Oh my beautiful baby. I don’t know where to begin – this month started on such a high note. We spent a wonderful weekend with your Grandparents up in Toddington – your first road trip! You were so loved – fussed over by Aunty Josie and her friends, cuddles with Grandma + Grandad. You even met Great Grandma Majorie – it was amazing to see four generations hanging out on the couch together.
We went to church too, and met so many of Grandma’s Church friends. After your rocky start, you’re practically famous in in Toddington. We were so pleased to show you off, to shake away the cobwebs of hospital and move forward towards little normality. You loved it too – there was so much love, so many people to coo over you and replace the dummy you kept spitting out just for fun.
You did have a little bit of reflux, and we were worried about your weight plateau a little, but generally you were your happy grizzly little self.
Your deterioration happened a little while after – the NKH Three Month Curse, popping up right after we got your immunisations. I’ll forever feel guilty because I think my decision to get your immunisations acted as a catalyst. Oh my baby boy, I’m so sorry.
You had seizure after seizure. We were admitted into hospital and an eeg confirmed it by showing hypsarrhythimia. Devastation doesn’t even cover it, we had hoped we might have longer before the seizures came. Nonketotic Hyperglycinemia can suck it.
And oh how you fought my little guy. You tried and it was heartbreaking to watch. We stayed on the ward for a few days before we were discharged, when it looked like you were recovering. We lasted three days before, oh baby, you had your first five minute+ seizure. We were out with our NCT friends, and it was the first time I’d seen the difference between NKH and not NKH, even before your seizure happened. I guess this is our path now little guy. Where you go, Daddy and I will follow.
You’ve not been home since that seizure. We spent a week on the ward, where you got more and more distant. You stopped opening your eyes. You stopped crying. You stopped moving. The only constant were seizures, happening more and more frequently.
And then on Christmas Day, when we couldn’t stop them and you were seizing constantly, you were admitted to Intensive Care. Oh my little guy. We love you so much, and in a place like intensive care that love is accompanied by so much fear. We were asked to consider terrible scenarios, and make horrific decisions for you. Through this whole time we worried for you, we did everything we could to ensure any decision made was what was best for you, but it’s difficult baby. Trying to differentiate what we’d like for you, and whats best for you is so so difficult. It was shortly after one of these conversations that you were baptised. We would have loved to have had a beautiful ceremony in a church, with you in one of those fancy long white Christening Gowns but alas, that was not our story. It was a sweet little ceremony done in intensive care, the curtain closed against the business of the ICU with your Grandparents.
We didn’t celebrate your first Christmas like we wanted to either, but we did set up a fundraising scheme for your first Christmas. Our friends and family rose the occasion and we’ve raised several thousand pounds towards NKH research. We’re so pleased! We hold on to the dream that you have a future, that one day the research will provide the reality to our hope and your future will be comfortable and happy. In the meantime, we did try enjoy what there was. You were given a giant snowman balloon, and on Christmas Eve Grandma + Grandad came down to visit, as well as Uncle Michael + Aunty Mathilde. It was a fairly cheery time, even if you slept through it all.
Shortly after being admitted to Intensive Care, Grandad Gedge and Aunty Liss came to stay for a week. We settled into a routine where we could be with you, switching two people in and out. You spent every day in someones arms, as we held your hand and hoped, letting the nurses know when you seized, which you did frequently.
When the New Year rang in, Daddy and I were right by your cribside in intensive care. There’s an excellent view from the fifth floor across the London skyline, and on the horizon we watched the fireworks that happened along Southbank. It was pretty, and scary – we don’t know what our future holds and we’re desperate for you to open your beautiful little eyes again.
It often seemed like you were so close to the surface, so close to breaking through into consciousness. But then a seizure would take you away, and we’d sedate you. Hoping to give your brain rest.
We moved to Hospice in the New Year. For us it seemed like the most sensible choice, and we hope that a more relaxed setting will help. I’ve been ignoring the End of Life part of Hospice. I don’t think we’re there yet. I’m hopeful that whatever wracked your little body just needs a little time and love to recover.
We’re still here as we celebrate your third month. We’re so hopeful, and we love you so much little guy. Every day we spend with you, we’re so hopeful. You’ve changed the trajectory of our lives in such a fundamental way, and I can’t imagine a world without you in it.
Arohanui my little man, more than you know.