Today was a little harder than I expected. I guess I was so worried about her coming through her surgery I didn’t let myself think of what happens afterwards. Today Eoin and I literally skipped from the Ronald Mac Donald house to ICU. It is a good five minute walk and our spirits were high. We were laughing at how B was giving the nurses in ICU a hard time. I guess because of this I thought she would be sitting up nearly back to normal. That’s why when I saw her I was a little taken aback. Her beautiful little face was swollen and puffy, her voice box is damaged from the vent so her silent squeaky cry cut through me. If you hear your child scream tonight, remember that should be music to your ears.
You can tell by her facial expressions that she is really uncomfortable. They upped her morphine to help sedate her a little more and to take away the dreaded Glenn Headaches I have heard you all talk about. I finally get it fellow Heart mums. I don’t know how some of you have done this twice or more. I am so lucky as I never really saw B in actual pain before today. She sounds weak and broken from this. However I know deep down that she is strong and this will not keep her down for very long.
Today was Ho Ho day in crumlin. I can’t believe how absolutely incredible and amazing people are. The volunteers and companies that help us parents are beyond price and unfortunately not recognised enough so here goes –
Mac Donalds – need I say more. They are INCREDIBLE, this Christmas when you are enjoying your Big Mac Meal please throw all your spare coins in the wishing well Ronald Mac Donalds foundation in honour of B.
Domino’s Pizza delivery Free to the parents every Wednesday night.
Vodaphone provide free Internet access.
Kellogg’s provide free cereal every morning.
Surgeons, doctors, Critical illness nurses, ICU nurses and day nurses. Thank you for your dedication and time. All of them were here till late last night with us. As my friend said this was the shortest day of the year but the longest day of our lives. This is their lives EVERY DAY.
Words can not express enough the strength we are getting from all your words of support and Encouragement. Please continue to pray for our little girls uneventful and speedy recovery.
If I could write your story B.. (Oh how I wish I could) I’d pen for you a journey… That held nothing but good. Wouldn’t it be perfect… If that job belonged to me? I think I’d change a thing or two… While writing your story. I’d write of lasting happiness… The storms would stay at bay.. I”d write your story carefully… I’d have so much to say… You’d know not of a hospital… Or days in ICU… You’d only know of simple things… Like other children do. The sun would rise…yes everyday… And shine to make you smile… You’d never know a day of pain… You’d never face a trial. You’d dance to music all your own… While watching Sesame Street… I’d tuck you into bed each night… And life would be complete. I’d write of picnics in the park… And winters in the snow… I’d write of laugher,joy and love… I’d sit and watch you grow. I’d proof read till my eyes grew tired… Each line and paragraph… And let my pen fall to the floor… Then stop to hear you laugh. And never would I question… What sick children must face… Never would I have a need… To ask God for his grace. I’d likely live oblivious… Of what it means to be… A member of this “special club”… I call my heart family. If I could write your journey B .. Perhaps I’d not convey… The message that HE longs to share… “We must live for today”. Your story has been written… Each stroke penned with great care… He knows each thought I have of you… He’s numbered every hair. No I can’t write your story pet Although I wish I could… I must heed what HE says to me… “All things work for the good”. If I could write the life you’d live… I’d fail…don’t you see? I’ll leave it in much better hands… He’ll write it perfectly.