Today marks our very first World Down Syndrome Day!
What is World Down Syndrome Day?
World Down Syndrome day is a day in which people with down syndrome are celebrated across the world! It’s celebrated on the 21st day of the third month to symbolize the third copy of the 21st chromosome known as trisomy 21.
World Down syndrome day is celebrated across the globe to spread the awareness, support, and to generate the well-being of people with downs syndrome. Many activities and events are planned to help communities understand what down syndrome is and how down syndrome people play such a big part in our lives! It gives people with down syndrome a voice to educate others on how they are uniquely created.
It’s been over six months now since we found out on that hot late August afternoon that Angelina could possibly have down syndrome. I’ll never forget texting my husband Dennis as I sat in our van telling him the news. I was in denial. This could not happen and would not happen to us. I won’t be able to handle this. I am going to have a child that never leaves the nest. These were the selfish thoughts that circled in my mind and kept running over and over those first few weeks. I remember crying on the phone with Dennis while he was on his way home from work that evening. I thought my life had ended. I couldn’t breathe and everything that was once clear now seemed like a fog constantly surrounding my life.
As I sit here seven months later. The fog is starting to clear out and our new normal is starting to take focus. Our journey with down syndrome has just begun but my life hasn’t ended and I am pretty much certain we are SO excited to have a little girl by our side who we are going to call our “little Hope” for the rest of our days.
I still have my days were things are really tough, I don’t feel like facing anyone, anything, except my baby girls, a bathrobe, possibly a workout and a cup of coffee. I have my incredibly amazing days with Angelina. Days in which she meets a small milestone (I cry), when she smiles, laughs, being able to watch my incredible husband care and bond with her, our snuggles (oh she is so sweet), we can’t forget that crazy tongue :p and most importantly the time spent as a family together just loving on this little girl.
I know that healing takes time and it seems weird for me to tell you that I am grieving my beautiful baby girl. I am and that’s part of the process while I allow myself time and grace. None of this is normal and extremely far from what we expected on this journey through parenthood. One thing remains certain through the endless doctor appointments, administering of medications, therapy appointments and constant concern for Angelina’s development. God gives our souls rest and he is our fortress, rock and salvation when things seem to big for us to handle on our own shoulders. We realize we need to constantly keep handing it over to him and are reminded of that through this verse:
“My Soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken.” Psalm 62:1-2
The mundane things we used to do as a family seem so much more meaningful. Angelina you have made us appreciate the simple things in life. Our Friday night homemade pizza night, a movie with the girls, and ice cream. How I long for this evening in which we can all relax together and hangout as a family. My girls, oh my triple A’s! Ava your passion for living and how you have to be alongside me every step of the day (sometimes irritating) but we wouldn’t want you any other way. Amelia the perfect middle child who dances to her own tune, brings us constant humor during the really tough days and goes with the flow. God knew the perfect birth order for our family of three girls.
My 6am and 9am coffee date with you little girl is the best. I never know if I am going to get the all star bottle drinker or the tongue slashing wild and crazy bottle drinker. This is usually accompanied by a quick workout in between and two other little girls running around the house. Watching your facial expressions while you drink your bottle and your sisters fight right by your ear cracks me up.The way you study my face and raise your little eye brows melts my heart on a constant basis. I wish I really knew what you were thinking during those crazy sister fights and as you study our faces daily.
Little girl I have such a driving force in me during this season to spread awareness about down syndrome. To stand up and advocate. To share our journey with down syndrome to help the next person who is blessed with a down syndrome child. To help mothers with special needs children find time to take care for themselves through both spritiual and physical fitness to be able to better care for their children and families.
Angelina you are amazing and I thank God each morning for you. I plan on tracking and writing about your journey each month here on the live fit website. The ups and downs. Your milestones and what it took to get you to achieve them. I will write how we will so diligently try our hardest to live out our race that Christ Jesus has set before us. You have left us learning what it truly means to:
“Rejoice in hope, be patient in tribulation, and to continue steadfast in prayer.” Romans 12:12
My prayer today is for all the mothers who sit in a hospital NICU room with their child who has recently been diagnosed with Down Syndrome. My heart aches for you, those three weeks as I sat next to Angelina’s bedside my mind just spun in a million different directions. I pray that they can enjoy the simple mundane things and the moment to moment things in life that are gifted to us by our creator.
Our little Hope we look forward to celebrating World Down Syndrome Day for many countless years with you. Happy 1st World Down Syndrome Day.