When You Feel Like an Outsider at a Baby Shower

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I live in an apartment. I come home and take the elevator up to the third floor. It’s not a fancy elevator. It’s one where you are keenly aware that you are in a metal box being transported between stories.

This particular one has a gap between the elevator itself and the floor. You can see this gap as you step across it. It’s like a gaping abyss. But smaller. I’ve always been afraid of bottomless holes. Of spaces where you can never stop falling. The gap between the elevator and the building always feels like one of those to me. I grasp my keys that much tighter. Because to drop them down there would be to be doomed. Or at least, that’s what it feels like.

Today, I went to a baby shower. These two things shouldn’t feel connected. But for me, they are.

The last baby shower I went to, before this one today, was my own. To me, they represent hope. They represent possibility. They are all about what is to come. And for the guests that means childbirth, and being a mother in all its challenging glory, but nowhere in those expectations is what I experienced.

I feel like parents like me, parents of kids who fall outside the category of “as long as it’s healthy,” dropped into that gap between the elevator and the building when we had our children. We expected to get on the elevator. We were told that was what was going to happen. And suddenly we were looking up saying, “What? Why us?” We heard ourselves and others say at our baby showers, “five fingers, five toes, healthy and normal” as if anything else was out of the question.

I should have never had to feel like this was anything but normal.

When you are pregnant you have all these ideas of what parenthood is. So many of them are wrong or misguided. But most of them are not as far off as the reality a special needs parent faces every day. Every parent has to adjust to the reality of parenthood. But when even the horror stories of breastfeeding and colic seem like fairy tales, it can be hard to accept that this indeed is your normal.

The baby shower today was lovely. I felt hopeful and excited for the mother to be. But I also felt cheated, and sad, and like I had seen something that had ruined it for me. I saw the other pregnant woman who were talking about realistic concerns like birthing plans and whether they would have a water birth or an epidural and I felt like an outsider. Like a cynic.

My journey involved finding out my daughter, Eva, was blind and deaf within days of her being born. It involved finding out she had multiple heart and brain abnormalities within the first week of her life. It meant giving up on breastfeeding and then bottle feeding. It involved hospital stays and frightening illnesses and never really knowing what the future would hold. While she had 10 fingers and 10 toes, she was not healthy, she was struggling to breathe, the smallest cold put us in the PICU and I was left feeling that somehow I had missed the boat, fallen through the crack, been left behind.

My journey of motherhood is not everyone’s, and I felt more than ever the need to reach out to those other mothers like me. To know we are not alone. To normalize our experiences of motherhood so we don’t have to feel like we have fallen in that gap between the elevator and the floor. So we can feel like our experiences are normal and valued and worth talking about.

So we can feel like that hope and wonder and joy at a baby shower doesn’t need to end if our baby turns out to be Eva or one of the other one in a million babies.

Follow this journey on The One in a Million Baby.

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What Most People Miss When They See This Photo of My Daughter Playing

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When you look at this picture you most likely see three little girls on a tire swing, and I don’t disagree.

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But if I let myself look a little longer, specifically at my daughter in the middle, I see more.

Here is what I see:

I see a little girl, who used to be completely blind, looking at something.

I see a little girl, who for most of her life would not touch anything, holding the rope and allowing her hands to scrunch up against the fists of her friends.

I see a little girl, who used to throw herself backwards whenever she was in the upright position, sitting on a tire swing, leaning in towards her buddies, being a part of the moment with them.

I see a little girl, who used to become overstimulated and overwhelmed with every new experience, spending the day at a farm she’s never been to, on a swing she’s never sat on, doing an activity she’s never done before, staying calm and having fun.

I see a little girl, whose neuropsych testing earlier this year described her as having the cognitive ability of an 8-month-old, continuing to hold on to that rope because she’s smart enough to know she will fall off if she lets go.

I see a little girl, whose prognosis as an infant was “vegetative state” if her hundreds of seizures a day did not stop, alert and engaged, interacting and participating in a play date.

I see a little girl, who’s been repeatedly deemed by her health insurance company to have “no restorative potential,” bursting with potential, overflowing with possibilities, perfect exactly the was she is, filling her own unique spot in this world, and in absolutely no need of restoring to anything for anyone.

I see a little girl, whose doctors warned before her birth “may not be salvageable,” alive and joyful, making the world a better place simply by being who she was made to be.

And I see two precious little buddies, unaware of everything I’m seeing, simply loving on their friend, no questions asked.

Three fabulous girls? You are absolutely right. I see that too.

Follow this journey on I’m Julia’s Mom.

The Mighty is asking the following: Share a photo with us and the bigger story behind it. What don’t we see in that photo? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Why I'm Allowed to Have a Bad Day as a Special Needs Mom

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Dear Friends and Family,

I wish I could tell you that all my days are happy, easy and full of smiles. I wish I could tell you my medically fragile child used the potty, can count to 10 and learned how to spell his name. There are days I wish I could relate to your struggles, and I wish I could smile more, worry less and simply dream about the future. Unfortunately, this is not the life I was given. These are not the moments I can brag to you about and share with you on my blog. The things I get excited about you may not understand or comprehend why it’s a big deal. We celebrate small victories, we measure success differently and instead of planning ahead, we live day to day.

I know you want to tell me it will be OK. You say things to me like, “God only gives you want you can handle,” “You are his mom for a reason” and “Be grateful you have him with you.” I don’t know if you know this, but sometimes when you say that, it hurts my heart to the very core. It isn’t because I don’t believe I can be the best mom to my son, Von. It isn’t because I believe God had it in for me when I was given a child with a longer list of diagnoses than I care to count or know. It’s definitely not because I am ungrateful. It’s because you can’t fix this situation. Nothing you can tell me is going to make Von well. Nothing will eliminate the challenges we deal with on a day to day basis.

It’s OK for me to have bad days. I’m certain you have bad days as well with your healthy children, neurotypical kids or even with yourselves. I promise when you have your bad days, I will not remind you to be grateful. I will not tell you that you are only given what you can handle. On those days, I will simply say “I’m sorry.”

We do have really great days here. We watch a child beat odds each and every day. I marvel in his strength and perseverance through testing, lab draws, surgeries, endless therapy appointments and medication schedules most of us would cringe at. He smiles all the time. In fact, I would venture to say he’s one of the happiest children I know. He rarely has tantrums, and when he is upset, it’s generally related to having to get his daily shot of growth hormone or take an inhaler he doesn’t want to take. I know these things have to be given to him to grow and live. He doesn’t know that, and he can’t understand why we are doing all of this. I hope one day he can communicate to me that he appreciates all this effort. My goal is to keep him alive.

While you dream of your child’s first football game, getting their driver’s license and going to prom, I am dreaming about my child living and getting to high school. I am dreaming that my child will have the health to go to elementary school. I am dreaming that one day he will be able to potty train. I dream about having conversations with him that are meaningful and that he will be able to maybe one day write his name and say his colors. Until then, we keep on pushing through therapy and appointments, and we keep teaching him everything that for many of us comes easy. He will learn it all in therapy and hopefully do some of it well.

However, on my bad days, please remember that I am not ungrateful. I am allowed to feel upset or angry about this journey. It’s OK for me to be mad that my child has to fight to learn everything many of us do naturally. I am allowed to feel frustrated that he’s on eight medications to do what a normal body does on its own. It’s OK for me to feel badly. If I didn’t I would not be human. So please remember you do not have to fix this, fix me or fix Von. We will make it. He will get there. There will be bumps along the way. We will take this one day at a time. Please remember we are only human, and we are doing our best.

Your Friend,

Katie

Follow this journey on Von’s Super Hero Facebook page.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Restaurant Responds After Diners Leave Mom Nasty Note

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Katie Leach and her family were having dinner at Texas Roadhouse in Nampa, Idaho, when her 10-month-old son started making yelling and making noise, KTVB News reported. Leach tried to quiet him to no avail.

Halfway through dinner, two women from a nearby table approached Leach and handed her a note before returning to their seats. The note read, “Thank you for ruining our dinner with your screaming kid! Sincerely, the table behind you.”

Leach tried to explain to the women that her child was young and going through a phase, but they were unapologetic. After Leach alerted him to the incident, the restaurant manager asked the women to finish their dinner and leave. Then, the manager, who explained that he himself has two children, paid for Leach’s meal.

Get the full story from the video below: 

h/t some ecards

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Boy Born With Partial Skull Shocks His Parents in Sweet New Video

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Jaxon Buell made headlines this summer when he celebrated his first birthday, a milestone doctors never expected him to reach. Now he’s hit another turning point, which his parents captured on video (below) on October 2.

The 1-year-old, who goes by the nickname “Jaxon Strong,” has microhydranencephaly, a rare neurological condition that results in individuals missing most of the skull and brain, according to the Centers for Disease Control. Jaxon was only recently given the specific diagnosis, which helped doctors in Massachusetts find the best possible medications for him, according to Boston.com.

Jaxon’s progress is now visible for the world to see, as he’s started speaking. His parents, Brandon and Brittany Buell, posted the video below on the family’s public Facebook page, in which Jaxon can clearly be heard saying “Hello.”

Jaxon says “Hello” to Germany to the kids that drew him pictures!!!! You can’t see our shocked and happy expressions behind the camera, but we are super proud parents to be able to witness Jaxon speaking yet again!!! Such a brilliant little man!!! #JaxonStrong

Posted by Jaxon Strong on Friday, October 2, 2015

 

The Buells wrote on Facebook that this was the family’s way of thanking children in Germany who drew pictures for Jaxon. “You can’t see our shocked and happy expressions behind the camera, but we are super proud parents to be able to witness Jaxon speaking yet again!!!” the Buells wrote. “Such a brilliant little man!!!”

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1.8 Million Boxes of Cheerios Recalled

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General Mills announced Monday it would be voluntarily recalling boxes of original and Honey Nut Cheerios produced at a facility in Lodi, California, during a two-week period in July. The estimated 1.8 million boxes, labeled as gluten-free, contain wheat.

In a statement on Facebook, General Mills wrote:

This recall is a result of an isolated incident where wheat was accidentally introduced into our gluten-free oat system. These products remain safe for those individuals without celiac disease, gluten intolerance or a wheat allergen. This was a mistake, and we sincerely apologize.

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