If They Only Knew

 

“If They Only Knew”

 

            I am exhausted by myself right now.

            I am all over the place and I have been for a few weeks now.  My mind is racing and I can’t get my emotions in check.  All I know to do is keep moving.  All I know to do is keep calling my sponsor, reaching out to people, talking, praying, doing service, asking if I can help others, throwing myself into school and trying the best I can not to sit still for too long.  And no, I don’t want to drink, but I know that if I don’t keep doing what I am doing to keep my racing thoughts and feelings under control then I risk getting to the point where I might.

            I was talking to Frank the other day about a compliment that one of my patients paid me after a session and he in turn paid me a compliment by essentially saying that people seem to want what I have.  I laughed.  I laughed because right now I am a mess and Frank knows it and the people I am really close to know it.  My sentiment to Frank at that point of the phone call was a basic “if they only knew.”  Frank asked me why I don’t write about that now, and let them know, while I’m in it rather than when I am on the other side of it and have some seemingly wise observation to make.  I thought about that and I thought, why don’t I?  Why don’t I share it now while it is raw and messy and while I don’t look like I have it all figured out and while I don’t have the answers…

            I love the fall.  It is my favorite season and always has been.  But with the fall comes a great sadness.  Liam was born in the fall.  He was born October 20^th, 2003 and he would have been 14 next Friday.  Now normally October is hard, but this year I am not doing well.  I am grieving him in a way I did much closer to his death.  The reason for this is due to an article from the Children’s Hospital of Philadelphia that I read recently.

            I get these articles from CHOP from time-to-time about success stories and the like but I rarely read them.  This one caught my eye because it mentioned both Liam’s heart defect and his subsequent lung condition in the title.  I began to read the story that was eerily like Liam’s story.  It was the story of a baby boy born with transposition of the greater arteries who successfully came through open-heart surgery at four days old only to have difficulty weaning off oxygen.  It was then discovered that he had pulmonary hypertension and in order to treat it he had a broviac line inserted just under his chest so that a pump could administer life-saving drugs throughout his system constantly.  His parents were trained by a pharmacist on how to operate the pump and administer the drugs.  Up until this point the story of this baby and Liam’s story were basically identical.  The baby boy went home but had to come back to CHOP regularly and when he was two they had to remove the broviac line because of complications and a newly developed oral medication was tried and it worked for several years until he started to have some difficulties at which point he was put on another new medication which has been working well for him.  This boy is now 12-years-old.  He is relatively healthy and apparently enjoys outdoor activities with his family, his favorite being fishing.

            I have read and re-read this article.  The first time I read it I could not breathe.  Then I couldn’t see through a veil of tears.  The tears are because the story is exactly the same up until the point where Liam died when he was 68 days old.  He died before he reached an age when we might have tried one of those new oral medications.  We didn’t know soon enough and we missed the window.  We missed the window by what looks like 18 months to 2 years and we would have had a 14-year-old this year.  There are other aspects to this story that I have to explore further with CHOP and with the help of Frank that my mind can’t even grasp.

            I am a mess this October because I had previously been at a point in my grief where I had reached a level of quiet acceptance over the fact that there had been no real hope and no real treatment for pulmonary hypertension.  I had reached a point of dignified calm, a kind of peace where I knew that October brings on a mild pall but not so much that I could not still enjoy the mums and crisp air.  But this October I am all over the place again.  When I sit still, I am in tears.  I am in tears because I, on the one hand I am thrilled that there is a 12-year-old boy who is living and enjoying life and fishing with his family, but reeling because our son can’t also be here doing whatever would have made him happy too, and the fact that I don’t know what would have made him happy sends me spinning off into the stratosphere of the “whys” and “what ifs” that I haven’t visited and tortured myself with for years.

            I’m a mess and I keep moving at the moment because when I have quiet moments these days my arms ache.  They ache because I should know what he feels like to hug him.  I should know what he looks like today.  I should know how tall he is and what size pants I need to get for him because he has outgrown his clothes yet again.  I should know his favorite meal and be able to enjoy making it for him.  I should know his favorite color and be intervening when he fights with Dermot and Wren.  I should know what worries him and know how to tease him and be frustrated with him when he rolls his eye at me.  I should be listening to how his day went and taking him to the movies and holding him accountable for things.  I should know if he is a jock, or an artist or a free-spirit.  I should know the sound of his laugh…  I should know my son and I don’t.  I don’t know him and Frank doesn’t know him and Dermot doesn’t and Wren doesn’t and we never will and it is wholly unfair and the most unnatural thing I will ever experience.

            Then there is that phrase… ‘there isn’t a day that goes by…’  I have come to realize that prior to reading this article, I had reached a point where there are days that go where I don’t think about my baby.  The fact that he is no longer top-of-mind makes me hate myself on some level.  It just feels like the ultimate maternal betrayal and I can’t reconcile myself with that.  I also know that I am being awfully hard on myself and the psychologist in me has all kinds of logical retorts but none of that combats the roiling emotions I feel.

            This October it feels a bit like I am breaking in half all over again.  It isn’t as oceanic as the pain I felt when I held him in my arms at the end by any means, but it hurts a great deal and I can’t get it out of my mind. 

So if I have in the past given the impression that I have this thing called life all figured out, I don’t.  Life still happens and I still have problems.  Things still come up that throw me off my game.  I still struggle and I still stumble.  I don’t have the perfect divorce either.  I have a pretty good one, but Frank and I have been butting heads more recently than we have in the recent past and maybe that has something to do with me being such a pulsing nerve-ending at the moment, I don’t know.  I don’t have perfect serenity in recovery.  I still get angry, I still make mistakes, I still have no filter, I still blurt things out, I still make mistakes, I still question myself and have abhorrent negative self-talk.  I can be spectacularly awkward and incredibly imperfect.  The difference today is that I have tools and a support network and I am using them all.  As long as I keep using them I will be alright. 

So if it useful to hear that I am less than poised and don’t have it all together, know that I, like everyone else, am perfectly flawed and beautifully human and we are, none of us, alone in that.