice to her..not sure too many other people were...I know some "talked" to her, but they were really making fun of her. She wrote in my yearbook, can't remember right now, but it was maybe 3 or 4 words...friend was one of them. I remember so clearly walking with her in the hall one day--this was 20 years ago, and I remember the exact spot in the school-- and thinking, "If I had a child like that, I would show them the world." When we got Kyle's diagnosis, that moment came back to me in an instant.

Sarah said...

What a beautiful post. Even though we do not share the same religion, I also believe things happen for a reason, and I definitely feel we were meant to have Quinn. I don't remember the exact diagnosis date, and it was less than a year ago...but I definitely remember the moment we got the call. After that, I was in a fog for at least a month. Anyway, I hope as we continue to adjust, we experience the same equanimity you do about it.

Umma said...

What a beautiful post! I've said countless times that Monkey was the child we were meant to have and that we were the parents he was meant to have. We all 3 needed each other for some purpose. I have no explanation of why I feel that way, I just do :-)

I don't remember the date of our diagnosis, I was in total shock. I hardly remember anything of that period. I did a bit of journaling so I know what we were told and how we were told but otherwise it feels like someone else experienced it. Like I was just an observer.

the other lion said...

Thank you for sharing your beautiful story. I feel the same way about my son's diagnosis. I didn't need the doctor to tell me; I knew when I was pregnant. I believe that was God's way of preparing my heart and mind for the future. I love the verse, "Be still and know that I am God."

Betsy said...

I don't have a date either, but definitely remember the whirlwind of emotions! I love that verse in Jeremiah, too! :)

Anonymous said...

I really believe in that awareness or knowledge that is God-given. I have only recently learned an experience like that can be called an 'inner locution'. Barbara