Holding Our Angel

Loving After Loss


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Can’t Focus

Today is one of those days.

Where my head is in such a fog and I can’t focus. Nothing seems to help. I set a timer and work for a certain amount of time, then get up and walk for a couple of minutes. Repeat this cycle, but decrease the amount of time I work. Isn’t helping.

I exclusively wear Theo jewelry (today it is a necklace with a koala charm, his birthstone, and his initial), so I frequently rub my necklace to feel closer to him. That normally helps, but not today.

Drink water, chew gum. Not helping.

Pretend my boss is going to fire me unless I get this project done RIGHT NOW. Nope, I can’t convince myself this risk is real.

I have a headache from trying to focus so much when I can’t. Which only makes it works because now it hurts to stare at the computer.

My therapist has offered to write me a prescription for an SSRI (Zoloft) because it is considered safe to take while TTC/pregnant. But I can’t bring myself to take it. I know the risk of side effects are extremely low, but all of the risks to the baby involve issues with lung development/respiratory distress/heart issues. And I can’t bring myself to do something that has a chance of lung development issues when that is what killed Theo. If it was anything else, I’d be willing.

So I’m taking an extended lunch. Maybe I’ll exercise and see if that helps.

 


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All of Me

There is a beautiful song called All of Me by Matt Hammitt.

Matt Hammitt was the lead singer for Sanctus Real, a Christian band. He and his wife discovered during the pregnancy their son had a rare heart defect and would need heart surgery soon after birth. Their son survived, and Matt wrote the song below inspired by what happened to them and their son.

I’ve been thinking a lot the past few weeks of what our next pregnancy will be like, if/when I am pregnant again. And some dear friends have recently talked about their experiences with this, which has encouraged me to.

I’m terrified. Completely. Utterly. Petrified.

I have seriously questioned if the pain of losing a child is worth it. How much heartache am I willing to risk? This world is so cruel, even if my baby is healthy and lives into adulthood, I can’t guarantee a drunk driver won’t kill my baby (because even if my child live 1,000 years, they will always be my baby). All of the school shootings paralyze me with fear sometimes. Can I survive loosing another child? Do I want to go through this heartbreak again?

But when I think about Theo, I so much don’t want him to be remembered as a tragedy. He wasn’t a tragedy. He was an incredible blessing, a gift from God, and the greatest moment of my life so far. If I had the choice of either doing it all over again, knowing he would die, and never getting pregnant; I would choose him. Every time. The 41.5 weeks and 30 short hours he was on earth are worth it. Because I got to see the most beautiful, perfect baby boy ever; I got to kiss his face and hold his hands. Even though I have regrets I’ll carry to my grave over how we handled pulling him off life support… all of the pain I would experience again for the love we feel, for the love we got to shower him with.

So for me, the answer is yes. Yes, I want to risk this heartbreak all over again. I want to have a living child so badly. I’m not ready to say I’m done just yet. I’m willing to give all of me, place my trust in God (which is easier said than done, I’m certainly not perfect), and take this leap of faith.

And I’m sure if/when we get pregnant again, I’ll be a complete mess at times. I’ll probably yo-yo between not wanting to mention the pregnancy ever, to wanting shout it from the rooftops. I imagine I’ll be giving all of our friends and family whiplash with my constant changing emotions and requests. I know I’ll be keeping my doctors on their toes. And I know I won’t ever breathe easy until I’m in Heaven with Theo.


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Father’s Day

I was so not expecting the rush of emotions I felt today.

(I feel like I say that all the time, but it’s true each time.)

My husband is a wonderful man, and an amazing father to our son. He loves Theo so fiercely even though he isn’t physically here, and is constantly finding new ways to keep him a part of our family and to have Theo’s memory live on. He tells people proudly of Theo. He shows me, and the world, every day just how much he loves our son.

It so saddens me that today wasn’t the original image I had in mind. That some people didn’t say “Happy Father’s Day” to my husband because they didn’t see a child with him. It hurts that today is filled with a mixture of emotions for him, and that I can’t fix it for him. I know he feels the need to be strong for me.

Church was hard today. Our church is very family friendly, and has a lot of ministries focused on children. A lot of today’s sermon talked about what it means to be a father, but I noticed they never talked about loss dads. They mentioned how hard it is to lose your father, or how hard it is to have a father who was absent/abusive/etc. But there was no mention of the fathers who don’t look like fathers, who are parenting their children in Heaven. No mention of the fathers who have living children and children in Heaven.

I know we weren’t the only ones in the congregation who felt that sting, who felt overlooked because they’ve lost a child and the world doesn’t think to include you.

And so, to all fathers today, no matter where your children are, whether or not they are here with you, Happy Father’s Day. You are a good father.


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San Francisco

Carly Marie is a talented artist whose son was stillborn. She takes beautiful photos of loved one’s names in the sand. I ordered a sunset beach photo of Theo’s name, and I can’t wait for it to arrive.

I started doing this as well, of Theo’s name. Everywhere we go, if there is a beach or any location I can write Theo’s name in, I do. I want a collection of photos of Theo’s name everywhere we go, and I plan on framing them. I’ve already picked out a wall in the house that is “Theo’s wall”–all photographs, art, etc. will go on that wall.

We went to San Francisco last weekend and I forgot to write his name in the sand.

I thought I would be more disappointed by that, but I’m not. I feel strangely ok with this? I’m disappointed, for sure, and I feel a little guilty, but not as much as I thought.

I think it’s because I’m happy with the other ways we’re keeping Theo a part of our family. Nothing will ever be enough, the only think that will truly make me happy is having him alive and in my arms, but I feel good about what we’re currently doing. I feel like I have ways to be a mother to him, even though he’s not here. And I’m happy with the impact I’m seeing Theo made on the world.

And that’s a feeling I never thought I would have. I never dreamed I would get to a point where I’m happy with how I’m keeping Theo alive in our hearts and family. I feel like I’ve accepted that he will never physically be here, and now I’m parenting him the only way I can–with his memory and love. Because I’m still a parent, I’m still a mother, and I still can parent my son.

It just looks different than some other parents.

(And I fully intend to write Theo’s name in sand the next time we’re in SF. And anywhere else we go.)


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Between Two Worlds

There are times when I really need to be with others who get this. Who know without me saying what I am talking about. Who unfortunately understand every thought and feeling that I’m facing. People who I know won’t judge me and will accept what I am feeling without any conditions. There are a lot of times when I can only be around this group, when I can’t stand the thought of being with people who haven’t lost a child.

But there are times when this gets overwhelming. Sometimes all I can think about is all the different ways my baby can die, and that leads to a bad place. I have found a truly amazing group of women who have given me invaluable support. And I sincerely can’t thank you enough for that.

But sometimes I feel like all around me there is child death, and I wonder what the point of even having a child is. And in those moments, I know I need to live in my alternate universe, where children don’t die, for a little bit. And so I withdraw from my reality, from my support, temporarily.

It’s a delicate balance, living in the reality of child death. I don’t want to give up hope on this world, I want to believe so much in the good; and more importantly, I want to have a lasting, positive impact on this world. And I can’t do this if I succumb to those fears and thoughts, and live too much in the darkness. And yet, you can’t truly appreciate the beauty there is in the world and all of the good, if you don’t accept the bad and recognize it’s impact.


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My Heart

My support group did an art activity. You were given a few prompts to choose from, and you draw in response to one of them. The prompt I chose was “Draw a profile of your heart”.

So this is my heart.  20160606_183548

The blue is my faith. Which most days is the only reason I am standing. Knowing that some day I will be with my baby in Heaven is everything to me. And, more than anything else, that is the only reason I am living on those really bad days. Knowing that God is getting me through this, that I can tell Him how angry, alone, sad, confused, overwhelmed, etc., I am and He won’t judge my feelings.

The red is love. The black locket symbolizes a love that I didn’t know was possible being unlocked. I was never sure I wanted kids because I wasn’t sure I could be that selfless and be a mother. There is a difference between having biological children and being a mother. But when Theo was born, the second he came out, I felt a love I didn’t know was possible. Something switched in me and I knew I needed to have living children.

Yellow is happiness/joy.

Brown is fear. A baby dying truly shows how frail life is, and I feel like everything I knew about life was ripped out from under me and there will always be this fear that it will happen again.

The green is hard to explain. Jealousy is not the best word, but it’s close. Longing? It represents that heartache when I see other pregnant women or babies, that pain that happens when I think of the life I should be living. There is some jealousy to it, but a mixture of longing and heartache as well.

The black shape is darkness. People always say that there is a silver lining to every cloud. And the black represents the opposite. Every moment in life now, no matter how joyous, will have a sadness/darkness to it because Theo won’t be there.

The scribbles of several colors represents feeling every possible emotion all at once. I no longer feel just one emotion–everything causes me to feel about fifty bajillion emotions at the same time. I can’t make sense of most of these emotions; I don’t think they have names honestly.

The white space is the innocence that was stolen from me when Theo died. There is a cruelty to a baby dying you don’t recover from.


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Death Lens

Our neighborhood is set up a little differently. Everyone’s garages sit behind their house, and you pull into your garage by driving in an alley between the streets. This alley is just barely wide enough for two cars to pass each other, but I really emphasize just barely.

If someone’s trash can is on the curb, you won’t be able to fit both cars side by side as well. Someone will have to wait while the other passes.

So anyway, our neighbor whose garage is directly across from ours recently left his truck parked in the middle of the alley. Not off to the side, so I could pass it (which wouldn’t bother me), but smack dab in the middle of it. Which, ok, I could have squeezed through but I would have to go up on someone’s grass to pass, and I didn’t want to do that (that just seems rude, driving on someone else’s lawn).

I had pulled down my street, and didn’t notice he wasn’t moving until I was almost right behind him. I waited for several seconds, and then tapped my horn, and he came out of the garage. He said that he didn’t have his key on him so he would have to go get it to move his truck. I said (and these are my exact words), “Maybe you shouldn’t park there if you don’t have your keys on you”.

I’ve been obsessing about this moment ever since.

Was I rude? Was I being unreasonable? Was I being a jerk by pointing this out to him?

But the biggest thought that’s been running through my mind since that moment is: what if he dies soon and that is my only interaction with him? I mean, I’ve waved at him a couple of times, but theses are the only words we’ve exchanged. How will I feel if I don’t ever say anything else to him?

What if I die soon and that’s his only memory of me? Not that he’ll be speaking at my funeral, but what will he say to my husband? “I’m so sorry for your loss. This one time she got irritated because I parked in the middle of the street and she told me not to.”

I equate almost everything now to death. If this is my last interaction with someone/something, how will I feel about that? In some ways, this has made me a better person. Sometimes I’m able to catch myself before I get irritated and remind myself that if this moment is my only exchange with this person, I better be nice and make it count. Most of the time though, I’m reminded of this too late and then I just obsess about my exchange.

I’ve been giving my cats more treats lately because what if I die soon? That probably seems illogical to most, but it makes perfect sense to me. I (or they) may die soon, so I should give them a treat. And another one. (And then a third.)

It’s pretty morbid how I now view everything through my “death lens”.


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The results are in

I got a call from the genetic counselor at 8 pm last night.

She had a lot of work to catch up on, and felt so bad about forgetting to call that she wanted to call me right away.

We had a good talk with her, talked for over an hour with her.

I’ll fast forward to the end of the conversation. What all of the testing done boils down to is this: they still can’t definitively say what our risk of this happening again is. We are still at either a 0% chance of this happening again, or a 25% chance, no in between. And given the current research, she said there is a 70-80% chance that our reoccurrence risk is 0%. Basically, the chance of this happening again is most likely 0%.

Alright, now for the details. This is confusing and weird, and I’m not a medical professional, and this is all just how I interrupted the information she gave us.

Theo had variants on the RYR1, TTN, and NOTCH1 genes. They found similar variants on my RYR1 and NOTCH1 genes. Kenny had similar variants on the RYR1 and TTN genes. Somehow, this points to Theo’s variants being a random mutation, but I can’t recall exactly what she said as I just felt so overwhelmed at that particular moment.

She went on to talk about what genetics currently knows about genes and how they classify what is a variant vs abnormality vs normality. And all of what is currently known about genetics point to our variants and Theo’s variants being harmless variants, and not disease-causing abnormalities. They don’t have the traits of genetic abnormalities. She said that Theo was free of all other known abnormalities and no other significant variants, which further supports the three variants being harmless.

Theo’s official cause of death is primary idiopathic pulmonary hypoplasia. If you don’t speak medical, that translates to underdeveloped lungs of unknown causes. Literally, the rest of him was perfect. She did some research into pulmonary hypoplasia and the published studies show that couples who lose a child to this do NOT have this reoccur. And the couples go on to have pregnancies and children without major complications/health concerns. Again, this points to a random genetic mutation and not an inherited disease. And of those causes where an analysis of the baby’s genes was done, none of the other cases had the same variants Theo had.

Kenny and I are overall healthy, and there is no significant family history of lung or heart issues. Are we completely free of a history of heart issues? No, but the heart issues that are in our family histories aren’t the heart issues the genetic counselor was looking for. So this supports the variants being harmless, as Kenny and I and our families don’t have major health issues.

And another indicator that these variants were random mutations and/or harmless variants, is that all of the testing on Theo done so far has turned up nothing concrete. Tests while he was alive and the autopsy showed only 1 lung, that was a quarter of the size it should have been. I know I’ve said this so many times, but it bears repeating. There was nothing else wrong with him. She said that if there was a cause of Theo’s lungs other than a random genetic mutation, it would most likely be found. But primary pulmonary hypoplasia is so incredibly rare to begin with, and then to throw in a case like ours…

And so, getting back to our risk of this happening again. Because current medical knowledge points to this being a random genetic mutation, they are saying our chance of this happening again is most likely 0%. And from other cases where variants of unknown significance are found for the first time, she says in about 70-80% of those cases, later medical research is able to strongly indicate it’s a harmless variant, or a random genetic mutation, or both. Combine with all of the above, and she says we have a 70-80% chance of a reoccurrence risk of 0%.

But, because genetics is ultimately statistics, they can’t definitively say our chance is 0%. And, of course, after every piece of information she gave us is a big disclaimer that nothing she is saying should be taken as a definite yes or no, etc.

And so, that leaves us with the big question of what we should do for future pregnancies. She asked us if we were basing whether we wanted biological children on this test, and we told her yes. She understood where we were coming from, and I could tell she felt bad she couldn’t give us a better answer. But she emphasized that in the published studies on pulmonary hypoplasia (of which there are few, granted), couples are able to go on to have healthy, normal children.

When I asked her what her thoughts of testing a future baby for these variants during the pregnancy, she was emphatically against that. She said it could be done, but what information would it provide us? She doesn’t feel the information gleaned from the testing would be worth the risk to the baby, and if we were to terminate and the baby not have the lung issues Theo had? … I can’t even think about that honestly.

And so, this all leads to one major question. Will we TTC naturally? Yes. We’ve decided that yes, we will TTC naturally, that all of this information (which is both an incredible amount and yet, not much at all) and our hearts say to take that leap of faith and trust this won’t happen again.