Tube Holes

While doing some online Christmas shopping, I came across this.  Cue me crying while people stare awkwardly (that seems to be happening more and more lately but, whatevs). Anyway, clothes with abdominal openings?! I liked target before, but now I want to take it behind the middle school and get it pregnant!
I had to cut a hole in almost everything Emmeline wore (especially her blanket sleepers) for years to accommodate her g-tube. I cut and I cried. At the time it was just another thing in a long line of things that I never imagined doing as a mother, and it sucked.
Why couldn't clothes exist with these openings already in them? Because it was weird and people weren't talking about it. Thankfully companies like Target now have these options available. And I think that's pretty awesome.
I even put her sliced up PJs in the quilt I made with her baby clothes. Because even though it sucked, it happened, and if I pretend it didn't exists then so will everyone else. Then people really won't understand how I got this way ;)


I Refuse

Today, I was asked to take Emmeline and leave a public location.  Why? Because her crying was bothering people. I was speechless. Well, honestly there was quite a bit of speech happening in my head, but it's probably best that it didn't come out at that moment.

The short answer? No.

The longer answer? I refuse.

I refuse to make my daughter feel more excluded merely so you can feel more comfortable.  She already has such a struggle processing her surrounding and doing her best to function "normally" that I will not let you make her think she isn't allowed to be out, when out becomes difficult to manage.

I refuse to let you edit the world into something it isn't. Disabilities exists. That doesn't mean people have to be alone. Instead of asking "why is that person making so much noise and bothering me?" maybe you should ask "why is that person making so much noise, I hope they are ok. Can I help?"

I refuse to let you make being out of the house something we can only do when life is good. There were literally years where the only place we went was the doctor. Part of this was due to illness and part was because I felt like we would bother people, be an inconvenience. I cringed at the looks and was exhausted by all the "I'm so sorry"s I would end up saying. Then I said, screw it! My daughter has just as much right to be here as you, and if you don't like it, you can leave!

I refuse to let you feel like you're that important. Seriously, who the heck do you think you are? Why do you have more rights to this location than my daughter? We are all people. Equal people. In the words of Kevin Malone "back off me".

I refuse to let you think my daughter isn't important. See above.

I refuse to let you shame an involuntary behavior.  Do you think my daughter is doing this for kicks? That she gets some sort of thrill from a total loss of control of her emotions (and sometimes body) while everyone stares at her? She doesn't.

I refuse to let you feed ignorance.  Let's say someone sees you make this request, thinks it's normal and then they think "yeah, that is annoying, and they should leave!" Not today satan.

And finally (even though I could really go on and on with this) I refuse to let you continue being a dick. Dick.


Every Time

I kept Isa home from school today.

At 6:00am just after my alarm went off I got a txt from her school telling me that threats had been made against students at the school but "not to worry. Yeah, no. At first I was worried that I was just freaking out for no reason.  That I was being "that" parent.  But you know what? I didn't care.

I remember so vividly, being in high school, attending my classes like normal, and finding out that across the country a massacre was taking place at a high school just like mine. Columbine High School.  For hours we learned of the terrors that were/had happened.  It seemed to take forever.  There was no social media, kids didn't have cell phones, there were no school procedures for this. For hours we didn't know what was going on. Just that people were dead and dying.  Kids my age. Just like me. We could see bodies, blood, people crying and running literally for their lives. I'm sure everyone my age remembers that day. It hits hard.

It changed everything. We all saw the world differently. With a layer of suspicion and fear. I remember there were a couple boys in my grade. Boys who wore trench coats. People started whispering about them. Were they going to come to school and shoot us? They were excluded and treated like freaks. Ironically, that treatment is the excuse those other boys used for their massacre. We were all afraid. Grasping for some kind of logic and Some way that it could be prevented.

As the years go on, violence at school becomes more and more common. Several of Isa's friends played it off like it was no big deal. Like that could never happen here. They joked, teased and dismissed. Well, I've got news for you. NO ONE thinks it will actually happen to them or someone they know. But it does. So many families have lost children, husbands, wives, fathers, mothers, aunts, uncles... people. People were lost. Lives changed forever. IT DOES HAPPEN.

Regardless of the fact that no violence took place at her school today, I'm grateful that Isa's school takes any threat against a student or the school as a whole seriously. I'm even more grateful that they opted to send out that txt and email. I'm sure there are many families who would have loved the chance to get a warning. To have the chance to keep their loved ones home and away from danger. I'm so so grateful I had a choice, and I'd make the same one every time.



A couple of days ago I shared this blog post on Facebook. So many people responded with love validation and support :). Interestingly though, a whopping 40% of the interactions I had about this post did EXACTLY what I was talking about.  It was then that I realized, "They don't even know they're doing it!"

I'm not going to name names because that isn't important. Most people don't realize their comments of encouragement or advice can be hurtful, because they feel that it comes from a good place.  They think, "But we are close enough that this can't apply to me" or "I know exactly how to make them feel better". They don't realize that it can leave the listener feeling like their sadness isn't valid or that they should change their feelings in order to make the people around them less uncomfortable.

Why are we so uncomfortable with sadness? Why are we so quick to try and make it go away? Sad things happen.  Sometimes many sad things happen. And in those moments, we don't want encouragement or a personal anecdote about that person one time and how it all worked out. (Personal stories about your own experiences are OK, just leave out the part about how it got better, or how it will all be fine. It just glosses over the sadness).  What we want to know is that being sad is OK, that it's normal, and that we can stay there for as long as WE need to. When advice it wanted, we will ask for it. Just wait.

That's hard for most people. It's almost instinctive to try and make the sadness stop--to give them advice to get them out of their current situation and move on.  What does that even mean, move on?  To where? What if it sucks there too? In my mind it conjures up a person who has done their best to forget about why they were sad, only to be reminded from time to time and get completely derailed. Who does that help?

We all know the situation will end but that doesn't make it hurt less now.  For some of us the situation causing the pain will last our life time (I hope. Yep, I worry about that too).   I know it's hard to watch someone go through a painful and/or sad situation, but you need to let them do just that. Go through it.  Love them, validate them, cry with them. It's "Mourn with those that mourn and comfort those that stand in need of comfort," not "Try to cheer up those that mourn and give perspective to those that stand in need of comfort."


It's All Not Going To Be "OK"

I like to keep it real around here.  None of this motivational crap.  Why? Because, that is not my life.

That is not the life of many parents who have children with special needs.  I may have moments where I see the successes of hard work, but those moments are often over shadowed with, well, the work. Yes, Emmeline can walk. But only after HOURS and HOURS of PT. Hours and hours of hearing her cry during sessions, walking halls, stretching muscles and walkers. Hours of me crying... and that's just for walking.  We have fought and clawed our way to get Emmeline where she is today and we fight and claw to get her where she is going.

It's dirty, hard work.  The weight of it settles in your chest like a brick.   If you aren't dealing with an acute situation or the fall out afterward, you are planning your next therapy or doctor appointment, surgery or IEP meeting etc. Then there is the constant nag of what's to come.  The worry and fear of "what if" or "will she".  Of trying not to focus on it too hard or you suddenly find it hard to breath.

It's real and it's every day.

I made it 9 years and 1 day.

The camels back had not just broken, but exploded. Filling out the depression and anxiety survey was harder than I thought.  It felt like each box I ticked was a tick mark of my failure. All the ways I wasn't tough enough.  All the ways I could have done better. The doctor listened and created a treatment plan. I left with a scrip for D and A meds and was asked to come back in 2 weeks.

I hate the meds.  I cry all the time.  If the meds are supposed to make me feel normal, does that mean a normal person would cry all the time if they lived my life?... Part of me wishes they don't work, because if they work then I'll need them. I don't like to 'need' things. The need just creates the fear of it eventually not being there and then what will I do?  I need it.

I remember one day asking Josh, "Do you think it's my anxiety that makes me thing every time I stop the car someone is going to run up and try to break in?" His response?  "Well, it's not, not your anxiety."

I mean, do they really expect 2 pills to help with that mind? That's just the tip of the iceberg. Maybe I'm just doing this to prove that I'm a hopeless case of sad and rage but since I get the job done that should be OK.

I live in constant fear of the unknown.  Fear that this will be the last time I put my daughter to bed. Fear that she will never be independent.  Fear that she may not be able to have children.  Fear that she wont be able to get married.  Fear that people will be mean to her. Fear that this bout of Pneumonia will be THE one. Fear that Isabella will one day have to take responsibility for my choices. It goes on and on...

Why do people think it's not OK to think you are playing a really shitty hand? And just let that sit. Why do they feel compelled to find the silver lining?  Sometimes it just sucks! I'm allowed to think that, given that I'm living it. You'll give me some pep talk and then go on your merry way.  It's all still there. It doesn't lighten the load. It's OK to be mad that it's not OK.


'Tis The Season

Early October is always hard for me.  It has become my scheduled extra worry time.  Today marks the morning of Emmeline's first of many surgeries.  It's hard to think back on what I thought my life would be like then and what it has turned into in reality.  When you're told your baby needs surgery, you assume it's just the one.  That they will fix whatever minor problem there is and you'll be able to get back to your "normal" life with a newborn. 

For us, this was just the beginning of a long, rough road.  Just 2 short days after this first surgery, we would be admitted to the hospital for 6 weeks after Emmeline stopped breathing. I would live 2 hours from home, half of the 6 weeks at the hospital and half at the Ronald McDonald House. Emmeline would endure 5 surgeries and countless test during that first hospital stay.  In the end they only sent us home because they had no idea what else to do for her and were afraid she would get sick if she stayed in the hospital during flu season. We settled in at home with a portable hospital room.  The only thing I couldn't do was start an IV.

That time was such a blur. I remember a lot of tears, anger and sadness.  Watching your child struggle to breathe, eat, and feeling just plain miserable was beyond heartbreaking.  She hated to be held by the time we got home because she basically only got picked up at the hospital for tests, so she associated begin touched with pain. Holding her while her little body flailed, trying to get away, was shattering. 

To date, Emmeline has had 14 surgeries and has probably been sedated close to 50 times.  It's been a rough road, for all of us.  She's the toughest person I know. I wonder if she even knows that? To her this is just her life. She's never known anything different.  I know though.  I know how much harder she has to try to do pretty much everything that just comes naturally to her peers. I still get angry about it.  Why her? Why does her life have to be so hard? She has the same dreams and desires about her adult life as any kid.  I hate that I know some of those things are impossible.

For some reason October triggers all these memories and fears about the future. As the leaves fall, so does my sanity. Thankfully,  Emmeline isn't having acute near death experiences on a regular basis anymore.  She can walk, talk, cuddle, draw, run, skip!, ride a bike and so many more things doctors told us she likely would never do. Like I said, she's the toughest person I know.  I just wish she hadn't been put in situation where she proved that at such a young age.


Not Today, But When?

We have worked really hard since she was born to give Emmeline her best shot at life.  At first that meant helping her eat and breath.  That turned into multiple surgeries, doctor appointments and more therapy than I can count.  We have probably spent weeks, if not months in driving time getting her to the best specialists we could find, and she has excelled.  She is doing phenomenal in school, therapy, Girl Scouts and even does part of our family runs with us.  It's more than any doctor thought possible.

But I worry.

She blends pretty well at school.  She doesn't really notice the differences yet in herself and her peers.  They help her feel included and demands aren't super high. They're 8. They wait for her in line, hold her hand to help her down the hill to the playground, run a little slower during tag so she can catch them, pick her to sit with them at lunch etc. In short, most of them are kind. 

But when will that change?  I live in constant fear of that day.  When Emmeline will be left out, and notice.  When kids will get tired of doing everything slower to include her. When will she notice they are doing everything slower and resent it?  She desperately wants to play soccer, but I can't handle seeing her realize she can't keep up, or finally getting the ball only to have it stolen while she plans the motor skill to actually kick it. My heart aches at the idea of having her be so excited to play only to be left in the dust. I thought "maybe we could find a Special Olympics soccer club or something". But she wants to do the rec league with her friends and she would know.  That's the thing.  She's physically limited but crazy observant and smart. You can't get anything over on that girl.  She would know.

I wish there was more I could do/have done to help her. The reality bomb is, that there are going to be things my daughter can't do.  That no matter what fancy therapy or lesson I get her, she just can't do it the way everyone else does.  But she doesn't know that yet, and waiting and watching for that realization is one of the most torturous things I have ever endured.