It’s been one of those weeks – one that I hadn’t anticipated being as hard as it has turned out to be. But I have wept buckets this past 6 days. Not necessarily all tears of heartache, some happy tears, some pensive tears …. but truthfully a lot of painful tears.
Last Sunday we were invited along to the Forget-Me-Not service organised by the Northern Ireland Children’s Hospice.
We spent 24 hours with Elijah at the hospice back in October. And we had the most wonderful time. You may remember me saying that, during our time on PICU I had said that I wanted to make memories with our boy and his siblings. I wanted Jonah, Seth and Leah to hold Elijah deep in their hearts and to not just think of him as, ‘that baby we visited at the hospital’.
And so the idea of us spending time at the Children’s hospice came about. Now, I have to admit, in the beginning I was raging that they had even suggested the hospice to us. We did not need the hospice …. we were not in need of ‘end of life care’. But I had completely jumped to the wrong conclusion. Of course I knew that they provided respite for families of children with complex needs, but in that moment all I could think was “that’s where you go to die”. I do not mean that to sound insensitive, nor flippant, not in any way hurtful. But truthfully, that was what I thought. We are not going there!
Once I had taken a step back, caught my breath and chatted with our heart consultant and another lovely, lovely man (the respiratory consultant) I realised that a stay at the hospice would be just perfect for us at this time. We could go there as a family, make memories as a team of 6, and have medical support on stand by if we needed them. In many ways it was perfect.
And gosh was it FAB! We had the best time. We told Jonah, Seth and Leah that we were going to a ‘special hotel’ which helped to care for children who were sick. They were so excited – our 3 love a good hotel stay! The fry, the swimming pool …. what’s not to love?!
We are so, so grateful to the hospice for helping us create the most wonderful 24 hours with little Elijah. We had pizza and crisps and juice. We watched a movie, played games, did crafts….and all with our darling little brother. They got to have dinner and breakfast with Elijah for the very first time, we got to read bedtime stories together and all go to bed in the same place for the first time. It was pretty magical.
But the highlight, and quite possibly in my top 5 moments of our 5 months was the swimming pool. Our cardiologist has told us about the pool and how the other 3 would really enjoy it and how it was lovely and warm ….. he got the shock of his life when a few days later we stuck up an A4 photo of all of us in the pool! I had no idea that he hadn’t considered Elijah getting in!!!
There was no way however that I was going to miss the opportunity … I knew Elijah would love it, I knew Jonah, Seth and Leah would love it ….. and Ben and I loved it too. A normal activity, that we would otherwise have taken for granted, but now felt like we had won the lottery! The hospice were so good in supporting us in this. To them nothing was a problem.
We were very excited!!
Such a wonderful time!
We really did have the most amazing time. We will never forget our time there.
And on Sunday past we placed a very special stone in their memory garden …… (if you follow me on Instagram you may have seen it ) It stirred up so many emotions. We were reminded of our time there as a family of 6. The significance of what we were actually doing hit me like a tonne of bricks.
The tears flowed that day. It was hard, so very, very hard. That night as I got into bed, I think I cried …. once again I cried myself to sleep, it had been a while since that had happened. But the next day I dug deep to find some brave. I felt an over whelming gratitude for our precious baby boy. So thankful to the hospice for all that they have done and continue to do for us as a family.
But praise and glory and honour to a Heavenly Father who ultimately gives us hope that this is not the end. The best is yet to come!