I have killer genes, do you?

It isn’t like I can forget the facts.

It isn’t like these past 18 months of stability have given me amnesia from the reality of his disorder. At some point though, you just have to kind of put the scary stuff into a compartment in the back of your mind and get on with life. Until you wake up one day and something reminds you of the cold, hard truth.

GOT KILLER GENES?” the lead in to the article asks…

Why yes…thank you for reminding me. Yes, I do. And so does my husband. And thanks to those 2 in 4 odds, Connor probably has them too.

We know for sure that Corrigan does.

“A NEW GENETIC TEST COULD IDENTIFY THE MOST HORRIFIC AND FATAL DISEASES IN CHILDREN” it goes on to say.

Horrific.

I click on the link to read the story on ABC news.

I know that I shouldn’t.  I mean, I already know.

FATAL.

The article is about how a blood test, or cheek swab, can identify whether or not you have the recessive genes, KILLER GENES, for 580 diseases.   That way you can know way ahead of time if you and your spouse have the same recessive genes.  We all have a handful of ’em.  The rarity is mixing up DNA with someone that happens to have the same KILLER GENES as you.

Mid-way through the article there is a link…”See all of the genes hereit reads.

My hands are shaking.  I know better than to look. Besides, I already know.

It is all tucked away in that little compartment.  The one that, if I am brave enough to slide open the door to, I hear the voice of that cold, matter-of-fact flight medic that answered my terrified question “Is he going to die?” with “It is a real possibility.”

No “I’m sorry” before her answer.  It would have been so much easier to hear that she was sorry for uttering the words that will echo in my mind for the rest of my life.

I know the possibility.

FATAL.

Damn if I don’t click on the link anyway. Because, c’mon.  You would. Right? To see it confirmed in tiny print?

It’s there. No surprise.

215700 CITRULLINEMIA, CLASSIC ASS1 metabolic

I won’t lie. The first word I uttered when my eyes found it there, nestled among the others that have affected so many of the children of people that I now love so dearly, was not pretty.

The granddaddy of all curse words.

The word no sooner left my mouth than the tears filled my eyes…

I311250 ORNITHINE TRANSCARBAMYLASE DEFICIENCY, HYPERAMMONEMIA DUE TO OTC metabolic

207900 ARGININOSUCCINIC ACIDURIA ASL metabolic

237310 N‐ACETYLGLUTAMATE SYNTHASE DEFICIENCY NAGS metabolic

237300 CARBAMOYL PHOSPHATE SYNTHETASE I DEFICIENCY, HYPERAMMONEMIA CPS1 metabolic

The compartment door is now open.

The morning has been full of moments that have, though stressful and unrelated to the article, taken my mind off of what I read. For a little while at least. Brief moments when I am trying to help the appliance repair guy find some screws for the dryer door, or when Corrigan throws my coffee onto the floor, or the dog takes a poop on the sidewalk instead of the yard.

But it keeps coming back to me…

FATAL

It is hard to shut the door once it is open.  It will close though. Slowly.  It always does.  Sometimes, like after the death of one of our UCD community’s children, the door is kicked wide open, the feelings so raw and real it is hard to think of anything else.  But the door will close. It has to or we will lose our minds.

I will spend today watching Corrigan play and my heart will pound in my chest.  I will try to keep busy, filling my day with busy work and lots of music playing in the background so that I do not focus on the “what if”s. “Would it be harder to lose him now than 5 years from now? Ten?” I will shake away the darker thoughts and spend time in prayer with God. He forgives me my tone, He understands my fears, He wants me to come to him with all of it. Even if it ain’t very pretty.

I will spend today sniffing the back of Corrigan’s neck, taking in the scent of his life-saving medicine that seeps out through his pores…that lingers on his breath. And I will be thankful. Thankful for 2 1/2 years with him. Prayerful for decades more.

I will choke back the fear so many times today that my throat will hurt from the constant constriction and my head will throb from the thought of it all. I will pay more attention to the details of today and tomorrow the words will be more faint.

Tomorrow I will close my eyes and not see the word FATAL on the inside of my eyelids.

The compartment will close again and I will be able to focus on the pure joy of him instead of the darker possibilities.

Because like Mark said, as I stood in the hallway with Corrigan clutched tightly to my chest, barely able to speak this morning…”But Mindy, we are all dying, right now…we are all on our way out of here. Why not focus on what is here now instead of what is out there..beyond today?”

I can do that.

I can.

I can. I can. I can.

kind of.

Tomorrow.



9 thoughts on “I have killer genes, do you?

  1. Wow! I’m speechless! I’m so sorry…
    It is so hard to take one-day-at-a-time, but to maintain sanity, it’s good practice. I’m getting a little better at it 🙂

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  2. Hi Mindy,

    Life ending is there, we can’t escape it. Trying to hide from it doesn’t make it go away. Neither does dwelling on it makes it any easier. You have today, tomorrow never comes, it is always today.

    You kow as well as I that trusting in God, having faith in His wisdom, can give us some peace. Actually all the peace that we need. Remember this from Psalm 139:16, “Your eyes saw my substance, being yet unformed. And in Your book they all were written, The days fashioned for me, When as yet there were none of them.”

    This applys to all of us and should make us realize that now, today, is what we should be living for, not tomorrow. Let tomorrow worry about itself. You have today, everyday, and for that we should be thankful. God will give you the strength that you will need when tomorrow does come. Better yet, He will give you peace and all the joy that you can handle now, as long as it is today. Today is never the end, it is always the beginning.

    Enjoy the day, each day that you have, for it is not of your making, it is the gift of God. Whatever happens is in His hands and He only wants for you to trust in Him for today. You don’t have to worry about tomorrow, God will do that for you.

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  3. Oh, Mindy!! See and here I am pouting my kids are going to school. I am so sorry that your mind has decided to torture you today. I am praying that the “door” closes quickly. Hug that little boy for me. Anytime you need some time out of the house let me know and maybe we can go find something to do. Kids and all if need be. Maybe we can exchange a dose of sanitiy with each other.

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  4. This post brought tears to my eyes. It’s always the harsh truth that hurts the most. I know that none of us are guaranteed tomorrow, not just our kids. But I know that we don’t take our children for granted like some. We will cherish them every single day of their LONG lives. We will teach them to live for each day for tomorrow it might not be here. They will inspire us, and we will all get through this together..

    Hugs!

    Stacy

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  5. ((HUGS)) That must be so hard. Very touching post. Your husband and dad are so wise. The Lord is in charge of our comings and goings on this earth. I think of Corigan all the time and the fact that the Lord gave the man a word about what his true condition was and you were able to run it by the doctors. And even in their stubborn unbelief it was found to be true and he was saved. What a glorious miracle!! I can’t imagine what God has ordained for such a child that He miraculously saved.

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  6. Pingback: International Rare Disease Day 2012 |

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