Tips for Surviving a Hospital Stay

Over the past 4 years we have cozied up at the hospital more than a few times. Anything more than one time makes a person an expert (so says the blogs and Google on the World Wide Web). Therefore, as an expert of hospital stays, I feel it is my duty to share tips for surviving. I mean that is what we as humans do now. We share everything because once we do it one time we know more than medical doctors or people who devote their life to research. Not just anyone can handle an overnight (or nights) stay at a hospital. And only the strongest will survive. Warning, some of this may shock you but it is important for the future of our children. Remember, one tiny unhappy moment in a child’s life will most likely ruin them forever.

Tip #1 - Do not post on social media about your child being sick

It is important you stay offline and focus solely on your child’s care. Posting status updates will lead to people saying things like “oh no, poor guy, feel better” which leads to your child thinking they did something wrong and that you are disappointed in their choice to be sick.

Tip #2 - Do not take pictures of your child while sick

It’s an invasion of privacy and only the best pictures of people should be available to the viewing public.

Tip #3 - Do not turn the television on at anytime

As a parent you should only be reading books and playing educational games with your child. If not, there is a chance that child will get addicted to television.

Tip #4 -If you are one of “those” parents and you MUST have the television on make sure it is only kid focused TV

Keep the news off as it can be very upsetting to children and talk shows are just trash so no talk shows.

Tip #5 - During your stay only focus on your child

This is not a vacation for you. Do not read magazines, do not shop online and do not watch TV if your child is awake.

Tip #6 - Do not sleep . . . ever

Make sure you are always awake. A doctor or nurse could walk in at anytime. If they see you are asleep they will assume you sleep at home and no good medical professional will ever allow a child to go home with a parent who sleeps. Ever!

Tip #7 – Do not bring items from home

When a child sees an item from home they will start to associate being sick with that item and therefore they will never feel comfortable at home again and you will have to move.

Tip #8 - Do not get into bed with your child

If the chair next to the bed is uncomfortable  . . . deal with it. You are a parent. You live for your child and nothing else.

Tip #9 – It is VERY important to only eat the healthiest of food

Fruits, vegetables, protein, fresh kale juice, vegan, gluten free, soy free, and dairy free are the only things that should be allowed in your child’s room. If it’s not made with 100% virgin coconut oil mined from coconuts from local farmers it should be thrown out immediately. 

Most Important Tip

Snuggle with your little buddy as much as you can. With no other distractions it is the best time to be cozy with your sick little bug.

Please feel free to use this research in medical papers and thesis dissertations.

Will it be a House or a Home?

HGTV has single handedly made the IDEA of buying a house an adventure. As well as making the phrase “something to consider” my least favorite saying in the English language.

Watching House Hunters or Fixer Upper helps us dream of an updated life full of Shiplap and open concepts. Yet, there is big piece missing in each of these shows. What are the neighbors like?

No matter the budget you cannot buy your neighbors. $300,000 might not get marble countertops but your neighbors might be your future besties. Whereas, a million dollar budget gets you a room dedicated solely to wrapping gifts but your neighbors are boring. Neighbors are the one element in buying a house that can truly make your house a home.

When we made the decision to move from the city I was ready for the ‘burbs. Third floor walk up with no elevator plus two kids equals time for a backyard. So we started the hunt.

House hunting is way cooler with a soft voiceover and cut away shots than it is in real life. Wide angle lenses do to houses what Photoshop does to magazines. It hook’s ya then disappoints ya when you see the real thing.

Thus we began the next step of narrowing down our suburbs and putting together our wish list. While my craft room (I don’t craft but in my mind I do) was pushed further down the list the idea of a good community was at the top. With each house we looked my nerves started to grow. I could not understand why I was so nervous. According to HGTV this should be an exciting journey with lots to consider but it was scary for me. Why?

Then it hit me as I was looking at the website of a potential school. This would be the first time we would be introducing JD to people who did not know us prior to meeting JD. Up to this point, everyone who had met JD pretty much knew of JD before he was born. JD was just another Gawel kid  . . . not a kid in a wheel chair, not a kid who is tube fed and not a kid with special needs. Just a Gawel boy. But now we would be going into an environment where people will “see” JD before they got to “know” JD . . . and that terrified me.

After 9 months of living with my parents, 9 months of searching, and two months of renovations we moved into our house when I was 37 weeks pregnant with Kaitlyn. Sidebar: the above-mentioned situation is not recommended.

Nate started meeting the neighbors first as he would go to the house in the morning before work to help with the reno. Everyday he would come back and tell me a bit more about the people on the block. And everyday I would wonder “what will they say when they meet JD.”

I struggle when introducing JD and having a desire to immediately answer the unasked questions hanging over the conversation. I want them to understand JD before they judge just based on the “book cover.” The prospect of meeting the neighbors frightened me as I did not know how to weave JD into the conversation.

Do not get me wrong. I love talking about JD. I love opening people’s minds to this whole world that you don’t know exists until you are involuntarily thrown in. I love people asking questions and inquiring about JD and everything that goes along with him. But how do I get strangers to understand that without making it awkward?

Approach #1

“Hi, are you the new neighbors on the block”

“Yes, we are. My middle son has Wolf-Hirschhorn Syndrome, which is super rare and leads to medical complexities and global delays. He does not walk or talk and he eats via tube in his stomach. Ask me any questions you want . . . . oh and my name is Jen.”

To which I expect the neighbors to say, “your kids seem great but you are super weird.”

Approach #2

Act normal and get over myself.

Luckily for my neighbors (and our family), I chose Approach #2. And it worked! Yay! JD has been integrated into our block seamlessly with each family really embracing him with open arms.

One neighbor is JD’s Cubs buddy. JD is the first person he says hi to before he launches into his analysis of the Cubs game. When JD is not discussing the Cubs, he is answering questions about school and girlfriends from the neighbor's wife.

Another family has 3 girls who include JD in everything they do. If they are playing secret spy with Connor, they make JD the General who gives them the orders running back to ask him for their next mission. 

"Hey mom, can JD stay outside with us while we talk?" Always, always, always

Or there is the time at the 4^th of July party I was holding JD as he slept unable to indulge in the feast. As our big, soft-spoken neighbor finished his meal he said “okay, I’m done, I’ll take him so you can eat.” Wait, what? No one ever asks to hold JD (nor do I expect them to).  But the fact he offered left my eyes a little watery. 

Or the neighbor whose kids are a bit older and she gave me her cell the first time I met her so if I ever need to run to pick up Connor and don’t want to take JD out in the cold she will run over and sit with him. 

Or the little 2 year old boy down the street who thinks the world of JD because he has the coolest wheel chair and watches with envy as JD rides the bus to school everyday. 

And it’s not just the block but the whole community. JD’s teachers tell me how people are always saying hi to him in the hallways “and we have no idea who these people are but they all know JD.” It makes my eyes watery again to think about.

It’s very easy to pass over JD because he does not give the same feedback you expect from kids his age. Yet, everyone still says hi and asks about his day. Everyone makes eye contact and complements his clothes (the fashionable 9-year-old next door cannot talk enough about JD’s clothes and shoes or his super cool hearing aids). Everyone makes sure he is part of the group. And everyone treats him the same.

Some people wish their child with special needs was more like other kids and not so different. For me that is a fruitless wish. I don’t blame them but that’s not me. My wish is that people treat JD the same as other kids. Adults talk to babies and toddlers who do not respond so why not include JD in that mix of kids. Hell, there are plenty of teenagers who don’t respond when you talk to them. What’s the difference?

After nearly two years in this house we have made great friends (I have not even told you about the girls night where all the ladies on the street stayed out until 2am on a Thursday) and built a great community. Our house started out as our “10-year house” until we upgraded to something bigger and better. But at this point no matter how big our budget gets (we did not win the billion dollar Power Ball) it will be hard to find a better HOME then we have right now.

He loves his brother soooo much

I promise I do not ask them to pose they just do that

He always wants to push his brother

These are not the Gawel kids, these are secret agents

Our neighbors had a pumpkin craving party for the whole block and the kids love it!

Take Me Out To The BaaaaaaallllGammmmme!

"Take me out to the ball game....take me out to the crowd!"  These are words I sang many times at Cub's games while Jen and I lived our childless life in the city.  Even after kids we were lucky enough to take JD and Connor to a game and meet, then Cub David DeJesus, during warm-ups.  Jen and I often talk about how exciting it will be to watch Connor play sports as he grows while having JD with us cheering him on.  Same with JD attending Kaitlyn’s events to support her athletic adventures. However, In all honestly, I never really let myself picture JD playing any sports because…well, I just could not picture it.  But all that changed on Friday.

JD has been attending school now for a few weeks.  As Jen wrote in the last post, JD has been thriving and loving it.  He comes home happy, exhausted and most times asleep from the bus ride.  Teachers give such raving reviews and you can really feel their love for him. However, that is all for another post.  This is about my realization that I have been limiting my visions of what JD can enjoy while growing up.

Last Friday, I took off from work and drove with Jen down to the baseball diamond with the Kaitlyn and Connor meeting up with the grandparents. JD had a large cheering section. We walked around meeting other parents and talking to his teachers as we waited for another the other school to arrive to battle JD “Stretch” Gawel’s Fairwood Frogs! I found myself wandering around with Connor before the game, not because I was bored (the game started almost an hour late) but because I found myself getting anxious.  Not the “before a big presentation” anxiety or the “right before one of his surgeries” worry…but the “oh man, I hope he is ready for the game” excitement.

JD's cheering section

Before any real baseball game begins, there is the National Anthem! This game was no different. Sitting out on the diamond with one of his classmates, was JD with the American Flag while a recording of LeAnn Rimes belted over the speakers.  While her voice was pre-recorded and overly produced (Jen prefers the Whitney Houston or Carrie Underwood versions) our emotions were pure and happening in real-time.  I was proud, VERY proud.  There sat JD, the center of everyone’s attention, just hanging out waiting for the game to start not realizing how many people were there believing in him.

JD out for the National Anthem!

Fairwood Frogs Line-Up

After the Anthem I paced back and forth waiting for JD to bat.  Yes, one of his teachers would physically swing the bat.  Yes, one of his teachers would be his legs and push him around the bases.  But nothing could lessen the amount of pride and love I had for JD at that moment. Did I mention he hit a home run!  The rest of the game flew by and we enjoyed a quick picnic afterwards.  Nothing else really mattered except Jen and I feel JD really had a good time. I mean a REALLY great time.  There were many moments of smiles and he never coughed or whined once.

Getting Pumped for the Game!

About to go to Bat

Calling his shot

Rounding first

Proud family (minus Kaitlyn who was sleeping) of the MVP

While I am sure JD learned something valuable that day…like which way to go around the bases, I learned that I have been looking down a narrow tunnel of what I can imagine JD doing.  I have always been thinking about one day forward, will he learn to communicate through a switch, can he say yes/no, and will he ever sit up on his own?  I now realize I need to think about JD in a different way as well.  Will he like baseball or soccer?  Will he enjoy musicals or plays?  What will he look like in a graduation gown?  Will he want to play video games with his friends or just hang around outside talking about who knows what? JD is more than a child that needs our support and extra care.  He is a child, a child who wants to hang out and do kid things.

“For its root, root, root for J…D…”

Resting after the game.

School Boy

August 2012

“Early intervention makes such a increased difference in medically complex and delayed kids.”

“You will need to make sure you have early invention for JD from birth.”

“Kids who have early intervention do much better in school.”

After discovering JD’s diagnosis friends whom have kids with special needs, or friends who are therapists/specialists, continued to talk about the importance of early intervention. Sure, I had heard people throw around how beneficial early intervention was for kiddos.  I assumed as parents, Nate and I would intervene early as well. Duh, why wouldn’t we start working with him as soon as we could?

Turns out as I walked around touting how we, of course, would “do” early intervention I knew nothing about what I was saying.  As I discussed early intervention others discussed Early Intervention . . . notice the difference? Lowercase ‘e’ and lowercase ‘i’ versus capital ‘E’ and capital ‘I.’ Oops.

As JD was being discharged from the hospital they go over a lot of paperwork and one piece discussed the next steps for Early Intervention (capital ‘E’ and capital ‘I’). “Oh so, that’s like an actual thing?”

E(e)arly I(i)ntervention to me meant as parents we needed to intervene early in JD’s development to ensure we could provide him the tools to grow and progress both mentally and physically. However, Early Intervention is actually part of a state run program to ensure children from birth to three with diagnosed disabilities or developmental delays receive support to maximize development. Basically, they offer services such as a variety of therapies for kids who need extra help. Who knew?!?!

A week of being home brought letters, phone calls, and lots of information that I did not want to read. So in August of 2012 I cleaned the condo, bought fresh flowers, and actually did my hair for our first meeting with our Early Intervention (or EI as the in-crowd calls it) coordinator Holly. To spare you the details here’s the gist:

Step 1: Meet with you assigned coordinator to assess if your child qualifies for EI.

With JD’s diagnosis he automatically qualifies then you add his cleft palette, clubfoot, ASD (hole in his heart), lack of oral eating, it goes on and on and on . . . and JD becomes the top candidate for EI.

Looking back I never realized how I would go back to this moment many times as it was the first time outside of the hospital I would be asked to detail all of JD’s long history for his short 4 months of life.

Step 2: Meet with EI coordinator and four different therapists (each specializing in their own field) to evaluate which therapies JD should receive.

This is a very strange step as 5 strangers walk into your home to tell you what your child can and cannot do. Some parents take this step very hard but for me it was more confusing. We had been home for less than a month still adjusting to life with two kids and these five strangers were talking about the next 3 years of our lives. They spoke as though I should understand what they were saying and they spoke to each other like it was all business.  Shame on me as I sat their smiling and nodding along with the 5 strangers when my head was scrolling with questions.

Coordinator: “PT once a week, OT once a week, no need for Developmental just yet and let’s just start Speech at 2x a month. Do you have any more goals? Anything else you think we should add? What do you think mom?”

What I actually said: “No, sounds great.”

What I was thinking and should have said: “Huh?”

Thus began our journey with EI.

Step 3: Receive phone calls from 3 new strangers trying to set up time to meet each week for the next three years.

Confession . . . I took longer than normal to get back to the new therapists. Everything happens all at once and your life as a weekly Therapy Mom starts very quickly.  Consequently, I stalled. While I understood there was no way around being a Therapy Mom I was not yet ready to open the floodgates.

I’m not sure when I finally worked my way up to our first therapy appointment but it was not as hard as I thought. EI therapy is similar to running a long distance, the first time you are nervous, not sure of your abilities, not sure how far you will make, wondering if you need to stop . . .I had no doubt JD would perform like a rockstar but what about me? After the first therapy session it just got easier. I will spare you the details of 3 years of hour-long therapies anywhere from 1 to 5 times a week. The EI therapist slowly became more than just a routine; they became part of the family. 

Sitting practice at 2.5 years

Last Speech Therapy session with the fabulous Katherine - almost 3 years old

Last Occupational Therapy session with the amazing Kara

JD coloring for the first time and loving it

*************

March 2015

As JD is just two weeks away from aging out of the EI program I am holding on with white knuckles to that title of Therapy Mom. After 11 different therapist, 500+ hours of therapy, 15 different pieces of equipment, 50+ developmental toys, 15 group meetings, 10 different evaluations, 100s of medical terms and daily practice  . . . I am a PROUD Therapy Mom.

Just when I get the hang of it, just when I love the routine, just when I think we have the absolute BEST team in place for JD everything stops. As of April 2, 2015 I will no longer be a Therapy Mom as I transition into School Mom.

Yep, the Early Intervention program starts at birth through their 3^rd birthday. On April 1^st JD will be in EI on April 2 he will officially age out of in-home therapy and he will start to attend school. My baby who has never been with anyone besides family (and Therapists) will attend a full day preschool program Monday – Friday.

Back in November, Nate and I met with the EI social worker to begin the transition process from EI to school. Turns out our school district absolutely ROCKS at this Special Ed thing. As this lovely woman sat at our table explaining the potential programs for JD, Nate and I did everything we could not to shed a tear. Slowly this very large weight lifted off my shoulders as I heard her say “you guys are in the best school district for JD.” Interesting, I did not realize how heavy this boulder was on my shoulders until it was gone.

As with everything we do for JD there are a few steps.

Step 1: Referral from EI to the school district

Step 2: Evaluation of JD’s abilities

The evaluation phase is based on which services JD is currently receiving through EI. Some kids might have one or two specialists in the evaluation but JD never likes to be outdone so we walked into a room of eight different specialists with more filtering in throughout our meeting.

A peak inside my heart will show that with each new situation my heart beats a little faster.

What is their first impression? Ba-bum

What do people think about him? Ba-bum, ba-bum

Will they treat him the same way the same way they treat everyone else? Ba-bum, ba-bum, ba-bum

Will they judge his abilities? Ba-bum, ba-bum, ba-bum, ba-bum

Will they know how to work with him to get his best potential? Ba-bum, ba-bum, ba-bum, ba-bum, ba-bum

With each thought, my heart gets faster and stronger. But the one that makes my heart hammer . . . makes my heart rate skyrocket . . . makes my heart louder than Big Hair Band drum solo is . . .

Will they like him? Will they give him a chance in spite of his global delays? Will they treat with respect the way everyone treats Connor and Kaitlyn? BA-BUM,BA-BUM,BA-BUM,BA-BUM,BA-BUM,BA-BUM

Luckily, we have had nothing but support from family and friends but what about new people? Will they give him a chance before they judge?

I try not to be an anxious person. I enjoy new environments and meeting new people and . . . surprise . . . I am very social. Chatty if you will. But when it comes to bringing JD into a new place or introducing him to new people I get very protective. VERY PROTECTIVE. And I worry. A LOT!

Walking into the brightly colored room on a sunny March day pushing my handsome blonde hair blue-eyed boy in his matte blue wheel chair wearing his maroon football sweater with J. Crew rolled sleeves, jeans, and plaid shoes my heart was pounding out of my chest.

I scan the room of the 4 therapist, 1 teacher, 1 social worker, 1 nurse, and 2 directors searching something.  Searching for a flicker, a gaze, or a flash alerting me to the moment they realize JD is different. More different than most of the kids they work with. I focus on the eyes as the eyes tell it all. People can control the expressions on their face easily but it’s the eyes that betray the emotions.

I scanned, I searched, I looked, and I judged assuming these ladies would in turn judge right back. I  . . . was . . . wrong!

The flicker I saw was a smile that reached the eyes because they were excited to meet JD. The gaze I noticed was the complement of how stylish JD was dressed. And the flash I witnessed was enthusiasm to start working with JD.

JD’s school evaluation was the beginning of what would a very smooth EI to school transition. A process which is known to be difficult, emotional, dreadful and full of fights was genuinely a very pleasant and fulfilling experience for us. 

Charming the ladies at his evaluation

The ladies charming JD

***********************

April 6, 2015, 8:22pm

In 8 minutes I will begin packing my baby boy’s school bag. Carefully running through my checklist to insure his bag is fully organized and prepared for his first day of school. JD and I have already met his teachers, therapists, and classmates but tomorrow he will be there all by himself. Nate and I will drive him to school, walk him in, get him settled, and then walk out without him. My stomach is in knots, my heart is pounding, and my mind is spinning. JD will thrive in this environment and continue to look damn handsome while showcasing his new abilities.

Tomorrow will be a remarkable start to whole new chapter in the Gawel family story. From a surprise prenatal diagnosis of a rare syndrome very few doctors had heard of to a 3½ lb baby boy being delivered 4 weeks early to 3½ months in the NICU to many, many, many more hospital stays to wondering if he would make it to his 1^st birthday to now heading off to school as an adorable, healthy 3 year old boy. It has been a crazy wonderful ride and we hope you continue this journey with us!

Check the next one off the Gawel Adventure List – James Douglas’ first day of school!!!!

Brothers! Connor loves his brother

Happy 3rd Birthday to this kid with great hair

The thinker