Is this beginning to sound like a broken record? We just learned that Sarah has a very mild rejection. This is the 2nd time out of four that the biopsy has confirmed some form of rejection. While I normally would like to have 50-50 odds, I'm not really digging this. Patty and I are fully aware of this new "normal" we reside in but its beginning to grate on me like nails on a chalkboard. My frustration level is increasing and I don't like the person it has made me at times. Obviously, PTSD cannot be underestimated. Somehow I must have believed I could handle the stress and continual "surprises" like it was nothing; however, that is not the case. I would ask that you please remember me in your prayers, that God would restore balance and sanity to my daily life and that I can be the father and husband that He has called me to be. But enough about me.
As for Sarah, the biopsy results dictate a return to Children's for the steroid IV for four days. The good times keep on rolling. Based on her history the past six months, the docs prefer to not mess around with ANY form of rejection. This is understandable and a testament to their care and concern for Sarah. We continue to be ever so grateful for the doctors, nurses and other staff at Children's. Our road would be so much more difficult if we didn't live in such close proximity to such a hospital. I may be frustrated but we know several families who have had to travel from out of state to Children's for long stays. They have other children who must come with them or stay home with the spouse. I wouldn't survive that scenario and praise God that He has provided those families with super human strength.I ask that He continues to do so.
On the sunny side, they aren't noticing a fatty liver, which had been a concern the last biopsy. You have to take the wins where you can. Sarah seems to be doing fine otherwise. Her personality continues to grow as does her body. She is a shining light to all she meets and such a charmer. All our kids are cuties but Sarah's unique situation has made her a walking testament to God's grace.
It is also a difficult time this weekend for us. While we are celebrating the 1 year anniversary of Sarah's transplant, we are remembering the donor family and the grief they are re-living for a different type of anniversary. This sobers me when I being throwing a pity party. Our life would be missing a vital piece if Sarah were not with us. I can't imagine losing any of my children at any time in my life. So, even though things aren't always cherry pie and whipped cream here, Sarah's life alone is a constant reminder of so much. We have found that this is all part of God's plan. Our older kids are learning a great deal about compassion and other things. That will serve them later in life and has already made itself visible through Arianna's faithfulness with praying at school and Katarina constantly praying at meals that Sarah's tummy would get better.
I know this is a very lengthy post and an emotional one but I can't hide where I live. This is what our lives contain at the moment and hopefully this will show other people they are not alone in what they are experiencing. If we can encourage other families struggling through serious circumstances, then I willingly accept the craziness and instability of our own situation.
Kirk
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