2.18.2011

long

i am exhausted.

today is the first day i felt like i cannot do this anymore.  i cannot take another week of this.


ironically, today was also sj's best day ever.  but she has been so bad that even though she had her best day ever, there is still a long way to go.  and i suppose that hit me like a ton of bricks today.  she is so much better. but she still needs to be way better than today to go home.

her xray was improved this morning.  not great.  but improved.  her fever was not as bad today as it has been.  i begged them to give her tylenol because she is such a different kid when she has a fever - completely lethargic and blah.  which they did this morning.  but then they came back and said they would not do that again because they want to see how high the fever goes.  which was thoroughly discouraging.  on one hand they tell me she needs to be up and walking and eating to get better.  but they won't give her tylenol and so she is not interested in any of the above!  i thought about getting in their face and wagging my finger and giving them a piece of this mama bear mind, HOW ARE WE SUPPOSED TO BE PROGRESSING IF YOU WON'T GIVE HER STUPID TYLENOL?????  but i refrained.  i did get a little testy with eric regarding the tylenol because he has so much power over the doctors and their decisions.  okay, he doesn't.  but i needed to get mad at someone!  (i think this is why they say kids' illnesses are really stressful on marriages...)

so we are taking steps forward.  even if sometimes it feels like the doctors are working against me!

today also was a realization for me of how long term this thing is.  i wish i could say we have done the heart surgery and we are done.  put the jammie pants in the wash and say goodbye to the hospital.  but there is so much else.  and if i am honest, i let myself go to the place today where i thought i cannot do this.  this is not what we signed up for.  this was supposed to be a 'minor' special need.  not only are there innumerable follow up visits over the next 12-18 months but there is also a real risk to her heart and lungs if she should even get a cold in the next year while recovering.  bottom line, her heart and lungs need to stay away from any additional stress.  so i am looking at trying to keep her well for the next year which is so completely overwhelming i cannot even think about what that looks like.

and, the biggest reality of today.  because of sarahjoy's enlarged heart over the last two years (it was TWICE the size of a normal heart) her breastbone has grown in a domed shape in order to accommodate it.  i was hoping that it would just go away with the surgery but we were told by the doctors today that it won't.  in all likelihood what will happen, although her heart will eventually go back to a regular size, is the breastbone will continue to grow abnormally and cause a somewhat disfigured looking chest.  once sj hits the tween years when her body starts developing and breast tissue comes into the picture it may be disguised some.  and as the muscles enlarge and pull on the breast bone the body may flatten it out a bit.  however, there is a very good likelihood that she will have to have another chest opening surgery where they insert a metal rod to reshape the breast bone.  when that surgery happens, i don't really know.  the good news is that there is a world-renowned clinic here at this hospital that operates on that deformity, known as 'pectus.'  the bad news is that truly our little girl will not be completely normal looking.  does she care when she is two?  no.  but her mama cares.  and she will care.  in fact, i really care.  i can't lie.  it really bothers me (insert major tears here.)  people can tell me all they want about how wonderful we are and that sj is a miracle and all that true stuff.  but this mama doesn't like it any more than any other mama that her little girl is going to have to deal with something that makes her look different.  at this point i don't even care about the surgery.  i just care about my little girl's heart and how she is going to have to deal with being different.  and how bad is it going to look and will people constantly ask about it and what will it do to her self-esteem............

i am exhausted.  i am physically and emotionally wiped.  

9 comments:

Anonymous said...

I am so sorry that you have to go through this. Please do remember that to me, a complete stranger, I am in awe of your strength and courage. You saved this little girls life!!! How amazing is that??

Kelly said...

Just want you to know that I get it. :) Whenever I headed down the path of despair - my mom (yes, that means I have done this all of my life) used to always say, "One day at a time...." I always hated those words but as I have grown up they have often re-rung in my head. Sometimes I even have to make a list of what is good and 'consistent' about 'right now' and read that over and over to myself. And sometimes I just melt into a panic anyway. Thankfully our God never runs out of patience or grace. Praying for physical rest for you and Eric. Praying that you will be able to find peace in the successes of each minute no matter how small they may seem. Praying that you will be able to trust SJ's future to the One who is already there. Praying.....

J said...

Thanks for being so honest with us.

Alexa said...

I was introduced to your blog through Rachel King's blog so I'm a complete stranger! Anyway, I cannot even imagine the stress you are going through right now. But I KIND OF know what you're going through with the domed breast bone. Totally not as serious but my 7 month old has syndactyly; her 2nd and 3rd toes are fused together on both feet. I am so scared about her being teased when she's older. I know we "shouldn't" worry about things like that but they are girls, and we all know how vicious other kids (especially other girls) can be when it comes to looks. And she has a hemangioma on her head, and people are ALWAYS staring, and sometimes the first thing people will say to me is about the hemangioma. It really hurts my feelings. I know you may not feel very strong right now but you display so much strength in your blog. I not only pray for SarahJoy every night but I pray for you and your husband. I know it's easy to dwell on how long this journey is going to be but I bet several months down the road, you will look back and think about how quickly it went by. Praying for strength, peace, comfort, rest, and SarahJoy to meet her goals quickly (I know how that is; my daughter was in the NICU for a couple of weeks when she was born).

Anonymous said...

Ash--i'm so sorry for your pain, exhaustion, and feelings of overwhelming burdens...those are some of the most suffocating emotions and I wish I could help you, friend. I'm praying right now that you'll FEEL this yoke being lifted off your weary shoulders and replaced with the one that is easy and light. I don't know how Jesus can do this, but I know His word is true. And as you pass through these waters, I'm praying that they don't sweep over you. Sometimes I feel that I'm about to drown and then a get the tiniest sensation of sand beneath my toes...realizing that I'm closer to walking out than to drowning. I'm praying that Jesus walks you out of these debilitating waves today and that you experience rest for your soul.
sending prayers with love,
heather

Cristina said...

As I read all that people have said to you today...I think YES, that is what I am thinking but they have a better way of saying it! I am praying for you Ashleigh...May the God of all comfort, surround you with peace.
You are one amazing woman! I am awed by your strength so far. You are not alone.

Michael & Beverly said...

I feel for you, Eric AND SJ. Life situations can create terrible heartache. I wish I had some good words of wisdom, but I don't. I just believe in you and Eric. I am confident that you both will get through this. The pain you feel reflects the caring person you are.

Anonymous said...

I don't know you at all; I stumbled across your blog through a friend of a friend's blog... but I wanted you to know I respect you so much. I'm praying for you. God bless you and your entire family!

Anonymous said...

In my times of doubting and frustration after we had adopted an older child (10) the clear confidence that he was God's plan for us even from before his birth and before we had thought of adopting helped to settle the fears. We could take the good and the bad and the uncertain future because we put out our hands trusting God and he gave us this child as our own. I trust you have this confidence that SarahJoy was designed for you and you for her.
Maddy Hardeman