Loving Landan

I’ve put off writing on this topic because it requires admitting something that makes me feel terrible.  Which tells me that it is EXACTLY what I should be writing about.  I didn’t experience a sudden loss.  I experienced a medical loss of Landan.  And I would imagine that anyone who is facing medical complexities with a loved one and lost them experiences this to some sort of degree.

Relief.  I’m sure that for every situation, a sense of relief varies.  For me, it is not prevalent. (And if it is for someone else, that’s ok.  Medical complexities vary, impacts of them vary, and the quality of life created by them vary).  There is nothing better about my life without Landan in it.  And there is NOTHING I wouldn’t have done to have him come home with us, regardless of what that looked like.  But there are times when the thought has crossed my mind that I don’t know how we would have done what we just did with Landan.

When Landan was home, he was without any kind of medical equipment.  The only thing we had to do was fortify my milk so he was receiving higher calories – very common for heart babies.  After his first intubation, Landan could no longer coordinate his suck, swallow, breathe, so he required a feeding tube.  We would see speech when he was healthy enough to be working on taking a bottle and we were diligent with his practice, but he was off and on feeds his entire hospital stay so progress was little.  He would have been coming home on some sort of feeding tube.  In the week prior to his passing, we were preparing to have a trach placed.  Landan had chronic lung illnesses as well as severe sleep apnea.  This would have allowed us to bring him home on oxygen while he continued to heal and bypass his obstructions while sleeping.  We did our research, and while I’m sure the reality of it would have been a bit more than we could actually comprehend, we were ready and willing.  Like I said, ANYTHING to bring our boy home and be a family.

The other half of reality is that we have four other kids, three who are school/sport age.  There have been schedules that have required us to run around town for hours, weather that was absolutely miserable, last second changes that got overlooked and frantically readjusted for.  We recently visited a local farm for baby animal days.  It was exhausting and again, I realized I have no idea how I would have done that for them with Landan.  Part of it is not ever having had the opportunity to try to figure it out.  I’m sure as time went on we would have been comfortable enough to get through those activities and situations safely, without major impact to Landan’s needs.  But it can also bring a sense of relief that we aren’t facing all those obstacles – obstacles that could be major and life-threatening to one my children.  Relief that my children can return to as normal a life as it can be given the loss of their brother.

But that momentary sense of relief triggers some of the deepest grief that I experience.  How could I ever allow that thought to cross my mind? The guilt that comes along with those moments makes me question everything I know about Landan and my time with him.  I know that while it would have taken time to adjust, we would have found a routine and a way to make it work.  It definitely would have been hard, but it would have been SO worth it.  But sometimes, in fleeting moments of the craziness that is being a parent to “typical” children, there is a brief sense of relief that medical complexities are not complicating it. 

Having those occasional feelings is one of the hardest parts of losing him.  Admitting it is not far behind. The guilt can trick me into thinking some pretty terrible things about myself.  But I know that while Landan was living, I did everything I possibly could for him, no matter what it required of me.  I know that I love him fiercely.  And I know that would have remained the case.  Relief is part of my grief journey.   I will never be glad I’m not facing all these things with Landan.  But fleeting thoughts of man, that would have looked way different with Landan are a simple truth of where we were and would have been.  Life is a little easier, but it is definitely less fulfilling that it would have been with him here.  If there is one thing I know about my Landan boy, things were always complicated.  And that is remaining true in my grief.