another anniversary

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.

From this:

 

( the blog post from one year ago, here , and oddly, my final post before moving here to WordPress…another anniversary!)

to this…

(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…

LIVING.

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.

Right Cor?

Um…..Corrigan?

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!

18 thoughts on “another anniversary

  1. Oh my! What a BEAUTIFUL post! Corrigan is absolutely adorable! and What a TROOPER! God can do amazing things, can’t He? I’m glad you and your family are finding hope and strength through the struggle of a disorder. and LIVING to tell others all about it!
    Thank you for sharing!

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  2. How beautiful. I know it had to be miserable for you as his mama, but I’m so thankful for your journey and for the work that God did in you through it all. He is so good in the way that He can change us for the better and work ALL THINGS for our good. It’s wonderful that your perspective is so clear now.

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  3. I am so glad I made the time to read up on my bloggy favs. This was a beautiful post. It’s comforting to me and saddening at the same time as I deal with epilepsy in my little one.

    Mothers are strong aren’t we?

    xx
    Cristina

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  4. I can barely make out the scar in the photo and probably because my little guy has similar ones (different surgeries). I plan to tell all his friends when he is older that he was in a knife fight and the others were all older and bigger and tied him down to get him (it’s a version of the truth, right?)
    Your little guy is gorgeous and your sweet post made me cry.
    A good cry because I’m so happy that your little guy is LIVING!!!

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  5. Your post took my breath away. I can’t even imagine how awful watching your baby suffer like that would be…and I’m so, so glad this year finds you in a better place.

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  6. What a beautiful, uplifting post. I pray that lots of parents who are searching for answers will find this. You give such hope for those who are hurting and do feel like their lives have been ruined because of a serious illness.

    I used to work in the PICU/ER/Transport Team at the Children’s Hospital in Atlanta. I was the one sticking those precious little ones, trying ever so hard to get an IV. My heart would ache so badly for the child AND for the parents. In all of my years working in the medical field, those were the hardest, but they definitely were the most rewarding.

    Well, I wanted to stop by and say thank you SO very much for your sweet, sweet words each time you come to visit me. I really appreciate them more than you will ever know. Kind, genuine encouragement like yours is such a blessing to my spirit right now. It truly helps keep me going.

    Thanks for being my friend. I will keep you and little Corrigan in my prayers.

    {{HUGS}}

    Teresa <

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  7. I cannot even imagine what an emotional journey this has been for you and your family. I’m sure that other people whose children are affected by this will be comforted by your post – that it does get better. That last photo says it all. He is absolutely adorable.

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  8. Mindy, this is an amazing post. I really needed to read it tonight. Yes, I cried all the way thru it. One because I didn’t get much sleep in the PICU this week and I’m emotionally drained.. And two, because as I was there and watched my daughter get ANOTHER central line because they had no IV access I wondered how are we going to get thru this and will it ever get easier??? You are such an inspiration to me!

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