Wednesday, June 17, 2009

Tomorrow is almost here...

This has definitely been quite the journey for us all. I imagine everyone has a picture of what they want for their family and how things would go. I have been looking back at all of the blog posts leading up to Kylie's arrival, and through so many of the pictures we have taken since she was born. Most of the photos and posts match up with the happy moments we always dreamed to have for our precious Kylie...

...I don't think anyone would ever expect to have pictures or blogs detailing the crazy times we have been through with her diagnosis of Infantile Spasms. Sometimes I can't help but wonder if this has all been a bad dream (okay, nightmare), and soon we will wake up and go back to the perfect dream that we wish for our baby, for our family. How did we ever get here?

We were devastated with the diagnosis, and thought every dream we had for Kylie was wiped away, and our world was slowly closing in on us. In the beginning it was incredibly difficult for us to see beyond the negativity and begin our new way of life with Kylie. Through lots of prayer and support we were able to pick ourselves back up and begin again. It's amazing how much more clearly you can see and focus when your head isn't buried in fear. Granted it was not easy, not in the slightest...we still struggle with it from time to time. We constantly had to go back to the list we created, to strengthen our faith. It was also important for us to learn more about IS and find people that either had first-hand experience, or ones that could really understand how serious all of this is. It is through their personal battles and renowned support that we have been able to move forward and be ready for anything that comes our way...lately that has been lots of smiles from Kylie :)

We've had a heightened sense of hope since her seizures stopped. I can't believe it, tomorrow is our last shot of ACTH. At first I wasn't sure how I was going to be able to give my baby girl a shot, and now we are quickly approaching the last one. Matt and I are beginning to get worried about what the days, weeks, months, and years ahead will look like for Kylie. She is utterly amazing and we are so glad that He chose us as her parents...we are the lucky ones! It is our prayer that this is the end of the seizure and drug road for Kylie...nothing but rainbows and smiles from here on out.

We know there is still a long road ahead of us, but He will help us get through it all. He is always with us, we just need to call on Him when we are in need, and remember to thank Him for all He has done and for the love that He has for us. No love is greater than His.

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