Being the Mother of a Chronically Ill Child

While I was pregnant, we found out that our son would would have a multitude of health issues. It wasn’t until he was born that he was diagnosed with Prune Belly Syndrome which is a lack of abdominal muscles which in turn, cause all sorts of problems. Prune Belly is a rare and life threatening syndrome effecting just 1 in 40,000 births. There is no cure at this time, but there are treatments available to help such as catheterization, medication and kidney transplantation. My son is now five and this is what I want people to know about what it’s like to be a mother of a chronically ill child.

It isn’t easy

God… it isn’t easy.

Everyone tells us how strong we are, but we really aren’t that strong.

We are Mom’s. A Mom, just like you. We aren’t superheroes, we don’t wear capes. We just do what any Mom would do which is taking care of their child. Trust me, you would do the same thing. ou don’t really have a choice, you just dive in and get it done.

We are tired, restless, and sometimes lonely.

We get our children to bed at night and we stay up late. We stay up late scouring the internet for new studies and information about treatments for our children. We hop onto our online support groups and answer questions and ask for help ourselves. We stay up late doing those endless loads of laundry and dishes that we couldn’t get to earlier in the day because we were busy. Not busy doing fun activities with our children, but busy on the phone with insurance companies, doctors offices and medical supply companies. Busy going to and from appointments, procedures and lab draws.

Good friends are hard to come by.

Coffee at Starbucks? Dinner at 7pm? Play date at 11am? Not so much anymore. We try. We really do try to get out and socialize but often times, we just can’t swing it. Trust me when I say this – it sounds so good when we say we will be there! But by the time we juggle homework from the other kids, tackle that load of laundry and do night time medicines, it’s already 9pm. To those friends who have stuck by our side regardless if we have had to break plans (again and again)… thank you!

Stop feeling sorry for us.

We don’t need anyone to feel sorry for us. Yes, it sucks that my child has to have surgery. Yes, it is heartbreaking that they are sick and in the hospital… again. But please, don’t feel sorry for us. Don’t pity us. When we talk to you, we just want you to act normal and talk about normal things. It is our escape from our heartache. A little bit of normalcy does wonders!

When we say we don’t need anything, we’re lying.

We don’t want to burden anyone with our own issues. So, when you ask if we need anything and you hear that generic “No, I’m fine”, or “No, we’re okay,” take it with a grain of salt. We aren’t going to speak up and say, “Hey! I could really use some company,” or “I could really use some help”. If we are in the hospital, bring up coffee or lunch. Force us to get out of the house and don’t let us make any more excuses. Sometimes we need that extra nudge to just get up and get out even if it is just for a walk or to sit outside and chat. Even just being there allows us to breathe a sigh of relief that somebody really cares.

Ask us before posting to social media.

A lot of Mom’s have blogs or Facebook pages that are public. These are free game to share from and we encourage you to hit the share button or copy and paste that link. But please, and I am begging you, do not log on to your social media and post pictures of our child(ren) with your own versions of what is happening. Sometimes we tell you things in confidence and are not ready to make this information public. We will always appreciate the prayers and well wishes, but please use a generic statement and don’t name names until you check with us first. We might be waiting for an official diagnosis from a doctor, or a test, or we might just not be ready to announce our news with everyone just yet.

We are smiling, but our hearts are aching.

Some days it takes all we have to put on a smile. Our child’s illness is emotionally, physically, spiritually and financially draining. Our child deserves the best and we don’t want them to know that our hearts are really aching, so we make sure to put a smile on our faces for them even when we feel like crying because some days are so hard and we feel defeated.

We need you to just be there.

We can go through a ton of emotions in one day. Don’t take offense if we don’t return that phone call or text right away. We’ve seen it and we love that you are thinking about us. I promise we will get back with you once we have a minute. It might not seem like you just being there is a big deal, but it is a huge deal. Knowing we have somebody in our corner makes us feel 110% more confident.

We are nurse’s 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 a blood pressure, insert a catheter and administer a feeding through a tube. I may not have a nursing degree, but I have learned so much from hands-on experience I could pass for one.

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

We can wake up and go from having a great morning to spending the evening in the emergency room. Oh, and we are ready for that. We are always on our toes and ready to expect the unexpected.

We wouldn’t give it up for the world.

To the outsider looking in, this can all seem so overwhelming. Honestly, it can be overwhelming, but the love we have for our child is not measurable and the smile we see on our child’s face is indescribable. This is the life of a Mother with a chronically ill child, and this is our normal. We get paid in smiles… does it get much better than that?

Sarah is a stay at home mom and is new to the blogging world. When she’s not playing referee between her five children, she is advocating for children with illness and disabilities to create much needed awareness. You can find her sharing her son’s medical journey on Facebook or read her latest thoughts by visiting her blog Medicine & Smiles.