In My Defense: Why it May Seem I’m too Harsh

I hear it quite a bit.  Normally people are very nice about it.  “You know, most of the people really are well meaning,” they say.  Or more often than not, it’s a comment on this site or somewhere in social media guiding me to be more patient with those who are trying to support me with the words that just stung so badly.

Let’s be honest, this blog is full of posts … especially the most popular posts… filled with “Please don’t say this about my child / my experience” type posts.  The top five shared posts on this blog all fit in that category: “Don’t tell me to get over it“, “Don’t tell me most of these kids catch up“, “Just wash your hands and don’t argue with me about it“, “Never, ever tell me it’s good for my child to get sick” and “Even if you are a preemie parent, don’t assume we hurt exactly the same“.

Some days I look at that list of most popular posts, and even I think, “Tatum, you are a complete rag.  Lighten up.  Don’t be so sensitive.”  And then I’ll go back and read those posts and I think…harsh or not, it’s really how I feel.  The fact that they are very well read posts, tells me it’s also how many others feel.   So, I wondered…why?  Why am I, and seemingly many other preemie parents, so sensitive.

I can’t answer for the universe of preemie parents…but after some reflection, I can answer for myself.  Each and every single one of them comes back to one thing…

I desperately want people to ACCEPT Owen…me…our family and this situation.

I want people to accept that our situation is different.  I want people to accept that we make the decisions/requests that we do, not because I’m psycho-mom, but because our situation IS different.

The reason that acceptance is so important to me – the reason that I struggle to let it go and the reason that I sometimes get a really feisty about it is that I want people to…and I really fear they won’t…accept Owen, not just today, but also for whomever he becomes.

Every time someone tells me that it’s okay for my child to get sick, or that I’m too over zealous on hand washing and vaccinations, or that their situation is exactly like ours, or that I just need to move on because these kids all grow out of their issues…those comments tell me that people don’t accept where we are today.  And if they don’t accept where we are with a cute, smiley little toddler (who looks “normal” but still has significant needs)…If they can’t accept this boy, then what about the future young man?  When he’s a pimply faced teenager, or maybe a somewhat awkward adult, or he can’t run as fast as the other kids or eat what the other kids are eating … will he be accepted then?

When it matters to him.  When Owen’s happiness can be impacted by other’s thoughts about him…then will they accept him?  Because clearly, his situation…the realities of it…they aren’t accepted today.

I accept that Owen will very likely have life-long differences.  I don’t write those words because I have given up hope – we absolutely will continue to push Owen to be the best Owen he can be and the fact is, I think that Owen is, and will be, amazing.  I write those words because I ACCEPT it.  Because I ACCEPT Owen…with whatever his difference(s) turn out to be…he will be okay.  Maybe not everyone’s definition of okay, but my definition of okay and hopefully, his definition of okay.  I don’t just love him…I accept him.  I want other’s to accept him too.

My biggest hope and dream for both of my sons is that we are able to give each the resources and support to find their own version of amazing and for whatever that version is, he feels accepted.  That’s what every parent wants, right?  Our kids to be accepted – and ultimately, to accept themselves?

So yes, I know, I can be a rag who is sometimes a little harsh towards people who probably didn’t mean harm with their words or actions.  I promise, I will continue to attempt to accept that sometimes, a lack of understanding isn’t a lack of caring.  At the same time, I ask that when you hear that mama bear in me roar that you realize behind it is simply a mom who desperately wants her family…especially her children…to be accepted.

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Photo shared with permission. All rights reserved, Pichette Photography, LLC.

To My Child with Special Needs

Over the weekend, I read the post The Pain of Disability by Kerry at Transcending CP. (You’re following her by now, right? She’s an amazing 19-year-old, former preemie and is a triplet who has CP and the gift to write). In her latest post, Kerry shared the hurt she has caused her mother. I had a visceral reaction to the post. I wanted to respond, but it wasn’t working from my phone, so instead, I emailed myself and am posting that message here. In short, I wanted to hug Kerry and I wanted to hug her mom and I really wanted Kerry and Owen and Jack and US Boo and UK Boo and Tucker and every child with special needs to know this:

To my child with special needs,

It’s my honor to be your parent. I hate what you have had to go through…but you know, for ME, I wouldn’t change a thing. Every day, I see a miracle take place. I see something happen that maybe shouldn’t have. To be apart of YOUR life. I am privileged and couldn’t be more proud.

I won’t deny it, you will see that I have hurt. Seeing an innocent child go through what you have had to go through…and the struggles you will continue to have…that’s hard for a parent to accept. To know that I’m the parent and powerless to make it…for YOU…all go away. Yes, that has hurt. However, YOU did not cause that hurt.

And, whatever hurt I have felt is far surpassed by the joy of each moment I get with you. Watching you try, watching each of your successes – big or small – celebrating how far you have come; that, my child, I wouldn’t change for the world.

YOU have not caused me any pain. YOU are amazing and have shown me a joy, I’ve never before knew existed. YOU have made me a better person.

EVERYDAY, I am thankful to be your parent.

 

Click image to pin post.

Click image to pin post.

 

The Little Things

There are certain milestones that gets nearly every parent excited. Like this one:

I could watch that video all day long.  That sweet voice and I love how he puts his hands over his face when I show my excitement.  Even better, when I do replay it (over and over and over) he says, “mama”

But sometimes, the little things mean just as much.  Like this:

truckThere is so much in this picture that makes me proud of Owen.

  • Look at the way he’s sitting.  Stretching across those belly scars that prevented him from sitting independently before he was 21 months old.
  • He’s using the toy appropriately.  It’s not in his mouth.  He’s not solely focused on the buttons that make noises and lights flash.  He’s pushing the truck forward, like a real truck would drive forward.
  • Speaking of those buttons, that he does occasionally push.  They are tiny.  To make them work, Owen has to point one isolated finger to softly jab the buttons.  You can’t see it in this picture, but that is some beautiful fine motor achievement, Little Boy!
  • He’s playing independently.  I did not pull the toy out and initiate the play or show him how to use a truck.  Owen found the truck and started playing by himself and decided for himself what the appropriate use of the truck was.
  • When I did sit down to take this sweet picture, Owen pushed the truck towards me.  He was initiating that I play with him.  He can play alone, which is important for his independence, however, he also has social desires to play with someone else when there is the opportunity.

I will watch the “mama” video 100 times with a huge, proud smile on my face, and I have the same pride when I see this picture of a little boy playing with his truck.  These, seemingly, small milestones, are just as important because they are the foundation of the next big thing to come.

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“Don’t forget to take care of you”…hmmph

This might turn into one of my whiny posts.  I think we all know that I do that on occasion.  Something gets under my skin, and I have a little vent fest on ANRC.  I’ve had more than one time where I’ve re-read a post a couple of weeks later and think, “[insert any four letter word here], you’re whiny, just get over yourself!”

So please, if this turns into a whiny post, forgive me in advance.  My promise to myself on this blogging journey was to share my truth.  Truth is often a moment in time.  And in this moment, this is my truth.

While I type this post, here is what I am enjoying.

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It looks like I’m taking pretty good care of me, right?  Prosciutto and Chevre Tartine and a glass of Pinot Noir.  Life.  Is.  Not.  Bad!

And it’s not.

But I’m also feeling really guilty that this is where I am.

Tonight was one of the evenings that happen about once a month in our house.  I’ve reached my limit with being confined to my home, so I tell Kyle that I will be writing my post from the local cafe after Owen is in bed.

We ate dinner as a family, I put Owen to bed and I told Kellen I was going out for some mommy time tonight, but would read him a story and have some cuddle time on the special round couch first.  The story finished and he started to cling.  I recounted all the fun things we did today and what a fun day it was and that he should spend time with Daddy for his last half hour before bed.  Finally, I wrapped him up in the blanket and handed him to Kyle.  Kellen squirmed out and ran to door.  He threw on my boots and his coat over my t-shirt that he had chosen for pjs tonight (pretty sweet, I know) and demanded that he was coming with me.  I explained that it was mommy time and I’d be leaving by myself.  We saw the meltdown brewing.  Kyle encouraged me with a whispered  “go!”, as in, “let’s get this over with.”  I walked out, waved as they watched me leave and drove to the cafe.  When I arrived I had a text that said, “major meltdown.”

My, not very grown up and really honest reply; “I can’t win.”

Yes, of course, I deserve the occasional night away.  But, why does it have to be so hard to get?  Last week, when Grandma Sandy was here I chose to paint instead of hit up the cafe for a long lunch.  Some say that was a bad idea, but I also would argue that sometimes having my house, the place I spend 99% of my time, in a state that makes it most enjoyable is just as good, if not better, for my sanity than getting a break for a couple of hours.  Truth be told, while I did much of the painting, I had the pocket doors to the playroom shut and Grandma took care of the kids.  Painting, in that case was “me time.”  I guess.

Towards the end of cold and flu season, I start to feel sorry for myself.  Valid or not, this is why:  Days upon days inside the house, the only outings are to drop off and pick up Kellen at school (I don’t even enter the building further than the foyer) or doctor or therapy visits.  During the day there is pressure to work on eating, fine motor skills, walking, language, giving feedings and giving love to Owen.  There are always many undone things on the administrative to-do list of Owen’s care; call in a weight, schedule an appointment, fill in paperwork for the new specialist, etc.  After school, I try to have a “project” which usually includes something very messy (Blue Goo was today) to occupy Kellen.  Just before Kyle is due home, I turn on the TV for Kellen and attempt to do the dishes (while Owen’s angling to climb into the dish washer) and assemble something for dinner, but truth be told, 50% of the time, Kyle ends up doing the meal.  We eat.  Then I get Owen ready for bed (30 minute process when does not get a bath) while Kyle spends time with Kellen.  At the end of the night I try to acknowledge the existence of the man who I love and every once in a while it’d be nice for my self-esteem to look in the mirror and have clean hair and a lightly made-up face looking back.

It doesn’t take a rocket scientist to figure out that I need to remember to “take care of me.” However, on nights like tonight, I can’t help but think, “how in the hell is that supposed to happen?”  When I take the time, it turns into a meltdown…or a sick kid…or….or…or.

As I sit here in the cafe, one of two things is happening at home.  1)  Kellen’s meltdown won’t stop.  If it goes on too long, Owen will wake up and he gets very upset when Kellen is upset.  Owen crying hard is a big mess.  He starts coughing and retching and it can turn into something like an asthma attack and can require a neb.  Kellen has a bit of unnerving reaction to these episodes of Owen’s.  Instead of being calm and letting you focus on Owen, he becomes anxious and wants you to make him feel better by paying attention to whatever he’s doing.  He talks loudly and gets in your face as you’re trying to stay calm and help your other kid breathe.  It’s sheer chaos.  OR  2)  Kellen’s meltdown stopped before too long and Kyle’s sitting on his laptop and catching up on all the work he needs to do from being gone on business most of last week.  He works almost every night after the kids go to bed.

Truth is, he needs some “Kyle time” as much as I need “Tatum time” and at the end of the day,  some days I take one for the team and some days he takes one for the team.  Most days, we are BOTH taking a lot for the team.

As I conclude my after dinner appetizer with an after appetizer tea and red velvet cake, I am finally starting to relax (I’m sure it was the tea and not the Pinot Noir…dumping my soul on all of you may be helping too).

Now that I’m calm and have thoroughly licked my wounds, here is how I know we will survive:

1)  This is a moment in time.

2)  This moment is much better than that moment twelve months ago.

3)  Some moments are just meant to be gotten through.

4)  Red velvet cake and mint tea (or maybe it was the pinot noir) truly can change your perspective…if only for a moment.

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