Josiah turned 8 months old yesterday and today marks one year on this journey with Josiah and HLHS. It was a year ago today that we got Josiah's diagnosis of HLHS and our lives changed forever. I was 21 weeks pregnant, having a completely normal and easy pregnancy. That day we were thrown into a world that we never knew existed, I don't think I was ever even aware of the term congenital heart disease or what a pediatric cardiologist did. I can't even describe the feelings we experienced at that time, but we remained hopeful and as always optimistic. Over the next couple of weeks we began getting more and more bad news about Josiah's condition and his prognosis, yet we were hopeful that Josiah would beat the odds. With every time line they gave us we assumed that things would go as smoothly as possible for our baby. I remember still thinking in May, when I resigned from my job, "I'm overreacting, we'll probably just be home in a month." It amazes me everyday I sit beside Josiah at MUSC that this journey has been so long and so difficult. Yet we still remain hopeful. We have so much to be grateful for this year.
As we have been watching the news this past week and we have seen the devastation in Haiti my heart breaks for an entire nation of children and families that are hurting. They are mourning the loss of loved ones, trying to survive without adequate housing, food, water and are desperate for relief. Even through our struggle God has been so gracious to us. He has met our needs with housing, food, an amazing support system both here in Charleston and at home, and an incredibly gracious church that has allowed Milo to work from Charleston so much. This has not been an easy year but even in the midst of struggle our lives are so richly blessed.
-A heart that holds on
mom2lo Ours was June 16, 2009. I'll never forget that day or the emotions we experienced, especially over the first 48 hours. We didn't really know anything about CHD and hadn't ever heard of HLHS. What a ride it's been! God has been with us every step of the way, providing for our needs and strengthening us, just as He has for you, Milo and your entire family. He is so faithful and so good, even when we don't deserve it.
May God continue to bless you and your family!
Kathy