“They say having kids will test the relationship with your spouse in ways you never could have imagined prior, but when one of your children is thrown a diagnosis from hell, your relationship can fall apart just as quickly as that diagnosis was given if you let it.
Before having our first child in 2019, mine and my fiancés’ relationship was strong. We were best friends and got along great (for the most part). We spent most of our time together doing things we enjoyed like mountain biking, road tripping, beer-drinking, etc.
After our daughter Emma was born, our lifestyle changed (obviously). We made a pretty good team considering we were first-time parents and had no idea what to expect. In the first year of her life, we did pretty well as a couple and managed to keep our relationship relatively happy and healthy.
As she turned one, we started getting worried that something was going on with Emma. The lack of awareness of her environment was concerning and she had been falling behind in milestones for the last few months (something we were told not to worry about at the time). We were quickly referred to several specialists to have her checked out. After multiple tests and appointments, the only thing they were able to figure out was that Emma was blind. We were then referred to get genetic testing as there was no other explanation for this diagnosis.
That was the start of the insane tension between me and Emma’s dad. Don’t get me wrong, we had lots of days where we could rely on each other for support but I feel like we couldn’t give each other the support we needed at the time. All because we were both trying to process this in our own ways which often was very different from each other resulting in lots of arguments.
As the months went by waiting for the results of the genetic test, we slowly started working as a team in navigating this new life while still having minor fights along the way. Then life threw us a curveball of a diagnosis. Emma was diagnosed with a rare neurodegenerative genetic disorder called KAND (Kif1a Associated Neurological Disorder).
‘Neurodegenerative’ is a word that is every parent’s worst nightmare. This diagnosis was so out of left field that we were back at square one but this time we were not only fighting for our relationship, we were also fighting for our child’s life and future.
How do you maintain a healthy relationship when you don’t even know how to maintain your mental health at this point? We were doing everything in our power to give Emma everything she needed while fighting against each other and despite how hard we tried we couldn’t get on the same page. Over the last few months, things have gotten better but I often feel like we’ve lost that connection we once had. I feel like there is so much resentment and sometimes it feels like we don’t even enjoy each other’s company.
We barely laugh together anymore and date nights are nonexistent. We don’t hold hands and our ‘I love you’s’ are cold. I used to feel loved and I haven’t felt that way in a long time, but I also know that I probably don’t make him feel loved anymore either. I know that all relationships are tough and you have to put in the work if you want them to last, but at what point do you throw in the towel?
Even though this is a rough patch, I love my fiancé. He is a great dad and at one point was a great partner. This diagnosis has changed us as individuals as well as a couple. I don’t want to give up on our future because I truly feel like if we put in the work, our life could be great again despite our daughter’s condition. This disease has already taken so much from Emma that I won’t let it take down our lives as a family.
I feel like there is stigma around this topic because people want to portray themselves as being the perfect family but in all reality, everyone has their ups and downs. There is a very high divorce rate in special needs parents so I feel like this should be addressed more often. I wish someone would have told me to expect this and maybe we could have worked on it from the start, causing less tension in an already tense time. But for now, I’ll keep holding on.”
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.
Read more from Amanda here:
‘You’re so strong…’ 3 little words I often hear as a parent to a very special girl.’ I don’t want to be, but here I am, giving the middle finger to her diagnoses.’: First-time mom shares special needs journey
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