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Lessons Learned In A Marriage While Raising A Medically Complex Child

At the beginning of this series, we set out to find parents who could answer the question ‘how has your marriage been affected by having a child with medical complexities, and what have you done to keep it strong?’ We also opened the question up to families who are no longer married, whether due to this increased level of strain or because of other factors – because every journey is something to share. 

We had long read the statistic that married couples who are the parent of a medically complex child are more likely to get divorced – but wanted to dive deeper into the real stories and lessons from couples who are walking the walk.

Through phone interviews, emails, and Facebook messages, we learned what a big impact a child with medical complexities can have on a marriage emotionally and financially.

We also learned how couples find strength in one another and find creative ways to stay connected amidst a sometimes chaotic scene.

In the final installment of this marriage series, we asked the parents we spoke with to summarize what they’ve learned, and their advice to other couples raising a child with medical complexities.

Finding lessons in the everyday

  • “We have learned with age that not everything needs to be a fight, and we need to be a little more patient. With special needs, nothing ever goes quickly.” – Danette
  • “We learned it’s okay to grieve and feel sad about what is happening. And by not talking about it, it would eat us alive. We have to acknowledge those real feelings, because it’s not always easy to be a team – we have to be conscious of it.” – Katie
  • parents give advice on maintaining a healthy marriage while raising a medically complex child“We are never guaranteed anything – life is very fragile, and we’ve really been able to focus on the important things and let the trivial things go.” – Deanna
  • “I think my husband and I decided to determine what’s important. We decided not to focus on the things our family hasn’t been able to go to, or and instead focus on each other and building each other up, so we can build our kids up.” – Nicole
  • “We needed to choose to be united or divided. And that’s what our decision has been – to stay united.” – Katie
  • “I’ve learned to show the my husband that I do care. And in the beginning, it sometimes is just going through the motions. Giving my husband a hug and maybe I mean it on the inside, but on the outside it doesn’t show that I really do care. But at least being able to give that first hug to come out of that co-existence – those little things – can open up so many doors for connection.” – Nicole
  • “Over time I have learned there’s more than one way to do things. It doesn’t always have to be my way, as long as the child is being taken care of and comfortable.” – Deanna
  • “People always tell me ‘you need to make time for yourself.’ And I think it’s true that you do, and you also need to take time for your marriage. We just remember that even though these things are hard, we’re blessed – he’s here with us, and we have access to services, teachers, therapists, and more.” – Katie

From one parent to another: their advice

  • “Be kind to each other. Never blame. Apologize if the words need to be said and lift your partner up if they need it. Sometimes one of you needs the support, and sometimes the other does.” – Kari
  • Keep your focus on the present moment (day, hour or even minute if you have to)! It’s so easy to get stressed and overwhelmed with all the crazy details and the unknown. One step at a time.” – Crystal
  • lessons learned in a marriage while raising a medically complex child“Find a counselor. You don’t have to go, but find one you like so that when things are heated and hard, you can just go – you don’t have to do research. And it doesn’t mean your marriage is failing or you don’t know what you’re doing, it’s just another tool that you owe to yourself and your family to use.”- Emily
  • “Constantly try and stay connected even though it’s hard. Because marriage in general is high risk anyway, and then when you have a complex child it’s even more.” – Katie
  • “Find as much support as possible, and utilize resources and ask for help.” – Laurie
  • Hug every day. Whether or not you want to, hug your partner.” – Nicole
  • Talk, ask. Even if somebody hasn’t experienced the exact same thing, they may know somebody. Even if  they have a diagnosis that’s not exactly the same, you can still learn things from one another. This isn’t about keeping everything a secret.”
  • Find organizations that support you – for us that was HopeKids. That’s really one place that has helped us overcome feeling like we didn’t belong anywhere.” – Nicole

Thanks to all of the families who offered their advice, opinions, and stories to help make this series not only a possibility, but a valuable resource for other families walking a similar path. If you have ideas for other topics we could do in the future, please feel free to leave them in the comments below!

Originally published: March 29, 2017