2022

What did this year look like for a 4 year old with Down Syndrome?

I have shared before (in my diagnosis story post) that one thing I struggled with when we got Oriana’s Down Syndrome diagnosis was what life may look like for us after that. I had NO idea what our future would include, and the few thoughts I did have were quite negative and fearful. As someone who prefers definite plans and outcomes, this sudden change in what I imagined our future would look like was very hard for me to come to terms with. I remember explaining this to the health visitor in the first couple of weeks, who said “but no parent knows any of those things about their child”... which is quite true, and gave me some perspective. But I guess the difference with a child born with a disability is that you know there is a greater chance of some things (hospital visits, operations, therapy, medication) being in your future than if you had a typical child. However since that point 5 years ago I have been continually surprised by the things we end up experiencing together, by how fun life with Oriana is, and by how much her diagnosis really plays a part (much less than I initially thought!) in what we can/can’t do. I also realise it isn’t just me who had those questions of ‘what does life with DS look like?’, and that other parents of newborns with this diagnosis may also want some of these blanks filling in, as well as other parents just looking to educate themselves and their own children. Previously I have done some ‘Day in the Life’ videos (see this post and this post), which are now a couple of years old.. So this time I thought I would do a quick summary of highlights from our last year, as its been a big one for Ori!!!

March - After a more quiet January and February fighting off colds, catching up after Christmas and getting used to being back in routine… we got a little rescue dog in March! A.k.a. Oriana’s bestest, furriest friend! The dog fit right in straight away and Ori can often be found sharing her favourite toys and accessories with her, snuggling her, playing with her, or colouring her in (yeh, I know, not ideal).

April - Some lovely church services and activities, and a big Easter egg hunt around Nannie & Pops’ garden with her cousins. The weather was lovely, and Ori found this so exciting. We are a big family, & there is nothing Oriana loves more than to be surrounded by them.

June - After a lovely bank holiday and a family birthday in May, Ori celebrated the Queen’s jubilee with an afternoon tea with her great Aunt and Nannie. Oriana didn’t really understand much about the Queen but was happy to party and eat! June was also the month to go on fairground rides with friends at a family fun day. Turns out she likes the rides when they are still, less happy with them when they are moving!

July - July saw the last day at her amazing specialist pre-school, Menphys. Oriana loved it there so much, and the staff were amazing. She still asks for them, even now. We met some lovely parents and children there too who we were sad to say goodbye to.

As soon as the summer holidays started, we went on a big family camping trip. Oriana loves camping in the tent, and loved time spent with her cousins, aunts, uncles and grandparents too.

Shortly after this, Oriana did her photoshoot for Zara - this was an amazing opportunity and she really enjoyed her time with the Zara team. For more information on this, read this post.

Finally, at the end of July we ended up with a surprising change to our circumstances - we started fostering and Oriana did a great job at sharing her home and toys with a stranger; she adjusted to such a big change like a champion!

August - after a more chilled month adjusting to the changes in our family life, we spent the August bank holiday with family in Stratford on Avon. Playing on the park, dog walking along the Avon, and a McDonalds picnic near the swans.

September - Oriana started school!! She goes to a small mainstream school which she absolutely loves! It took the first half of the term to get used to for her, but she has now found her feet and made some lovely friends.

October - We spent half term staying in the Lake District. Lots of walks, splashing in lakes, hot chocolates and pub dinners, and catching up on the first half term of school. This was also the month that Oriana turned 5!

November - this was full of illnesses for little Oriana. A cold turned into a chest infection, the chest infection needed antibiotics, the antibiotics upset her stomach, she then got another illness from our foster child, and we spent a lot of time off school. Urgh.

December - This month saw Oriana’s first nativity (cutest angel I’ve ever seen - I also felt like I was laughing a lot more than the other parents; Ori had some questionable dance moves) as well as lots of fun festive activities at church and school.

She also had her long-awaited sleep study, confirming our suspicions of sleep apnea (she has had symptoms since she was a new born but we struggled to get any support) which resulted in her being given a CPAP machine for bedtime. After some cancellations, Oriana also eventually got her Ear Nose & Throat appointment - they advised that she will need her tonsils and adenoids out in the new year, so we will wait for further information on that.

In amongst all the above, we enjoyed some lovely Down Syndrome group meet ups this year - farm parks, stay and play sessions, soft play. There were also lots of family birthday parties for cousins, aunts, uncles, grand parents, and great grandparents! Oriana was almost always busy, surrounded by people who loved her, and having fun.

We look forward to see what 2023 will bring, and hope you have a good new year too!