Sunday, September 18, 2011

People keep telling me I'm strong. I am not. Where some people may use their faith as a crutch mine at the moment is being used more as a wheel chair - no, stretcher.

I have cried oceans of tears. I have screamed in frustration. I have crumbled in surrender. I have wanted to vomit because my body was rejecting what was going on around me so forcefully. When I got on the plane to fly over here there was a little screen in front of me showing the news. There was something on there about the 9-11 memorial parades being cancelled. I stared in disbelief. How could anyone care about that? In the scheme of things what did it matter? My baby is sick, get out of my face. I have been angry beyond belief. Angry at what my baby has suffered. Angry at what it takes away from the other children. Angry at what Jon and I have had to go through. Angry and resentful of the separation and what I am missing at home. Andrew will likely have more teeth and may even be walking before I see him next. I have felt lost, like nobody's mother. In a limbo of motherhood. I can't tend my babies at home, I am so limited with what I can do with this one there are moments when I feel like a musical moo cow - singing and dispensing milk - with no reassurance she can hear me singing. With all my other babies they would cry and I would feed them. The crying would stop and I would settle them into my arms. There would be moments where we would sit and gaze at each other, learning each other's face. With Kaylee I deliver my milk downstairs then it is shipped up to her in measured doses which are then drip fed through her NG tube. If she is upset, I can re-wrap her and change her nappy and pat her, but there is no peaceful moment post-latch where all you can hear is contented gulping and most of the time I only pick her up two or three times a day at the most. Most of the time, there is no warm weight in my arms. Kaylee's eyes have only opened a few times and never focused on anything, not even a bit. While I try not to borrow worry from tomorrow, the fears of today are enough to scare the snot out of me. What we face is epic in nature and I do not feel strong. If I praise, it is something that breaks from within me - a sacrifice of praise. This makes me HATE sin with the fire of ten thousand suns. I have held other mothers around me as they shook with the same fear I feel - and I am not a hugger. I have stood shaking in helpless disbelief as my baby struggled for breath or underwent yet another procedure. I have sagged in grief and defeat over small things - like not being able to put clothes and booties on my baby because of all the things she is hooked up to. I grieve strongly the loss of our dreams. We had so looked forward to bringing this baby home and introducing her to our family and our community. While this will still happen, it will likely involve delay, questions about her health and her development (many of which we will not have the answers to) and fear - for someone sneezing on your baby is a bad thing but someone sneezing on your baby who has an unrepaired heart defect...

So I am not strong.

I am carried.


LindaOz said...

Jess, you are indeed carried. And God will not fail you. I know you don't know me, but I've been reading your blog (which I found on the Aussie homeschool board) and I have had a child with heart defects. I know there are no words, and I also know that God is faithful.

Praying for you and Kaylee.


Jess said...

Thank you Linda

Momma Bug said...

I love you friend.

DaughterofEve said...

You are not strong, but your God is.

Anonymous said...

Jess, I've also been reading your blog (via Aussie homeschool) and wanted to let you know I'm praying for you and your family.
Do you know the music of Mark Schultz? He has a song called "He will carry me", which has helped me many times through dark days.

HomeGrownKids said...

Amen dear sister. Amen.

None of us are strong. And if we are, it will not last. For any strength we have must be, ultimately, because we are carried. In a completely different circumstance I understand. Not with my young baby per se, but with one of my baby's- even though she was older.


Anonymous said...

Oh Jess (((HUGS))) to you and your family.

I'm so sad to read at how much your precious baby girl has suffered in her short little life! NO FAIR!!!

I just what to say that to me you are very strong!!!

God Bless, and I pray that things will get easier, and that you'll have a lighter load.

Love Shellybell x0x0x

Char said...

Love gets angry too, love hurts and cries and screams and fights for justice! (one of) My favourite promises The Lord will fight for you and you shall hold your peace. (Exodus 14:14) You are never alone in this battle, wounded, weary soldier. Never! xxxxxxx

Char said...

p.s knowing what happens the week after this post I just want to say I am so happy that Kaylee CAN hear you sing to her!!! You musical moo cow!