This was a post I meant to publish a while ago, when I knew a lot more 'new' parents to little ones with Down Syndrome. But being as this week is the week that World Down Syndrome Day is celebrated, it seems as good a reason as any to get it out there now!
I have seen some amazing celebrations of individuals with DS already this week - for example, search the hashtags 'WDSD2024' and/or 'AssumeThatICan' to see the CoorDown / Canadian Down Syndrome campaign that has taken social media by storm.
As always, thank you for your support and willingness to learn with us and make the world a more understanding place for Ori & her friends.
We hope you all have a great day celebrating WDSD24 on Thursday 21st March!
The first year was hard. That is my summary. The end.
It's exhausting to even think about, haha!
This is probably a post that is more relevant for other new parents of little ones with DS, but may help provide some understanding for other readers here too.
The first year (for me anyway) wasn't reflective of how the next few years would be, for a number of reasons. Obviously you are trying to physically heal from a whole birth, however that happened for you. And normally healing involves rest, staying home, pyjamas, hot drinks and blankets... not rushed car journeys, cold pay and display car parks, hospital waiting rooms, queues of consultants and nurses, feeding plans or feeding tubes, watching for signs of heart failure, and maybe getting used to administering new medicines etc. So if those first few weeks and months feel hectic, give yourself some breathing space. They are hectic.
But it doesn't stay that way. You will find your new rhythm, and before long the hospital appointments will become more evenly spaced once the consultants feel everything is stable have the reassurance they need that everything that should have been picked up with your little one, has been.
During the first year, we saw the following quite regularly:
cardiologists for Ori's heart defects
nutritionists for her failure to grow
endocrinologists for her underactive thyroid
speech and language therapists to assess her
occupational therapists
her paediatrician to oversee her general growth and development
hearing teams for Ori's hearing loss (another diagnosis we got later on in the first year)
GPs
... the list goes on. But once the first year had passed, we got temporarily discharged from some of these teams, and the appointments with the other teams slowed down too. You also get better at judging how long different appointments will take, how long the car journey to the different hospitals takes, and maybe bouncing back emotionally from each appointment a bit more quickly – it becomes easier to organise a bit more 'life' around your hospital schedule.
Another thing I think you end up doing a lot of in the first year (which you don't need to give as much energy to later in your journey) is beginning to feel comfortable with your new role as an additional needs parent. Maybe it takes a while to settle on the terminology you feel comfortable with when referring to yourself, your child, and how your family looks now. Maybe you need to take a while to become familiar with the hospital environment – especially if like me, it was somewhere you completely avoided before and got very squeamish about. Maybe you need to work through how much support you have access to, and how much of that you feel comfortable taking now that you are on a path of parenting you weren't expecting. Maybe you need to get your head around keeping on top of the prescriptions and storing and administering medicines correctly (let alone the hospital letters and paperwork!). It was definitely an adjustment for me, but I am glad I spent time working through that part of my identity as now I am at peace with where I am at, and it costs me a lot less emotionally than it did before.
I also spent a lot of time during the first year finding a community I felt comfortable with. Instagram provided some great support as I was able to speak to other mums who held my hand virtually through the first year, giving advice on health queries I had and sharing useful tools with me. I also was fortunate enough to have access to some amazing additional needs groups locally. One was a stay and play group at my family's church which has a lovely sensory area, friendly volunteers, tea and cake, soft play, and local families with toddlers with a range of additional needs and differences in attendance. Another group was specifically for babies and toddlers with Down Syndrome – we did singing and signing, work on speaking exercises, and were given some really great information on DS topics. Whilst I can't fault the close friends I have, there is something amazing about being able to spend time with people who you don't have to explain yourself or your life to. It is such a relief to be able to have a coffee with mums who already know some of the little daily battles you face (let alone the big ones), like a toddler who has sensory issues, or a baby who goes through multiple muslins with each bottle due to low muscle tone, or how important that very delayed little wave is to us all... it just feels so comfortable. Hearing aids, funny feeding habits, hunting out specific footwear, completing DLA forms - none of this stuff is unusual for this group of mums, and I appreciate this so so much.
I think you also have to get used to some pretty full on questions during the first year, not all of which you even have the answers to yourself! Not that the questions necessarily stop... I think it may just take you the first year to grow a thick skin! Direct questions like “Will you have more children, or will they have DS too?” / “Are you sending her to special school?” / “Would you consider IVF to avoid 'this' happening again?” and so on and so forth. To be honest, I generally welcome questions as I believe that the more informed people are, the better. It can be seen as a real positive that people are interested and engaged enough in our situation to ask questions and want to get answers and be able to understand where we are coming from and what we may be facing. But in the first year I was still getting to grips with a lot of things myself and still felt quite vulnerable, so direct questions like this from people I wasn't particularly close to took a little while to adjust to - especially whilst I was still waiting on so many answers myself. Now I am in a much better position to happily answer them and not feel like I have received a punch to the stomach; people are just curious and want to understand more... Sometimes their wording is a little clumsy but on the whole I am OK with that.
There are still so many other things that make the first year hard for any mum, let alone a mum of a child with additional (and sometimes complex medical) needs. So before this seems like yet another negative post, again I just want to reassure you that if you are in this situation I understand where you are, and it does get easier. And if you know someone who is still in their first year, maybe this has shed some light on some of the big transitions they will be working through on top of all the other mum stuff.
You can see some of my update posts on some of the ways things became less hard work and how life has continued for us, but in the meantime this is a bit of a virtual hug and an acknowledgement that you are doing great to be getting through such an intense time... and to encourage you that it is mostly onwards and upwards once you have made it through the madness of the first year.
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