My son hated having his catheter put in at night so I did this . . .

My son uses a catheter to drain his bladder and we have to secure a catheter through his belly button (mitrofanoff) every night to keep the pressure off of his swollen kidneys.

Let me tell you, it’s like life in the battle field.

It will typically start with me getting the kids ready for bed, making sure everything is set for the next morning.  Then I will get Oakley into the shower, teeth brushed, jammies put on.

After that, it turns into a game of hide and seek.  “Where’s Oakley?”  I can hear giggles but I know he is hiding because he hates ‘getting hooked up’ as he calls it.

Hide and seek is usually followed by a marathon ran around the kitchen table…and he is fast!  He will shoot up the stairs and into my room.

He is now five, so his bargaining skills are quite good.  “Can’t we just wait a while?”  “Let’s just cuddle first.”  “Want to play a game?”  Common phrases of him trying to redirect.

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Now, this isn’t necessarily painful for him, just an inconvenience.  Who wants to carry around a bag of pee?  More so, get tangled in it?

Not this kid!

So what better thing can you do than break out the Sharpies?

Make it fun, right?

My first rendition wasn’t so pretty.  Really, don’t laugh, I tried!

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Sorry about that Olaf!

But, as time went on, I became a little better and learned some easier ways to design the Tegaderm films.

I design several at a time so that way he has a variety to choose from each night.

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There is no hiding and running around the table each night.  There are no more tears!

I’ve learned that you can turn something that wasn’t so pleasurable into something not only tolerable, but fun at the same time.

It definitely helps him cope.

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Team Oakley Christmas Drive

Oakley has many friends who are also fighting pediatric kidney disease.

Oakley wants to make sure each of these children and their siblings receive something they are asking for from Santa.

When you have a chronically ill child, finances are tight and most times you are just scraping by.

When you add on the holiday’s, things seem impossible at times and you feel defeated. Adding a Christmas gift into the budget is impossible.

Will you help us?

I know Christmas is several weeks away, but the earlier we start planning, the better this turns out. Last year we had two children who were ‘adopted’ but did not receive anything. So, please only commit if you plan on following through.

If you cannot help, will you hit that share button for Oakley? He wants to make sure “Santa” sees this to make sure his friends wake up to a gift on Christmas morning.

Please send me an e-mail at sarahsavickas@yahoo.com

If you are a business, school, youth group, girl/boy scout troop and are willing to collect toys or donations for toys, that would be amazing and such a wonderful way to give back.

These kids deserve to have that one thing that they’ve wanted all year long.

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Be kind, for everyone is fighting a battle you know nothing about

You know the saying, “Be kind, for everyone is fighting a battle you know nothing about?”

Really think about that saying.

Think about it before you judge the next person parked in a handicapped spot who gets out of their vehicle and walks to the entrance. 

Think about it when you question yourself about the the kid on your child’s football team who is standing on the sidelines every game, because he wants to play so bad, but it isn’t safe for him to play because he has a bad heart. It isn’t because “he must suck” or “must have gotten bad grades”. For him standing on the sidelines is the closest he will ever get to playing the game.

Think about it the next time you see a child at Disneyworld skipping the lines while you have been waiting a long time in harsh heat. How dare them, right?  Well they are on their Make A Wish trip because they just fought cancer – and won.

Think about it the next time you see a very overweight child in the grocery store riding in a stroller. While you are mumbling “so unhealthy, disgusting, lazy” to the person in line with you, that child had an organ transplant and is on steroids to keep them healthy.

Think about it the next time your co-worker is late.  She might look fine, but she just had to rush back home and change her clothes because her colostomy bag just leaked.

Think about it the next time you are at a restaurant with your friends and that one friend…you know, the one who comes to socialize but never eats?  Oh, and she is so thin!  She must be starving herself, right?  Wrong.  She has a feeding tube because she aspirates her food into her lungs.

Wondering why your child can’t bring a peanut butter and jelly sandwich to school?  Because the little girl in Mrs. Johnson’s class went in to anaphylactic shock and almost lost her life last month because a parent decided that their child should be the exception and be allowed to bring what they want for lunch no matter the consequences another child may face.

Not every illness has outward signs of what each person goes through each day. The pain, suffering, heartache.

Think before you speak, please.  Stop with the, “they look fine to me” statements and gossip.

Be kind, don’t judge.

September 28 – October 4th marks Invisible Illness Awareness Week.

What’s YOUR #invisibleillness?

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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.