CuddlesI have a secret. One that I’ve held since Matthew was first born. One that I haven’t told but a handful of people. In fact, not even Rusty knew this secret until a few weeks ago. It’s not something that I like to admit, even to myself. But, it also isn’t something that I can escape. It’s a …feeling?.. a fear?… It’s a reoccurring thought. I hate thinking it. I can’t escape it. I don’t want to speak it, almost as if speaking it gives it power, makes it real, makes it inevitable. I know life doesn’t work like that. I know God doesn’t work like that. But, I’m human, and my brain can’t stop itself from, for a split second, scolding myself for shining a light onto this thought and ‘making it real.’

So here it is. My secret. Since day one of listing Matthew for transplant I have had this thought that he is not going to survive the transplant, or at least won’t be with us for long afterwards. I still feel a great peace about listing him. I’m still sure that it is what God wants us to do for him. I’m well aware of the statistics and survival rates at our hospital. I know that transplant is the best option for him. This thought doesn’t change the path that Matthew is on. The path that we are on. But it does haunt me.

Every month that I refill Matthew’s formulas and medications I think “Maybe this will be the last time I have to refill these. Maybe the call will come.” and then I think “..and maybe it’s the last time I refill his prescriptions.” Every time a friend says that they are hoping the call comes soon, I agree, I too hope it comes soon, but I also dread it. Because every time we talk about the call, I hear my brain telling me that it could very well be the end. Every time someone expresses frustration at how long we’ve had to wait, I agree. It is frustrating! But, I also hear my brain telling me that perhaps, God is making us wait so that we will have had a lot of time with Matthew before He takes him away. Maybe it isn’t really a transplant that we are waiting for after all. I’ve said since day one of this OTC battle that I know God can take Matthew away at any point and I have to be okay with that. I will be thankful for my time with him. I log away every second of every day. I daily send up prayers of thanks for my time with him. I cherish every tear, every smile, every cuddle. Because I know that they could have very well never been, and there is a chance that they will end sooner than they should.

I’m not sure why I’m sharing this. I guess it was just time to let it out.

Perhaps I fear that God is going to make me walk out my promise to love Him and be happy for my time with Matthew, no matter how long He chooses to give Matthew to us. (even though I know that God is Love. God does not actually work like that)

Perhaps everyone who has listed their child for transplant has these thoughts. I don’t know.

I hope not. I hope it’s just me and my crazy train rolling down the tracks.



A Note from the Doctor

Music for Matthew - Tir Na Nog Irish Pub - Raleigh, NC - October 20th

Music for Matthew – Tir Na Nog Irish Pub – Raleigh, NC – October 20th

Six months ago, we held a fundraising event in Raleigh with the help of some good friends, a slew of artists and great bands, and an awesome venue.

At the time of the event, Matthew had been listed for liver transplant under status 1B for a little over a month. We had every expectation, as did our transplant team, that he would be transplanted any time. Six months later, we are still waiting, but Matthew is growing and working hard in physical, occupational, and speech therapies.

A lot has happened since that time, including a false transplant call, a stabalizing in his feeding schedule, and the addition of an in-home nurse.

A lot has changed, but a lot also hasn’t. With the addition of new doctors, new therapists, and too many organizations to mention, we have maintained constant contact with our affectionately termed ‘Dr. V.’ The good doctor has been with Matthew since his transfer to the neonatal intensive care unit, throughout his initial hospitalization, and has put in many a late night / weekend hour in treating Matthew. At the time of the fundraiser in October, she asked us to share something with the crowd. Here is that note:

Hi all – this is Dr. V, one of Matthew’s doctors at CHKD. Just wanted to thank you all for taking the time to come out in support of our little man and his amazing family. Rusty will likely be talking about Matthew’s disease, OTC deficiency, with you tonight, and the emotional and financial toll it inevitably it has on families. Your presence and encouragement tonight is very much appreciated, especially by his medical team.

Collectively, rare diseases are not rare. Our ultimate goal is to continue to make their existence known, such that research can further improved treatments and therapies. My sincerest wish for Matthew, as well as all our children for whom we care, is that they may live the lives for which they were created. We love them very much.


If you’d like to help CHKD, join us for the RunWalk for the Kids on June 14th. As always, you can help out our family by making donations here.