I actually have had the thoughts for this post for a bit but we filled up this week with things we had to do and often I was too tired after to sit down and type.
Daddy’s family has seen a lot of loss. His dad, his sister, his mom, his grandmother. He was trying to wrap his head around what felt different though with this. Lots of stuff talks about the order of things in life being the major factor as well as the fact that it’s a future you grieve.
I would say it’s more than a future though we grieve.
We grieve the past. It took a long time to get you here but not as long to lose you. It took a couple of years after Riley was born for Mommy to feel ready. Then when I was we weren’t really having any luck. Then we thought we did but we miscarried. Then we had you. Now we don’t. There was 7 years between you two.
We grieve the loss of your words, and your energy and some of your joy. You loved to make sounds and try to talk but then you lost words and really your sounds started to decline towards the end. Your squeals that we thought were just a new way of communicating what you needed really now looked to be because you were losing the ability to make the sounds you used to. We had been hopeful as many were that this was just the result of what we will call for the sake of comparison “normal” delays. People could share all the stories of their kids who couldn’t talk but understood everything and one day wouldn’t stop talking, or walking and running etc etc. Some it just sorted itself out, many of our friends with autistic children were pulling the list of similarities. But now we see you never were going to get those skills back. Whatever it was in your mind that you loved to share with us we were never going to find out. So now we are left always wondering what would you say if you could. We miss your laugh. We miss your joy seeing Riley and her joy with you.
We mourn the present. We mourn the fact that you should be here talking to us. The empty spot in your bed. I keep your Chimchar stuffy with your blanket wrapped around it next to me. We mourn your empty chair at the table. When the vacuum starts I cry not hearing your little scream. You had a love hate relationship with that thing. Whenever I hear the doorbell, or the Amazon notification ding or Alexa tell me “someone is at the door” I expect your excited squeal. One day I cried over diaper rash cream and I don’t even know why. We grieve over your toys that are now sitting here not being played. That we didn’t get to get your Birthday Bear from build a bear. So Riley used hers this year to make one for you. It’s super cute wearing a Mandolorian onsie that matches your Grogu chair. We even mourn the custom made pants because like the rest of us you seemed to grow taller before you grew wider so finding pants was difficult. We were able to give those to Isabella. We mourn that you were supposed to be coming to Sauble Beach with us this summer which reminds me of us going last summer. We’d go to the beach and spend most the day there. You’d nap during the day laying on top of me under the tent but I think that much fresh air was good for you because you’d be super energetic the rest of the day you were so happy during that week. You loved the sun. So now when the sun comes out I cry you aren’t here to enjoy it.I cry when I see siblings in wagons on family walks. We just bought a wagon last summer and you and Riley loved it. Riley most definitely did not need a wagon ride all the way home from the old school because it was a short distance but she loved sitting in it with you. We mourn the fact that we should be planning your second birthday right now which is a month from now. And that as your sister approaches her 9th birthday in two weeks she had wanted you to be a “special guest” at her birthday party.
We grieve so much about the future. Ornella was supposed to do your first hair cut. Instead it was done in the hospital with a pair of craft scissors so we had a little something to keep. There’s so much in the future from thinking about a trip to Disney World, to your first day of school. We were adamant that we would make sure you could go to Sts. Peter and Paul with Riley. She cried the other night because she said it was her job to protect you. She was determined to protect you in the future from any bullies at school. She knows all too well how cruel kids can be and she wanted to spare you that pain. I had to tell her that now you would never have to experience anything like that. She cries because she wanted to be your babysitter when you guys were bigger. We mourn any career you might have had, any hobbies you would have had, any relationships. We mourn that some of your cousins won’t remember/know you. We mourn the fact that Riley won’t have a sibling to grow old with her and be there with her when we get old.
Mommy’s body doesn’t do too well with pregnancy. Neither of you came without complications and trauma. Because I am now at “advanced maternal age” any pregnancy would be considered “geriatric” now and high risk. It was suggested that I may consider having my tubes removed during your c-section. We spent a long time talking about it and felt it was the right thing. I even spoke with someone from the church for a faith perspective. He told me that the church teaching is to nurture life and that if by having future pregnancies my mental health and physical health were at risk I wouldn’t be able to appropriately nurture the two lives (you and Riley) that we had brought to the world and he thought it was a very reasonable choice as well. So that’s what we did when you were born.
We are still waiting for the genetic testing on your blood to be completed and there are two types of Leigh’s Syndrome but so far based on what’s come back they’ve determined it’s not that you have acquired defective mitochondrial DNA from me. Because we haven’t gotten the official word yet I can’t properly explain but it’s most likely that Daddy and I are both carriers of a rare gene mutation that affects a protein in the mitochondria. It requires both parents to have it in order to impact a child. So by fluke both daddy and I have this. If one of us didn’t you would have been fine. It’s possible to have an unaffected child (Riley) or she could also be a carrier meaning that in the future if she met someone with the same gene she could have affected children. It also means that even if we did have another child it could happen again. I can’t even think about the idea of another child right now anyways. You can’t be replaced and the world doesn’t feel right without you in it and it never will.
The more I start to look ahead the harder it gets. Just recently I was looking at some homes for sale. We aren’t buying anytime soon I just like to look and see what the market is like for the kind of home I’d like. I saw a gorgeous home for what I thought was a reasonable price then noticed it was a two bedroom. My first thought was “oh that won’t work” followed by “oh wait.. I guess it could” and tears.
Work got a new benefit plan so we had a staff meeting and the guy came to talk about it. He started talking about life insurance and dependents and that you could get it for your children. He started saying “God forbid something happens to someone in your family like your spouse or..” and I just lost it. I had to turn off my camera and step away. It was completely innocent. This man would never expect that while on this call there was a mom who lost her two year old only 3 weeks ago. Because that shit just doesn’t happen often.
I can’t stop saying how much I hate this. How it makes no sense. How nothing is right. It never can be again.
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