I have seen many meanings for his name including rest, comfort, freedom, and popular one. He is definitely living up to the last meaning so far.
We have been preparing for his arrival in many ways. We saw a pediatric cardiologist in LA and while his heart has problems, it is relatively healthy for a Trisomy baby. Ultimately the baby's heart will not be an immediate problem after birth.
We have met with a neonatologist at Cottage Hospital and had a NICU consult even though I think the idea is to stay away from the hospital in most scenerios.
We now have midwives and an OB in case I need to go to the hospital for any reason, It feels like I am always seeing someone lately,
We are working on logistics that include hospice, funeral homes, and random questions like who signs the death certificate if the baby dies at home. I sometimes have no idea where to start, or what to ask. While it is overwhelming, we have an incredible amount of support and many who are doing the actual work for us.
The hardest part has actually been navigating the conversations with those around us. I mentioned in the first blog post that I might not want to talk about it. It is quite hard to have to tell the people when I see them around town mostly because it feels like I am assaulting them with bad news. This is why I had sent out massive emails and posted it on social media. It was much easier to tell people that way. And most people know now. It is still, however, a strange reality to live with. I believe that often our friends and family don't know what to say or if they should mention anything at all. Others mention it all the time and my sister (sweet love that she is), checks on me a few times a day.
The other part of course is that Josh and I handle it quite differently and what we need from others is different. I know that for someone outside the situation, it has to be quite uncomfortable and many are unsure what to say or do.
For this reason, I wanted to make this update about just that. I wanted to let you know how I am, what I am wanting/needing, and how to be with me.
What I want you to know about my health: This is a normal pregnancy for me in every other way. Normal for me though takes into consideration that I have a muscle disease called Myotonia Congenita. It is mild form of muscular dystrophy which is relatively easy to live with except when I am pregnant. Getting my muscles going from a resting position is very difficult and I can get winded and tired easier. So this is one part that is making my job and taking care of the boys much more difficult. If I look like I am struggling with getting up and down, it is because of this and not that I am a drama queen (not that I don't have my moments).
What I want you to know about our decision to continue this pregnancy: A few people have in one way or another implied that we are making the right or brave decision in this situation. While I understand again that others do not quite know what to say or are maybe just being kind, I really could not disagree with that more. We are making the right decision for us. I was very close to ending this pregnancy. I wanted it to be over and to grieve and move on. I sometimes still feel this way. If I had made that choice it would have also been right and brave. We are simply dealing with what life has given us as all of you would do in this situation as well and the decision we have made comes with its own joys and struggles as all decisions do. I am grateful I could make this decision for my body and my baby. I believe all women should have the right to do so. If any decision had been forced on me when it wasn't the right decision for me, that would have been unbearable. I feel so sad for the women who have been in that situation. So I want to make it clear that our decision to continue this pregnancy is in no way taking a stance on abortion.
What I want to make clear about how I handle things is this: I have reached a place where I am comfortable talking about it for the most part. I actually need from my friends a person who can listen in a matter of fact way and even help me problem solve or debate or sometimes listen to the joy that comes with this hard situation.
For example, just recently, a friend had done some work on funeral homes for me and told us that our local funeral home does not charge for transport, cremation, or any other service involving babies and children who die. I cried for almost an hour when I found this out, but most of those tears were ones of joy. I was reminded how loving and kind people are. Mostly I was reminded that there are complete strangers who will come to your side when things are really rough. As a human species, we all understand suffering and grief and what a beautiful thing that is. I was happy that all families who have to bury their children get this kindness and this relief.
I want people to share in those small joys with me, to not necessarily be horrified in that moment that we have to call funeral homes about our child, but to stand with me in the feeling of oneness that I felt towards my fellow human being and to recognize the incredible gesture of kindness.
Maybe for those who have not been handling this up close and personal, this is too much to ask. I can understand that as well.
I do want you to know that for me, it doesn't have to be an off topic conversation anymore and I am happy to answer questions about Noah. Mostly, know that if I bring him up it is because I want to talk with YOU about it, that I value your perspective, and that you don't have to walk on eggshells around the words you use or the feelings you have about it. Many people cry when I talk to them about it, why wouldn't they? The entire situation is tragic. And Death is part of life. I am not sure what life would be worth without it. It is ok to be matter of fact or to help me see the goodness in all of this. Mostly, I want Noah to be recognized for whatever life he has in me or outside me and what these situations bring to us all no matter how hard it is to handle at times.
We do not need anything very specific likes dinners or cleaning help right now. We do need help with childcare from time to time and I forsee needing much more of this specific help once the baby comes especially if he sticks around for any length of time. If I am caring for a terminally ill baby, I will let you clean my house I promise 😀. For right now, just keep doing what you have been doing and telling us how much you care. Thank you for providing the comfort part of his name.
We love you too!
30 weeks and counting...