Carissa and 10 yr old Jack.

Dear Mom,

I want to be one of many to congratulate you and celebrate your new baby. I too received the news my baby would have Down syndrome and I experienced feelings of shock, confusion, grief, and fear. Whatever feelings you are having, you are not alone in them. I had thoughts and questions about how it would change everything that I had imagined for our lives. Fears of how it would impact my marriage, my 2-year-old at the time, and what life would look like when raising a child with additional needs.  

As a mom a little farther down the journey, I do want to give you some encouragement that I wish I had known when I had my son, Jack. I remember while I was still in denial of his new diagnosis, doubting myself, if I was strong enough to be his mom, he looked back at me with his almond-shaped eyes and it’s as if he said to me, “I know this is a surprise but just love me.  That’s all I need right now”.  In those tender moments, I fell in love with the boy, which was exactly what our hearts needed as I slowly gave myself the grace to grieve what I had hoped, which eventually led to a place of surrendering my plans.  

It was that time of surrender that moved my heart towards acceptance which ultimately prepared me for the most beautiful journey I wish more people got to experience.  It also allowed me to see the incredible gift I was given, my son.  

What I found was not in all the generalized and outdated material that assumptively shared about what my baby could potentially experience during his life. Still, instead, I chose to learn more about my baby. I wanted, like most moms, to do my best, and I thought that now meant I had to research all the things related to his diagnosis, to prepare us for this new path.  But in the 11 years on this journey, I have learned a little bit about Down syndrome, and I have learned a lot about Jack.  

He has taught us many things in his life but the most important is to see every person as someone uniquely created with a purpose to do amazing things, who is worthy of celebration, and that includes your precious baby.  

Your baby will make you better in ways you didn’t know you needed in your life. Your heart will grow in empathy, understanding, patience, and gratitude for the simple things we take for granted. What I thought was hard before this journey I would now define as challenging. My ability to withstand things I never imagined has built and grown resiliency in myself and my family which I am truly thankful for. Until having my son, I overlooked certain milestones, not appreciating the small things that develop determination, grit, and a lot of patience in all of us. Without him, there is a long list of things I may not have called blessings if not for this journey.   This has given us an intention to celebrate the little things and celebrate each other more. Life is lived with much more intention and gratitude because of him giving us a new perspective.  

Although I am much stronger now than I ever thought I could be, raising a child with extra needs makes me also rely on others. That is difficult for my personality, and I’ve learned it’s not a sign of weakness, it’s a sign of humility. Because of him, I have met the most wonderful people (therapists, teachers, paras) who have a heart to serve and give their gifts and talents to help my child reach his best potential. It took me a while but I came to realize that it didn’t (and doesn’t) have to be all on my shoulders. It never was meant for me to carry alone, and neither is it for you. We are in this together.  

The best resource for me was connecting with other parents raising a child with Down syndrome. Our community will understand the mountaintops and the valleys and will come alongside you when you need a good cry, a reminder that the milestone will come, encouragement in the plateau, a pep talk that you can do hard things, or possibly some tough love to stop feeling sorry for yourself. I encourage you to show up, be vulnerable, and experience the love that our community can give…because it’s another gift you’ll receive from your child.  

Many of those original fears haven’t come to fruition, specifically, the one where I wondered if his diagnosis would define him. He’s a son, brother, grandson, friend, classmate, teammate, neighbor, and so many more things that Jack defines for himself.  He looks just like his siblings, getting his beautiful brown eyes from his dad, along with his strong work ethic, and it’s been a joy to see how he has positively impacted all who know him. His personality makes me smile and he has a sense of when a situation or person may need a hug, a line from his favorite movie or musical. Or when we all need to stop and just dance. Jack makes us better. 

The biggest influence on Jack’s life hasn’t been the extra 21st chromosome, it’s been the loving and supportive environment he is raised. We don’t make excuses for him, we hold him to high expectations. We believe he is God’s masterpiece, capable, and worthy, and with each of our kids help him reach his best potential because he deserves that, just like all of us do. Believe in your child.  

I am thankful my plans didn’t work out the way I had hoped. In life, we don’t always get to choose what happens to us, but we can choose how we respond.  I can confidently tell you that your child will make you better if you choose to surrender your plans, accept your child, and experience a beautiful journey that many in the world may not understand because they have not been chosen for this gift. 


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