Christmas this year will be different for everyone, for us Christmas will never be the same again.
Like all parents, we were so happy to start our family; welcome our son into the world and watch him grow. But despite being first-time parents, we knew early on that Ted didn’t seem to be developing how he should be. After what seemed like never-ending tests, Ted was diagnosed with Aicardi-Goutieres syndrome (AGS) which meant he had brain damage and ultimately needed 24-hour-care. The hopes and dreams we had for our beautiful son were taken away and replaced by a fear of what the future would hold.
Everything seemed so overwhelming, but when we were told that Shooting Star Children’s Hospices would be able to support us, it was like a hole had been filled, a weight lifted. We didn’t know how much we needed a lifeline until we were given one.
Since then, Shooting Star Children’s Hospices has been there for our whole family. When Hallie, Ted’s sister, was born, we involved her in the hospice straight away – it gave Ted and Hallie the chance to have fun without restrictions, whether that was chilling watching a film or being worn out from splashing so much in the hydrotherapy pool. Being at the hospice gave us the chance to just be a family. Hallie thinks the hospice is an extension of our family because it’s always been such a big part of our lives; it really has been a home away from home.
We can’t put into words what having Shooting Star Children’s Hospices means to us. So many special memories with Ted are at the hospice and we always hoped that, when the time came, Ted would die peacefully there with his family around him. But it sadly didn’t happen that way.
Ted had picked up a flu and fever, but this was quite normal; Ted would regularly have vomiting episodes which were very well managed by the symptom care team at Shooting Star Children’s Hospices. This time though he slipped into unconsciousness. The hospital told us they needed to intubate him and put him on life support, but he went into cardiac arrest during theatre.
They tried for 45 minutes to revive him. They tried everything they could. Our amazing and strong little boy died in hospital on 2nd March this year.
Without Shooting Star Children’s Hospices we don’t know what we would have done, they were there for us from the moment he died. Everything happened so quickly, so when Ted was finally moved to the hospice, it meant we had the time to say goodbye to him properly. Being at the hospice also meant our family and close friends had the time they needed to say goodbye to Ted, they needed that closure.
You can never prepare for the heartache of losing your child, but the support of the care team kept us going. They created hand casts and hand prints for us, which we’ll always treasure. Saying goodbye to your child is such a heart-breaking and unnatural thing to have to do, but in the hospice setting it’s beautiful really.
We will forever be grateful that we got to say goodbye to Ted at the place that felt like home, will you donate so families like ours also get the chance to say goodbye?
There will forever be a part of our family missing and Christmas will be incredibly sad this year, but we will celebrate all the years we had with Ted and the lovely memories of Christmas time at the hospice.
Shooting Star Children’s Hospices have been a part of our lives for six years and we know they’ll continue to be there for us – please consider donating, so they can continue to be there for families like ours in the future.
Amber and Arthur