I feel like there have been too many young lives taken in the Down syndrome community. When a child dies, we all grieve with the family, we start fundraisers and we attend funerals. We personalize it. We allow ourselves to go to that place, where we think that it will be our child next. Some days, it becomes so overwhelming that we don’t want to send our children to school or to birthday parties or attend outings with friends. It can become debilitating for so many of us moms. Who do we turn to? We band together and we grieve together and we turn to social media for support at 2:00am, we text a friend who gets it, we cry, we try to stand tall, all while feeling so defeated inside. I have sat at her bedside, watching her breathe, counting the breaths that she takes, hooking her finger up to an oximeter and staring at the numbers, feeling myself hold my own breath, wishing I could take her place. I have gone to sleep crying, wishing that she could tell me what’s wrong, what she needs. We have spent time in the hospital. We have ridden in an ambulance. We have had to forgo birthday parties, outings and vacations. We have had to watch our child being put to sleep, as she stares up at you, wondering what is going on. We have had to figure out which investments will be most beneficial for Adele for when she is an adult and how can we ensure that she has the means to be able to support herself. We have had to work part time, so that we can get her to appointments and be home for therapy sessions. We have spent hours researching which developmental toys are the best, which vitamins will boost her immune system, which foods are best for children who choke, which walker, which dentist, which doctor, which school, which sports team, which diaper….the lists are endless. The worry is endless. I have wondered – what would my life be like if I didn’t have a child with Down syndrome? What would life be like if we didn’t have Adele?
Recently, when Adele was sick with a cold, I asked James is he was happy that we had Adele? Such a bold question, right? Without hesitation, he said “Absolutely.”
He rolled over, looked at me with fear in his eyes and asked if I was happy.
I paused for a brief moment.
“Without a doubt……I just can’t stand some things that come along with Down syndrome. I wish she could tell me what she needs. I wish she could tell me what she wants, what she would like to play with, where she wants to go. I wish that I didn’t worry about her health. I wish it was all a bit easier for us and for her and for her sister.”
This brings me back to what would my life be like without my child with Down syndrome.
My community. An amazing community, who supports me, who lifts me up and who understands.
Strength. This journey has given me strength to use my voice, to advocate and to do things that I didn’t think were possible. The strength to get through the rough days. The strength to see that I have the tools to cope with tragedy and loss.
Slow down and enjoy the ride. Before having a child with Down syndrome, life was rushed and I was in a hurry to get things done. Now, it’s about enjoying moments, sitting on the couch and snuggling. It’s about waiting and watching and allowing life to happen.
Joy. I laugh constantly with Adele. Her laugh is infectious. She’s genuine and is the epitome of joy, light and love.
Unconditional love. Adele loves with her whole heart. She will make you feel like you are the only person that matters and she will do this with everybody she meets.
Judgment. Adele has taught us to not judge others, but instead to take the time to learn about another person’s journey. Be open-minded.
Adele’s Over the Rainbow Baskets. Over 100 congratulation baskets have been given to very deserving families who have a baby born with Down syndrome.
The fears are big and at times, too heavy. The worry takes over all thoughts, and we, as parents to a child with Down syndrome, feel defeated and lost. I have started to focus more on the present and soaking in the moments that are right in front of me. When there is a death in our community, I say a prayer for the family and grieve with them. I also look at Adele and am grateful for that very moment. My life changed dramatically after having Adele. In the past year, I have started EMDR so that I can heal and be the best mom and wife that I can be. I realized that my fear of illness was taking over my days and that I needed to reach out and ask for help.
Although Down syndrome has added so much beauty and happiness to my life, it has changed me. I let those in, who want to be a part of our lives. I let those in, who genuinely care about my family and who understand.
When Adele gets sick, this is when I know who wants to be in my circle. Those who give a shit about us. The neighbours asked if they could make meals for our family, friends offered to drive Brinley to school when we were stuck, friends checked in making sure that I was ok. Those are my people.
To my friends in the Down syndrome community, take care of you. I get it.
To my friends who have a medically complex child. I will always be here for you.
To my friends, check in with those who need it. Ask them how they are doing. They need you.