Well today is a momentous day, we see our twins, our baby boys turn 21. In any family that is a celebration but for us it’s a milestone we never ever expected to reach.
I wanted to share our journey with you as I know speaking out can help so many parents going through the same situation as us. So where did it all begin?
21 years ago today our boys made a very early appearance into this world at 30 weeks into my pregnancy, so much changed in 24 hours, our whole life changed in that time and things would never be the same. All the hopes, dreams and plans we had for our little family were crushed, life was sucked from us and the hardest 21 years you could imagine was the future ahead of us.
So the boys were born by emergency cesarean on the 8th February 1997 at 4.27pm & 4.28pm. We didn’t get to see them as they were whisked away immediately to NICU. We waited for 4 hours to hear any news of our boys and eventually a nurse came to see us with a little polaroid of the twins, this is the only photo we have of them where they are both normal (but very small) babies with no damage and no disabilities.
Kev was allowed to see them briefly late that evening and his face on the return to me on the ward is as clear today as it was then, he didn’t need to tell me anything I just knew things were’t good. Jake was doing ok and stable but James was very poorly, his lungs hadn’t matured fully and he was struggling breathing, so much so he was put onto a life support machine. We were told to expect the worse, that he was unlikely to make it through the night, all we could do was wait. At this stage I still hadn’t seen the boys.
The one memory I have from that evening is the feeling of aloneless, Kev was not allowed to stay at the hospital so I was shoved in a side room on the maternity ward away from all the mothers who had their newborns with them. I wonder if the nurses thought I couldn’t hear the cries from all the newborns, the excited family visiting new bundles of joys. It was so painful I can’t tell you.
James made it through the first night and I finally got to see my boys, the feeling is hard to describe I just felt numb, like I was looking in on someones else’s life or having a very bad dream, it felt so unreal. After all naively I thought these things happen to other people not us.
Over night James had deteriorated and the level of life support had to be turned up to the maximum pressures. This caused James to suffer from 2 massive brain haemorrhages, his little brain just could’t take the pressure. It was this day that we encountered the room of doom, the room parents were led to with a doctor and nurse in tow and some very serious faces. Its a room we visited many times and a room I grew to hate. On this day we were given the worse prognosis for James, the doctor as always started with the positive that Jake was doing well and holding his own but poor James had bled massively into the brain and it was unlikely he would survive and if he did his disabilities would be so severe that he would lead life in a vegetative non responsive state.
The first few days showed no improvement and again during a meeting in the room of doom it was suggested we go home that night and consider withdrawing life support. That night was rock bottom pretty much as low as I thought we could reach. Without going into details as its a hard read and was such a traumatic time for us James remained on life support.
He stayed on life support for 3 weeks and in this time fought for survival with all his might, he encountered infections, seizures, liver & kidney complications, suspected meningitis the list went on, everyday seemed to bring a new problem.
One of the hardest parts of having a baby in NICU is going home without them every night to a quiet empty house, seeing the nursery and cribs waiting for them, never knowing if both would come home or just one of them? After 3 months and a few of his own health problems Jake came home, it was an exciting day although bittersweet as James was still far too poorly to come home, the guilt at leaving him behind was immeasurable.
Myself, Kev and Jake spent time with James everyday at the hospital and despite his prognosis he was hanging in there, it was obvious he was never going to get better so very slowly the hospital staff started throwing around phrases like ‘ palliative care’ ‘bringing him home for his short life’ and we threw ourselves into the medical training it would require to bring him home with us, we needed training in oxygen, NGT tube feeding, paediatric resuscitation and to use the SAT’s monitor at home. It was a lot for any parent to take on but he’d fought this far to be here we needed to give him the care and love he deserved.
Every prognosis the doctors gave us ‘he won’t see his first birthday’ ‘he won’t make 5’ ‘he’ll never be a teenager’ ‘he won’t reach adulthood’ he smashed through, I won’t lie it’s been the hardest 21 years imaginable, he has been very ill and we thought we’d lose him on a few occasions. All the time there was no hiding from his disabilities, having Jake gave us a direct comparison, whilst Jake thrived into a wonderful young man, one we are so proud of with a bright future, for James time stands still, he is still a baby, he can’t walk, talk, stand, he is fed through a tube, suffers unstable epilepsy, is autistic and mentally at the age of a 9 month old.
James’ care took its toll on us and 2 years ago he moved into a bungalow with another lad, where they are supported with specialised carers 24/7, it meant for the first time in 19 years we slept and could focus on our other children, being a sibling of a disabled child is hard. He lives a life that helps him reach his full potential, he has good days and bad days but is such an inspiration, he’s in pain a lot of the time, he suffers multiple seizures daily and still manages a smile. He puts life into perspective so much, he has a strength like no other, how he is still here I don’t know, we don’t know what his future holds and not a day goes by where we don’t wonder if today is his last day, it’s an unspoken thing but we all know it, his care team call us and always start with ‘James is OK’.
We try not to plan too much in the future, one lesson we’ve learn’t is things get thrown at you along the way and you just have to get on with the hand you are dealt. Who knows whether the decisions we made along the way were right? on good days James’ has a quality of life and shows enjoyment but the bad days are very bad and we wonder how long his fight will be.
I couldn’t of done it without Kev by my side, James’ care has bought us closer together and to our families and friends who have propped us up when we’ve been at our lowest, and to Jake and our amazing daughter Gabby who take life in their stride and just get on and deal with an unconventional family life.
So to the most amazing sons, who are our world.
HAPPY 21ST BIRTHDAY JAMES & JAKE
If anyone is struggling in a similar situation to ours, reach out and talk to someone and feel free to contact us.