God's faithfulness amazes me. I am nothing without him. He has been with us every step of the way and has continued to walk with us every day. He talks to me, teaches me, reminds me, loves on me, goes before me, listens to me, comforts me. I could never do this without Him, I'm so glad He promised to never leave me.
Caleb had a good and full life. For most of his two and a half years he got to be a kid. Even with his many physical limitations he got to experience life. He went to church and played, he played with his toys, got to go outside, watched lots of Barney and Curious George. He wasn't sick very much. His first major surgery (for his feeding tube) was just 3 months before he died. His life wasn't hospitals and procedures and tests, even though we did have those, and for such a young child he had more than most adults, for a Mito kid it was pretty minimal. His body just gave up so quickly that we never could have predicted what would happen in that short 4 day hospital stay. That Wednesday morning all of a sudden his lungs and heart started to give out, and just a few hours later he was gone. I'm glad he didn't suffer, glad he didn't have to endure so many things that kids in his situation sometimes do.I couldn't have wished for a better send off for him. He was surrounded by his family, who all got to say goodbye. It wasn't rushed, each person had a chance to tell him how much he meant. Jason and I took turns holding him at the end. He left while I was holding him, and his body gave up when Jason had him.
I'm so glad that Allison got to be there. She didn't understand exactly what was going on, but she came in a few times to kiss him and tell him goodbye. She got to experience some of it with us and I will be forever grateful for everyone who made that happen.
We couldn't have made it this far without all the prayers, love, and encouragement of everyone. Friends, family, people we have never met. Thank you to each and every person who has supported us over the last 2 months. We are so thankful. The meals, the gifts, the money. Every bit has been so overwhelming we don't hardly know where to start in our thank yous. Please know that the love we have felt has been so amazing and from the bottom of our hearts we thank you.
It's funny how when you get in the attitude of thanks that things just keep coming to mind. I really could go on and on, but for now I'll just give you 2 more.
My husband, the last 9 years have been crazy hard sometimes, but in this chapter, I couldn't have asked for a better partner. The unity that we had on that Wednesday was nothing short of a miracle. Our hearts were tuned to God and our ears were open. The strength we had was not our own. I'm so grateful that we have been able to lean on each other through this time. We have talked and cried. He understands this pain like no one else on this earth. I am so thankful for the amazing Dad he was to Caleb, and for the partner he has been for me.Last, my little gift, Jordyn. Jordyn, you were our little surprise. We hadn't exactly planned on getting pregnant with a 7 month old and a 2 1/2 year old already. There were many times I questioned God on his timing during that hard summer of puke and searching. You were 2 weeks old at Caleb's first MRI, and 4 weeks at his diagnosis. We didn't really know what was in store, but looking back I thank God for you everyday.
For those that don't know, Mitochondrial Disease is a genetic disease that is passed down by 1 or both parents. Once you have a child with it, they pretty much tell you not to have any more kids. (that was our experience anyway) God knew what he was doing all along, his timing was perfect. Thankfully neither Allison nor Jordyn have shown any symptoms of the disease. I always wanted 4 kids, and while it didn't really look like what I planned, I have 4. Only two of them live with us, one is with her Mom, the other in Heaven, but I do have 4. I can't wait for the time when we can all be together.
Love,
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