What is it called when you are a mother who is being told your baby is not going to survive? What are we mother’s called??

What is it called when we plan a funeral for our baby before he is even born, but then he IS  born alive? What are we mother’s called??

What is it called when we are told over and over again that our baby’s are going to die for 7 days straight, but then survives and surpasses all expectations? What are we mother’s called??

What is is called when we are literally seeing something that can only be described as a MIRACLE? What is it called when that miracles is our baby surviving? What are we mother’s called??

I ask these questions because I want to know what category I am in. What kind of mother am I?? I have been judged and criticized because I had written about our MIRACLE son surviving. And in the aftermath of the comments, I realized that I don’t identify with anyone. There is no “group” for me. There is no support group for me, there is no “category” for mother’s like me. I’m sure I will receive a lot slack about this post too, but I kind of don’t care. This is what I am feeling and going through at this time.

These last two years I have been thrust into so many different categories I feel like I no longer have any kind of a identity. I have decided to make up my own. The Other Mother.

I started out this journey being a mother of 6…. a working mother of 6 beautiful healthy children. Then I became the pregnant mother of twins with this incredibly sad story. And then I became the mother of a dying baby. Then I was thrown into the palliative care world and carry to term world. I had social workers and chaplains calling me, texting me, emailing me, hovering over me every other day and at every doctors appointment, every ultrasound. I resented these people because I had FAITH that my son was going to survive. That is what we believed. That is what we prayed for. A Miracle!!

When my son survived birth, I was suddenly left high and dry. Suddenly these case workers and palliative care therapists and counselors were gone. I had no one. I had no one to sit with and pray with and cry with. I didn’t have anyone to encourage me. I didn’t have anyone that understood what position I was in. I had no one.

Yes, I had family, my husband and our church family…. but no one that was ever in my position. No one was there with me… I was alone.

Until one day…. a mother that also had a miracle baby. She came to me. SHe reached out to me and gave me incredible advice. She helped me through the first few weeks of having a baby in the NICU. Her son was born at 22 weeks and survived. A true MIRACLE.

I haven’t talked to anyone else about this and maybe I should…. but it wasn’t until recently that this has bothered me. I lost a baby at 10 weeks. My husband has lost a child who was two weeks old. And since our twins were in the NICU, he has just started to begin his healing process. And as his wife, I am supporting him. But with that came a lot of emotions that I never wanted to face when we lost our baby. Add that to everything we were currently going through and dealing with…. I have been a mess.

It got topped off when a mother of a baby that passed away told me I should be ashamed of myself for BELIEVING in MY MIRACLE. I should be ashamed for calling my son a miracle. I shouldn’t talk about my miracle because there are mother’s who did everything I did, but their baby’s died. And to put the cherry on top of THAT… she is the “owner” or whatever of a website that I was referred to when I had decided to carry to term…(I wont say their name, but unfortunately they are kind of popular.. if I had it in me, I would say who they are because I have realized now and learned the hard way, they aren’t very nice people)…. So I followed that website, I read everything this woman wrote and held on to every word she had written. I believed that I was making the right decision when I decided NOT to terminate. But now two years late here she is judging me for my decision. Criticizing me for writing about MY MIRACLE and how he survived. Making me feel like my feelings weren’t valid. The grief that I felt, the grief that I was going through, the grief that was HAPPENING, was not real and invalid. I shouldn’t feel any of that BECAUSE MY-SON-SURVIVED!!

So I ask…. what category am I in???

I can’t grieve because my son survived….

I can’t be happy because I am worried of offending someone…

I can’t be sad because my son and my family needs me to be  hopeful.

I can’t be worried because I NEED to stay positive.

So I ask…. what category am I in???

And if you are wondering why I feel the need to be IN any kind of category… well that’s a good question. And the answer is… because I need a tribe. I don’t have a tribe. I don’t have anyone to relate to. I have no one, it seems, that understands where I am coming from. My son didn’t pass away… but I know the pain of losing a child. My son survived… but I know the fear and desperation of losing a child. I know what it’s like to BEG God to save my child. I know what it’s like to hold my dying son in my arms. I know what it’s like to be told on a daily basis that my son was not going to survive and I should prepare myself. For months we were told to be prepared… I planned a funeral!! My son is alive… but we are LIVING and moving forward with life, despite him having a deadly and incurable disease.

Does anyone know what category this is??  Can anyone relate?

I understand I  have NICU moms. I know the NICU. I know the ins and outs and ups and downs of the NICU. I know NICU…. that is the only category I feel fit to be a part of. And that’s why I try and do and give back to the NICU as much as I can. But as far as being an “other mother” and relating to someone… being in a category… I have no idea…

I don’t even know if I relate to being a special needs parent yet. Maybe it’s too early to feel like a special needs parent. I know we ARE in that category. With cerebral palsy, ataxia, SPD, physical delays with low muscle tone, kidney disease.. not to mention the fact that he needs a tube to be fed through, almost no immune system and immature lungs… we are a “special needs” family. But I think my issue is… my son is a miracle… and he is STILL a miracle.

How does a little boy with a bladder that never worked or produced urine, suddenly start making urine?? HOw does my son pee??? How is this happening??

How does a boy who doesn’t “know how” or “can’t” suck suddenly start drinking water through a bottle?? How does he know or how can he be doing this??

How can a boy who stopped gaining weight and growing for 5 months, suddenly gain 2 pounds in 2 months?? No changes in nutrition… just… growth spurt.

Our son is the most prayed for little boy I know. And I know all of this is the hand of God. And because of my FAITH…

I feel alone in this world…..

So if there is anyone who also feels like this… Let’s chat.

I am an Other Mother.