How far

I follow about a dozen or so blogs and Facebook pages of other kiddos with complex medical problems. Most of them written by their mommies. I identify with many of these moms even though our children have different needs. I find that we all write about similar experiences but each with their own unique spin. Each child different but often a path very similar.

We live our lives for our children and do anything we can to improve their quality of life. We fiercely advocate for them as they cannot do for themselves. We are responsible for protecting them. With a future full of so many unknowns, we live day to day hoping the worst case scenario never happens.

Recently I have been focused on what could someday be a worst case scenario for Logan and I am having a hard time wrapping my head around it. I am so fearful of him becoming sick. I worry that one respiratory infection could throw him into a tailspin that he may not be able to fight. 

We know that part of Logan's brain is degenerating. We have no clue what this means for his future. We are being told that he will probably continue to lose skills and have a harder time fighting infections as he becomes weaker. I worry that he will land in the ICU again and we will have to decide how far to go. How hard will we push to get him healthy and at what cost. 

I have been waging this inner battle of how far is too far. What is necessary and what is cruel. We live in a world full of life saving technology that can bring a person from the edge and back. As a nurse, I know these stories all too well. And with children, their resiliency combined with top notch medical care can often provide miraculous results. But I know too well the other side of these life saving measures. 

Joel and I have consented to life saving measures for our son and I actually acted out these measures on him myself when he stopped breathing during a seizure. We have put Logan through procedures such as a feeding tube and tracheostomy tube in order to prolong his life and improve his quality of life. But at what cost? He has to have a feeding pump connected to him by tubing almost all day, every day. He has an uncomfortable breathing tube in his neck that requires intermittent suctioning to keep his airway clear so that he can breathe. I could go on for pages telling you the downsides of what comes with these medical interventions. But without them we would not have Logan. 

But guess what, regardless of what we do for him, there will be a day when we don't have him. I just hope that when that day comes, I do not regret the choices we have made for him. I want to look back and know that I was a fierce mommy that gave it my all whether it be making the choice to consent for further intervention or making the choice to let go and give it to god. So far, I do not regret our path. I know that every decision Joel and I have made is done with careful consideration of all of the options. 

I am so proud to be part of a community of other mommies that are fierce protectors of their babies. I am not alone in this and knowing that, provides comfort when the fears of the unknown creep in. Thank you to all the mommies out there that share your stories whether it be by blog, Facebook, or day to day conversation.