I've been sitting here reflecting on the past year. While there have been more trials than I've ever experienced, I'm also very grateful in a lot of ways. The fun, family, friendships, love, and hope had been great. We still are here with the people we love and surrounded by more family and friends than ever before. I gave birth to the most beautiful and perfect baby boy this year. ..so grateful to have him as a part of our family.
I started following a Facebook page for Hannah...a little girl with Krabbe...who would have been two January 15th and she lost her life this past Sunday to the horrible disease. I read about her family's experience and it sounded really tough...live in nurses...breathing tubes...she couldn't open her eyes...didn't want to be held. I'm praying for this family because I can't imagine going through it...but it seems that it will soon be my reality. I just keep praying for strength and hope.
Emma and Max were both sick for Christmas. All of the fun family get-togethers we had planned were cancelled for us. Josiah and I were so bummed but I think the kids were fine with it and didn't know any different. We did make it up to our family cabin the day after Christmas and Emma got to play in the snow. It was fun but also exhausting. ..Max barely slept. He hasn't this past week. I'm lucky to have some time off of work to catch up on sleep and work with Josiah as a team to keep our sanity through the nights. Poor buddy lost his voice...too much crying with a cold. I feel for him. I want to take it away. But he's still eating from his bottle...still laughing. ..although my ticklish little guy isn't ticklish anymore. He's still cooing at Emma...loves peek-a-boo...watches tv...loving the colors...likes listening to books...can hear. ..can see....wants to be held every minute which is tough but a blessing to be able to cuddle with him. I'm grateful for all of that.
We trekked to Phoenix Children's yesterday for blood work. They are going to do dna sequencing to figure out what mutation is causing all of this... Also so that we know what to test Emma for. The last time they drew blood it took an hour to get it and they almost had to draw from his head but luckily found a vein in his hand. This time they called the IV specialty team right away because they remembered him. It took all of five minutes...thank goodness. He cried longer just about being on his back than actually getting his blood drawn. Now we wait...4 to 5 weeks for answers.
Josiah and I celebrated our 7th wedding anniversary on Monday. We've been together for 13 years. We got to escape for a movie and dinner and it was one of the few times we weren't too tired to talk. We both are feeling a lot of the same emotions...having some of the same concerning thoughts. He's my rock and we need to talk more...it was hard to see a sweet baby boy about Max's age sitting near us...looking and smiling at us. Sitting up on his own...it took everything in me not to start crying. ..happy anniversary. ..the focus continues to be our kids but it's hard to be brave for them. We both agree however that we know we have to remain strong to help each other. I'm so grateful for this man every day and love him unconditionally.
Thanks to all of our family and friends for spoiling our kids this year. I think we can open our own toy store and library :-). Your generosity, love, prayers and support are more than we deserve or could ever ask for and are so sincerely appreciated.
I'm ready to bring on 2015. While I know there are many obstacles ahead...I also know there will be a lot of smiles, fun, laughter and good times. We continue to appreciate the simple things in life and live in the moment.
We wish you and your families a very happy new year and wish happiness and good health for you all.