As 2018 draws to a close and we embark on a new year, I can’t help but look back at the year that was and reflect on the achievements, the highlights and the lowlights.
January started off with a bang with the birth of our little girl. Holly Rose entered this world on the 8th of January with a feistiness that has not left. She is a tough cookie and this characteristic I have no doubt stands her in good stead for her own life path as well as the fact that she has a sibling with extra needs. I have no doubt that she will be Luke’s biggest advocate and will fight for herself and for his cause with a passionate intensity.
The little relationship that has blossomed between our two children has been our biggest achievement to date. The squeals of delight that emanate from the both of them when they see each other after school is testament to this. Yes, Luke likes to ride Holly like a horse when she is crawling and yes she has been hit a few times by some flying plastic fruit, but Luke too has had to endure some hair pulling, learning to share his beloved books and learning to share the affection of his parents and grandparents.
A low light of the year which started in January was Holly’s colic which reared its ugly head and was the name of the game for the next (longest) three months. You can read all about our colic journey here but it honestly was one of the hardest, most heart breaking and longest period of both Jon and my lives.
January was also the month that our little boy started school. His bravery, courage and ability to adapt to change with his head held high floored us and he has blossomed in his new environment assisted by incredible teachers, a school which promotes inclusion and celebrates who Luke is and peers and their parents who are filled with love and acceptance for our little boy. We could not have been more chuffed with how Luke has grown and flourished in this environment.
February was a special month for our family as Jon’s sister and husband welcomed a very special, long awaited little boy into the world and added another grandchild and cousin into the mix.
March is always a special month for us as the 21st of March is World Down Syndrome Awareness Day and I penned a blog piece 21 Reasons in honour of our little blue eyed boy. If you missed it you can read it here. I love that these calendar days throughout the year are a constant reminder to celebrate our son and who he is.
Due to Luke’s compromised nasal and ear canals he has always suffered pretty badly with nasal and chest complications. After numerous paed and specialist consultations we made the decision to have grommets implanted, a sinus drain as well as an adenoid scrape in April. The pretty standard operation was harrowing for us. I cannot begin to imagine the anxiety and heartbreak that parents go through when their children are required to have major surgery.
In May Luke turned two and just a few days after a very special birthday celebration he started walking unassisted and with confidence. The achievement of this very big milestone immediately assisted in eliminating frustration that he was clearly feeling at not being mobile on his own two feet. This was the most evident at school where he could now participate in physical activities with self- assurance and be on an equal footing to his peers.
In June we took the decision to have sweat tests to eliminate cystic fibrosis, allergy tests to rule out any possible allergies that may be contributing to his chest issues and full blood counts to rule anything else out. Everything came back clear bar a slight immune deficiency. We had booster vaccines done in order to bolster his red blood cells and he was an absolute trooper though out it all.
Possibly Luke’s favourite people in all the world are his grandparents. In August when his school’s annual grandparents’ day was held, he could not have been more chuffed to have all of his favourite people in one room and all there just for him. I still bump into his peer’s grandparents at school and they tell me how his light shone particularly bright that day and how heart-warming and beautiful it was to witness.
September saw my first month of having flexi time after having resigned from my beloved position in retail after nine and a half years. It has been a period of adjustment, a period of finding my feet and a period of much needed quality time with my children and my husband.
The biggest adjustment for me has been the adjustment to what I have termed “broken time”. In a 9 – 5 position you are able to arrive at work and for 8 hours apply your mind to the tasks at hand. Having flexi time means that your time is constantly broken. Fitting in school pickup’s, OT sessions, doctor’s appointments, grocery shopping, mums and tots groups into the day in addition to work has been a lesson in multi tasking and time management.
Having that flexi time, being able to be there for my children, being able for them to actually get to know me and like me has been completely and utterly worth it and I am incredibly grateful that I am able to do so.
After months of planning October saw the launch of our #JUSTLIKEUSKIDS campaign, a campaign in honour of Down Syndrome Awareness Month and one of the biggest highlights of my year. We were quite literally blown away by the response to the campaign and the outpouring of love and support was humbling
Our aim was to showcase our beautiful children, in a beautiful setting, dressed in beautiful local clothing and shot by a talented local photographer and to shout from the rooftops about the worth of children born with Down Syndrome.
In addition Learning from Luke ran some incredible giveaways to giveback to all of you who have shown our family so much love and support throughout this journey and the generosity of the brands who jumped on board to be involved was awe inspiring.
I still have to pinch myself at the response and outpouring of love that was received, and this was felt even more so throughout the whole month of October, in addition I felt like I had found my calling in the creating of awareness, the bringing together of people and the organisation of sponsorship.
October also saw the launch of our “Darling Be Different” Tee’s and the rebranding of our little blog and instagram account. The people who assisted in making this happen went above and beyond and I am so incredibly grateful to you all.
November saw Jon and I hop onto a plane to the East and leave our kiddo’s in the capable hands of my parents for 12 days. I am a huge advocate of down time and nurturing your marriage through quality time just the two of you. I feel that one comes back restored, refreshed and as better parents. 12 days however was the longest time that we have ever left the kids, and boy oh boy did it feel long (I’m pretty sure it felt even longer for my mum(sorry mum)!) It was an incredibly special time for Jon and I and I also know that it was an incredible bonding time for the kids and their grandparents but seeing Luke run towards us at the airport arrivals was too much for my fragile heart.
And just like that we landed in December which saw the ending of Luke’s first year at school. A year in which he has blossomed, grown and become a very dear little boy. School has had a direct part to play in his development and it is through the assistance, guidance and love of his teachers and his peers that he has flourished.
December has been an incredibly special, busy and often tiring time for our family. We have spent quality time with family, spent too many hours to count at the beach and have loved spending time just the four of us, at home with one another.
Looking back at the year that was I cannot help but feel nostalgic. It was by far our hardest year yet. Holly’s colic was without doubt the biggest contributor to this and we felt robbed of enjoying the first few months of our second born’s life as a result. It was a year that saw seismic changes in our family and it was a year where new life emerged and many lives on earth were taken away.
And yet we survived, and not only did we survive but we stretched ourselves, we grew, we cried, we rejoiced and oh how we laughed. 2018 has most certainly been the year of growth and the year of finding our feet as individuals, as parents, as husband and wife and as a flourishing family of four.
Social media has often been given a bad rap for all of the negative that it can bring out in people, people often find courage in sitting behind a screen. I can however say without a shadow of a doubt that social media in all of its forms has been incredible to our family this year. The outpouring of love, support, friendship and encouragement has been awe inspiring. The open dialogue that has flowed and the friendships that have been formed, sometimes in the most unlikely of places, has restored my faith in the place of social media in our lives.
Thank you to each and everyone of you who have contributed in making this often difficult year, such a sweet one.
We cannot wait for 2019 and all that it has in store.