The Feeling of Being a Parent

It seems I only find the time to write on here either during work breaks or late at night, when I should be in bed with my boyfriend trying to fall asleep – like now. It’s late at night. I tried doing an entry last weekend, during a work break, but ended up accidently deleting such post and gave up on trying to re-do it lol. But it still published onto my Facebook and showed the first paragraph. So, there, I guess, done. Anyway…

I just put my daughter to sleep. She still ended up crying a little after I left the room. She has been doing that more often. I try to put her to sleep, she looks deep asleep, I leave the room (closing the door quietly) and then I hear her cry. I leave her be for a little to see if she’ll just fall back to asleep, usually she does so after a few minutes or so. Guiltily, I have not been keeping to her routine of getting ready for bed around eight. You see, my boyfriend and I watch these shows together and they keep playing and I forget about the time or say “just one more and I’ll put her to sleep” and one becomes a few. I’ve been trying to get back on track because I realize that a routine for her is a good thing. I just wish I could actually get up earlier, because she seems to get up earlier than I and just sits in her play pen (her bed) and plays with the stuff animals that are there with her. Lucky me. If she just cried, I would be forced to end my in and out sleep. She sometimes can be heard awake six o’clock in the morning. Eep.

So, tonight I sat on that tiger stool I use (as uncomfortable as it can be) with her butterfly night light displaying red stars and the occasionally moon on the ceiling and watched her sleep. I stroked her hair gently and all the love and care I have for her came to me. I’m not sure how to explain it but I am going to try. This feeling of knowing I love her unconditionally and so much that I would sacrifice myself for her in a heartbeat, no questions asked and no regrets at all… it is just a different kind of love than any other. She happens to be my heart, if that makes sense. I would like to think any other parent would understand, lol. It is such a strong emotion when I think about it that it almost made me shed a few tears. I love her so much. You don’t quite understand what it feels like to be a parent, no amount of explaining will do, until you are one. That is the truth, whether a repeated one or not.

Of course, I love my son just as much. I find it hard to explain it. He is not here. People can say he is in my heart or in the Heavens but the thing is that he is not here physically. I cannot hold him or kiss him. I find it hard to say and I don’t want anyone to misunderstand me when I say this but sometimes it hurts to think of how much I love him. I do. I love him so much, just as much as Neveah but unlike Neveah that love and care that I want to give him, show him, I cannot. I can’t hold him anymore and tell him how much I love him and how handsome he is or cuddle him. And it hurts.

Sometimes I’m taken by surprise how much it still hurts to feel the loss of my son. I guess I shouldn’t be. I know it’ll never really go away, the pain of losing him. I know that without Neveah I would be an utter mess. I’m sure of it. I would break down more often and I don’t think I’d be able to understand how to deal with the pain. I’m still not even sure how to deal with it, to be honest. But with Neveah, I feel I have to be strong for her and along with that for my boyfriend.

But to that feeling of being a parent… it is really indescribable. No matter how much I describe it it won’t do the feeling justice. I love my children so much, it’s a feeling in my chest like no other and it puts a smile on my face, also frown marks lol but it is a beautiful, beautiful thing.

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Always On My Mind

Charles and I looking over our baby boy Wyatt

Charles and I looking over our baby boy Wyatt

I have a Pinterest account. I really adore Pinterest. I have a board that is called “Mommy’s Angel” and that is where I put all the pins that is related to child loss and Wyatt. Yesterday, I got really into just looking for things as such, stumbling upon some wonderful things that I could relate to. But it got me thinking, of course, about Wyatt. My baby boy that I only got to see for three hours. I was also extremely tired during those three hours from labor and not sleeping well. I got induced a month earlier than my due date because I had preeclampsia. He was a big boy. Weighing a little more than seven pounds.

Our miracle baby, he was. Doctors said that most babies die in the womb. Not only that, most babies with Trisomy 13 have physical defects such as a cleft lip, extra fingers, small head, etc. Our baby boy seemed to have a cleft lip that was forming (or was healing it self) and an extra finger. On top of his head there seemed to be a wound, but was probably that his skin on his scalp didn’t fully grow. He had a smaller than normal cerebellum and a rare heart defect. In the end, the reason why he did not live longer was not the heart defect but that his body did not know how to continue breathing on his own. Before he was even born, we had discussed with many doctors the many defects and complications that can occur. Even so, despite knowing all of this, we had this hope that he would still survive yet. Which he did, for a few hours.

There are so many things I wish I did when he was still with us, like sing to him for example. I always planned on singing to him with him in my arms, but I always imagined we’d be in his bedroom or my bedroom in my arms as I sung him to sleep. I also wished I held him a little bit more, told him I loved him out loud a hundred times over and kissed his face. I didn’t sing to him, because I was too embarrassed too. I didn’t kiss him a hundred times over, because I was… afraid perhaps. Afraid somehow I could hurt him.

Despite the smiles and laughs I give, and the outlook of I’m totally fine I still hurt when I think of him. I feel happiness and sadness at the same time. I miss my baby boy so much. I don’t want others to feel uncomfortable so I don’t talk about him as much as I want to, but I refuse to not mention him when people ask about my children. He is my child. He grew inside of him, I felt him move and then saw him breathe. I don’t just have a daughter who is here with me, I also have a son who passed away but will still forever be in my heart.

I miss you my son, I love you so much. You were taken away too soon. ❤

Trisomy Awareness Month: March

If it wasn’t for my son being diagnosed with Trisomy 13, I would have never known that March was the month for Trisomy Awareness. It is amazing what you wouldn’t know or even still don’t know because you haven’t came across an event that lead you to it.

I mean, how many people know what Trisomy is let alone Trisomy 13. I didn’t. Another name for Trisomy 13 is Patau Syndrome and yet, still I had never heard of that name. There are different Trisomys of course. In fact, Trisomy 21 is actually another name for Down Syndrome.

A great website to learn more and I think even to get involved would be Trisomy.org. I remember in my search to learn more about what my son was diagnosed with, I came across many websites and that site was one of them.

Trisomy 13 is a chromosome defect that occurs in 1 in 10,000 live born infants. Imagine the number for the babies that do not even make it to birth… high. Trisomy refers to three copies of one chromosome instead of the normal of two and for Trisomy 13 it is, as probably guessed, chromosome 13.

There are many defects that can occur with a baby that has this chromosome defect such as a heart defect. For us, we found out about his heart defect (Truncus Arteriosus) first… well we found out something was wrong with his heart first then found out what the heart defect was exactly after… but I guess that’s a given. Finding out about the heart defect first, and what it was gave us hope because it could be dealt with. It would’ve required many surgeries for many years but it was doable regardless of prices. Our baby boy could live. Then we found out about Trisomy 13.

It’s funny… well I guess not funny but interesting that we had two doctor appointments that day, the first was with the heart specialist and the second was with the chromosome specialist. I remember when the heart specialist told us about the defect. I remember leaving relieved because it was doable. Then we got to the other doctors office and recieved the worst news. Our son had Trisomy 13. Trisomy 13 babies usually don’t make it to birth and even if they did, they soon die afterwards.

As a mother of one already, I knew I had to be strong for Neveah but it still was devastating. I wasn’t sure how to process that information. My son was more than like not going to live and even if he was born he still wouldn’t live long. How do you even react to something like that, especially after receiving some hope before that… then have that hope whisked away. Even the chromosome specialist seemed to expect my child not even to live to be born. She asked us if we wanted an abortion. I was 27 weeks when we found out about the chromosome defect. An abortion was certainly not an option then and it would never have been one before then.

So there’s some of my story as a mommy with a son who had Trisomy 13.

I hope if anyone is reading this that they help spread awareness for Trisomy. Awareness for any defect or disease or sickness, etc. so people know.

for all those who were/are affected by trisomy for all those who were/are affected by trisomy