A place of love.

One thing that we heard repeatedly when we were expecting James was that there are no wrong decisions when faced with a diagnosis like Trisomy 18. I’ve thought about that often since June 23, 2016 – when we knew for sure what we were facing.

I keep coming back to the last 48 hours of his life. I keep seeing my sweet baby after surgery, how good he looked, how easily he breathed. I see pictures of him when he was born – so tiny, so frail looking, and then pictures when he died, pink and chubby with big alert eyes. And I keep wondering, did we make the right decision? Did we kill our son?

Before my mind goes too far down that path, I remind myself that there were no wrong decisions made. We did the best we could on that day. We loved him as hard as we could, and we held on. But when he seemed tired, we let him go.

I am a strong believer in hospice and palliative care. In this country, sometimes we lose sight of what’s important. We think that we must be kept alive at all costs – that death is a disease that we must cure. That death is somehow a failure of the system.

Death is natural. It is part of life. It comes for all of us. We cannot stop it, and we cannot change that one immutable fact.

We could have kept pushing James. We could have continued treatment. And he might have lived. Maybe he would still be here with us. It makes my heart hurt to think that we may have sacrificed time with him in making a poor decision.

There’s no way to know what might’ve been. Grief is a deceiver. When going through the “what-ifs” over and over, I only think of the good ones – what if he’d lived another 2-3 years? What if he’d beaten the odds, and he lived to be in his teens? And then I realize that it could so easily be the other “what-ifs” – prolonged hospitalization, increasingly aggressive and painful interventions, repeated CPRs, more medications.

When I come back to it over and over again, I remind myself that he was fed through a tube. He was hooked up to 3 machines at any given time. None of that was likely to significantly change in his lifetime. We were already staving off death then. He had 5 wonderful months with the people that love him most in the world. We cared for him as tenderly and lovingly as anyone could have. And when his life ended, we continued that care to the bittersweet end.

The decisions that we made were not mistakes. There can be no mistakes when you love your child with every inch of your heart and soul. There can only be love and the decisions that spring from it. The same is true for every parent of every child. Whether they choose comfort care or major interventions, the decisions come from a place of love. And love for your child will never lead you astray.

We miss you, little star, James Julian. We long to hold you in our arms.

The choice.

This post is going to be painful to read. It is so painful to write that I almost cannot bear it. Yet I must write it. I am going to say things out loud that I am having trouble processing. These things sound horrible and will make you cringe, but my journey through this has been based in honesty from the start, and I want to continue to be honest. I know other parents have been in this situation and have the same questions and doubts.

The weight today is incredibly heavy. It is pulling me under. Today, I feel like we killed James. I feel like we euthanized him, if I am being totally honest.

This may shock you to read, but I will explain more fully.

James did well with his trach and G-tube surgery. He was recovering uneventfully. He breathed easier than I’d ever seen him breathe. Then unexpectedly, on Saturday night, he had a severe hypertensive crisis. It took him a long time to respond to medications, but he eventually seemed to stabilize.

Then on Monday morning, he crashed terribly. His oxygen saturation plummeted to zero. His heart rate followed. His ECG was a flatline. He was limp and purple in his father’s arms. I wanted to let him go. I had told him the night before – as he was struggling – that if he needed to go, mommy and daddy would be ok, and he could go.

Jim wasn’t ready when he crashed. And so we manually bagged him. We didn’t do chest compressions or administer epinephrine. And he came back to us.

He was on maximum support for his pulmonary hypertension. And he still had that episode. He was still struggling anytime he woke up, dropping his saturation levels. I asked his grandfather (a retired pediatrician) what he thought, and he said “I think he’s getting tired.” My heart broke at those words, because my father-in-law is a man of few words and an ardent supporter of James. He loves his grandchildren more than the world, and for him to say that to me… it was a knife in my heart.

After much deliberation and discussion with his doctor, nurses, and respiratory therapists, we decided to take him off of support. We assumed that since he was on maximum support, and he still basically died, he was not responding to the medications as he needed to be. His pulmonary  hypertension seemed to be progressively worsening.

His doctor offered a quick echocardiogram to evaluate his pulmonary pressures, but the caveat was that the pressures are dynamic, and if they’d been normal when we checked, it was no guarantee that they’d be normal in an hour. There was no guarantee that he wouldn’t crash again. We opted not to do the echo, and now I wonder why? It was non-invasive. Maybe it would have given us more information.

So, we got medications ready for him – fentanyl and midazolam – to keep him sedated and calm when we turned off his ventilator. Before that happened, despite being heavily drugged, he woke up. He looked at us. He listened to our voices. His color was good, and his saturation and heart rate were fairly stable – although at 100% oxygen and 40ppm of nitric oxide, his saturation was still only low 90s.

I want to believe so, so badly that he was saying goodbye when he woke up and looked at us. But I fear that maybe he was waking up to tell us not to give up on him – that he wasn’t ready to go.

I have so many questions. His first hypertensive crisis – his heart rate went up to 250. His color became gray. His limbs were cool. The second severe crisis, when he died essentially, was very different. His heart rate never climbed. His saturation levels dropped first, and then his heart rate followed. Prior to the episode, he’d received a bolus of midazolam – a sedative.

There are so many questions that I can never answer. Why didn’t we wait? It wasn’t any more invasive for him to just wait. He already had his central line in place. He was sedated and on medications. We could have waited – given him more time.

What if it was the midazolam? What if he had a plug in one of his bronchi? What if the episode wasn’t related to the pulmonary hypertension? What if what if what if what if??

We were so exhausted. I’d been at the hospital for 2 days straight. I wasn’t thinking clearly. I was an emotional wreck. What would our decisions have been if we had been rested and able to think clearly?

At the end, we gave him a large dose of fentanyl IV and pulled his ventilator support. Fentanyl is a potent respiratory depressant. He died soon after. I question what he died from – was it his pulmonary hypertension, his dependence on oxygen and positive pressure, or did we overdose him on fentanyl?

It is agony to wonder if you gave up on your child too soon. It is agony to think for even a moment that you killed your child. It is so hard to remember any of it clearly. The exhaustion had taken its toll, and I cannot really remember my thought process. I do remember talking to his doctor, snippets of conversations with his nurses and respiratory therapist. I remember one of our favorite nurses gripping my hands after he was gone and telling me to never have any regrets, that we did everything for him.

I wish that I could do what she said. Instead, when I think of those last, terrified, gut-wrenching hours, the hand around my heart clenches until I cannot breathe. We always knew that James wouldn’t be with us for our whole lives. We believed that his life’s value wasn’t measured in its quantity but in its quality.  We only wanted the best for him, the happiest, fullest life that he could have.

And I see these trisomy babies on our boards beating the odds every day. They are so much stronger than the medical establishment allows. James was doing so well – gaining weight, growing, interactive, and his heart was stable. I had let myself start to believe that we might have years instead of just months.

The only thing that I don’t question is my motives. I would have cared for him until the day I died, no matter how hard it was. He wasn’t a burden. It was never a burden to be his mother – to be his guardian and advocate. I loved him so very, very much. I love him still.  I have hoped that time will bring clarity, but as time moves on, and the events of the day become hazier, my doubts worsen.

I know that guilt is a normal part of grief, and I hope that one day, I will be free of these feelings. Till then, I ride the waves as they come and hope for peace between them.

(And yes, I am seeking professional help with my grieving, as well as counseling for the girls.)

Gravity

The gravity of my grief pulls. It pulls me down towards the surface of the Earth. I want to lie prone on the ground, press my ear to the dirt over his grave, hear him speak to me. Hear him tell me that we did our best for him, and he knows that.

Today marks a week. One week without my sweet baby. Five months was not enough. Five years would not have been enough. No amount of time would have been enough. Days flow into nights and then into days again. Time has no meaning, no sense. All I know is that my bed is empty of his presence at night, my arms ache for a baby that I cannot hold.

I did not pause to mark the time as 1:12pm came and went. I’m not sure why. Today, I was embroiled in a frantic rush to mail out medical supplies to other trisomy parents. Pulse oximeter cords, suction tips, feeding tubes, anything that someone else could use for their sweet babe, I placed in a box and addressed it. This frenetic activity somehow kept my mind occupied and yet not occupied. James’s angelic face, his bright eyes, were always there, hovering like a mirage in front of me.

I hope we did our best. Today, I do not feel that we did. Today, I feel like we gave up on him. It’s a terrible feeling – to feel that you failed your child. I feel like our love failed him at the moment that it meant the most. We were exhausted, we were scared. Our son was struggling. I question our medical decisions. I question the doctors that examined him, the recommendations, the treatments. Why did we make the decisions that we did?

Jim says that this questioning only means that we wish things could have been different. Maybe that’s true. Maybe I am only wishing for the things that could have been. We will never know.

What I know is that my breasts weep milk for a baby that is gone, my eyes weep tears with no baby to christen. I feel like I’m suffocating in sorrow. How can he really be gone? I see pictures, videos, and I cannot believe it’s true. He is gone where I cannot reach him, and we are left here to try and live with this gaping hole in the middle of our lives.

How do we go on?

Continuum of grief

Grief is a strange beast. There is a hand around my heart. Sometimes that hand is relaxed, the fingers loosely clasped; I can take a shallow breath in. Out. And sometimes that hand clenches down so hard that there is no oxygen in my blood. My body contracts. I want to scream, cry, collapse to the ground.

It has been a week tomorrow. A week since I saw the bright, sweet eyes of my baby. A week since I heard his voice. A WEEK. How has a week passed without him here?

Is he really gone? Was it all a dream?

Life seems to have gone back to normal. As if James’s existence was a rip in fabric, and now that rip has been sewn neatly up, and it’s as if it never happened.

Since June 23, my focus has been on James’s health. I cared for him every day – before he was born and after. I read articles, I talked to doctors, I talked to other trisomy parents. My days revolved around his needs. I held him, I loved him.

And now he is gone. There is a tremendous void where he once was. The house is “normal.” My girls run and play. We have breakfast, lunch, dinner. We play games, we watch movies. And yet there is a space where nothing is – a space James no longer inhabits. Everything seems like a facsimile of what it once was. This reality is a thin veneer over the truth – the truth of our loss.

Nighttime is actually the worst for me. Starting around dinnertime, my heart starts to clench, and a physical ache forms in my chest. We always eat dinner together at 6pm. We would move James to his bouncy seat in the kitchen doorway so that he was participating in the meal. Once dinner was over, we’d read books together like every night – James in my lap, flanked by a sister. Then bedtime. After the girls were tucked in, James and I would have our special time – every single night. It was our routine, and it was wonderful. I could focus my attention solely on him.

Now he is gone, and I am aimless. His bed still resides in the living room. His medical supplies are still in the bedroom. I haven’t had the strength to consider moving these things. Putting them away. Doing this would acknowledge that he is gone forever. And my heart isn’t ready.

It all seems like a dream. It cannot be true.

Mommy misses you, sweet prince.

The grief of children

People keep asking me how the girls are doing. I don’t know how to answer that question. I am barely managing self-care at this point. The thought of trying to help them through their grief is overwhelming. And I keep telling myself “hey, they’re kids. They’ll be ok.” Tonight, I saw examples of how both of my children are processing grief, and it opened my eyes to the fact that they are grieving and processing, and I do need to focus on them and help them through this. It also showed  that they can teach us about grieving.

I stayed in bed for much of today. I just didn’t have the energy to get up. Mostly, I feel numb today. Not angry, not sad, not raving – there is just a void within me, a empty space mapped by the edges around it. A James-shaped hole in my heart and in my soul. I keep having moments where I think that I need to get up and do something for James – change his milk bag or give his medications or nebulize him, and then I remember. Or Jim and I will be sitting together in the living room, and I’ll panic when wondering who’s with the baby?

I was lying in my bed this evening when Evaline came and sat beside me. She said “I know you’re sad about James, but I am glad that you’re not crying.” She then proceeded to tell me how she went outside and visited him today (the kids played around his gravesite). She said that she was happy playing near him. She also told me that she picked up one of the rainbow roses from his grave and accidentally broke it. She seemed distraught, and I told her that I had more on my dresser that we could take out to him tomorrow. I asked her if she said anything to James, and she told me that she said it to him in her head.

When she went to bed, I laid down with her and stroked her back. She asked me many questions, but one seemed to bother her. I have repeatedly told her and others that James was “tired” and it was time to let him go. She was trying to go to sleep, and she asked me over and over about James being “tired.” I sensed that she was afraid to be tired because it might mean that she would die. So I tried to explain to her that this is a euphemism for his body being worn out. I’m not sure she understood, but she did fall asleep soon after.

Hazel was also difficult tonight. She refused to go to sleep. I laid with her, we read extra books, we snuggled, and finally, we gave up and let her play in the living room at 1030pm at night. She played quite happily – pretending that daddy and I were her customers at the grocery store. In the middle of this and seemingly out of nowhere, she said “James is under the dirt. He can’t come out because he’s under the dirt. Babies that die go into the dirt.” I was astounded. It was all she said, but she repeated it a couple more times over the next half hour, while she played.

The grief of children is no different than our own. They have moments of happiness and joy, all the while processing the monumental change that has occurred in their lives. They feel sadness at the loss of their baby brother too. Their grief is not the only emotion they feel, and they allow themselves to feel all of their emotions equally, without guilt.

Tonight, Alison, Jim, and I sat in the living room and talked. And I actually laughed. I laughed at some stupid meme that I saw on Facebook. I laughed at some silly joke that Alison made. And then I felt terrible. How could I laugh? How could I look at a Facebook meme when my son was barely 24 hours in the ground? How could I do anything but tear my hair, rend my skin, scream, and wail every second that I was conscious?

Children teach us about grief. They teach us about the true stages of grief. And the truth is that there aren’t stages. It’s not a linear progression. In one day, I’ve felt joy, sorrow, overwhelming panic, grief, peace, numbness, and anger. Grief is a circle, one emotion leading to another around and around. We aren’t in one stage of grieving at any time.

Children understand this, but somehow that understanding gets lost. They embody the essence of our humanity – they are the purest form of us – before we are lost to advertising and peer pressure and all the things that change us. Their grief is as integrated into their day and their emotions as is their joy. They haven’t learned the useless emotion of guilt yet. They don’t feel bad playing near James’s gravesite. They don’t feel bad enjoying a cookie even when James will never taste a cookie. And they don’t feel bad to break down weeping in the middle of puzzle building because they’re sad. It is beautiful to behold. It reminds me that grief changes every moment, and it changes me every moment.

So I look to my children to model grief for me and to guide me as I start down a path that no parent should ever travel. They will help me as much as I help them.