Those last 6 days were a mix of both the happiest and the saddest days I have ever experienced. I wish I could show you videos from the Sunday afternoon here at home – he was LOVING life with his siblings. They sang with him, read him stories, played with him, danced with him and he soaked it all up. You could tell he was in his element. It was so exciting for them getting to have bedtime stories at home with Elijah – not just in the hospital. They got excited about where he was going to sleep, whose bedroom he would share.
That was quickly snapped away from us though when in the early hours of Monday morning he went into SVT. By the Tuesday night we were taking Elijah back to hospital and deep down I had a horrible, horrible feeling that I just could not shift.
As I mentioned in previous posts all of Elijah’s tests were coming back clear. The initial findings in the muscle biopsy, again were clear and we were told that the final testing that they would do could take up to 2 years to find out the result.
God gave us the result on Thursday.
Another reminder that God was with us. He had a plan.
Everyone was shocked that this result had come back, especially now. But God knew. There was purpose in this. And whilst the result confirmed our worst fears, and nurses and doctors thought it was horrendous timing. For us it was perfect timing.
Those results confirmed that there was a fault in Elijah’s DNA – he had a mutation of 80% …..80%!!! How that wee man survived at all was nothing short of miraculous. Elijah’s body could not make energy….his little body, in our opinion was not made for this place….but God allowed us, by His grace to meet Elijah, to know Elijah, to love Elijah. God had a purpose that only our precious wee man could carry out….and I am so proud to be his mummy.
For me, it confirmed that this was the way things were meant to be. It was the way Elijah was made – his DNA – that’s what makes you, you. If Elijah’s DNA had been different, he wouldn’t have been Elijah. And whilst my heart broke….and every day is a battle, I got great peace in knowing – before he was even formed God knew exactly how many days Elijah would have on this earth.
Those next few days are a bit of a painful blur. There are moments which stand out in my mind which I will forever treasure. And I have to thank EVERYONE at The Royal Children’s Hospital, especially on Clark Clinic for allowing us to say such a special, poignant, tender ‘goodbye for now’ to Elijah. They were truly amazing. Just amazing. I will never forget those days on the ward. I will never forget how their hearts broke too. How much they cared.
Those days were marked with the hope that we WILL meet again….they were marked with love….they were marked with peace. But, they were also marked with a sadness, not a despair, but a devastating sadness that words cannot describe…..and as the tears fell, and continue to do so….God said and still says….I’m here. I’m with you. I will never leave you, I will never forsake you. We will get through this together.