Thursday 30 May 2013

A new day...

How do you begin to cope with the fact that your baby's life has been on the line for the past week? How do you get your head around the fact that your once carefree life will probably never look the same again? How do you get over the guilt of abandoning one child to be with another? How do you rest when you know your precious little baby has a life-threatening heart condition?

I don't know the answer to those questions. I just don't know. But I DO know that God is with us in this. In the pit. In the mess. In the shock and the fear and the lostness. He says "I am here. I've got this"

There have been so many mercies in this nightmare. Our baby girl has probably been living with this condition unmonitored and untreated for the past week at least, and yet He has protected her. When I think of the nights I have slept easy with my baby beside me, unaware that one little clot could have spiralled our lives in a direction I can't even comprehend...

Heidi has aneurisms on her coronary artery. In places, as wide as 5mm. It is a mercy that she is still with us. It is a mercy that Doctor L, our consultant at the local hospital, when he walked out saying he wasn't going to treat her for Kawasaki's as he was sure that wasn't what it was, came back 5 minutes later saying he had walked out and an uneasiness had fallen over him - he had changed his mind. That was a God thing. Were it not for Dr L, the prognosis could have been far worse.

It is a mercy that we are here, at the Brompton with the heart experts in the UK, under the care of the consultant who wrote the book on cardiac complications in children. He eased our worse fears this morning, when we fired him with our questions; "It's bad, but I have seen much worse... there is a chance the aneurisms could heal themselves..."

It is a mercy that last night, as the tears flowed down my face, a lovely lady called Michelle came over and put her arm around me; "It does get easier," she said "the initial shock is incredibly hard, but you'll see... you'll look back on this time and be stronger for it". Her son is 11.

It is a mercy that a good friend of mine, who knows what it is to have a seriously ill child, said to me "unfortunately you are in a brave new world where you will learn to cope with things you never imagined. Take it one day at a time, and console yourself with the fact that Heidi and Ava will never remember this awful time"

Heidi lies here, kicking her little legs merrily and smiling charmingly at the passing Doctor's and Nurses. It does mess with your head somehow. This chubby little smiler doesn't fit the prognosis.

We are hopeful that God will bring healing to our baby girl. Her heart is strong, but one little blockage in her broken artery could cause a lifelong weakness. We pray that the artery will begin to heal itself in the next 6 months to a year. That is the best case scenario. It will be a long, nerve-wracking waiting game.

But in the waiting... in the heartache... in the questions... in the fear.... God is here. I KNOW that. I have felt it, tangibly, these past 48 hours in a way I have never felt it before. When my Dad and Dave's brother came to visit us last night, we went for a walk and sat down in a room on our own. We cried and prayed and and talked and sang together...


We rest on Thee, our Shield and our Defender!
We go not forth alone against the foe;
Strong in Thy strength, safe in Thy keeping tender,
We rest on Thee, and in Thy Name we go.
Strong in Thy strength, safe in Thy keeping tender,
We rest on Thee, and in Thy Name we go.

Yes, in Thy Name, O Captain of salvation!
In Thy dear Name, all other names above;
Jesus our Righteousness, our sure Foundation,
Our Prince of glory and our King of love.

Jesus our Righteousness, our sure Foundation,
Our Prince of glory and our King of love.

We go in faith, our own great weakness feeling,
And needing more each day Thy grace to know:
Yet from our hearts a song of triumph pealing,
“We rest on Thee, and in Thy Name we go.”
Yet from our hearts a song of triumph pealing,
“We rest on Thee, and in Thy Name we go.”

We rest on Thee, our Shield and our Defender!
Thine is the battle, Thine shall be the praise;
When passing through the gates of pearly splendor,
Victors, we rest with Thee, through endless days.
When passing through the gates of pearly splendor,
Victors, we rest with Thee, through endless days.



Our little fighter...

Baby girls. Sister love. Ava has been so strong and resilient through this.
I am so proud of her.

2 comments:

  1. My little brother had a brain hemorrhage 3 years ago. It was a really big one and while he was in the induced coma, for several days his after surgery, my parents were told he would be severely disabled. Wewaited and prayed, as did so many others. God performed a miracle. The Doctors couldn't believe how quickly he recovered. You wouldn't know what he's been through if you saw him. He's had to go for regular surgeries to keep gluing where the bleed was and we live with the risk even now that it could happen again but he and his twin became christians while he was recovering. I on the other hand have been ill for 10 years and in a wheelchair for 3. My brother has cerebral palsy. I know God is good when He chooses to heal and when He chooses not too. I'm praying constantly that God will heal Heidi but may I resure you that, although my illness is different to what Heidi could face I know she can still enjoy life. Laughter is an incredible gift from God. It's great to hear Heidi is laughing. Love in Christ Danni

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  2. Sorry. I don't think my last comment really made sense. My brother who had the brain hemorrhage is like normal; it's my brother in law who has cerebral palsy.

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