Monday, November 2, 2009

Do you ever have those days when you don't know if you should cry, scream, or just throw your hands up in the air and want to give up? I feel like I have felt that way for weeks now and to be perfectly honest it is so overwhelmingly difficult.

Gracie went in for a check-up with her pediatrician. It wasn't a well-child check, he just wanted to see her again to assess how she was doing and get to know her better since we just started seeing him. I have been thinking that there is something wrong with Grace's back and that is why she absolutely hates to sit up, when she sits, she screams and cries as if she is in pain. In the past we thought maybe she had a touch of scoliosis, but everyone told me that there wasn't much that could be done about it so lets not worry about it now. I asked the pediatrician to look at her back and after looking at her back and her curled toes, he wants us to go to an orthopedic specialist to see what is going on and also get a complete scoliosis survey done.

When he looked at her eyes he noticed that she went cross-eyed a bit and asked me if she ever had her eyes checked. I told him that I thought about it because she has struggled with cross-eyedness before, but it seemed to be getting better so I didn't worry about it. He wants us to go to an eye doctorand have her eyes checked because if this goes untreated if there is a problem, she could develop permanent blindness in one eye.

The doctor than said that he wanted me to consider having genetic testing done to see if there is anything else abnormal on her chromosomes to watch for. He just feels that though it won't change much, at least it will give us a better picture of Grace.


I'm grateful for this direction because yes I want to address things to give Grace the best possible care and scenario, but how much more can there be? She has had mild hearing loss, heart problems, lung problems, so many complications from surgeries, and now all of this, it just doesn't feel right. I try not to complain and vent too much about where Gracie is and all that she has to deal with---oxygen, feeding tubes, delayed development, poor growth---because I know so many other children that seem to have it worse than her, more life threatening conditions, but come on already, where is Gracie's break? When is it her turn to be able to excel and be a "normal" kid?

In posting this I don't want special treatment, I just needed to get this out and it is more cathartic to do so this way. I know that Grace is doing amazingly well for Grace and where she has been. I'm grateful for the little accomplishments she makes daily, I just love her and worry about her and if I can give her all that she needs to succeed in this life. Can I fulfill her medical needs and also help her have some resemblance of a normal childhood? Amidst all that is going on with her, will I be able to help her see how marvelous she is and how despite her medical conditions she isn't any less important, any less needed, any less capable of living a fulfilling and worthwhile life?

6 comments:

Michelle said...

In getting to know Grace, I think her spirit and personality tell that she is MORE important, MORE needed, and MORE capable of living a fulfiling and worthwhile life. And not only that, but it is in her life mission to make those of us around her feel the same way.
Everytime I am with Gracie, I am reminded of God's knowledge of each of his children, and the miracles He can perform.

I'm sorry you have to go to more doctors. I hope that they have nothing but positive and exciting things to say for Grace.

Deanna--you are amazing! Your strength and dedication is a great example.

Nic and Ashley Haws said...

I'm so sorry Deanna. I understand, oh how I understand. It is so heart BREAKING to watch your child suffer. It's nothing short of ANGUISH to wonder "how much more can my child possibly endure???" It is a difficult, sorrowful thing to wonder why, to never know how much more will be required of your child. I'm so sorry.

You can be angry. You can be frustrated and SICK OF IT. It's okay for you to mourn and wish you could give your baby more. It's okay. That is motherhood. You are a wonderful mommy who loves her baby. It's so obvious. Gracie is so blessed to have you.

Take it one day at a time. Just one day.

I'm sorry you've been having such a hard time the last while. I will pray for you.

The Simmons Family said...

It's okay to feel frustrated.. it's simply "not fair". I say it all the time. I just trust Heavenly Father's plan. It's not always easy. I PRAY that her eyes are fine and that her back is okay as well.

Owen looks to have a curve in his spine which I was planning on addressing at the pediatrician tomorrow. Perhaps that's why walking is difficult? It could also be in my head. :)

Andrea

Erica said...

Oh how frustrating to have one major medical issue with its own complications and then find out that there could possibly be more. Grace is a beautiful little girl and has come so far and will continue to do so. Please complain all you want. Sometimes its good to just get it all out.

cici said...

Dear Deanna,
Please don't be discouraged. These really aren't as devastating as you fear. My sister had a crossed eye as did two nephews and two nieces. She had two surgeries and it still remained crossed, but today she wears one contact in that eye and lives life to the fullest and it gives her beautiful character. My nieces and nephews all were healed with patches and exercises.
My Mom had scoliosis and so did my niece. Therapy and massage really can help and not life threatening or deforming by any means.
Gracie is a living doll and who is to say what is "normal" It is better to be "special" than just normal.
I admire your openess and honesty and that is another quality your beautiful daughter will possess.
Do not be afraid, God has her wrapped in his love.
{{big hug}}

Ryan and Hilary said...

It seems like everything hits at once. I'm sorry you are frustrated. The answer to your questions "Yes" you are a wonderful mother and you do the very best for your children. She is a beautiful Daughter of a very loving Heavenly Father. Trust in him. Don't let Satan tear you down with unneccesary worries. It definitaly feels good to vent, that's one reason I love the blogging world. Much love, xoxoxoo Hilary