The one phrase I wish people would stop saying

I’ve been asked many times what condition my son has.  When I tell them, they look at me with a confused on their face.

Prune Belly is a very rare syndrome and most people have never heard of it.  Honestly, I had never heard of it either – until my child was diagnosed.

I start on how his bladder doesn’t work right which leads to more questions and me telling them how his belly button has a hole in it that we catheterize him through.  By the looks I am getting, I am starting to wonder if I have something on my face.  I fumble over words like ureter, hydronephrosis and creatinine.  I need to remind myself to speak in layman’s terms because to them, I am speaking a foreign language. I eventually just settle on the fact that he has kidney disease.

Then, they say it.

“Everything happens for a reason.”

What do you do at that point?  What do you say?

My son’s condition has not been proven to be genetic.  It is not environmental and it isn’t due to something that I did during my pregnancy.

It just happened.

No explanation available, no reason.

I used to lay awake at night pondering that statement.  I would think what is the reason for this happening?  Why us?  Why this diagnosis?

It is a normal phase to go through when your child is diagnosed with something you’ve never heard of.  You want answers, and you want them now.

It’s been 5 years and I’ve finally come to terms with the fact that there isn’t always a reason for everything.

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I understand that a lot of the time, people just don’t know what to say or how to act and sometimes they can say the wrong things.  I get it, I’ve been there, we all have.

If I can offer any insight to help other’s to avoid this phrase, it would be to say, “so what does this all mean?”

Sometimes you don’t need to say anything, just listen, and if you have the time to listen, I have the time to talk.

What I Want You to Understand About Being the Mother to a Chronically Ill Child

While I was pregnant, we knew that our son would would have a multitude of health issues.  It wasn’t until he was born, that my now 5 year old son, was diagnosed with Prune Belly Syndrome.  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.

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 our child.  Trust me, you would do the same thing.  You 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 of others 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.

Real friends are hard to come by

Coffee at Starbucks?  Dinner at 7?  Play date at 11?  Not so much anymore.  We try. We really do try to get out and socialize but sometimes 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 a load of laundry, and do night time medicines, it’s already 9 p.m.  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.  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 does care.

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 into your facebook account or other means of social media and start posting pictures of our child(ren) with your own versions of what is going on. 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 that it is okay.  We might be waiting for an official diagnosis from a doctor or 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?

momoakgala

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.