When the Big He and I had been married for almost 10 years we both decided we were ready to start our family. We never thought anything about how starting a family would be, I mean you try a few times and boom…pregnant. And that is exactly how it happened. We got pregnant after just one month of trying. Easy Peasy. This blissfully ignorant view of the world around me came to a screeching halt 17 weeks into my pregnancy when my water broke and and we said goodbye a few days later to the precious twin girls we had created together. I had never known the amazing and incredible love like that for your child until I saw their hearts beating during an ultrasound. I also had not known the devastating heartbreak that came when we lost them. I truly could not imagine ever smiling or laughing again after they died. The distance to finding happiness again was too far and to be perfectly honest, I did not want any part of that. To be happy was to forget or so I thought. The guilt I felt when I noticed I was smiling after the loss was tremendous. Just as the Big He and I started shortening the distance from grief to joy we were devastated again by the loss of our son in 2001. Well as you can imagine I was pulled hard and fast back to the end of that spectrum and I lived in grief again. This time the grief was, familiar-scary but familiar and oddly comfortable. I guess its because I had been there before and that is where the comfort came in. A little over a year later we welcomed our Little He into this world, very-very early but this time our baby was alive. The distance between grief and joy over his early arrival (He is a former 24 week preemie) and the grief of his health issues (3 surgeries during the 104 day stay in the NICU) was no were near that of the losses. Looking back, the losses shattered me they broke me. Just like with the losses, the Big He and I pulled ourselves back toward the joy in life and that has been where we have stayed, for the most part. That is until Alpha Lima Sierra came into our lives. Now, life is like a roller-coaster ride on the spectrum of grief and joy. I don’t and never have enjoyed roller coasters…just say’n.
Now days we can see so much joy and beauty in our lives despite the grief of the disease. Its as if the two are conjoined on the spectrum. There are days however when the progression takes center stage and something happens that joy is out of our sight. We know it’s there but we cannot see it at the time. And I know that the devastating grief will come for the Little He and just as the Big He helped me find joy I will do that for the Little He. I know where grief lives and my goal is not to let that be familiar and comfortable for our son.
Was this a hard blog. Yes. No one likes to talk about this but when you are facing a terminal disease, this is realty and its ugly. For those that have floated through life blissfully ignorant, I pray you always do. I had a friend tell me I am wonder woman. I am happy she see’s the strength in me that I can’t see in myself right now, but I had to correct her, I am not so much wonder woman as that bat s#*t crazy Harley Quinn.
If you wondered about the cake picture. Did you notice it has two candles? Yesterday was 17 years since the twins died (most likely the reason I felt compelled to write this entry). I always get a cake or cupcakes and we blow their candles our for them. The distance between grief and joy with them is like it sometimes is in our family now, there is no distance. I can feel sad for the loss of the missing pieces of my family, but at the same time I also feel joy because they still are part of our family and we remember them.
All my love
Big He’s update: Alpha Lima Sierra is a real bitch of a disease. The Big He uses a walker now in the house and needs a wheelchair for going out. He will use one of those carts in the store but even that is getting hard as he has to walk inside to get one. His voice is starting to become more strained and weak so if you want to chat with him in his natural voice now is the time although most of the time its easier to text him. He is loving the changes in our home since we modified it. He can now bring the wheelchairs in and he does. I think mostly to chase and screw with Rocky-dog. The big discussion now is looking at getting a service dog. The wait list is too long so we are looking to purchase a puppy and have it trained. This way we can utilize the small tasks the dog learns instead of waiting to get a fully trained dog (which of course ALS patients don’t really have time to wait two years for an animal that could make their lives so much easier and provide more independence). While we are lab lovers we have been looking at german shepherds due to their size. This dog will be a true mobility dog assisting the Big He in stabilizing while standing (while he still can), picking up dropped objects, alerting to falls or alarms and opening doors.