by Lori Slenk
God blessed us with a beautiful gift on March 25, 2004. This was the day that we welcomed our 4th child, Anna Faith, into our family. Quite honestly, it was also one of the most difficult days of our lives. Following a typical pregnancy, we learned shortly after her birth that Anna had Down syndrome and some significant health issues. We knew very little about this extra chromosome, nor did we know anyone else who had Down syndrome. Oh, how this has changed! (And oh, are we ever grateful!) Because of Anna, we have met so many amazing people, families, physicians, therapists, teachers, and friends.
The first couple years of Anna’s life were difficult. As I reflect on it now, it is a blur of doctor’s visits, hospital stays, pneumonia, surgeries (open heart and other smaller ones), significant feeding issues, therapy appointments, 24/7 attachment to oxygen, feeding pump dependence, and a little girl who cried often because she rarely felt well. There was a time when Anna was fighting for her life, the doctors were doing all they could for her, and all we could do for her was pray. We thank God for miracles, and we know Anna’s life is just that…a miracle. All of this was happening as we tried to maintain normal life for our other kids. I had quit my teaching job about a year earlier, and I was so grateful for the opportunity to be home with our kids during this busy and stressful time. We also had an army of family, friends, and a church community that jumped in to help. What a blessing this was!
Easier days were ahead as Anna’s health improved and she began to grow and develop. Eating continued to be the biggest challenge, and something we will never take for granted. At age 5, Anna was well enough to enter the Intensive Feeding Program at Helen DeVos Children’s Hospital. This amazing program changed Anna’s life (and mine!). In 11 weeks, Anna went from being completely tube fed to eating pureed foods by mouth. My blender became my most used kitchen appliance. At age 10, Anna was admitted back into this Intensive Feeding Program.
This time she learned how to eat soft foods. I could put my blender away for a while! This is where Anna remains today. She would still prefer not to eat anything during the day, but now she willingly agrees to eat the 4 meals (of soft foods) that we place before her every day. For this, we are grateful.
Anna did 3 years of preschool at Zeeland Christian. She loved playing, singing, and being with friends. We fell in love with the school, the people, and everything they had to offer Anna. She continued there through 8th grade. Now Anna is a freshman at Holland Christian High School. Honestly, she made the transition to high school better than I did! She LOVES school (always has), and can’t wait to go back each day. Her favorite classes are choir and unified PE. Her days are a blend of appropriate gen. ed classes (art, PE, Bible, choir) and time spent in the support services room learning life skills and appropriate academics. A couple days a week she goes to a job in the community for an hour or so (with a job coach). This semester she is working at Community Action House in Holland. Most of all, Anna loves to be with her friends. I smile as I watch her and her older brother drive off to high school together in the morning. She sits in the passenger seat of his truck, grinning at me (and showing off the braces on her teeth), waving excitedly, and acting like such a big shot. I can’t believe she is almost 16 already! This week I got a text from her dear friend asking if Anna would want to join her and her friends at the school Winterfest Dance next weekend. Tears of joy from this momma again. We are so thankful she enjoys school and being part of these social activities.
School is not the only thing that makes Anna happy these days. We live in an amazing community that offers so many fun opportunities for Anna. She loves going to Compassionate Heart Ministries and hanging with friends. Anna also plays unified basketball, attends Young Life Capernaum (for those with special needs), does church youth group, and is part of a uniquely gifted dance class. She recently attended an adaptive tennis class and had a blast. Last semester Anna loved the opportunity to do some therapeutic horse riding. Anna loves all animals, but her 2 favorites are deer and dogs. In fact, her favorite gift would be a deer or a dog magazine! She loves cutting out of magazines and taping the pictures to scrapbooks or designated walls. Anna also enjoys listening to music (and singing along!), running errands (favorites are to Menards, Aldi, and the car wash), going to grandpa and grandma’s cottage on summer weekends (and tubing really fast, of course), spending time with cousins, watching dog videos, playing UNO, coloring pictures, visiting the library, sleeping in on Saturdays, going to the zoo, taking our dog for walks, riding roller coasters, and riding on Grandpa’s John Deere Gator through the woods behind his house (always looking for deer!). Anna enjoys life!
Some things are difficult for Anna. I will admit that there are times when I still have grieving moments, as I see her struggle with things or when I worry about the future. Many people have a hard time understanding Anna, letters and numbers continue to be so hard to learn, eating is not enjoyable for her, development is slow, something simple like having her hair brushed causes stress and tears, and she may ask the same question hundreds of times. Honestly though, one of the coolest things has been the opportunity to watch development in slow motion. Human development is truly a miracle. With Anna, we have been able to celebrate all of the small steps of progress along the way. And oh, do we ever celebrate!
We have 5 children now. Emily and Erica (22 year old twins), Matthew (17), Anna (15), and Addison (9). Life is busy and fun, and we thank God for each of them. We would all agree that having Anna as part of our family has been an incredible blessing. She continues to teach us to laugh more, to slow down, to appreciate the little things, to not be concerned about what others think of us, to live in the moment, to not hold a grudge, to find joy in simple pleasures, to not judge someone based on appearance or ability, to be more patient, to not be jealous, to love unconditionally, and to not take things for granted. Anna approaches life with joy and brings a smile to those that she meets. I want to be more like Anna!
We have enjoyed being part of the DSAWM. A special thank you to all of the board members, staff, and volunteers that make this organization successful. It is a beautiful thing to be in community with others who are traveling a similar journey. Our favorite events are the Christmas party and the Step Up event. They are family traditions that we look forward to. Because of the DSAWM we have met some amazing people, we have learned a lot, and we have felt supported. Thank you!
Lori wrote this article in early March 2020.
Let’s move on to the positives which, in our eyes, is everything. As you all know, people with Trisomy 21 are truly the most loving, caring, and happy people in this world. Bennett is the son we always wanted, but just didn’t know it. He has three older sisters who worship him and everything he does. He has started trying to walk and he just got his teeth, so that is new for him. He has a slow esophagus, so foods are tricky, but speech therapy helps us out a lot. He is an amazing kid. People fear things being wrong with their children as parents. We want healthy, brilliant kids who can do anything. So people with Down syndrome get looked upon differently. It’s a tragedy that this happens. Down syndrome is worrisome for sure–the health issues and everything–but any kid can have health issues. I feel Down syndrome is amazing. My son is happy ALL THE TIME. No one else gets that. As an adult, I know life and sadness and rough times. He makes up for all that. Bennett loves to play, loves to eat, and loves to mimic everything we do around him. Music is his favorite thing. He laughs and dances and loves it all. He catches on quickly and is just so darn cute.
I hope you all have learned a bit about our little guy. It is weird writing something like this, but we tried. You don’t really know how to highlight your child for being different or what not. To us, he is just Bennett Emerson Cole. To us, he is a kid. No issues, no worries, no problems. He is just a kid. He will have a stigma about him in life which he shouldn’t have. No one should, ever. We all eat, breath, sleep, sweat, and cry the same. Some just need help with those things. We are all human. We are all mankind. The way we see it as parents of a child with Trisomy 21 is that we won the lottery. We get to see life from an advantage that most don’t. We get to watch a kid who is full of love and joy grow up. Despite odds or whatever is tossed his way, he still keeps these traits. We should all be so lucky to be like him or anyone like him. It’s a beautiful thing.