The journey I am now on with my three children have brought me in contact with amazing mums, dads, and children. Every family I meet are on a similar journey but each one is different. It can be different for lots of varied reasons. Not all of them have a diagnosis of Down Syndrome. There are many parents out there raising their children who have genetic disorders and are a lot sicker than Ailbe. One friend I know has a child who has a genetic disorder so rare that she is the only person in the world with this.
The one key factor that we all share is that we have a child who has special/additional needs. I have said many times before that this journey has brought me a new family that I never knew existed. A community that is there at your darkest moments, who understand what you are experiencing. They don’t always have the answer you need or the solution, but they provide you with something that is priceless..support.
I admire each and every one of these parents I have met. They have a daily battle that most are lucky enough not to experience. Their strength, humour, and ability to still have time for others is amazing.
Luckily, Ailbe does quite well with his physical health.
During those first 10 months when Ailbe had frequent admissions. I spent a lot of time on both the Childrens ward and their assessment unit. It was on one of those trips to the assessment unit I met a family with a little boy. Its not the most pleasant place to be as you are there with a sick child with all the fears and worries that are attached to that. Ailbe was approximately 5 months old at the time and they were sat next to me. Usually I keep to myself and just smile at other families maintaining a safe distance from them. Not wanting to have all the questions that came with it like “why are you here” “did you know he had DS” or even worse silence after you say your child has DS.
When I looked at the parents sat next to me I felt drawn to them. I wasn’t 100% sure but I was confident enough to initiate conversation and ask them if their son had T21. I used the T21 term as I knew that only medical professionals and other families like me would likely know what it was. Almost like a code word without telling the whole world. We got talking during that brief meeting. Her name was Jenny and her son was called Eli, he was 4 weeks younger than Ailbe and had gone through a tougher time physically. I offered my contact details and spoke to Jenny about our local support group and how they should come along.
Over the next couple of months we would try and meet up but usually one of the boys was sick or they had hospital appointments. We kept in contact and would be a source of support for each other. We were both excited, as they would soon be starting at the physio group together. We had planned to go for coffee afterwards with “our boys”.
Coming home one day I got a message from a mutual friend in our community asking if I had seen a post on FB? Out of nowhere was a post from Jenny informing everyone that her beautiful Eli had gained his angel wings at 6 months old. I was in total shock, I had only been chatting to her the week before making plans to meet up with “our boys” the following week.
This hit me quite hard. I am not gifted enough to explain the range of emotions that I have gone through. Its not my story to share about Eli. I have had Jennys permission to talk about the loss of Eli and how it impacted on myself. Still I worry; who am I to even try and broach this subject. What do I know about loosing a child. Thankfully, I have minimal experience of this with the exception of a miscarriage which was in its early days. Sadly, since having Ailbe I have heard so many stories of our beautiful little ones gaining their wings. In our online community we have a “wave of light” where everyone can share an image of light/candles/flames to honour the passing of a beautiful soul. I would like to say that it doesn’t happen often but I can’t.
The strength, courage, humility, love and resilience that my friend, Jenny, has shown is astounding. When I talk about the family I always talk about Jenny, yet there was a dad too and his name is Dave. So forgive me if I just mention the mum. When they first lost Eli I reached out. Not because I wanted to know details but I wanted them to know that I was still here for them even if they didn’t want to know us anymore. I would completely respect their decision.
It has been just over a year since Jenny & Dave lost Eli, and Ailbe lost his friend. It’s no consolation to them but I think about them all the time. I think about the friendship that should have been for “our boys”. Every time I meet up with the girls from the support group I think of Jenny & Eli. A sadness I feel that they are not there too, sharing and celebrating milestones. We are still in contact but I am respectful and have given Jenny the time and space they have needed.
I recently met with Jenny. I experienced a range of emotions, mostly I was nervous. I wanted to cry. Not because I felt sorry for Jenny, but for the strength that she wore, like a warrior with her shield. I don’t know if I could be that strong.
Sadly, this is not an isolated story. As every parent who has lost a child knows. I have three friends whose children have gained their angel wings. This doesn’t include miscarriage because if it did I expect it would be most women I meet. When my best friend lost her daughter Hannah, she was 3 weeks old, premature, and beautiful. This was many many years ago and thanks to Nic I knew that the worst thing I could do was be awkward talking about the child they had held for a short while. Or even worse not talking about Eli at all.
Nic & I still talk about Hannah. Hannah is a part of my best friend, her journey and we remember Hannah when we chat. We celebrate her short but beautiful life and everything that surrounded that time. We talk about how old Hannah would be today, or what she might be doing.
Death and grief is not an area I feel comfortable with but that doesn’t mean I should avoid talking about it. So many parents are out there every day without their child. Going through a grieving process we know nothing about. I am thankful I don’t have that experience. I don’t want it. Nobody does.
After Ailbe lost his friend I immediately went to the GP to get Ailbe checked out even though he was fine. Not one Doctor judged me about this anxiety. They all were so kind and had complete understanding. Some of those doctors knew Eli and his family. They too were sad and without breaking any confidentiality they spoke about the impact his tragic loss had on them. Sometimes we forget that even though its their job it still affects and stays with them when a child dies.
I have tried to write about this topic for quite a long time and feel that I can’t do it justice. So forgive me if I have been a bit clumsy at times. It is important to me that I talk about Eli, Hannah, and all the other babies and children who gained their angel wings to soon.
To all my friends and all the parents whom I have not met, you are amazing.
Jenny, thank you for keeping me a part of your life and your journey 💖
Nic…mi mejor amiga 😘
#childloss #grievingparents #wcat #sands #dontscreenusout #downsydromeawareness #dsa #wouldntchangeathing #prembaby