The other day, I once again, felt that kick in the gut.

In the military, there is a program called the exceptional family member program, or the EFMP. The purpose of the program is to make sure that the base you are stationed at has sufficient medical facilities, or educational programs, for every member of your family.

So, for example, Zachy and Natalie are enrolled in the program. When we go to move, a red flag will go up in Matt’s file saying we have special needs. The base we go to will have to be able to accommodate their needs, or we can’t go to that base.

Since we are getting ready to move (PCS, permanently change stations), we have to update all their EFMP paperwork.

The paperwork requires letters from their doctor, stating what exactly, they need. Since we are PCSing, the doctor also gave us a copy of their records.

Since I always feel the need to read every report I’m ever given, I decided to read this one too.

I read through Zachy’s. His diagnoses were, TAPVR, Sick Sinus Syndrome, and pacemaker present. Yep, all pretty straight forward.

I then went to Natalie’s. Her diagnoses read TAPVR, <i> and </i>Pulmonary Vein Stenosis.
It also goes on to state that there is a chance, although slight, that she will need another surgery to correct the stenosis.

So here’s where I felt the kick in the gut….we have always said, in passing, that one of her veins might be slightly narrow, but I never thought it was something that would be a diagnosis. I never really thought she would need another surgery. And, she probably won’t. But the fact that it was written in her records, it just makes it that much more real.

I’m sure her nurse from the NICU, Jeremy, would be telling me she is doing everything that is expected. He was always good at telling me that. Still, even if it is to be expected, I just never expected to see it in print.

Stenosis is not something we ever dealt with with Zachy. And we know it is the main complication of TAPVR after repair. It’s just not supposed to happen to us. She is supposed to have one diagnosis..not two diagnoses.

Painted by Nathan Greene, this is arguably one of my favorite pictures.
I know this scene has played out several times in my own life. Well, not mine, but the lives of my children.
So many people prayed so hard for them, and I know that God heard those prayers, and He was there, guiding the surgeons hands every step of the way.
I’ve been thinking lately, and I have to say, I think that CHD parents are amongst the strongest people around. Only, I don’t feel strong. Not at all. I know that most of them are leaning heavily on Christ. It’s only by the grace of God that we have gotten through what we have.
People tell me all the time that they don’t know how we do what we do. The reality is, we have no choice. These children are our precious gifts from God, and He has a plan for them. What are we to do? Deny that gift? I think not.
I am so thankful to know a kind and loving God, who wants nothing but the best for our family. He is so wise! He knows the perfect kids for us. He knows exactly what we can handle (and what we can’t). Isn’t it wonderful to know that there is someone out there in charge? That we aren’t just walking around by chance. That whatever happens, there is a plan. It might not be our plan, but we are at peace with the knowledge that there is a plan. And His plan is far better than ours could ever be.
And just as He guides us day to day, I know He guides the surgeons hands when they are operating on our tiny little babies.
Thank you, Jesus, for all you do for us. We are so unworthy of your care, and yet, you give it without a second thought. You, my Lord, are mighty and wonderful. I cannot wait for the day when we are all together, worshipping you all day long, in Your presence.

Dear TAPVR and your faithful sidekick ASD,
I’m writing to you because they say that sometimes it is easier to talk about your feelings in writing. I’m willing to give it a shot, because I have a bone to pick with you.
You see, TAPVR, I don’t particularly care for uninvited guests. And you have chosen to come to our home not once, but twice. You crept up silently, before you so rudely barged in.
Most guests come to be the life of the party. You, on the other hand, came to suck the life out of my children. I guess no one informed you that you were coming to the wrong house, because you see, my children are much stronger than you.
I guess I’m not labeling you correctly. Guests,eventually leave. But you will never leave, will you? No, you will always be around, until the day I die. When my baby has a hard time breathing, you will be the first thought that comes to the doctor’s minds. They will do x-rays to be sure blood isn’t backing up into her precious little lungs, because of you. When my little boy tires, it is you who will pop up into everyone’s minds again.
It is also you who my kids will continue beating, every day of their lives. Again, I’m sorry no one informed you of their ability to do that.
I don’t like you. In fact, I hate you. And I don’t hate easily. In fact, I can’t think of anyone else I hate. To hate is to murder. How I wish I could literally murder you. I would do it in a heartbeat…no pun intended.
I guess though, that I do owe you some thanks. How can that be?
Because of you, I have fallen to my knees more than I would have had you not shown your face. I’m so ashamed to admit that.
You have taught me not to take anything for granted. So many women get pregnant and just assume their baby will be healthy. Not me, no, you took that naivety from me.
You taught me just how precious life is, and that in a beat of a heart it can be gone.
Lastly, you have shown me how strong my children are. Oh how I admire them. I wish I was that strong. I know though, that all of our strength comes from our heavenly Father.
For these things, I thank you.
I hate you and wish I didn’t know you, but I do appreciate all you have taught me.
Your host..forever,
The mom of 2 of the most precious babies, who just so happen to know you far too well.