In the Gap: Children and Families Who Need Not Be Forgotten

I’ll never forget when a neighbor whose daughter had been battling leukemia was talking to me about their upcoming Make-A-Wish Disney World trip and mid-sentence she said, “You know, it really should be your daughter going on this trip; she’s been through just as much as my daughter; if not more.” I was stunned. My daughter didn’t have something horrible like cancer. I just couldn’t understand why she would say that. But after digesting her words, I realized that they were some of the most generous I had ever heard.

You see, my daughter was born with a lot of unrelated health problems, but nothing that the medical community could really wrap their heads around or explain. In other words, she couldn’t be put in a so-called box as doctors and charities like to do.

We spent so much of her early years at doctors, therapists, and hospitals all over Texas trying to figure it out, watching her struggle and suffer sometimes more than we could bear. As much as I didn’t want her to have a horrible disease or rare genetic disorder, I remember praying fervently for a diagnosis in those early months of her life because it seemed things would be so much more clear cut: Just tell me what surgeries or medicine she needs and we’ll do it. 

But it wasn’t like that. And it’s not for a lot of families. She was a child in the gap. A child who has hope for living a better life – possibly even a normal childhood – but whose parents are consumed with the crushing responsibility of getting him or her there, oftentimes with little guidance. Children like my daughter might spend years being dragged to doctor and therapists, but if someone asked you what’s wrong with them, their parents couldn’t explain it a nicely packaged sentence. There are no support groups for these type of children; no luncheons in their honor. But they still struggle and suffer and fight and need not fall through the cracks.

---

Whenever we first started frequenting Children’s hospital in Dallas, I was always astounded at the number of children who were truly suffering like my child. In wheelchairs or in braces or with some kind of tubes hanging out of backpacks. Just so sad. And I remember thinking, “How come I don’t see these children anywhere else but hospitals? Do their parents not take them out?” I eventually understood why.

For years, I took my daughter to at least five therapy sessions and two to four doctor appointments a week. When you have that kind of life, it’s just too exhausting to think about trying to fit in playdates at the the park or day trips to the zoo. (I envied my friends who had memberships to places likes this; we maybe went to those places once a year.)

This is the thing: When a doctor tells you that the therapies and treatments you are subjecting your daughter to might help her lead a normal life someday, then you don’t blow those appointments off. Especially when you already have to cancel so many because of sickness.

Those appointments, as miserable and stressful as they are, are the bridge connecting you to that life you so crave for your child. It might be a short bridge or the longest bridge in the world, but it’s a bridge over that gap of uncertainty and you aren’t going to get off it. In other words, you don’t have the luxury of deciding last minute to go to the art museum on a Tuesday.

Now, don’t get me wrong, I definitely tried to be normal (as if there was such a thing!). I would often try to squeeze in “normal” activities like library story time and swimming lessons in the Spring, but honestly it stressed me out even more because my a) daughter wasn’t “normal” and I was always having to make accommodations for things that were so easy for other children b) it made me envious of other moms that had the luxury of normalcy and c) it just added more things to fit it to our day and so my stress would just skyrocket even more!

---

Thankfully, I have the dearest friends in the world who loved and encouraged me every step of the way as I tried to make sense of my life and my daughter’s. Friends who always understood why I had to cancel a playdate at the last minute. Who never got annoyed when I asked too many times to watch my older daughter while I raced my younger one to the emergency room.

I want to share some things that they did that really helped us in those years, so that perhaps you can do the same for someone you know going through something similar with their child:

1. Random acts of kindness are great. I could write a post (and probably will) of the kind things my friends did for us during those really hard years. Even after the fourth or fifth surgery or procedure, they would still offer to bring dinner. (And, of course, I would feel super guilty because they had already done that a dozen times!). Things like a letter in the mail telling them what a great mother she is. Or perhaps drop a bunch of Spring flowers from your garden on their doorstep. Just something to let them know you are there for them.

2. Ask them to events even if you know they will probably say no. My daughter had a lot of physical delays and so we didn’t do stuff like birthday parties at The Little Gym. But my friends still asked. And I appreciated that so much.

3. Sometimes last minute get togethers are the best. Inevitably, whenever we planned to get together with another family, something would come up. That’s just the life of a family with a child with a lot of health problems. Don’t be afraid to text at 4 pm and say, “Hey, do y’all want to meet us for pizza at 6?” You might be really surprised that they may jump at an opportunity to do something fun and “normal!”.

4. Be considerate of expenses. It might seem like we are normal with our big SUVs and our cute houses, but every last cent of disposable income is going to therapy or an alternative treatment (none of which are covered by insurance!). On a given day I would easily spend $200-500 at various appointments. This can suck the life out of families. So, unless they suggest it, don’t plan double dates at super expensive restaurants or playdates at museums that end up being a $100 worth of entertaining. They might be embarrassed to say why they are declining, but it might just be because they can’t justify the expense.

5. Dote on their other children. If you don’t have children yourself, of even if you do, your friend will appreciate so much if you take their older child to do something she normally doesn’t get to do. A picnic, a movie, a friend’s birthday party. This is an example of extreme love but one of my good friends took my then two year old to a ballet class every week for a six months. It was a time for my daughter to get away from the stress and chaos of our home and it made me feel like my daughter wash’t being totally deprived of a normal childhood. She still has a special bond with my friend to this day and I am forever grateful for that kind (and huge!) act of friendship.

6. They might seem standoffish, always running around like crazy, or perhaps just quiet, but don’t take that the wrong way. Friends in the midst of something like this might forget your birthday one year or they might go six months without calling – which to you might seem like forever but to them just seems like a blink. Love them, encourage them, forgive them, and bless them. There are about two years of my daughter’s life that I really don’t remember. Seriously. I was so stressed and sleep-deprived and in a constant fog of doctors of hospitals that I am quite certain I was a terrible friend. But my friends never let me go. They never stopped loving and encouraging me. And for that I am forever grateful.

7. Help with researching doctors or new therapists. This might seem strange, but one of my friends offered this and it took such a burden off of me to know I wasn’t totally alone in trying to find the right help for my daughter. Plus, I was so mentally exhausted that sometimes I didn’t have it in me to keep researching and pursuing other options, so she would step in and help me.

8. And one “Don’t”: Don’t make comments about their parenting of other children. I remember when a mom had invited my older daughter (then four years old) to a playdate, I asked if she wanted me to stay, too. She made a comment to the effect of, “Sure, but I don’t think I would ever drop my four year old off for a playdate; she’s just too young.” It crushed me. Because, honestly, I felt the same way. But when your baby has three appointments that day and has to be tube fed in between – and your husband works 80 hours a week and and you don’t have any family in town – you just don’t get have that luxury of being a super awesome parent. You are desperate most of the time.

By the grace of God, and with the help of countless doctors and therapists, my daughter is doing so much better today. While we still do therapy and check in with doctors, our life is so much closer to normal than it has been in almost six years. And I am so grateful.

But there are so many families still out there crowding the elevators in doctors’ buildings and watching their children struggle. Perhaps these ideas will help you be more gracious and loving to them in ways you hadn’t thought of before.

Thank you for letting me share a bit of our journey. (And to my sweet friends who never let me out of their sights: thank you from the deepest portion of my soul.)