10 Things I Wish Loved Ones Knew About Our Special Needs Family

You see our social media posts, or you visit with us and our three incredible children and comment about our strength, our family unity, our love for our children — but there is so much you’re missing. We try to show you our real life, the good and the bad, but the reality is that there’s so much we don’t share because, truthfully, sometimes our real life is too much to handle.

Here are the top 10 things I wish we could tell our friends and family:

1. We are lonely. Our oldest son, Hartley, was born with intestinal failure. His medical complexities are rare, and there aren’t many families living a similar life. It’s difficult when we’re unable to fit in with other parents. It’s heartbreaking at times when there’s no one to vent to who will 100 percent “get it.”

2. Even when we’re home from the hospital, Hartley isn’t “all better.” Because our son’s illness will never go away, we have to accept that this is his life — our life. We bounce from crisis to crisis, and he does have frequent hospital admissions when things get rough. But the truth is, he’s never really better. When we’re sent home from the hospital, it’s because the immediate danger has passed. But we’re just in the trenches at home, managing his illness the best we can — until we inevitably can’t again and seek treatment from our medical team and end up back in the hospital.

We provide Hart’s care ourselves; we don’t use home-care nursing for fear of infection or human error. Hartley is hooked up daily to 16 to 24 hours of IV fluid. He needs this to survive. It keeps his body hydrated, his kidneys and brain happy, and it helps him grow. The constant care can be exhausting, but it’s so worth it to keep him thriving.

3. We need you. We may look like we have things under control — and we do for the most part — but we still need you. We need our parents, our families, our friends. Everyone has something going on in their lives, and we know people get tired of checking in on us… especially after six long years of Hartley being sick. But we need you. We need your simple texts, emails and phone calls. They keep us going and make us feel like we’re not alone, even if only for a moment. We so appreciate the people who take time to check in regularly.

4. We worry about the worst-case scenario more than you think. We’re constantly trying to fill our children up with love and fun experiences. We want them to have happy memories (not just painful ones involving traumatic medical emergencies and hospital visits), and we never know how much time we have with our son. Most parents worry about something horrible happening to their children, but when you’re constantly trying to keep your child alive, that horrible thought is in the back of your mind every minute of every day.

5. We worry about Hartley’s siblings all the time. Deciding to have another child after our early experiences with Hart was terrifying. We always wanted a big family, and we never wanted Hart to feel like we didn’t have more children because of him. We took a leap of faith and had two more children, and we can’t imagine life without either of them. They complete the family, bring balance and laughter and are a huge support for their big brother — but we worry about them… a lot.

We worry about whether they get enough attention, feel enough love and get enough of our time. We try to focus on them as much as we can, giving each of them alone time with us doing the things they love. We worry about traumatic memories of scary emergencies and them watching from the comfort of their grandmother’s arms as their parents drive away with Hartley in an ambulance.

We hope having a medically complex brother helps shape them into compassionate, caring adults who cherish every day they’re given. We are so incredibly proud of how flexible they are, how loving they are and how understanding they are — even at their young ages.

6. A cold is never “just a cold” for Hartley. Cold and flu season is the most anxiety-provoking season of the year for us. We worry daily about his safety and what might happen if he were to get sick. Two years ago, we almost lost him when he contracted the flu. He lost almost two years’ worth of weight gain (gaining weight for Hartley is incredibly difficult), and the dehydration was so bad that we couldn’t manage it with his regular IV fluid, and it started to temporarily affect his brain function.

7. We feel incredibly lucky. We’ve come so close to losing Hartley (more than once) that we feel incredibly blessed and lucky to have him and our other two beautiful boys, Hudson and Sullivan. We try to enjoy every moment with them and not sweat the small stuff. We feel honored to be their parents.

8. We grieve everyday “stuff.” We’re often sad about things that come naturally to other families, milestones that are often taken for granted — like going to school, playdates, going on vacations, eating birthday cake, leaving the house in the winter… things that seem silly, but once you can’t do them with your children, you miss them and even long for them at times.

9. We break down daily. You don’t see us snuggled up on the couch crying together once the boys are in bed. While we’re always honest with the boys, we try to keep things as positive as we can and not let them know how serious things are at times, or how scared we are. We rely on each other. My husband is my best friend, and I really couldn’t imagine doing this with anyone else. He has seen me at my worst (many times) and is still there to comfort me and help me pick up the pieces. We try to debrief daily and end our day with a comforting hug or cuddle — full of love and ready to recharge for the next day.

10. We love our life. It’s easy to feel down and get overwhelmed by the enormity of Hartley’s medical needs and what it takes to keep him alive — but we really do love our life. We have the most hilarious, adorable, strong little boys, and every day we feel so thankful to call them ours. They fill our home with joy and laughter. We learn every day from them and wish we could slow time down just a little bit because we love having a full house.

The Mighty is asking the following: What’s one thing you wish you could tell loved ones about your experience with disability and/or disease? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.