Monday, January 11, 2010

In the Dark

Last night, as I tried to sleep, my mind wandered away from me. It fell to thoughts of Tommy and broke my heart all over again. I can only remember glimpses and moments, like little clips of time. I long to have minutes, hours, even days play back in my head. Last night, as I tried to make the memories stretch out into something more than a glimpse at a time, it struck me...

When August comes around this year and I am mourning the day he passed away, he will have been gone from this Earth longer than he lived on it. How can that be? Didn't he just die a few days ago? In my head it always feels like hours and years all at the same time.

I knew how sick he was when he was born. I knew what we were facing. I had prepared myself for his death so many times. Every day when he woke up was nothing short of a miracle. I had to make each moment count. I took so many pictures of him that when I put them all on disk, I have somewhere around 8 full DVDs at 4 gig each of pictures of him. Even so, when I look through them, I always wish there were more pictures. More memories.

Now that life has moved on and I have a typical job, I still keep up with other families with special needs kids. Lately, one of them has a child that may require a G-tube to eat safely. Looking back, I kept thinking how it wasn't a big deal that Tommy had a G-tube. I never understood why some people were nervous or felt bad around Tommy. He was just my kid and I was just being his mom. In all of my deep thoughts in the dark last night, I realized I gave birth to a son that could not swallow without aspirating. Could not breathe without a hole in his throat. Could not keep enough oxygen in his body without a machine. Whose heart was missing parts. Every day, I woke up and cleaned his body, along with caring for the extra holes he needed to live. I drew up medications in handfuls of syringes 3, 4 or more times a day and pushed them through a tube in his stomach. I hooked him up to a machine to give him nutrition and we went about our day and the machine softly hummed in the background. The constant buzz of the machine giving him enough oxygen to live. Counting exactly 24 links of blue tubing because any more or any less would alter the amount of oxygen he got.

Physical therapy, occupational therapy, speech therapy. Cardiologists, ENTs, surgeons, Synagis and flu shots, and monthly deliveries of oxygen and supplies to keep him alive. HOW did I do it all? How did I make the time for the medical AND the daily? I always knew his life would be short. I could never imagine him going to school, much less as an adult. My heart knew we would be lucky if he made it to 5 years old. We didn't make it to 2 years.

Could I change anything to have extended his life? Doubtful. After all of this time, and more nights in the dark like last night, I've analyzed it to death. I've read the autopsy so many times I've practically memorized it. Even though the catalyst was the bronchopneumonia that caused his body to work so hard that his heart stopped, Tommy was a time bomb.

He was in heart failure when he died. With the state of his lungs, there was no way he would have been listed for transplant. His lungs were trash. Pulmonary hypertension, asthma, reactive airway disease, chronic lung disease. Each breath was a miracle. I only wish we knew. I had prepared myself so many times before to let him go. When they told me when I was pregnant that he might not make it when he was born. When he was born 7 weeks early and I watched him stop breathing in the NICU and the crash cart came. He was barely a day old, and I was still a maternity patient, listening to the babies cry in the nursery next to my room while my baby struggled to live. Two emergency heart surgeries, both with unknown results. I'd mentally prepared so many times to let him go, but when it actually happened, I felt betrayed.

I wanted one more picture. I had my camera with me the entire 5 days he was in the hospital for the last time, but he looked so sick I didn't want to bother him with it. I was irritated at the doctors on call for ignoring me. The more I screamed for them to fix him, the more they hushed me. I was just the paranoid mama who'd been in that room too long. Guess what. I was right. There WAS something wrong with him! He was DYING! There was nothing we could have done to change that. Prolong his life a little if we'd caught the bronchopneumonia, but for how much longer? Days? A couple months? Rob has been in heart failure for 2 years now, but he's a grown man with a structurally sound heart, not missing pieces with trashy lungs.

The dark brings up such drudgery. I feel like my grief will never go away. Hot tears fell on my face last night. I want to say they fell like when he died, but truth be told, I've not had my "moment". All of this time has passed and I have been sad, angry, complacent, and numb. I've blogged, I've wept, I've lay in bed hugging his things. I've never broken down. I've come close. The tears fell for a little while as I felt sorry for myself and missed my boy, but I've never had that moment where I thought the bottom fell out and I would writhe in a pit of despair.

I always felt I should feel that way. My son died. I should have crawled in my bed for weeks and shut out the world, but I didn't. Being a blogging robot came instead. I took pity on myself and my fractured marriage and put all of my energy into that instead of grieving Tommy. Maybe that was the only way I got through each day. I could fix my marriage, I could not bring Tommy back. I think if I had not had that diversion to hyper focus on at the time that I would not have survived his death. It would have consumed me from the inside out.

Even now, I have to blog to be able to get on with my day. Because today I will go to work, come home and it will be time to go to bed again. I will lay down and turn off the lights and try to quiet my mind. And eventually, the soft images of my laughing boy will fill my mind to lull me to sleep if I am lucky.


Christy said...

I am so sorry Rene. I wish I knew the right things to say. Sometimes your blog is hard for me to read. I am so afraid that I will one day be in your shoes. So many similarities when it comes to our kids... Some of your thoughts hit way too close to home. Clearly, I can't truly understand what you're going through. But, I can tell you I understand a whole lot of your thoughts.

Please know that you and Tommy, and the rest of your family are constantly in my thoughts.

Sending you strength,
Christy xoxo

Michelle said...

Rene, thank you for sharing your feelings. They are indeed very profound. I am sorry you need to through them at all but I imagine you are able to relish in them at times as it may be when you feel closest to Tommy. I think you may have never fallen in to pit you mentioned because unfortunately you had begun to morn him probably even before he was born. I know as a mother that is a scary and terrible feeling, I've had it myself and as Alexa prepares for more surgery I feel scared yet again. It is obvious you did everything you did out of complete devotion and love for your son. May you find comfort in God's promise of the resurrection and being able to see him again - complete and healed.



Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries