One year ago, today, I felt hopeless.
One year ago today I sat in the waiting room, after wheeling my baby boy into the OR, and silently prayed that we had made the right decision.
One year ago, today, I felt as if Citrullinemia had taken over our life.
Had ruined our life.
Talk about hopeless…to think that our lives were ruined.
What a difference a year makes.
( the blog post from one year ago, here , and oddly, my final post before moving here to WordPress…another anniversary!)
(can you see the faint scar from the infusaport procedure?)
A year later I can say, with total clarity, that ruined is hardly the kind of life we live.
Yes, I dislike Citrullinemia with all of my being…I cry when I learn of another child who is born with a Urea Cycle Disorder…but listen….these babies are living now.
Thanks to research and modern medicine they have a chance at long lives…
and they aren’t living ruined lives, though at the moment it might feel like it, they are just living different lives.
(Can you see it now? A little sliver of silver?)
One of my dear friends, Lord willing, is driving home with her little man right now after yet another hospitalization due to Citrullinemia. More and more frequently I get emails from her that all begin the same way, “…bet you can guess where I am typing this email from again…” and my heart sinks.
Just this morning I read her words and cried as she described her sadness at the pain and suffering her little baby had to endure due to multiple needle sticks…how the dreaded “liver transplant” discussions had begun…I could feel her hopelessness in the email…and it boggles my mind that her email fell on the anniversary of the day that we chose to stop the pain and have the infusaport implanted in Corrigan…how it would have been 24 hours ago, one year past, that I called Mark near midnight, sobbing, because my baby had bled all over my chest from the IV in his scalp…how I couldn’t DO this anymore…how the very idea of Corrigan suffering another day felt like more than I could bear…
and here was my friend…on the exact same journey…the same week…how similar the experience has been for so many of us…parents of these amazing kids…forced to live a different life because of a Urea Cycle Disorder.
(Did you notice the port bump…just under the scar?)
If you are reading this blog and you are the parent of a child with Citrullinemia…I want you to know…it gets easier.
I never thought I would utter those words.
Oh, people told me it would happen. But when you are in the middle of it…when you are in the hospital, standing next to the bedside of your baby for the THIRD time in a month, it is hard to see more than a few days in front of your face…and the hopeful words of those that have traveled the path before you ( thanks Murissa!) seem hollow when you are watching someone try and find a vein in your baby’s foot, or wrist or scalp…but they are true.
(Hey there Corrigan, why so serious?)
The first year is the hardest. Maybe your baby will have a harder time a few months past that…but eventually, things settle down…the growth spurts will slow, the doctor will find the best recipe of meds and protein for your child, you will become comfortable with the routine of your child’s disorder and you will venture out in the big bad (germy!) world a little more…bit by bit you will find yourself forgetting about Citrullinemia with each breath that you take.
Oh, it never goes away…you never completely forget…but it will stop consuming your every thought…you will begin to see your child as the wonderful miracle that she is…the amazing life that he has before him…and you will enjoy every single moment because you, more than most others, will know exactly how hard your child fought to be here.
Life is different with a Urea Cycle Disorder…but it isn’t ruined…though, right now, you might be at the part of the journey that it feels that way….
Corrigan LIVES with Citrullinemia…he doesn’t SUFFER from it.
The ball is supposed to be…well…er….nevermind pal. I am glad that you are having fun!
Phillipians 4:13 I can do all things through Christ which strengtheneth me!
(Remember, Urea Cycle Disorders are rare and funding for research depends almost solely on the efforts of those closest to the cause. YOU are close to the cause by way of our “friendship” in this blog…if you would like to help at all, even a single dollar helps, please donate through the National Urea Cycle Disorders Foundation website, here. )
more wordFUL wednesday posts at Seven Clown Circus!