24 May

going to grandma’s

Posted by EJ in Dad. Tagged: , , , , , .

“Going to grandma’s” was easy for me growing up. Whether it was a stop after school or an overnight stay, I always looked forward to visits with grandma. We’d play rummy, eat food, watch movies, and generally have a good time. Plus my room at her house had a full size bed, which was a nice treat after livin la vida twin at home.

“Going to grandma’s” for EJ takes a bit more planning. Instead of being 10 minutes down the road as my grandma was, EJ’s is 6 hours up the Interstate in a car that I can only imagine will look as if a college kid is moving his dorm room back home.

Lorrie started the packing process last week, and that’s as much planning as it is actual packing. We want to make sure we know everything we need and that we’ll have it. We won’t be able to run to the store for a feeding tube or tracheostomy.

This is EJ’s first trip to Cleveland, and as excited as we all are for him to “go to grandma’s”, this trip is extra special because of all the people EJ will be meeting for the first time, including my grandmother, who turned 88 this year.

One of the loneliest realizations for me while EJ was in the hospital was that he may never meet his great grandmother. She just isn’t able to travel, and if you had told me in February when we brought EJ home for the first time (a 90-minute trip) that we’d be driving to Cleveland (four times as long) in less than four months I’d have thought you were crazy.

It’s important to me and Lorrie to instill the importance of family on EJ, and that starts now.

“Going to grandma’s” isn’t as easy for him as it was for me, but that doesn’t mean he shouldn’t know now how important a role model she will be in his life.

20 May

Who needs a nap??

Posted by EJ in Mom.

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I slept until 930 this morning! Momma won’t let that happen again because today I am the boy who refuses to nap. I’ll show her! :)

16 May

Mother’s Day

Posted by EJ in Mom.

My first Mother’s Day is officially in the books, and boy was it awesome! It was a wonderful day, spent with family & friends and feelings of being blessed beyond anything I could have ever imagined. EJ was able to make his first trip to Aunt Paula’s house and he had a great time being with his cousins. They still amaze me with the pure, unconditional love they have for this boy.

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Thanks to everyone who made my first Mother’s Day so special. Being a mommy rocks!

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5 May

Show me the ponies

Posted by EJ in Mom.

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The funny part of this picture is that it looks like he ‘s wearing a sombrero when actually it’s a fedora….just a little too big :)

4 May

More peas please

Posted by EJ in Mom.

This weekend marked a monumental first for EJ. His very first taste of baby food. Since all of EJ’s nutrition comes from his feeding tube, he’s missed out on the social aspect of eating. But on Sunday (with the doctors permission) we were allowed to give him his first taste of baby food.

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Eating is a use it or lose it skill. Often children who are fed through a feeding tube lose the desire to eat orally, so we use these little “tastes” of food to keep him interested. I’m not sure who was more excited, EJ or his mommy & daddy. There’s just something about feeding your baby that makes you feel good :)

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And while it didn’t go as beautifully as we’d hoped, (peas slowly tricked out his nose & eventually from his trach–a sure sign that the food still isn’t going where it should) it sure was a fun experience.

And it you were to ask EJ, I think he’d tell you it was exhausting.

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25 Apr

Community

Posted by EJ in Dad. Tagged: , , , , , , , .

As a Catholic white male, I don’t have a lot of perspective for what it’s like to identify with a group of people–whether that be of a certain sex, race, religion, or sexual orientation–that other people don’t always understand.

That didn’t change when we received E.J.’s 22q11.2 Deletion Syndrome diagnosis because I didn’t have anyone with whom to identify, but the need for it certainly changed. 22q affects about 1 out of every 4,000 babies, which–as I’ve discussed before–isn’t really all that rare, but 22q doesn’t have the awareness of other genetic disorders such as Down Syndrome.

That’s why attending 22q at the Zoo Worldwide Awareness Day on Sunday, April 22, was so important to our family.

We’ve interacted with the syndrome as much as we can online, talked to E.J.’s doctors about it, and Lorrie has met a few mothers, but nothing can replace actual socialization with other families who have been through some form of what we have.

The experience was a bit like the first day at a new school. We didn’t know anyone, but a lot of the families there already did. Of course everyone was welcoming, and having E.J. on our arms certainly helped attract people to us and break the ice a little bit.

One of the unique aspects of 22q is that each case is unique. We met one family whose daughter had cardiac issues but no ENT issues–which is basically the opposite of EJ.

One of the more comforting things we kept hearing were variations on the theme that it gets better. “The first year is the hardest,” one mom said; “I don’t miss that suction machine,” another said when watching us use an air compressor to suck saliva out of E.J.’s trach.

Overall, the best thing, though, was watching the older kids socialize, and, well, be kids. I often tell E.J. he’s my best friend, but deep down I’m saying a prayer that he has friends, plays, and can have fun with people who aren’t his parents.

Until that day comes, though, we’re so blessed to spend days with our boy at the zoo.

18 Apr

Photo fun

Posted by EJ in Mom.

I just realized we haven’t put many photos of the main man up lately…and I need to rectify that situation :) He’s growing up so fast and I swear he just gets cuter with time! Enjoy the pics

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One of my favorites from a few weeks ago

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His modeling shot :)

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So glad to have both my babies home at last!

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Working hard with OT

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Look who’s sitting in his big boy chair at the dinner table :)

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The smile that melts my heart!

17 Apr

The biggest test of all

Posted by EJ in Mom.

Some days I feel like I’m in the fight of my life with no ammunition. Like David, up against a giant with only a slingshot for protection. I wasn’t prepared for this battle and making the adjustment hasn’t been easy. I know this is the most important test of my life. How I face the challenges that lie ahead will make all the difference.

The last few weeks have taken their toll on this momma. I’ve been beaten down and worn. I haven’t been the mom, wife or friend that I’d hoped I would be. For a brief moment in time (okay 3 weeks to be exact) I let sadness move in and take over. I grieved. I cried. Just when I thought I couldn’t , I cried some more.

It seems that everywhere I turn there’s a new struggle. A struggle to get nursing help, a struggle to get EJ the therapies he needs, a struggle to sleep, to spend time with those I love so dearly. And the struggles have worn me down. I’ve become physically & emotionally exhausted.

It all started with our follow up appointments in Cincinnati a few weeks ago. I showed up at the hospital on cloud 9 sure that everyone would be as pleased with EJ’s progress as I have been. I expected to be met with “oh he looks great!” and “he’s doing so well!” but instead I was greeted by warnings of “social isolation” due to speech problems and the pity smiles of strangers. It’s heartbreaking to look in someone’s eyes & know that you’re the girl they feel sorry for. The beautiful, perfect baby that I see, they see as flawed. One lady even said to me “he looks like a lot of work”. To us, it isn’t work, it’s love. I love EJ just as you love your star athlete or your honor roll student. I’ll do anything I can to take care of my boy and feel proud & blessed to do it. And no, I don’t deserve a badge of honor for doing what I love. It’s all a momma’s heart knows to do.

So today I told sadness to pack up & move on. I made a promise to Ed & to EJ that I will rise to the test. That we will walk away from this life victorious, truly living every moment we’ve been given and that someday when the stranger smiles my way it will not be because they pity us but because they know we got it right.

10 Apr

Boys of summer

Posted by EJ in Dad. Tagged: , , , , , , .

Who knows what EJ will like to do when he’s old enough to have feelings on such things, but whatever it is I am committed enjoying it with him.

Until then, though, he will have to suffer through listening to the Cleveland Indians. God knows I’ve suffered through it so far this season!

Many of my interests–particularly of the gambling and/or sporting variety–can be traced to family members. I got into horse racing by going to Thistledown with my grandpa. My grandma taught me how to play rummy, and it was my aunt who taught me how to gamble on cards–high-low in the hole was a popular game around her table.

But as important horse racing is in my life or as much as I enjoy poker, nothing will replace the memories of growing up as an Indians fan and baseball player. My mom’s brother brought me to my first Indians game, but she brought me to nearly every one after that until 1994 when my birthday present that year was tickets to the first-ever game at Jacobs (now Progressive) Field, and she let me cut school to go with my friend Joe, who coincidentally has the same birth date (August 26) as EJ.

As with most things in life, it took me to be something for me to appreciate what it meant for someone else to be that for me. Mom didn’t just bring me to baseball games, she brought me to the stadium 90 minutes early, which meant no down time after work and eating hot dogs for dinner. I mean, she likes baseball, but I don’t know that it was five-hour-per-week commitment for her either!

The only baseball my mom saw more of than the Indians was my own team, which is kind of sad because she had to suffer through worse baseball than the 100-loss Indians of 1987. She wouldn’t tell you she suffered through it, though, and that was part of what made her involvement so special: She enjoyed the time with her son and being a part of something I enjoyed.

And that’s a big lesson for me as I prepare to raise EJ. Maybe he’ll love baseball or bowling or horse racing or poker but maybe he’ll hate sports and cards and want to play the violin or knit or act or tell jokes or juggle or train dogs or fix cars. Whatever it is, I can’t wait to enjoy it with him.

But for now we have the dulcet tones of Tom Hamilton to get us through what is shaping up to be another losing year of Indians baseball, but if UK fans can make it 14 years between championships then what’s 64 years between World Series victories?

25 Mar

The easy part

Posted by EJ in Dad. Tagged: , , , , , , , .

I had never changed a diaper before EJ came along, and for what I consider to be obvious reasons, I held on to the specter of stinky poo as the absolute hardest thing I’d have to deal with as a parent.

This was a coping mechanism to come to terms with becoming responsible for the well being of a human being—from keeping his bottom clean to helping him become a contributing member of society.

It didn’t take long to realize that changing a diaper isn’t a big deal not only because it isn’t but also because EJ’s condition gives us other things to worry about such as making sure he is breathing, that he’s getting his six doses of medicine daily, and that the hole in his stomach is providing him the nutrition that he needs.

Thinking about taking care of all that at home on our own seemed more daunting in the days before our discharge from the hospital than the thought of changing a diaper did before he was born, but as it turns out, taking care of EJ is the easy part, especially compared with making sure to take care of yourself as well.

One milestone I remember from the hospital occurred shortly after we transferred to Transitional Care and learned how to feed him using his Gastrostomy Tube (G-Tube). After months of watching nurses do something for EJ that most parents begin providing for kids in the first days of life, I finally got to provide for my son in this most basic of ways, and it was a true joy.

During one of our many follow-up appointments back at Cincinnati Children’s Hospital Medical Center over the past two weeks someone observed us, EJ, and all his equipment (double stroller, ventilator, suction machine, emergency bag, monitor, and diaper bag) and said, “He must be difficult to take care of.”

I’m blessed to be surrounded by family and friends who inspire me to be the best dad I can be, and the one thing all the parents I look up to have in common is they would still be the same great moms and dads to their kids even if they had a couple extra machines or tubes to lug around.

The difficult part isn’t turning on a machine a few times a day or having to spend a few extra minutes loading stuff in the car. Anything related to EJ is the easy part. The difficult part is taking care of yourself and being in a position to put him first at all times.

Spending an extra five minutes making sure EJ is comfortable and safe before leaving the house is no different than spending extra time to help with homework or read a bedtime story or change a diaper even though you know mom will do it 15 minutes later and you can pretend you didn’t know he had soiled himself.

EJ’s condition is for life, but so is good parenting.

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