How are you doing amist COVID19?
Overall I’m doing well! There are definitely the negative parts of sheltering in place for so long. Juggling distance learning with my students (I’m a second grade teacher), managing my own second grader and preschooler’s learning from home, being therapist and caregiver to a daughter with special needs, and maintaining sanity while we’re stuck in the house for so long is no easy task! I worry a lot about my students who come from rough home lives, worry about where their meals are coming from, struggle with learning, or have special needs. On the other hand, my heart is overjoyed that I get to be home with my kids. I love my job and students, but I’ve always felt the call to be a stay at home mom while my kids are young. Unfortunately it hasn’t been in the financial cards for us. It feels like in some ways I’m getting my chance to do that, even under less than spectacular circumstances and I can’t feel anything but gratitude for that. Having a medically complex child with special needs definitely heightens my anxiety about this pandemic. I worry about her getting it. She has reactive airway, smaller airway passages, and a history of respiratory infections including pneumonia, so she is definitely more at risk for complications if she contracted Covid19. We’ve been doing everything we can to keep her safe, and I’ll stay home as long as it takes to do that!
What has become your favorite part of the day?
Any time we get to be outside! I live in Michigan and spring is both glorious and volatile. Last week it snowed for several days! My older kids love to ride their bikes, and Ivy loves to sit in the grass and feel the wind in her hair. She recently got a gait trainer which is helping her learn to walk and we love taking walks with her down the sidewalk. We’ve been taking hikes as a family at least once a week. In this time of uncertainty, being outside lifts my spirits! I also can’t deny that I love my quiet nights after the kids go to bed. I usually eat second dinner in a hot bath, and then my husband and I have been watching The Marvelous Mrs. Maisel which I can’t recommend enough! I probably stay up way too late for a mom who still gets woken up multiple times every night, but it is so nice to have some ‘me’ time where nobody is touching me or needs me for something!
How have your Kids been handling these days?
They have definitely been handling this better than I expected. My older kids are 7 and 5, so they are still young enough to think it’s exciting to get to be home as a family. We do school work in the mornings and then have lunch and mandatory rest time (mostly for me!). After rest time they get a little bit of screen time before we go outside if the weather is nice. I’m not the type of mom to plan all kinds of crafts and activities. I’m more the kind of mom that pins them on pinterest or admires what other moms do on social media and then never manages to do them haha! We have been doing a lot of cooking and baking together which has been a lot of fun. My oldest daughter has become quite the baking queen and made a delicious chocolate fudge layer cake with peanut butter buttercream frosting last week that was to die for. I will probably need to go buy new pants after this quarantine.
What is Motherhood like for you raising a daughter with Down Syndrome?
That is a really hard question to answer without writing a book! We had a prenatal diagnosis with Ivy, so I had a lot of time to wrap my head around it and prepare. I was expecting the transition from two kids to three kids plus the extra needs of a baby with Down syndrome to be really hard, but it was honestly easier than going from one kid to two kids at least for me. In those early days, I realized that having a baby with Down syndrome was remarkably just like having any baby! She needed all the same things that my other kids did – love, food, clean diapers. We had a very eventful first 18 months with Ivy including two surgeries, four hospital stays, countless blood draws, and other procedures. It’s one of those things where you look at what somebody is dealing with and think “I could never do that” but the thing is, you could. When you are thrust into the role of caregiver and advocate, you do whatever it takes for your child. I powered through because she needed me to. Now that things on the medical side have slowed a bit, I feel like I’m coming into my own as a special needs mama. A huge way that having Ivy has changed my life is that it has turned up the intensity. It’s like the difference between taking a picture with a disposable camera and with a crazy expensive professional camera. Everything is heightened since Ivy’s entrance into my life. The hard, is harder. I’ve cried more, worried more, and felt paralyzed by fear and anxiety more. I’ve held my baby after two surgeries that left her in a lot of pain, held her down countless times for blood draws and IVs, and fought to be heard by her care team. But those things have only helped intensify the good. I have cried tears of celebration, smiled and laughed more than I ever have, felt deeper joy, deeper relief, and deeper contentment. I’ve felt closer to God and my faith has grown deeper and more intense. There are hard days for sure and if you’d asked me before about whether I would be thankful to be part of this club I would have said a firm no, but I can’t be anything but thankful for the gift that Ivy has been in my life. She has made me such a better person!
How can other Parents begin a conversation about Disabilities with our Kids?
I think the biggest thing is intentionality. Before Ivy was born, I was not very intentional about this and it is one of the best ways she has changed me. As parents we need to be intentional about being inclusive in our own lives. Do our children have the opportunity to encounter people who are different than them? Do we seek out places that are inclusive? What about when your child says something uncomfortable or points out somebody with a disability in a less than subtle way? I will link a post from several months ago about an experience I had with this very thing. As a parent of a child with a disability, I can very firmly say… please come say hi! I promise that I know your child is exactly that – a child. I welcome every opportunity to show you and your child that Ivy is more alike than different and teach you a little bit about Down syndrome! From what I can tell from my other special needs mama friends, we don’t offend easily as a rule. If you or your child have questions or want to learn more, we will be so happy to help, even if you don’t say the exact right words. Finally, there are so many tools that you can use to proactively teach your child about people who are different (but also so much the same) than them. Some favorite books are “When Charlie Met Emma” by @thislittlemiggy and “Eli Included” by @meeshellsullivan You also have to follow @specialbooksbyspecialkids because Christopher is an amazing force for spreading inclusion and love. He interviews children and adults with special needs or other health issues in a way that shouts the message that we are all more alike than different. Zoe loves to watch his videos with me and we have great conversations about people who may look, talk, or act differently than us. One last thought is that as you help teach your child about inclusion, disabilities, and differences, I hope that you will help instill the fact that all people have worth and that people who are not ‘typical’ are not less than! Teach your children that we all have beautiful things to offer this world and befriending people who are different than us is not something we do because we ‘should’ or ‘have to’ but because it will enhance our lives too! I hope that these tips can be helpful as you work towards the goal of making our world more inclusive! I’ll leave you with one of my favorite quotes ever by @meeshellsullivan – “Inclusion is not charity for one person, it is a gift for everyone.”
What advice can you share with New Moms who are raising a child with Down Syndrome?
In case nobody has told you yet, CONGRATULATIONS! Welcome to the lucky few. Having a child with Down syndrome is the best thing you never thought you wanted. Here are a few pieces of advice I can give you from almost two years in.
*Whatever you’re feeling, it’s ok. Grieving is a normal part of this process. Every mom who is handed an unexpected diagnosis for their child goes through these emotions. It’s not what you planned or expected. Let yourself feel all the feelings so that you can move past them. Remember when I said this was the best thing that ever happened to me? I’m not lying. You will get to where I am, I promise. In the meantime, don’t beat yourself up for what you’re feeling. It’s important, but what is even more important is to remember in the back of your mind that everything will be more than ok… it will be amazing.
*You can do this. People who say that special kids are only given to special parents just don’t get it. There is nothing special about me that makes me better than anybody else. Having Ivy made me the mom I am because she needed me. You can and will be a great mom to this extra special child. As one of my favorite Ds mamas told me while I was pregnant with Ivy, “you weren’t trained for this, but you were made for this.”
*Get connected. If you don’t know it already, this tribe of special needs mamas is the best. We will welcome you with open arms and love you fiercely. This is a group of women from every walk of life who know the very deepest parts of your heart. Connection will save you when you are stressed and have a million questions. We will cry with you and laugh with you. We will celebrate every tiny inchstone your child meets with you. Reach out where you live but also online. We love to welcome new friends to the neighborhood!
*Enjoy the gift you’ve been given in the scenic route. We live in a world that is constantly moving. We are rewarded for doing things fast and it seems like everybody is constantly running somewhere. Having a child with developmental delays and medical complications has a way of changing the speed of life. Ivy has forced me to slow down and truly enjoy every moment we have together. She finds joy in the smallest things and so then do I. Her babyhood (probably not actually a word) is lasting for so much longer than with Zoe and Eli. I still have my occasional moments where there is an ache for how she is falling behind her typical toddler friends, but it’s in those moments where she will melt her sweet little low tone body into my chest and I’m reminded what a gift I’ve been given. How often do we miss our babies once they are grown? We wish we’d gotten just a little bit longer at each stage. Well we kinda won the baby lottery on that one!
What do you wish you had known that others do not simply share or mention?
We need to change the way we think about disability.
We need to change the way we think and talk about disabilities. When I got Ivy’s diagnosis I was terrified. I didn’t really know anything about Down syndrome nor did I have anybody in my life who had a disability. My fear came from ignorance. Did you know that there are 56.7 million people in the US have a disability? It is the largest minority group of people in our country. It is a group of people that so often is overlooked and marginalized. Because typical/able bodied people feel uncomfortable with differences. Because they overlook all of the ways that people with disabilities are capable. We need to start teaching our children about disabilities from a young age. We need to use correct terminology. We need to lead by example and show that people with disabilities are more alike their typical peers than they are different. We need to make room at the table for people with disabilities to share and bring their talents and perspective. We need to make accommodations when needed and ensure that the world we live in is inclusive to people of all abilities. We need to think about the language we use. Did you know that 67% of babies with a Down syndrome diagnosis are aborted in the United States? This number climbs astronomically in other countries. A huge reason for these numbers is the information given to women when they received a diagnosis. They are told of all the things their unborn baby will never be able to do. They are told that their child will have no quality of life. One look into the lives of families who have a child with a disability will show you that those things are simply not true. That is why I share so openly about our lives. I don’t want anybody to think that it’s all unicorns and rainbows, but I do want everybody to know that a life with disabilities is a life worth living!
Instagram – @myincredibleivy
Facebook Page – My Incredible Ivy
Blog – www.myincredibleivy.com