Monday, June 01, 2009

Having a moment...

I know in my heart that she is going to be okay. BUT I miss her. I miss her so much. It's so hard to see her like this. So emotionless. So quiet. So limp. I miss her smile. I miss her kisses. I miss her words. I know this is all temporary. That soon enough I will have her back. But in this moment...I am heartbroken. I wasn't prepared for this. I knew there was a possibility for weakness but this is beyond weakness. I get blank stares. Sometimes I don't know if she is awake or sleeping with her one eye open.

None of the doctors are worried. They say to give it time.

The only thing getting me through this moment is the fact that we have seen NO SEIZURES. It is absolutely amazing. I hold on to that.

I also hold on to the thoughts and prayers sent by all of you. I feel beyond words the love I receive from people who care...some that I have never met...some that just found out about our journey. The words of wisdom from those who have been through what I am going through gives me hope.

We have had a day filled with joy. Progress made by Sophie. Thoughtful care packages sent from all over the country.

But at this moment...when I stare into her eyes...I wonder when I will get her back and it fills my heart with sadness.

It is not easy being in a children's hospital. There is sadness all around. Crying parents. Crying babies. Parents who are given no hope at all. Toddlers crying for their parents that are no where to be found. It breaks my heart. It is hard to watch others suffer.

I feel selfish. For not being more patient. For feeling sad when the doctor's are so hopeful. For wanting so much more when I am surrounded by those who have yet to experience the joyful things that I have experienced with Sophie and who may never experience those things with their child.

I pray for our last roommate...a baby girl who is only 5 months old and diagnosed with Infantile Spasms and Aicardi Syndrome. Her parents are way too young to care for her and her mom is ready to give up. Fortunately, her grandmother is fighting for her.

I pray for the young mom sobbing in the PICU because someone shook her baby and she doesn't know how she is going to care for her child.

I know these are a lot of random thoughts. I think the week has caught up to me. That a mental breakdown was bound to happen. It just seems like life is so unfair and I am not talking about me. For these children. Who have to suffer. It just doesn't make sense.


Sinead said...

Just reading your blog for the first time. My baby had surgery on her frontal lobe on April 30th so the stress of being in the hospital is still fresh in my mind. Its hard to be patient and it doesn't matter who is worse off - you still want the best for your little princess. I hope for the best for sweet little Sophie. Temporary weakness is to be expected when they get close to the motor cortex but it doesn't make it any easier just cause the doctors expect it. Take good care of yourselves.

Krissy said...

Know that there are many of us out here that are supporting and rooting for you guys on this rough journey. I'm sorry that you're having to go through seeing Sophie like this-I'm so glad there've been no seizures though-Take each day one at a time and know we're here.


Anonymous said...

Life's not fair and that truly sucks. There's no answer to the why questions. It just is. You deserve to have your breakdown moments and that's what they are.... moments. Then you pick yourself up and get on with the fight.
Sophie has been given a gift with this surgery. I know she has! Just as she was given a a gift when she got you and Brad for her parents. I know you want to see quicker progress. I won't tell you to be patient, but I will tell you that progress is coming.
Remember how you waited and waited for her to get rolling and then suddenly you found her half way under the sopha!! (always loved that picture)
Sophie needed this big rest and adjustment time. She's there and she's coming home with a much brighter future.
Deep breathes. Thoughts and Prayers coming your way every moment.


Anonymous said...

As I read this post I'm sobbing...for you and the incredible strain you are under..for all the others you mentioned. We can't even begin to imagine what all of you have been through and not just this past week but these past few years. Remember that not only are the immense pressures and worries of the past week hitting you but also those of the past few years. Honestly I couldn't have made it this long without having a let-down moment. You are entitled to many and you need to release it for your health and the health of all your babies. You've made it so far and there is so much good news and promise. Lean on your family and friends!

The Lalumondiere's

MJStump said...

The pain your are dealing with right now is definitely Your pain, and it seems only natural to have those thoughts from time to time. Some can relate to what you are going through, but no one knows your pain the way you do. You have a right to feel the way you do, because it is so incredibly difficult to watch your baby go through something like this.

A children's hospital is definitely a sad place to be...all of the illness with so many little ones, and the heartache that brings to so many.

I know you miss your baby, but know that soon enough you will have her back..all of her back, and better than ever! We had some scary times with our baby on this ACTH...if she wasn't screaming, she was just there, and not smiling or doing much of anything. I cried so much, wanting my baby back, worried about what this really meant..she began coming back and we are weaning her off the ACTH now.

It is super hard, but what gets us through it all is focusing on the good things. We made a list of when God was present, and kept going back to that when we would get pretty helps lift us up and be grateful for all that He has done for us. So maybe try making a list of the good things, and go to that every time you get sad or scared. How about starting it off with "the call." Don't forget every day wit NO seizures..woohoo!!

Many prayers still coming for you guys ;)

JSmith5780 said...

Life certainly does suck for some of these kids. Kids unlike ours who don't have an advocate. It's easy to focus on the sadness, but you need to re-direct and focus on the wonder that is Sophie. She is doing amazing. I am so excited and happy for you all.

blogzilly said...

It is not easy being in a children's hospital. There is sadness all around.I took that statement very much to heart, it was exactly what struck me the first time, in March, that I found myself in a Children's Hospital. I can imagine how much that rips at you, in addition to the personal loss you feel right now at not being able to communicate with Sophie like you used to.

You have to try to put it (the feeling of all the despair that surrounds you from other children and parents) aside for the time being. Hard? Yes. Doable? Yes.

Sophie will come around more each day, too, I'm thinking she is on a ton of meds right now, that is probably a huge part of it.

Susan said...

First off I want to say that you have one of the sweetest and biggest hearts. When I read your blog I feel your love for Sophie, your family, and all the other families that are suffering. That strong heart is what is going to help Sophie through this. I know we have not met, but know that our family knows who Sophie is and we are praying for Sophie and know that she is going to be good! I hope the despair leaves your heart, I know that feeling and it is awful!! Take care
Yeah for no seizures. What an amazing feeling that must be!

Holli said...

It's hard to tell your heart what your brain knows this is just a moment. It can't be easy to put that into prospective when you are Living this Moment right now -seeing your baby girl so inactive and hurting.
Your heart will come around, because Sophie will soon show herself to you again before you know it! This is only a small moment in what will be a bright, full life for her!

Adesta said...

I don't know what to say that hasn't already been said Elaine. I read the post and could hear your heartache through your words. As for the young parents of the baby with IS...maybe you can help educate them and the grandmother. Hearing from another parent of a child with IS may be just what they need to hear...instead of the words coming from the doctors.

Hang in there, Sophie will start getting back to herself...and then, I have a feeling you'll have your hands full! *smile*