Six years on, this is what I would go back and tell myself the day my baby was born with Down Syndrome
Today marks World Down Syndrome Day.
When their little boy was born with Down Syndrome, Anne Bente Berentsen Carroll and her husband Stephen were completely in shock. This was not part of the plan. This wasn't what was meant to happen.
"When I was pregnant with Jamie I actually had several scans during the pregnancy, but none of them picked up that he had Down Syndrome, so we were not prepared at all for what was coming.," Anne Bente explains. "When he was born and we were told he had Down Syndrome, we both just started crying. I think we were just so worried for Jamie’s future, and all we could think about was what he would not be able to do."
The couple, who live in Newbridge, Kildare, were already parents to three-year-old Emily at the time, and Anne Bente admits the minutes and hours after her little boy's birth were so very different to those following the birth of her daughter.
"I remember not being able to look at him for a while and I don’t even remember them taking him off me to do tests. I realise this might sound like I was a terrible mother, but after going through the physical and emotional stress that giving birth is and then finding out that the baby you had been expecting and dreamed of and waited for had a condition, I was just in shock. I think I was worried I couldn't love him as much as I should, as much as I loved my other child."
But love, of course, is a powerful force.
"After a few hours, when I held my beautiful baby boy in my arms feeding him I just felt such a strong love for him and I felt the bond that I had worried I would not feel. He was ours, and we loved him so, so much."
"Looking back, the cliché "if I'd only known then what I know now…" resonates more than I would have thought possible," Anne Bente explains.
"If I could go back in time and relive those first few moments, even weeks and month, there are so many things I would have wanted to tell myself. I would have replaced so much fear and anxiety and grief with other feelings, happier, more hopeful and calmer feelings. This so wasn't the end of the world I first feared it would be. And I am so excited for the rest of Jamie's story, the rest of our story."
And so, in her own beautiful words, here are the truths and lessons Anne Bente would go back and tell herself on that day little Jamie was born, almost six years ago:
Just enjoy your baby
This might just be the most important thing I would keep reminding myself: Enjoy your baby. Seriously; that baby phase – it passes so quickly, so I would tell myself to just make sure I enjoy it for all its worth.
We were lucky that Jamie did not have major heart problems or other complications, which can be the case with some babies with Down Syndrome. When he was born, we were told that Jamie had three small holes in his heart, however, these were small ones, and closed up without any medical intervention within a year.
Don't get me wrong, I still worried a lot about Jamie’s future and health, and some of these concerns were obviously both natural and necessary as he did have a lot of respiratory issues and there were a lot of appointments. But looking back, I would love to have been able to remind myself how very important it is to take a frequent step back from the worries and just enjoy the time with him when he was a newborn and a baby even more. To just stop and smell that lovely baby smell and take it all in – because, as is the case with all babies, you just don’t get that time back again.
Don’t be afraid to ask for help
Oh, how we all just need to get better at simply asking for help when we need it...
A few weeks after Jamie was born, I found myself being overwhelmed by the number of forms I had to fill out. As in, on top of trying to juggle my newborn and my very active three-year-old. Between medical card applications, Domiciliary Allowance and what felt like a million other papers and applications, I just felt completely lost. These forms are quite long and detailed, and when you have days where your emotions a little all over the place, even looking at these forms can make you cry. Trust me.
I was put off filling them out as I just felt it was too much to deal with at that time, and I remember talking to a nurse one day at our local health station, and when she asked had I filled in the forms, I just broke down in tears. After I explained how I found it all very overwhelming, especially right now, she told me to contact the social worker where I lived as they could help fill them out. I took her advice and met with the social worker who was so helpful, and I just wish I had known to ask for help earlier.
It was the same when it came down to things like the housework and shopping and other little everyday things. I think, despite having days where I felt worried and scared about Jamie and his health and future, I still had this idea that I needed to be on top over everything, from having a spotless house to being organised with everything. So many of my friends and family let me know that they were there, and ready to help, and I wish I could go back and tell myself that it is OK to accept help. Both for myself, because I don't need to be super-woman, accepting help is not a weakness. And also for those around us, who loved us and more than anything wanted to lend a hand.
Try not to compare your child
When I had Jamie, two of my closest friends had only just given birth to their babies weeks before, and naturally, being on maternity leave at the same time, we spent a lot of time together.
Within weeks, their babies started meeting typical developmental milestones, and as much as I knew it probably would take a lot longer for children with Down Syndrome to reach these same milestones, I was not really emotionally prepared for this and found it very hard.
I remember in particular one day, when, suddenly, the other two children were able to sit up on the playmat and play with toys, but Jamie was still just able to lay flat down on his back beside them. It broke my heart. I think, to an extent, comparison is only natural, and often we do it almost automatically, but if I was able to go back and tell myself about these feelings, I would remind myself not to compare – as every child is different, Down Syndrome or not.
Connect with other people who have children with Down Syndrome
It really is true that people do not fully understand what you are going through unless they are in the same situation and if I could have given my new-mum self some important advice, it would have been to connect with other parents of children with Down Syndrome sooner than I did. Our friends were a great support, of course, but I still had days or situations where I felt a bit alone – in that they could not really relate to or understand certain things we were going through, not that we would expect them to, of course.
When Jamie was three months old, I started talking to a lady in Costa Coffee one morning, who also had a son with Down Syndrome, and from her, I learned about different Facebook groups I could join. For instance, one I did join upon hearing about it, was the early years' group Down Syndrome Ireland was running, which has lots of other important and relevant information. Learning about this from that random coffee shop meeting sort of opened up our world to Down Syndrome, and the fact that there are so many other parents just like us out there. And having this whole new 'community' of parents who were in the same boat as ourselves, it really felt like a safety net.
The Facebook groups are so helpful as you can ask for advice from people who might have more experience as their children are older and they have gone through exactly what you are going through. And the smaller groups are almost like a little family. Jamie joined the early years' group in the Kildare branch of Down Syndrome Ireland when he was just six months old, and being able to meet up with other children with Down Syndrome and their parents, it was truly amazing.
In the group, we would, for instance, have circle time with the children where we would be singing songs and playing, and it was just such a great platform to meet other parents who were going through the same as you, and have someone to both vent to and turn to for questions and worries. And the ladies who ran the group were just amazing too.
Try not to google everything
Oh, Google – every mum's best friend – and worst enemy.
I know these days, googling too much is something we are all fairly guilty of, but now, looking back, I wish I had done less of it when Jamie was a baby than I did.
During those early weeks and even years, I would google everything there was to know about Down Syndrome to a point where it almost became an obsession and then I would worry and fret about some of the information that I found.
Now, in hindsight, I am able to see more clearly how unhealthy and unconstructive all this information overload can be, and I would tell myself to stop obsessing, take one day at the time and not to worry too much about the future.
People will have a lot of opinions about your child
Sometimes it feels like when you have a child with Down Syndrome, people just feel they have a right to comment on our child and voice their opinions on EVERYTHING. In all honesty, I have had people stop me on the street and say things like: “Oh you poor thing – it must be so hard for you having a child like that”.
And I know deep down that while most people mean well, and might just not be able to articulate this in a nice manner, it still hurts me to hear things like this – as it would every parent.
If I could, I would go back and maybe give myself a little heads-up about all this, so that I would feel more prepared to tackle other people's comments and opinions. I would also tell myself to just not focus on this – and to not let it get me down.
Typical milestones might take longer – but they will happen
Jamie had very low muscle tone and therefore it took him very long to reach typical milestones such as sitting and walking (he never crawled). As hard as it was watching all my friends’ younger children “overtake” Jamie, the reality is that he did reach the milestones eventually – and I was not prepared for just how amazing this feeling would be.
Don't get me wrong, we have a daughter who is three and a half years older than Jamie, and I remember how excited we were when she reached milestones too. But it was nothing compared to the absolute joy, pride and relief we felt when Jamie finally reached these milestones and it still is.
I think I would have liked to reassure myself when he was a baby that this would happen for him and for us, and that just because something takes a little longer, it doesn't make it wrong.
Because there is a lot more work involved, both for yourself as well as for your child with Down Syndrome, reaching these milestones make you feel such a sense of achievement. I would go back and tell myself this very feeling will be worth all the worries and hard work. So worth it.
It will be hard at times, but the good times – oh, how they will outweigh the bad
I think if any of us could go back to our very first day as parents, we would tell ourselves some fairly harsh truths that we have learned the hard now, years into this whole parenting thing. I think we would also remind ourselves to give ourselves some credit – and reassure our younger selves that no matter how much you think you are messing up, you are still doing an amazing job.
I know I would have told my new mum self all this.
I am not going to lie - being Jamie's mum – it is not always easy, but let's be honest, life with any child has its ups and downs, whether they have Down Syndrome or not. Parenting is amazing, but it is also really, really hard from time to time. We all come to know that.
Jamie is non-verbal and so communication is a big struggle for us. However, who knows what the future holds. All I know now – and what I would tell myself to hold onto – is that Jamie doesn’t stop surprising us. And his little giggle is the cutest thing ever. And he melts our hearts every day.
He might not always be very affectionate, but then when he climbs up on my knee and gives me a cuddle it is just that extra bit special and it just makes everything worth it.
Jamie is now six years old and is a lovely little boy who just keeps on amazing us. More than anything, he has taught us about patience, love, understanding and acceptance. We will be forever grateful for Jamie completing our little family and we can’t wait for all the adventures he will take us on.