Not Harder, Just Different.

I wrote this last Wednesday night. The plan was to finish it up and edit for posting on Thursday but a detour into the hospital delayed that plan. After that day I was going to just delete the post entirely but I’m glad I didn’t.  But I’ll get to that later…

 

Many of my blog readers are people who know me. Friends, family, nurses and well-wishers all looking for updates on Liam and how he’s doing make up a large part of my readership. Hi everybody! So before I begin I want to make it clear that I mean absolutely no offense to any of you who may see yourself or any of your own comments  in this blog post. Our household has been overwhelmed by the outpouring of support and all of the extremely kind words that have been sent our way in the past two and a half years (if you know us really well, then the last 6 or 7 years) and I don’t want anyone to think that we don’t appreciate each and every note, blog comment, facebook wall thingy, and face to face compliment.

We feel the love and believe me we send it right back. Even if we are terrible at sending out thank you notes and the like.

But here’s the thing…

We’re not that special.

I mean sure we’re pretty awesome, of course, but that’s always been the case. What I mean is that the comments about how amazing we are as parents and when people ask how we do it? Or tell us that they don’t know what they would do if put in our position.  I get that one a lot at work. Or the head tilt of pity accompanied by the “It must be so hard.” And I don’t mind it at all because I know that what they are saying is that they are proud of us and that we are doing a good job, and how could I be upset about someone telling me how inspiring I am right?

Yeah, I’m a Dad. That’s all. I go to work to support my family. I feed him. I give him medicine when he needs it. Every now and then I even change a diaper. I won’t even try to make a comparison to how much work Karin does along those lines suffice it to say that while she is a Super Mom. She is a mom. Not a saint. (yet.)

We are a family. Mom. Dad. Boy. Just like any of yours.

Sitting on the couch watching TV when I should be reading or writing doesn’t feel all that inspiring. Neither does sleeping late instead of getting up early to help Karin by cleaning the house before I head to work at the crack of 11:30am. Not sure my laziness inspires too many either. So I just want to put this out there to lay some of these rumors and misconceptions to rest.

First of all Karin is the Greatest Mom in the World. Without a doubt.  That rumor is true indeed but it’s not because she has spent close to 12 months of motherhood next to her son’s hospital bed. It’s because her heart has so much compassion and love to give that to keep it bottled up inside would actually cause her harm. She would be an incredible mother regardless of Liam’s diagnosis.

And Liam is the Greatest Son in the World. Another one that’s true but that’s not because he’s got a diagnosis and sever medical needs. It’s because his smile can change the way you look at the world.

But other than that, as far as families go. We’re not so special.

It’s certainly not harder than you have it. It’s just different.

I have said many times on this blog that when it’s done right, all parenting is hard. It makes no difference whether your child has a diagnosis, chronic illness, bad attitude or blue eyes.  I have said it before on this blog — none of us as parents have it any harder or easier than anyone else. We all have our own sets of challenges and worries. Raising a child is a venture fraught with worry, heartache, stress, and fulfillment. Both the most difficult and most rewarding thing I have ever done. But none of that has anything to do with Liam’s chromosomal unbalanced translocation and the challenges it brings with it.

It’s not harder, Just different.

Sure, you don’t have to learn how to set a feeding pump and replace a leaky g-tube button. I don’t have to get a fussy 3-year-old to eat his veggies.

So you don’t know what its like to co-ordinate at least a dozen schedules of therapists, doctors, nurses, and equipment deliveries. We don’t know how to co-ordinate the schedules of more than one child yet. Somehow I think that’s even more difficult but plenty of you seem to do it. (don’t get me started on families that have more than two children. The transition from a man to man into a zone defense baffles me. You parents are good.Oh, and single parents too! and military families, well you see my meaning.)

Does having to rely on subtle cues like eye movements and facial tics to communicate with your child scare you? Not half as much as a toddler who just learned the word “No” scares me.

Not harder, different.

Parents love their children. That’s what we do for Liam. Parents ensure their children are safe and healthy. Check and check. No more, no less than any other family,

 

***** WE INTERRUPT THIS BLOG POST TO BRING YOU AN UNSCHEDULED HOSPITAL STAY*****

 

And that’s as far as I got.

That’s what I had written when Karin called me at work and said “I’m calling 911, I  have to get him to the hospital”.

That’s exactly how it looked when Liam rolled out of his PICU room to the OR at 6:30am Friday morning.

It was probably soon after that bed rolled away that I thought to myself, “well, I guess now I can delete that frigging blog post.”

Fuck it.

 

This is Hard.

 

Foolishness.

By the end of Friday I was reminded and reassured of everything that I had typed above. It was Hard. But not Harder. (I know this is a semi-serious post but…That’s what she said!  . . .  I couldn’t resist)

I will speak in general terms because each of their stories are their own but exposure to the other patients around you in the PICU is inevitable. You can’t unsee the things that are glanced at in other rooms when walking by and nothing can distract a person from knowing there’s a code blue in the next room. Families meet in waiting rooms and other common areas, but even when they don’t meet, it’s difficult to fully prevent overhearing things. We’re all in it together though and there’s enough mutual respect that people don’t usually stare.

So as a matter of perspective and simple human nature it’s easy to count your blessings when your child is not the serious case in the PICU. Especially when you can remember being that case. The child that has so many med pumps hooked onto IV poles that it looks like a Christmas tree of plastic tubing. The child with a team of residents on guard at the window watching for even the slightest change in heart rate and respiratory status. The child with the crying parents.

Yeah, being the family of that child is hard.

Thankfully we are not that case for this stay. There are few very serious cases in the unit with us right now. I don’t know anything at all about the details of any of them, but I can read the signs of their complexity.

I do know that each and every single one of them are different from the other. The pain, and the stress, the long-term prognosis, and the hope — all different from one to the next. Becoming that case can come with a lifelong of chronic illnesses and hospital stays just as much as it can come in the blink of an eye.

A bouncing baby boy with CP.

An athletic junior high school girl who nearly drowned.

A 10-year-old boy paralyzed since he was 2.

A high school student who was the victim of a shooting.

The young lady caught in a house fire.

Do we really have it any harder than any of them?

Not at all.

Not Harder. Just Different.

People do what they do for their kids. Karin and I are no different. All we want in this world is to give Liam everything he needs in this world to achieve his potential.  Isn’t that all any of us would do?

Isn’t that any of us ever can do?

 

9 comments

  1. This post struck a lot of chords with me. But as I got to paragraph 8 of my response, I realized I was hijacking your blog! So I copied it and saved it for future possible use and instead I’ll just say ‘I think you’re very special, even if you don’t, so Nana-Nana-Boo-Boo-Stick-Yer-Head-In-Doo-Doo!!!’ and leave it at that. 🙂

  2. As a “mom”, “mother-in-law” (the best I might add) and “Grammy” I can still be proud of you and Karin, but not any prouder than I am of Kathy a single mom doing her best everyday to give Aidan a good secure life, or more prouder than I am of Don, the awesome father of 4 beautiful girls. All of you are parents that are amazing and I love you all and am so proud to be the mom of 3 of you and the mother-in-law (the best I might add (except maybe for Sue) of two of you.:).

  3. Oh your whole post is the story of my life! When Jax was trached I remember a boy coding across from us. They were hooking him up to ecmo and I remember thinking its nice not to be the sickest kid in the hospital. To be there for a fairly simple surgery and were gone. I do remember the days of wondering if my son would survive the next several hours. Sucks!

  4. As I read this post in a “much too quiet house”, because my special girl is asleep at her grandparents, I want to add that God chooses special parents for special children and your family certainly solidifies that belief. Your family is in my thoughts, best wishes to Liam for a safe and speedy recovery.

  5. This is a beautiful post.

    And you’re so right. Ten years ago, when we were devastated that our 5 month old was having “routine” open heart surgery, there in the waiting room was a family whose child was having brain surgery. We got to leave the waiting room after 5 hours- they were still there. At 2am, in the elevator on the way to the 24 hour McDonald’s, I met a man who was chuckling at the hallucinations his little girl was having on chemotherapy. These random encounters with strong, brave, kind strangers changed my perspective on what it means to be lucky.

    This life has allowed us to meet all the smart and dedicated therapists, doctors, nurses and support people we wouldn’t have known, we’ve learned how to organize, prioritize, give shots!, analyze and make really important decisions, try to find humor in the ordinary and forgive our own humanity.

    Thank you for giving me the opportunity to remember these lessons and my new favorite one:
    It’s not harder for us, just different.

  6. After we got our daughter’s diagnosis, one of the first things my husband said was that while it will make our lives different, it won’t make it worse. I like your perspective and really look up to your blogging. Thank you!

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