Most days are good days now. The grief isn't quite so consuming. However, I feel this makes the pain almost worse. It's like the first year following Malachi's death was a dull ache--always near, consistent, and reassuring me that he was really gone (well a dull ache combined with the horrific pangs of sorrow and the exhaustion of life with a newborn). But that dull ache became like an ever-present companion. It was my new normal.
But then life seems to get busy and God brings you out and gives you new life once again. And the dull ache isn't so constant. So then when the pain comes its like a tidal wave. You've gotten used to not kicking your legs every moment to stay afloat and now you're about to go under. I am thankful the I have a husband who is quick to be a lifesaver, throwing me a rope of faith, reminding me Who is in the creating and sustaining of the storm.
I don't know what my normal is these days. I struggle with the ups and downs of life as a wife, a mom of littles, and the grief of my two babes no longer here. There are days of good, days that are easy even. And there are hard days. There are days like today where I'm all of a sudden hit with a blog or Facebook post that tries to shake my faith. I will not let myself become bitter about what I don't have. I will do my best to rejoice with families who have reason to rejoice over their littles.
Malachi was diagnosed with what is referred to as CHARGE syndrome--he had all kinds of internal physical deformities that came along with that. The first five months of his life were a fight to fix nose, heart, lung, and esophagus issues to ensure survival. He fought hard. He was making progress. He was later also diagnosed with DiGeorge syndrome--our baby didn't have an immune system. The only way to possibly rectify this issue was a thymus transplant. There is one little boy who had gone before Malachi with both charge and DiGeorge that I had been aware of. There is only one place where and one doctor who performs this experimental surgery. This little boy received a thymus transplant and is doing better than anyone could have hoped or expected. His mom posted a message she received from this doctor with good results they received from his latest t-cell tests. His counts are in the top quarter of all her patients at this time! What a miracle!
Unfortunately, my first inclination wasn't rejoicing with this family. It was bitterness because this same doctor denied us the chance for this operation. How despicable I am! Because this doctor is performing this procedure in such a pioneer fashion, really the first of its kind, she only will move forward with it on patients who are most likely to survive. Malachi was still requiring a ventilator for respiratory support and would also require another open heart surgery in the months to follow. God closed the door.
And because it is God who ordains the every days, I will trust Him. I will fight my battle with Satan who wants me to doubt God, to doubt His goodness, to doubt His truths--the very bedrocks that helped me persevere through Malachi's life in the hospital. I will not give up that fight. I will pray for strength to rejoice in the little (and big) victories that I see these kiddos and families take part.