How are things going?

I've struggled to answer this question a lot over the past five plus months. There are many reasons for that. Sometimes it seems like people are uncomfortable talking about Millie. In a way I guess I get that, though it is interesting to me. I say interesting because it seems as though they feel my grief is contagious, or that by simply mentioning my daughter they will cause me to hysterically cry. To be fair, some days that is very possible, even probable. But the thing with being a grieving parent is you get really good at pretending you're OK. Even though you feel like you're falling apart and the world around you is just too much. I've read that most people get over the loss of your child (meaning anyone who isn't the parent) or get to a point where they're better at dealing with it or just have healed about eight weeks after the fact.

As a grieving parent, you go through a period of time where life just needs to stop. The problem is, it really doesn't. I know that the early days after Millie passed away are a complete blur. I don't remember most of the day she died after hospice, the funeral home, and my daughter's lifeless body left my home. I know we went to the funeral home to start making arrangements sometime that day, and let our neighbors, friends, and family know about Millie's passing. But truthfully beyond that it's fuzzy. There are certain details of her funeral that I remember. I vividly remember myself, her dad, and her godparents wheeling her casket into the sanctuary of the church. I remember thinking to myself "How am I going to do this?" and then doing it. During her funeral I don't think there was a soul who didn't have tears. Somehow I only cried once during the service. I know, it's horrible. I guess I was numb at the time. Looking back I think it was me trying to survive. The part that was the hardest for me was after we wheeled her casket out of the church, the funeral director gently asked us who was going to carry her to the hearse. Yes, my daughter's body was in a hearse. Justin decided he would do it, and I completely lost it. I knew then we were going to the cemetery. I knew we were going to bury her body. We'd never see her again. No parent should ever have to do what we did. But, far too many parents do.

One thing we learned very shortly before Amelia passed away was something we could not deal with emotionally. In fact, we kept it from most family and friends for months. About two weeks before she passed away, we learned Amelia was going to be a big sister. We were excited, but completely overwhelmed. Spinal Muscular Atrophy is a genetic disorder, and each time we have a child there is a 25% chance they will be affected since Justin and I are both carriers of the genetic mutation. We quietly asked for a referral to a high risk obstetrician for genetic testing to determine whether or not this child had SMA. Beyond that though, we were not emotionally equipped to deal with this latest development. And we certainly weren't prepared for people's reactions.

I realize that people were genuinely concerned for our wellbeing, and did not want us to have to go through the same thing all over again so soon. However, when genetics come into the picture it's as if people think they have a right to an opinion about whether or not you decide to have more children. I remember people assuming we would adopt from now on, or that we would not have any more children after Amelia. This isn't the first time I've dealt with this, as my disease is likely genetic. I'm not saying that if people decide against having more children or decide not to have children at all that they're bad people. What I'm really trying to say is that it isn't anyone else's decision to make besides Justin and mine alone. Justin and I have always wanted a big family, and despite the fact that we have been through more in our short almost two years of marriage than some go through in a lifetime, we still have the same desire. Adoption is a wonderful option which we have discussed doing at some point. However, we do want to have more natural children than just Amelia.

The next few months were a blur, because just days after we found out about our newest addition we lost our oldest daughter. In addition, we also had our first appointment with the Maternal Fetal Medicine staff, and had a procedure called Chorionic Villus Sampling done to determine our second child's diagnosis. It was a very painful and stressful procedure. Much to our chagrin, they were not able to get the right type of tissue for the test, so we ended up having to do yet another high risk procedure four weeks later: Amniocentesis. The amnio was much easier and we learned the results in a two to three week period. We were relieved to learn that our second child was not affected by Spinal Muscular Atrophy. In addition we learned that we were expecting another baby girl. After discussing it with the doctor, we decided to continue our care with the high risk team, especially in light of my health issues.

My due date for baby number 2 is March 15. She and Millie would be about 11 months or so apart. Justin and I often talk about how Millie probably would have reacted to having a baby sister. We realize it would have been a difficult adjustment to her, as she had just about as much attention as she could ever have wanted. Life with a young child with special needs and a newborn would have been undoubtedly chaotic and difficult. But it all would have been worth it. There are times I wish so much that Millie was still here. However, she was getting tired and SMA took over her little lungs. She just needed relief, and though we could have done more invasive procedures to prolong her life, such as a tracheostomy and ventilator, we decided against that. Perhaps if we would have known the diagnosis earlier we could have and would have been more proactive. That just isn't what happened.

Life now is a balancing act. I am trying to figure out how to bond with this newest little one, and I would be lying if I said I wasn't struggling. Right now, this baby is a very abstract thought to me. Even worse, I know that I will long for Millie when she is born. Yes, I'm thrilled to have another child to love, but she can't and won't replace Amelia. No one ever could. I'm also trying to be kind to myself as I continue my grieving process and manage my ongoing health struggles. This pregnancy has been a lot harder on my body than my pregnancy with Amelia. I really haven't had a break from feeling awful, having no energy, and dealing with flare ups of my Mito symptoms and dysautonomia.

Yet somehow I have made it to the third trimester. There are only 83 days left until my due date. I'm relieved my pregnancy is nearly over, but unsure of how life is going to be with this baby. I hope and pray the rest of my pregnancy, my labor and the delivery go as well as possible and baby arrives safely. I am excited to meet my second little girl and to love on her. I'm also scared out of my mind.

2017 is proving to be a crazy year already and it hasn't even started. Saying goodbye to 2016 is both a relief and indescribably difficult. We are also approaching our second major holiday since Millie's passing. I have been really struggling with missing her and grieving the fact that we never had the ability to celebrate Christmas with her. Justin and I are aware it's going to be very difficult but we are hopeful that we will still be able to enjoy it as much as possible.

And our sweet Millie is continuing to watch over us. I miss this kid so darn much. She is the best.