Friday, February 19, 2016

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.

Wednesday, February 17, 2016

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 4th 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!