On a Knife’s Edge

As I write this post, our boy is 8 days post-Glenn and in the OR getting a BT shunt that will hopefully provide his lungs a new pathway for oxygen-poor blood to soak up and send out oxygen-rich blood to the rest of his body. 

If you had asked me before the 27th of September where we would be 8 days out from the Bi-Directional Glenn, I would have said, “hopefully looking towards a discharge and home.” That was before we learned that Liam was a risky candidate for the Glenn and, today, I wonder if such a luminous path remains possible. 

The surgeons hope that they can keep the Glenn physiology in this surgery. It is possible they will have to undo all their work from last Thursday- it all hinges on whether this shunt will be what Liam’s lungs need. 

We have been hoping each day for better outcomes and each day we are gut-punched with disappointing news. We hope all he needs is a shunt- that it would be Liam’s golden ticket, that it would be so easy and he could come back from the OR closed up and on the road to recovery. The last 8 days have beaten us into believing this is more than we should expect and yet it is our hope. To go backwards into a re-made Norwood would be flabbergasting, but it would be a path. What we fear most now is no path. 

We pray for Liam’s surgeons and we pray for Liam, but praying is weary work for beggars. We pray out of desperation and we pray in anger and frustration. Let me be clear: there is no sermon or uplifting moral to this confession. We do not know how God plans to work in this shit storm of a situation and sometimes it has occurred to us that perhaps God is taking a vacation in Maui and his out of office reply keeps popping up. We are not perfect in our faith and we don’t claim to be. Who can claim perfect faith in these circumstances and not be full of shit? 

We don’t know why Liam suffers specifically or why any child suffers, for that matter. All we can do is wait and pray as beggars to a God we hope is not learning how to surf on a beach with no reception. 


Comments

Post a Comment

Popular posts from this blog

Dealing with End of Life Care Before/After Birth and Other Uncomfortable Dilemmas

With stricter abortion laws rolling out almost daily and an overwhelming amount of misinformation about the so called “Born Alive” bills making an appearance, I wanted to take a moment to address the complexities of the situations that lead to these decisions and hopefully provide a voice to those families faced with the worst dilemmas they are likely to endure.  First, let me say that I am personally a follower of Jesus and would like to believe that I would carry a terminally ill child to term despite the massive amounts of physical, emotional, and psychological trauma that decision would necessarily create both for me and for my family, but no one can truly say what they can endure until they are faced with the reality of such a painful situation. If you have never been so unfortunate to find yourself in this tragic place, I beg you to try to empathize and also be thankful that by the mercy of God, you have been spared.  There is a significant amount of misrepresentation ...
Read more

The Moment You Realize Something Isn't Right

On the surface, our anatomy scan went pretty normal. Our 22 month old daughter bounced from interest in the tv and the picture of her little brother to needing to burn off steam in the small 10x10 ultrasound room of the prenatal clinic. Logan, my husband, cracked jokes as he kept our daughter from getting into the hazardous waste bin. The ultrasound tech concluded her scan and encouraged us to sit tight while she fetched the OB. Ready to take our daughter to day care and start his morning at work, Logan mentioned that maybe it would be ok if he went on. I agreed- everything seemed fine- what else was the doctor going to say, except, "Everything looks great- congrats on your second child"? But, (and in these scenarios, there is always a but) when the ultrasound tech peeked in to check on us and discovered my husband had left, she went from calm to serious instantly. "You're going to want to call him and get him to come back." The gut wrenching sensation,...
Read more

The Thing Is

Image
9/11 was on the minds of most Americans this weekend. Never forget , people say. While everyone waved their flags and my Facebook feed was filled with old photos of the Twin Towers, I was thinking how much I don't really care about something that didn't really happen to me 20 years ago. Not very patriotic, I know. When I think of September 11th, I'm really thinking about what I will have to commemorate on the 12th and the 13th- what every parent fears- reliving the last hours of my son's life. No, instead of recounting where I was when the towers fell, I'm trying to remind myself of that final Saturday where everything was so wonderful we didn't even stop to take a picture. Everyone was having a great day- a lovely morning walk, a mother/son car ride to drop off gear at a friend's house and pick up some groceries. Good naps and persimmon adventures with dad. If we had been told our world would be turned upside down later that evening, I don't think we co...
Read more