Helplessness

What can you do when your child needs you most yet there is nothing you can do but cry and feel completely helpless?

My son had a seizure in my arms today, while I sang him 'You are my sunshine', trying to calm him down after the doctor in the ER was looking him over & all he did was cry the whole time making his temperature go even higher.
I have never in my life felt more helpless.... even though it was 1-2 minutes to most people.... it felt like an eternity to me.
No parent should ever have to see their child go through that, see their little baby turn blue and not have any control over their body..... to feel nothing but helplessness when it comes to their child. It is the only memory of my son I wish I could erase.

Big boy turning ONE!

ELLYOTS FIRST BIRTHDAY IS COMING UP!! LOOK FOR YOUR INVITES IN THE MAIL! :)Oh, the places he'll go!

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one day at a time

Today is one of those days that im down in the dumps. I know Ellyot is a happy baby but I know he would be happier if he could do more...  do what he should be able to do at his age. He gets so frustrated when he cant do something like get the toy that just rolled away from him, go over to his dad when he comes home from work and hug him or even sit up when he is tired of being on his belly and back. As happy as i am when i see photos and videos of my friends kids that are younger and the same age as Ellyot, it also breaks my heart. (very bitter sweet) As soon as I think omg thats too cute or 'wow!! that's great!!' I feel that dropping feeling in my chest and cant help but think Ellyot should be doing that... when is ellyot going to start doing that...

I wish there was more that I could do. More then just make appointments for him to see all these specialist for them to just tell me "well we will have to wait and see what happens. Lets get some blood work done to check stuff out. Oh they took blood for that? well lets get more blood from him to check out this."
I know getting all this done is good for him in the long run and will answer some of my questions but I hate seeing him treated like a lab rat. It kills me when strangers ask me how old he is and when i say 10 months they look at me like 'do you not feed him?! why is he so small?!'     

I wouldnt change him in a million years because to me he is perfect... I just wish things were different so HE could have a normal life. I dread the day he is finally able to ask me "mommy why am I not like those other kids"

Only person that knows I have these breakdowns is my husband because I dont think anyone else will understand.

It is always reassuring when all his doctors tell me how good of a job im doing with him and making sure he gets what he needs. Just have to take things one day at a time. 

Sometimes life isn't what you had planed

Where to begin?...

Sometimes life isn't what you had planed and it throws a few curve balls your way... and no matter who you are, it will happen to you, and probably when you least expect it.

When I was younger I pictured by the time I was 23 i'd be married and have my family started. Well... I can't say that didn't happen, because it did. I am married to the 2nd most amazing person to be a part of my life, the guy who can look past my flaws and love me for ME! The first...? ...well that would be my son. He is the reason I breathe, the apple of my eye, my reason for existence, and all that good stuff :]

Now with that being said, it didn't happen at all the way I dreamt it would. I didn't have my dream wedding with all my family and friends, stunning gown, beautiful location... Just signed a paper and that was that.. And to be honest, I probably never will have my dream wedding, but I am okay with that. 

Although I am one of the lucky few that didn't get morning sickness or stretch marks, my first pregnancy was a roller coaster ride of emotions and information that came out of left field, and to be honest I am okay with that too, because I got one amazing little boy out of it.

   Some people are up to date and know how everything started but for those who dont know, here ya go.

        

   When I was 14 weeks pregnant i went in for an ultrasound and the routine blood work you get in your first trimester. The blood work levels came back a little low in one category for someone that should be 15 weeks (from what their ultrasound said i was) but  i had gotten 2 before that one and i should only be 14 weeks, so they said I need to get a level 2 ultrasound done to get a better look at the baby. Also as part of the lvl2 ultrasound I had to see a genetics counselor... I was excited because I would get to see my little peanut again and I thought they just messed up because their calculations were off so I didn't really think anything of it. 

Boy was i wrong. After talking to the G.C. I was informed that the reason it was so important for me to see them is because the lvls in my blood that were low meant there is a high chance there is something wrong with my baby. Just from the blood work alone there was a list of things that could be the problem ... then the ultrasound confirmed something wasnt right with my baby boy. They saw that his size was off and something was going on with his heart but due to how small he was I had to wait to get an echo to confirm what was going on.... Till then i had a few more ultrasounds where they found a few things that could mean a few really bad things. But I was terrified to get an amnio because I was scared of the risk of miscarriage. So when they told me there was a chance Ellyot could have Trisomy18 my heart felt like it was being ripped out of my chest. All i could think was should I be planing a baby shower or a funeral... the next visit 12-15-11 (Jared's Birthday) I thought oh there is no way I could get anymore bad news... I was wrong... They were finally able to get a nice look at his heart where they found a hole in his heart (VSD) so they sent me to get an echo immediately.

It was one of the things that gave them more reason to think he had trysomy18. So when I went to get the Echo I gave in and said I wanted the amnio... I had to know what was going on with my baby, I couldn't take the guessing games anymore.  

Sometime within the next week I got the results for just about everything back... but the call I had been waiting for came and I found out Ellyot DIDNT have trisomy18!!!! I had never cried so hard from being so relieved in my life!! Then I found out that he did in fact have something wrong. His 22nd chromosome wasn't complete. He has 22q11.2 deletion. All I could think is what the F**k is that?! I had never heard of it. So straight to google I went, not only did I find out thats why he has heart defects.... there is a LOOOOOONG list of things that could be wrong and we wont know anything till he is born and even long after because its a wait and see thing. No two kids with 22q are alike.

At this point in time all I could think is what did I do wrong?! Did I not start my prenatal vitamins soon enough, is it because of the way I eat, Do I have 22q and not know it?!

Week after week I would get my lvl2 ultrasounds, saw the cardiologist to get more info about what was going on with his heart. Figuring out plans for where to deliver because my OBGYN is at a hospital that doesnt have everything Ellyot needs for when he was born. but i resided Im not switching my Dr's Ill just have to have him transferred to AI DUPONT because it would be best for him just in case he needed immediate open heart surgery. Then I go into labor a month early and earlier that day I had an ultrasound telling me he was about 4lb 3oz.... and that's when I freaked out.

 "omg he is so small I cant have him yet!! What if he does need the surgery?! Why did my water break? Why is this happening to me?!"      

15 and a half hours later on March 20th 2012 at 2:31pm I met my tiny 4lb 4oz, 17in long baby boy. His cry was so soft I could hardly hear him when he was only 3 feet away. And before they took him away to bring him to AI, they gave him to me to hold and as soon as I looked at him all I could think is 

HE IS PERFECT.  

ellyot cyril clancy