12 Things to Know About a Mom Raising a Child With a Chronic Illness

While I was pregnant, we knew our son would would have a multitude of health issues. But it wasn’t until he was born that we learned he had prune belly syndrome. Prune belly is a rare and life-threatening syndrome affecting just 1 in 40,000 births. There is no cure at this time, but there are treatments available such as catheterization, medication and kidney transplantation. Here are 12 things I would like you to know about raising a child with a chronic illness:

1. It isn’t easy.

It definitely isn’t easy.

2. Everyone tells us how strong I am, but I’m really not that strong.

I’m a mom, not a superhero. I don’t wear a cape. I just do what any other mom would do, which is taking care of my child. Trust me, you would do the same thing. You don’t really have a choice; you just dive in and get it done.

3. I’m tired, restless and sometimes lonely.

I put my child to bed at night and stay up late. I stay up late scouring the Internet for new studies and information about treatments for my child. I hop onto my online support groups and answer questions of others and ask for help ourselves. I stay up late doing those endless loads of laundry and dishes I couldn’t get to earlier in the day because I was busy. I wasn’t busy doing fun activities with my child, I was busy on the phone with insurance companies, doctors’ offices and medical supply companies. Busy going to and from appointments, procedures and lab draws.

4. Real friends are hard to come by.

Coffee at Starbucks? Dinner at 7? Play date at 11? Not so much anymore. I try. I really do try to get out and socialize, but sometimes I just can’t swing it. It sounds so good when I say we will be there. But by the time I juggle homework with my other kids, tackle a load of laundry and administer medicines, it’s already 9 p.m. To those friends who have stuck by my side after I have broken plans (again and again), I thank you!

5. Stop feeling sorry for us.

I don’t need anyone to feel sorry for us. Yes, it’s difficult my child has to have surgery. Yes, it’s heartbreaking he’s sick and in the hospital. But please, don’t feel sorry for us. Don’t pity us. When I talk to you, I just want you to act normal and talk about normal things. It’s my escape from the challenges my son and I face. A little bit of normalcy does wonders.

6. When I say I don’t need anything, I’m lying.

I don’t want to burden anyone with my own issues. So when I say we don’t need anything, take it with a grain of salt. I’m not going to speak up and say, “I could really use some company” or “I could really use some help.” If I’m in the hospital, please bring coffee or lunch. Force me to get out of the house and don’t let me make any more excuses. Sometimes I need an extra nudge to get up and get out even if it’s just for a walk or to sit outside and chat. Just being there allows me to breathe a sigh of relief, knowing somebody really does care.

7. Ask me before posting to social media.

A lot of moms have blogs or Facebook pages. I encourage you to hit the share button or copy and paste the links. But please, and I am begging you, do not log onto Facebook or your other social media accounts and start posting pictures of my child with your own version of what’s going on in our lives. Sometimes I tell you things in confidence and I’m not ready to make this information public. I’ll always appreciate the prayers and well wishes, but please use a generic statement and don’t name names until you check with me first that it’s OK. I might be waiting for an official diagnosis from a doctor or might not be ready to announce the news with everyone yet.

8. I’m smiling, but my heart is aching.

Some days it takes all I have to put on a smile. My child’s illness is emotionally, physically, spiritually and financially draining. My child deserves the best, and I don’t want him to know my heart is really aching. So I make sure to smile for him even when I feel like crying because some days are so hard.

9. I just need you to be there.

I can go through a ton of emotions in one day. Please don’t take offense if I don’t return your phone call or text right away. I saw it and love that you’re thinking about me. I promise I’ll get back with you once I have a minute. It might not seem like it to you, but just being there is a huge deal. Knowing I have somebody in my corner makes me feel 110 percent more confident.

10. It feels like I’m a nurse without the degree.

I change dressings on my child’s raw and bleeding skin. I administer medicines multiple times a day. I wipe away tears and soothe the soul. I cleanup vomit and stand vigilant through the night monitoring a fever. I know how to take blood pressure, insert a catheter and administer a feeding through a tube. I may not be a nurse, but I have learned so much from hands-on experience, I feel like I could pass for one.

11. My child can go 0 to 100 in a matter of hours.

I can wake up and go from having a great morning to spending the evening in the emergency room. Oh, and I’m ready for that. I’m always on my toes and ready to expect the unexpected.

12. I wouldn’t give it up for the world.

To the outsider looking in, this can all seem overwhelming. Honestly, it can be overwhelming, but the love I have for my child is not measurable, and the smile I see on his face is indescribable. This is the life of a mother with a chronically ill child. This is my normal. I get paid in smiles. Does it get any better than that?

Follow this journey on medicine & smiles.