The other things.

When I got Evan’s diagnosis for his very special heart and and his cleft lip and palate, I prepared myself for all the hard stuff we were going to go through.

We toured the ICU, looked at pictures of kids in recovery, researching all the drugs and medications…all of it.

Nothing will ever prepare you for those moments.  Those take your breath away, gut punching, world stopping, tear falling moments…but they are moments you try your darndest to encounter.

Now…there are things in this Heart Journey I wasn’t fully prepared for.  A new kind of hard….in the most normal of all days.

1. Teaching something that shouldn’t need to be taught:  This one is so hard.  There are things that are natural.  Instinctual.  Things ingrained in our beings to do once we take our first breath.  One of those things is eating.  In most cases, babies are born with the innate ability to suck.  It’s the reflex that prepares them to nurse on their Mommy or in the 21st century…some overpriced $7 baby bottle that is supposed to resemble a teet.  Well hello there, heart defect.  Oh…cleft lip and palate…nice of you to join us.  The combo of the two set us back in feeding.  Evan has been exclusively fed through a feeding tube since birth.  Now that we’ve gotten past the big hurdle of his first open heart surgery and he is technically more stable, our team’s goal now is cleft repair.  We are working so hard to get him oral fed so we can avoid a stomach tube.  I’m holding high hopes for Evan that he’ll be able to do it.  It is heart breaking to see a skill that should be so natural for a baby – sucking a bottle, drinking, swallowing even – be such a challenge.  Hunger isn’t an issue…my chunk a monk gets hungry…he just doesn’t understand how to eat.  His muscles in his face need training.  So, I do exercises with him all the time, I slap on a pair of gloves and do “stretches” on his cheeks while he screams and cries and has no idea why his Mommy is pulling and tugging at his chimpmunk cheeks.

2. Purposeful play:  Every second of our day is filled with a task.  Playtime is therapy time…all day long until Daddy gets home.  From the moment he wakes up and we meet eyes…to the moment he’s cuddling up with his blankie…we are purposefully playing.  Everything is calculated…how we play…using toys that are textured so he doesn’t develop an aversion to different things, playing on the ground suddenly becomes an all out physical therapy session, meal time and in between time become moments where we work on facial exercises, tongue exercises, I speak to him and do sign language and over exaggerate every letter so he can see my mouth move…all of these things because his delays need work.  And I promise him that we’ll get him to where he needs to be…even if that means our days are filled with work.  Evan spent the newborn stage of his life in the hospital.  I didn’t get to hold him often.  I didn’t get to give him bottles.  Our job was to keep him alive…and we did that. Now, we are home and suddenly our lives are full out work.  It’s no joke.  We leave our house everyday between 6-6:30 AM and battle rush hour traffic to get to the hospital for therapy 5 days a week.  We go so early to avoid as many kids as possible…the less kids…less chance of exposure.  We hang out at the hospital between therapy sessions and are home around lunch time…you get it.  I do take moments to just cuddle with my sweet boy…I do…but we make use of every second of the day.  It’s hard to think that my time with my baby…is work.

3. Pissed off at babies and their parents:   I get angry at other babies. I do.  I see them surpass Evan developmentally…and I actually get angry at the 4 month old cooing thing…because he/she is holding a bottle and sucking down milk like it’s nothing.  I feel rage when I see babies half Evan’s age do things he can’t do.  Ok..I don’t turn into the Hulk or anything…I just get really upset and angry that Evan works so hard and he’s just not there.  I also get frustrated when parents complain about things that I’d kill to have happen…like having to make another bottle because the little one sucked down the first so fast.  I have a hard time when other parents say to me,”I know it must be hard…I have a child who’s teething and I’m up with them all night.”  Really?  Because being up at night monitoring Evan’s breathing, checking on his oxygen levels and listening to his heart to see if the sounds change is a wee bit different than holding a cold rag up to your child’s mouth. I can say this because I have a heart healthy daughter that I did all the normal things with…this is is waaaay worse.  Please friends….it’s not “all relative.”  It’s ok for our “hardest days” to be different….

4. The pick a kid:  Choosing kids is never easy.  It’s not natural for a family to be split.  And often…that’s how our days go.  We choose which kid, when, where.  We divide and conquer as a parenting unit.  I miss Iz. Craig misses Evan. I miss Evan.  Craig misses Iz.  I miss Craig.  I hope Craig misses me 🙂  We turn down a lot of invites if I know the outing will be too hard on Evan…just so we can have days of our family of four.  Soon…hopefully after cold and flu season…our outings will be more normal.

5. Pangs of pain that follow jumps of joy:  I celebrate every little thing Evan accomplishes.  I cried today when he was able to suck down 15 mls of formula in 30 minutes.  I cried when he took the bottle instead of yelling at it or throwing it across the room.  I was so happy in that moment…then I felt the pang of pain…the little stabbing, gnawing feeling of…”we still have such a long way to go.”

 

Those are just a few things that are hard for me to deal with…you know..besides the obvious.

Please don’t see it as complaining…you know how incredibly thankful I am for this moment.  It’s just these things that are the little road blocks of this journey that I had no idea would feel so great.

I will joyfully take these hard moments.  I will.  I just need the strength to get through the hard.  I need a lot of it.  I’m emotionally, physically, and sometimes…spiritually weak.

And that’s where my unicorns come in.  Thanks again guys.

Comments

  1. Sometimes strength is about being willing to get up every day and looking our challenges in the face and say, “you know what? i’m ready for you. time to make the most of this day.” Sounds to me like you have become a warrior, too. And not only does it set the tone for your family, it helps inspire others. I know I feel inspired today. Thank you!