The only question that matters.

I had many of you reply to my post about Evan’s heart and the post with follow up questions concerning Evan’s surgery.

Many of you were pretty surprised and “impressed” how much I knew.

Truth of the matter?

I know too much.

I can ask the best heart surgeon in the world, the best cardiologists from around the nation, read every journal article, send questions to researchers about the latest medical advancements…and no one and nothing will be able to give me a straight answer for the only question that plagues my heart daily.

“What can be done so I don’t lose him?”

That’s the only question that matters.

When we were consulting with Boston and meeting with our local team, Craig and I asked every question you could think of.

From surgical outcomes, surgical technique, expertise of the surgeon, patient volume in the centers, best case scenarios, worst case scenarios…you name it…we asked it.

Both places, in their own words, asked us to think about something when making our decision.

“What decision can you make – surgically (meaning choose the Fontan route or full repair route) – where if something happens…you will be ok with that happening?”

Rephrased:

“What surgical choice do you  feel like you can make…and if you lose Evan from it…you will be ok with that?”

It’s a question we had to ask ourselves.

And we came to this conclusion.

Neither one.

Because in both situations, we’d lose him.  And no one – not a single parent out there – would be ok with that.

The sad, hard truth of all of this is that there isn’t a cure.

There isn’t a cure.

Read that again.

There is no cure.

So the surgery may “repair” but the heart may never truly be whole.

The problem with CHD is it takes our children like a thief in the night.  A complete and utter coward.

Our children fight tirelessly day and in and day out.  And when we think we have reached that point where we can take a breath, the thief comes in and robs us of the tiny people that  are our  whole world.

I have been witness to the two dichotomies of the Heartland in the past week.

Complete, miraculous healing.

Complete, devastating loss.

One gives us immense hope that all will be ok.

The other crushes our spirit and is unforgiving in its pursuit to take away all the hope we have stored up.

When we face trying times like these in the Heartland, the anticipation of grief for our own child suddenly grows stronger. The fear, the worries, the “oh my god I cannot lose him” moments come faster and more frequent.  The moments of fleeting sadness when we look at our child play and laugh and we think to ourselves “I can’t bear to be without that smile” suddenly linger and don’t go away.

We scoop up our children in the middle of night, wake them from their slumber, and say prayers into their messed up hair as he/she sleeps peacefully in our arms.

We stop the dish washing when we look over and see him singing or dancing, quickly wipe our hands, and join in the off key chorus and grasp sticky hands to get in a dance step…and tuck that toddler, two step memory safely in our “Evan” (or Bodie, or Ella, or Tyler, or John, or Bennet,  or Izzy, or Zoe, or Emma, or Michael, or Xavier, or Caleb, or Killian, or Tess, or Vivi, or Adelaide, or Maverick or the many more warriors we love…) box.

We decide that last 30 minutes of sleep isn’t as important as snuggles on the couch with his sippy cup of milk and “Dora.”

The ache in our hearts for what we fear the most never goes away.  No matter how well our children are doing.  No matter how they sail through surgeries.  No matter how normal our lives become.

The ache in our hearts for what we fear most….never.goes.away.

As we face Evan’s surgery in the next 12 days, I am reminded that no moment should be taken for granted.  Not a single moment.

Not the tantrums at 2:30 AM.

Not the battles to eat at breakfast.

Not the “I do it!” myselfs to put it on a pair of pants.

Not the crash and boom of toys getting thrown and heads getting “bonked.”

Because, the ache.

The ache doesn’t go away.

The question of “What can you do so we don’t lose him?” is ever present.

In every moment.

Comments

  1. Debbie Fields says:

    Your comment, “Many of you were pretty surprised and “impressed” how much I knew. Truth of the matter? I know too much. ” left me with great concern as I left to take our 20 year old HLHS to college. Believe me, I do not in anyway want to make light of the suffering that you are going thru at this time. I too have been there. My comments are not in anyway ment to judge you or slight you, please know that they are to help you not take the rode that we took. It so sounds like you are on that rode. I did not know that our daughter would be born with her condition inspite of numerous ultrsounds and an amnio. We did not have the choice of transplant or Norwood due to her mis diagnosis atnbirth. She had a valve repair at one day of age. I t was not until 92 days in ICU and numerous arrest at our local hospital (Memphis) that we were told the Ethics Committe thought that our best course was to sign a no ressesitation order and let nature take its course. I went into mommie overdrive at that point! (Remember in 1993 there were no home computers.) We began calling local hospitals and learned of a Dr. that was doing “experimental surgeries” in Philly. LONG STORY SHORT, we airambulanced Mal to Dr. Norwood. There were so many times in her first five years that I wondered what the furture would bring…all the same questions you have in your post! When she was about nine I began to think, she is living and I am missing it by dreading her death. IT IS AT THAT POINT THAT GOD MADE ME UNDERSTAND LIFE! I also had a friend loose a healthy child in a wreck during this time and thought what the #$@ she never dreaded loosing him and our Mal is out living him. /Zoom forward….we do live each day like it could be her last, but I now do that with all of her siblings as well. We view this as a blessing now…we do plan for the future with Mal otherwise I would not be helping her with English Essays. HAHA Please know that life for anyone is short in the skeem of things so just sit back and TRY to enjoy. Do not let a diagnosis rob you from some wonderful times. Ask Mallory to be a friend on facebook, stalk her page, feel free to get to know her. I so hope it helps you, we had never even seen a HLHS and there was very little support when she came. We are Norwood’s 16th success. When you meet our Mal I know you will feel the choice was right….she has so many good times…pictures prove this!

    • I do focous a lot on Evan’s diagnosis. I am guilty of not living fully each day! I thank you for your words and know they are from a place of love and experience.

  2. We are gearing up for Lanon’s (4 year old Ebstein’s & PS) here in the up coming weeks. This post is true down to every last word. Beautiful

  3. Every word of this hits home. There is no cure. I think those are the worst words I have ever heard in my life. More hurtful than “your baby has a complex critical congenital heart defect and will need open heart surgery” or even “this surgery went well but he will need another one….or more depending on how he does”. If we could just be promised ONE surgery and life would be “normal” it wouldn’t be so bad. CHD is not like taking out an appendix or gallbladder. It NEVER goes away. Thank you for putting into words how all CHD parents feel. A LOT of times we struggle to express it to people who haven’t or aren’t going through it. I pray that Evans surgery is a success and you will have more “Dora” moments. I pray that you will get more chances to dance. More snuggles. More bumps and bruises. More. Just more. I pray this for all of us. Phoenix is the youngest of 7 so the term my “baby” is so very accurate even though they are all my babies. I cannot even think of life without him and I don’t want to so I beg God every day all day to just give me one more and when I get that one more I beg for just one more. And I will continue to beg for each one of our children to have just one more.

  4. Praying for your family. Trusting God to hold you tight and carry you through this.

  5. There is no cure for life. We live with the expectation and illusion that it will be long and full. Every moment is a miracle. Every moment ‘is’ a lifetime.

  6. Thank you for sharing the hearts of so many in the heart community.