Tuesday, April 18, 2017

Unshakable Faith

We've decided on a name for the baby. His name is Noah Gabriel. 

I have so many blessings.
I have an AMAZING family, lovely lovely friends, and a faith that's unshakable. 

But today was rough...

Not sure if it was reality setting in or just one of those days. Today was my first day back to work teaching. For no apparent reason, it was just tough. I found myself sobbing on my way to work, on my lunch break, and albeit nearly the whole way home. I have a two-hour commute (one hour each way). 

Couple things: 

First, I find it heart-wrenching to watch my children work through their ideas, emotions, and understanding of Noah's situation. Two nights ago, at bedtime, just as I was about to close my eyes, Jude's little voice asked, "Is Noah going to die?" 

It took everything I had to hold it together. I took a deep breath and told him, "If God needs Noah more than we do, he will need take him to heaven". He told me that he was scared and he doesn't want God take Noah. After I reminded him that in heaven we don't have sickness, so Noah wouldn't be sick there, and that he would be with God; Jude actually smiled and said "Oh yeah! I can see Noah when I get to heaven!". 

Secondly, the whole "it's not fair" attitude is creeping into my thoughts. When I think this way, I cannot keep it together. It's not fair that we won't get enough time with this baby. It's not fair that we won't get to know this baby's personality. It's not fair that he won't get to share a room with Jude. It's not fair that I may never hear him cry. It's not fair that he may not make it long enough to see his home, or siblings, or grand parents, or dogs. 

I did have an epiphany on my way home today. I asked myself why I am so upset today? Of course there are the obvious reasons, but I was really hard-hit today. I turned off the radio and actually talked to Noah. After all the "it's not fairs" I pointed out, I came to the conclusion that if I kept up with this mindset, I would give off a false sense of feeling short-handed or short-changed. I absolutely do not feel that way. I love this baby exactly the way he is. Do I wish he was healthy? Of course, but I don't feel less blessed that he is not. I love Noah Gabriel Zere with my whole heart, top to bottom. I have to remind myself that this baby is already a miracle. Most babies with this complication end up being miscarried early on. He is a fighter. I am proud and blessed to be the mom that gets to call this beautiful soul my child. I felt the need to completely stop feeling sorry for myself, and I'm so glad I did. That kind of behavior doesn't serve anyone well.  

Some days I feel like I have it all together...that unshakable faith. Other moments, I am so deep in my sorrows. This is proof that I am need of a savior. 

I didn't write this post to make everyone sad with me, and I am sorry if it feels like a sad post, but I think it's ok to be sad now and again. However, I do not think it's ok to be so sad, that it becomes a killjoy. I will not let fears and sadness get in the way of enjoying the blessing in my life. 
God is good!

I am so blessed. 

I have an amazing family, lovely lovely friends, and a faith that's unshakable.

Thursday, April 13, 2017

Our journey...

This post will be kinda long, so go ahead and grab a cup of tea.

I always get so excited when it's time for the anatomical ultrasound during pregnancy. I love love love seeing all the beautiful parts of the baby. There is something so magical about watching the four chambers of your baby's heart work together in perfect harmony to support the tiny miracle inside your body. The legs and arms, and yay we get to see their face before the big day. It's a beautiful bonding experience with the baby before we get to meet. 

There is of course the ease of anticipation which I feel when I find out the sex of the baby (I am my mother's daughter, we've never been those whom have the patience to wait for surprises). Sooo... this time was no different. So excited!! I invited my mom to come to the ultrasound so we could find out the sex of the baby together. This was her first ultrasound ever! We just love this stuff...see, this baby is the tie-breaker between the two boys and two girls; so you can see how important this is :)
I'm 19 weeks pregnant (almost five months). Some of you know how rough this pregnancy has been with the sickness and exhaustion. That has always been an indicator for me that it's a boy. Those boys always make me sick 😆 (shhh don't tell my kiddos yet, but it is indeed a boy). 

Just this past Monday was my ultrasound. My mom and I were just floored by the images. How cool to see all the baby parts. My heart and my love for science were just fluttering!! My mom kept identifying things that I could not even recognize. She was a natural. The ultrasound tech wasn't super talkative, but we both made up for her lack of words. 

The giddiness and good-natured banter between my mom and I came to abrupt halt when the ultrasound tech got up in a scurry, and in a very serious and nervous tone, told us she had to leave to speak with the doctor. She left a very stiff chill in the air of that room. We were both confused and worried. When she came back she hurried us off to a different examination room and told us the doctor would be with us shortly. 

At this point we couldn't help but know something was wrong. All I could think was that they found an indicator that my baby had down-syndrome or some kind of developmental delay. I thought that thinking this way would prepare me for the worst. We had a few words on how disappointed we were in the professionalism or lack there of from the ultrasound tech. I was about to be angry if she worried me over nothing. 

Finally a knock at the door, in comes the doctor. I was familiar with this doctor, I saw him a few times when I was pregnant with Jude. 
He started off the conversation as cordial as one could in his situation. A few ordinary doctor-to-patient questions: How are things? How do you feel? In the back of mind I was screaming "Just let it out, what is wrong with my baby??"

Then, words that still ring like bells of darkness in my mind, came out of his mouth. He explained that they had found something on the ultrasound that was serious. The baby had a beautiful and perfectly beating heart, hands, feet, abdomen...well absolutely perfectly formed everything, except the brain. The brain never formed. 

I am completely heartbroken. I came home and feverishly Googled every possible thing I could about this. I wanted to find out where I went wrong. If I could just know what I did to cause this. Unfortunately (or maybe fortunately) there is no explanation why this happens.   

Where we're at:

Of course we had to get a confirmation, that is what we received today with a specialist. 
We are at a place where we are fighting for our baby's life. That is our focus. We are faithful. We are not sure why God has us on this painful and difficult path, but we are still as faithful as ever. We know that this experience will grow our faith even more, and make our family closer than ever. We know that our baby has many odds against him. We know that he has no expected survival. We know that contrary to the way our children plan for all the things he will do, and all the things they will teach him, he'll be limited by his time here on earth with us. There are many limitations put on him through the experiences had by other families whom have dealt with this; through science and research. We are listening, but we are not limiting him at all. We are supporting and fighting for him. We are praying for a miracle. We are completely heartbroken and confused. We are still in shock and are at peace. We are ok for some moments of the day, and other moments we completely lose it. 
The pregnancy will be fairly normal in terms of the way I will feel physically. There are are no additional risks for me other than the normal pregnancy risks for anyone. 
The children are aware of the situation, but don't understand the limitations put on the baby due to the survival expectations. That's ok because we're learning a thing or two from them. 

I mostly don't know what to say. I'm still learning to be "normal" in public. So many people ask how I am feeling because I've had it pretty rough with sickness. I don't know how I should answer that question.  I will never be the same again, and I'm learning what that looks like. It's still so early, we just literally got his diagnosis confirmed today. There is a wide-opened wound in my heart and I feel so vulnerable when I'm out. I don't want to return to work, I don't want to leave the house, or return to anything we usually do; however I know that's not the way to deal with this. It's just the way I feel.

I have gotten so my prayers and inquiries and support. I thank you. It is hard to answer everyone's questions and messages, but I'm trying. I am so grateful to all of you. I wanted to write this post so I could explain to everyone what we're going through. It will not be easy, It has been literally the most raw, and excruciating pain I've ever experienced yet. I'm not sure what the next steps are in coping with a situation like this, but I know that we will make it through. Somehow, someway. God is good all the time. 

We are asking for your good thoughts, prayers, and support. God bless all of you and yours. 

~A















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