“To the dads of special needs children…
When you get dealt the cards of having a special needs child, your life changes instantly. That joy of having a child turns into fears of the unknown. So. Many. Fears. Although your child is such a blessing in your life, you can’t help but grieve the life you thought they would have and the person you thought they’d become.
Having a special needs child is not a burden, and in fact it truly makes you realize what’s really important in this world, but it is hard. It’s hard mentally and physically. It challenges you more than anything else could possibly challenge you. It forces you to be strong while pushing you to become the best version of yourself for your family, focusing on the future and letting go of the past.
It’s draining, but also rewarding. Not only is it hard on you as an individual, it’s hard on relationships too. Parenting in general can put a strain on your relationship with your spouse, but adding in all of the things that come with having a special needs child (tests, waiting for results, therapy, guilt and finally a diagnosis) makes it that much more challenging to be on the same team, but you make things work for the happiness of your child.
As a special needs mom, I often read other mom’s stories about their journey as a mom to a disabled child, but I rarely see any stories from the dad’s perspective, so this is for all of you amazing dads out there, but especially my fiancé Jamie.
Your strength doesn’t go unnoticed. At times, I know you feel like you are slowly falling apart, but you continue to give us your all no matter how hard it is. Your ability to go about your day, whether it be working or playing with the kids, pushing all the same feelings we as mothers have aside is beyond admirable. You text me multiple times throughout the day just to check in on us and make sure we are okay, making me realize that although you aren’t home you never really get a ‘break.’
The way I see you look at our child knowing every ounce of you wants to cry, but there you are with a big smile on your face is heartbreaking yet very heartwarming at the same time. The way they look back at you like you mean the world to them fills my heart with so much love. Hearing the laughter between you two every night during bath time is so cute it makes me sick.
I see the sadness in your eyes when you watch other parents playing with their ‘typical’ toddlers, but it doesn’t stop you from being the dad you need to be. You include her in everything other kids her age are doing even though she isn’t fully able. You proudly take her out for daddy-daughter time, even though the dreams you once had of enjoying hot chocolates at a coffee shop or running around at the park together break your heart.
Your commitment to this new life is nothing short of amazing. You wake up in the middle of the night with us to help, even though you have to get up for work in just a few short hours. You go to work everyday for 10 hours and come home to take over the care of our child so I can have a break.
You do bath time routine every night because you love that time you two spend together. On weekends, you wake up early and do the morning routine so I can sleep a little longer. And when I come downstairs, coffee is always ready for me to start my day. You go along with all of the crazy ideas I get in my head for things I think would benefit our child.
Most importantly, you are there to pick up the broken pieces of my heart, even though yours is just as broken. I truly could not do this life without you and I need you to know you are loved and appreciated, even though I might not say it as often as I should. You dads simply don’t get the same recognition as we do even though you deserve it just as much. Our daily duties might be different when it comes to raising our child, but we share the common ground of loving them with all of our hearts and making sure they have the most fulfilling life. You dads are the real MVPs.
Our beautiful 21-month-old daughter, Emma, was just diagnosed with KAND (Kif1a associated neurological disorder) in February 2021 after 8 months of diagnostic testing. KAND is an extremely rare neurodegenerative disorder that affects only 300 people world wide. There is currently no treatment or cure, but there is an amazing organization run by parents of Kif1a kids doing everything in their power to find a cure (Kif1a.org).
Although we are very new to this journey, Jamie has proven again and again to be the rock in our family and even though we have had our rough patches throughout the last 8 months, we are now stronger than ever. I truly feel that a lot of dads out there deserve the same recognition. Us moms can get carried away with feeling unappreciated or overwhelmed at times without realizing our partners may feel the same. We are all in this together.”
This story was submitted to Love What Matters by Amanda Burritt of British Columbia, Canada. You can follow her journey on Instagram and Facebook. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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