Friday, October 14, 2011

Down Syndrome Awareness - two years later

Here we are; a year after I wrote the story. I am sitting in the hospital next to Tomas' crib while he sleeps. He has been inpatient for 7 days in order to have some procedures done and some tests run. This makes 4 hospital stays in 4 months for a total of 20 admissions in his 32 months of life. Tomas has had a rough few months; 2 line infections, one that was pretty severe, degenerating gut motility, progressive liver damage from the tpn, re-discovery of the ASD in his heart, a recommendation from one of his specialists that he be evaluated for a mitochondiral disorder, chronic neutropenia which prompted another bone marrow biopsy and some neutrophil testing, and another fasting study to get to the bottom of the metabolic disease causing his hypoglecemia. The goal of this hospital stay was to be able to safely reduce the number of hours his TPN runs in a day, in the hopes that we can slow the liver disease and possibly reverse it. In order to do this he has to be able to fast as he can not take in enough volume by tube feedings anymore to reliably count on enteral feeds as a source of glucose. Before admit he was fasting 4 hours and we are going home tomorrow with a plan for fasting 6 hours.
What is glorious about that? Grand, beautiful, splendid? Nothing. I miss my girls, I miss my husband, I haven't unpacked my house, I know hospital life inside and out. I have minor anxiety attacks when I see a NICU unit, and had a full fledged PTSD episode when Tomas was sent to ICU even though it was just for some testing and he was healthy. How is it that I can laugh away an afternoon in a windowless room, hold my moaning, near comatose hypoglycemic child in the evening and then smile again with the sunrise? The answer is so easy.
Tomas came into this life with no guarantees. I never had an expectation that he would live a long healthy life. I just needed to get past the first 3 days and the first surgery. Then his liver stopped working when he was a week old and again my husband and I just waited. Next came the blue spells which left me thinking that this time for sure I was holding my blue, limp, dead baby. After that came that horrible, terrible, angelic night that he coded with an angel by his crib.  Many more life threathening events followed, waxing and waning with his given health status, up until I got a fresh reminder in August with the sepsis and another blue spell. For my girls I fully expect that barring a tragic accident they will grow up and grow old; it is just not the same for Tomas. I have no idea if an acute illness will kill him, a chronic illness will kill him, or barring any tragic accidents he will grow up and grow old.
Point being that every sunrise is something to give thanks for, even the ones that happen here in the hospital. Each day is a gift, filled with gratitude for the continued existence of my son, my daughters, my spouse, my life. I do not ignore the difficulties my family faces, or sweep them aside, or make light of them - I couldn't if I wanted to as they encompass every aspect of it. Everything - right down to needing toilet paper but being unable to just run to the grocery store for it - that kind of everything. Instead I wrap them around me, build them into my being and then take a step. Somedays it is just one step, getting out of bed, those are usually the days after I've been notified of something else gone wrong. Other days, the glorious ones, the ones that I flashback to at the crackle of a leaf, or the scent of the ocean, or the warm sun hitting my cheek, those days my God I swear I can soar. Most days fall in between; the drudgery of day to day living. But all those days snap together to make the picture I see. And the picure is good and happy and at peace in this moment.


  1. I know you say you are not an inspiration, I have said that many times before myself.I have said that I don't want to be an inspiration if it means my child has to suffer and fight. But, I say that in one breath and then,in the next I realize that God has called me to be whatever I am called to be, all because of this child of mine. And if that calling means, that I bring strength,or more importantly, that Zoey brings strength to a family who got a whole lot more than just an extra chromosome, with their miracle child,, then so be it. To me, you are a regular mom and an inspiration. I think we can be both.
    I have been reading and soaking in all your beautiful words. Words overflowing for your beautiful boy and your precious family. Words filled with faith and filled with a belief that this life was not our choosing but what we choose to do with this life, is. And you choose to embrace the beauty and the pain and to me, that is beyond inspiring.

    I like you,have never looked for guarantees,from her first breath I realized how fragile she was and at the same time, how incredibly strong she was and is. Each of her breaths I have appreciated so much more and then with cancer, I was able to see typical children fighting like warriors and then I knew, with crystal clarity that ALL of our childrens breath, everyday, should be appreciated. My tiny 4 1/2 year old, 23 pounder has taught me more than I ever would. have learned otherwise. And Tomas is the same.

    Thank you for sharing your heart and your boy with us and today I send love and prayers from afar. Strength for the journey.

  2. I was just thinking about you and Thomas today. I hadn't seen a post from you in a while. Hope everything is ok.