Tag Archives: children

My Special Needs Mother Hat

25 Feb

I talk a lot about my journey to obtain my special needs mother hat. I don’t know why I use this term. I guess it just gives me a good descriptive picture in my head and explains a major role I play.

To me, this hat looks different than a mother hat. My mother hat fit well the first time I put it on. It was easy to wear, simple, elegant, and light. It was beautiful from the beginning and did not tear easily. When it did, I could take it off at night and stitch up any holes it acquired during the day. My stitching was never loose, came apart or was crooked. It always came back together nicely. It rarely fell off and never seemed heavy. I was proud to wear it and frequently showed it off. I enjoyed this new hat tremendously and was very reluctant to turn it in for my special needs mother hat.

When I got this hat it was WAY too big. It fell off all of the time. Sometimes it just blew right off my head. In the beginning I would forget that I had it and a big gust of wind would come along and POOF! Gone. I would have to go chasing it down the street. Sometimes I threw it to the floor in a moment of rage, frustration, or grief. And sometimes I just tried to leave it on the counter at home. I tried to pretend that I didn’t have it. It was extremely heavy. It had all kinds of straps, buckles, and ties attached to it that I couldn’t figure out. It had random flowers on it with names that I couldn’t pronounce. It was uncomfortable and became worn out looking. Rips and tears began to decorate the sides and no matter how hard I tried to stitch it up, my stitching never fixed the holes. They were loose, crooked and simply came apart by an unexpected tug in the wrong way. The whole hat would just fall apart. I would carry my hat in pieces back home and painstakingly try to put it all back together. At first it seemed destined to be big, ugly, uncomfortable, and prone to making me feel like an outsider. It seemed nobody had a hat that looked like mine.

After I wore it for a while, I began to notice other mothers whose hats looked like mine. They were worn and tattered, but had been repaired with beautiful hand crafted stitching and appeared loved and cherished. These mothers looked at me in my hat and smiled a knowing smile and pointed to their heads. “See. I’m proud of my hat. It may appear complicated and worn out to you, but to me it’s beautiful. Your hat will be beautiful too one day.”

Slowly I began to notice new things about this hat that I hated at first. I was learning to pronounce the names of the flowers on it and figuring out the buckles and straps. It wasn’t so big anymore and no longer blew unexpectedly off my head. It began to fit better as each day I grew a little more confident in my role. Every once in a while I still throw it to the floor, but now my reasons are different. It still gets ripped and torn, but I am learning to sew it back up and now my stitches hold it together. It doesn’t fall apart so easily and my stitches are straighter and stronger. I’ve learned to love each and every rip, tear, crease, and stain on my hat because each one has a story. A moment in time and a memory of where I have been and what I have gone through. It isn’t so uncomfortable now and it doesn’t make me feel like an outsider. Now it makes me feel like part of a group. A group of mothers with special hats and special roles that we love and feel honored to have. I no longer try to hide my hat. I walk out of my house each day with my head held up high, proud to show off my journey with my special needs mother hat.

As different as this hat was from the mother hat that I began with, it has begun to resemble the first quite unexpectedly. Yes, it still has all of those rips and tears. It still has those strange flowers on it, but the basics of the hat…are like the first.

What holds one together, holds the other. The hats are both made from the same fabric and are sewn with the same thread. What makes my special needs mother hat strong, is what made my mother hat strong to begin with.

The love I have for my children.

The two hats are not all that different.

Some days my special needs mother hat becomes too heavy or feels too broken to wear. I just can’t pick it up.
So instead? I pick up my first hat.

My mother hat.

As long as I remember that I am still a mother… I know that it’s okay. I know that I don’t have to feel guilty if I have a day or a moment that I just don’t want to wear my special needs mother hat.

When I feel overwhelmed, overtired, overworked, underappreciated,…I just remember that sometimes?

It’s okay to just be a mom first.

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Where was my key?

9 Jan

I used to read blogs and find links on the internet after Oli was born about children with special needs. More specifically I looked for those words describing BLIND children with special needs. Blind. They had to be totally and completely blind or I couldn’t relate. They couldn’t be JUST blind either. They had to have other disabilities. Other delays, or I couldn’t relate. The children couldn’t be too much older, they couldn’t live in another country, they couldn’t be able to walk or crawl… or I couldn’t relate.
Looking back on it now, I just couldn’t relate to anyone.
I would find the differences in the people, circumstances, and situations so that I was left standing utterly alone, unable to find comfort in any of the sentences that I read on the screen.
Reading those words and seeing the hope and the progress as the parents of these children reveled in their accomplishments, left me yearning to find the key that opened the door to their secret world.
The world, in which people who believed in their special children and accepted them, lived.

Where was my key?

How do you learn about all of the differences in your child, how do you sit through evaluation after evaluation of disappointing prospects and yet still find the key to acceptance?
How do you get to that place?
I sought out those stories of the milestones these children met, delayed yes, but nonetheless met, and wondered if my girl would ever do any of those things.
I wasn’t sure that she would.
I tried to compare her to similar children (when I found them which was rare) and felt defeat after defeat as they surpassed her by miles.
They learned to crawl and walk and talk and when my daughter reached that same age? She just didn’t.
The remorse and regret and guilt of all the possible things that I could have done different or better or faster… It just crushed me.
When she didn’t do the things that I thought she should do, I felt like such a failure as a mother.
I had failed her.
I hated that feeling, but I just couldn’t make it disappear.
I met lots of doctors who, when asked questions of what she would do, responded with shadows of “might not”‘s.
I also met lots of therapists who replied to the same questions with cheerful “might”‘s.
I tended to drift and focus more on the might nots.
When I would try to discuss my fears of the future with people, and I did so rarely, they responded as people do.
They told me to believe that she would grow up normally. They told me that my fears were silly and that I shouldn’t think such things.
They told me to look on the bright side.
Easy to do when it’s not happening to your child.
In truth, they were well meaning people with good hearts who wanted to help me but were completely
clueless.
Sometimes it’s hard to talk to people like me.
People who, when in such a place of darkness, find fault with every well meant comment or upbeat possibility.

Where was that key?

As time passed I just stopped talking about it. I didn’t want to be the downer of the conversation wallowing in all of the shame I felt. The self pity, that I didn’t see as self pity, but most definitely was.
I couldn’t talk about the guilt.
Who do you tell when you have feelings like that?
God?
Ummmmm…. No.
God and I were definitely NOT on speaking terms after Oli was born.
How could HE let this happen to a child? To MY child more importantly.
My husband?
No.
I felt like it was all my fault and I couldn’t admit that to him.
I guess I felt that it was his fault too.
Like this was something that we had done to her. Something that shouldn’t have happened.
I couldn’t tell him that.
My friends.
No. We already talked about that up there^^.
My mom?
Nope. Not her either. Too much guilt. Too much shame.
What had I done to her very first granddaughter?
Sooooo… that left?
No one.
Except it didn’t really.
It turns out there were a few people that I would meet along the way that would help me to find my key.
People who had been in and out of my house since this whole thing happened.
People who saw mothers like me and children like Oli every single day.

They were the therapists who worked with my daughter.

Not all of them were warm and cuddly.
Not all of them were inviting.
Not all of them I could open up to.
But some of them… I could.
Some of them had a compassion and a keen sense of understanding for a situation that they had never lived.
Some of them didn’t even have children of their own!
But it didn’t matter.
For some reason they had the right tone of voice, they said the right words, they were silent when I needed them to be, and the outer shell that I had created began to dissolve.
It turns out that I met a succession of these therapists in the exact right time in my life where I was able to hear them.
I was able to be honest about my fears and my wounds and as I listened they began to heal me.

In the beginning I guess they couldn’t help me because I was so engrossed in putting on a good front. I was so focused on pretending to be strong that I never let my fear seep through the words of strength that I wove together.
I didn’t feel like I could tell anyone let alone a stranger!
I ended up learning that sometimes a stranger is a heck of a lot easier to talk with.
Especially a stranger that isn’t really stranger because they come into my house every week and watch me fold laundry (including my underwear that likes to fall out of the basket at the most I inopportune times!)
They watch my children bicker and me burn the dinner.
They watch my 3 year old run out of the bathroom naked from the waist down and listen as she recounts less than savory tales of our household.
Basically they just see us…as us.
They see me…as me.
Eventually it becomes very difficult not to open up to someone who sees you as you are.
It might have started with a simple question.
“So how are you doing with all of this?”
Followed by a quiet stare as I repeated my all too well known response to that question.
“Fine.”
It might might have started with that stare that bore through my soul.
That stare that unequivocally meant
“No really. I know you can’t be fine so how are you?”
I don’t really remember, but I know it started with them.
It started with them showing kindness and empathy and it started with a trust that developed between us.
As I allowed the door of communication to be opened, as I began to finally relate with people who understood me, they began to lead me down a path towards finding my key.
My key to peace.
My key to happiness.

My key to acceptance.

…to be continued.
First part of an upcoming speech on communication between team members.

I know I’m okay as long as I don’t make pancakes for dinner.

21 Oct

“Close the door Michael. I can still hear them.”

Michael obediently pauses Zelda and walks over to the lightweight door, closing it on the sounds of my parent’s argument.

“Now turn up the sound on the TV and just ignore them.”

Michael again complies without protest, spinning the volume control on the old 32” TV. He picks up the remote control of the Nintendo and scrunches up his little face in concentration.

He is probably about 7 years old.

I am probably about 10.

This is not the first time we have performed this ritual.

It will not be the last time either.

About an hour later my mother knocks softly on our bedroom door.

I get up, reluctantly pausing Link mid stride across his never ending quest through the green maze, and open the door.

Michael looks at me worriedly.

I look up and into my mother’s red rimmed, glassy eyes.

I see the tears still pooling in the corners of them just about ready to spill over. Just about, but not quite.

My mother will rein them in, sparing me from having to wipe them from her cheeks.

My mom will pretend to be strong for me.

Even though I know she’s not.

Even though I know that she has once again been defeated.

“Are you okay?” I ask although I already know what her response will be.

“Yes. I’m fine.” She answers in a voice that is too high, too cheery, to be anything but fake.

It is only now that I notice that she is carrying two plates in her hands. She lifts them up towards my face.

“I’ve made pancakes for dinner!” She says this like someone would announce that they are going to Disneyland.

She says it like she’s just given me exceptional news.

I’VE MADE PANCAKES FOR DINNER!!

“Thanks mom.” I respond quietly. I try to pretend that this is good news. Pancakes. I love pancakes and so does my brother Michael.

I know what those pancakes mean though.

My eyes cast around her to the doorway and towards the silence that sits awkwardly beyond it.

My mother is confused at first by my sad expression. Then she meets my gaze with eyes pooling with tears once again.

She knows that I know.

She knows that even though I am only 10 years old, I now understand that pancakes for dinner is never a good thing.

Pancakes for dinner means that my mother is not okay.

I’ve kept that memory since childhood. I still associate pancakes and dinner as a very bad thing. I’ve had my own children now. Three of them. And guess what?

I’ve made them pancakes for dinner a few times.

Very few times, but I have and I cringe at that memory too.

I told the young child me that I would never do it.

I would never turn those light, fluffy, syrupy plates of deliciousness into a dripping plate of sorrow…but I have.

I have fought against instinct and upbringing and tried to swim against the tide that tries to push me in the direction of my mother’s life.

To no avail.

Points in my life have begun to mirror my mother’s despite my every attempt to fight it.

Of course it doesn’t all look the same. But a lot of it does.

More than I’d probably like to admit.

And so when my life falls apart and the tears stream down my face and my sobs threaten to choke me… I do what feels right. What feels comfortable.

I make pancakes for dinner.

That’s how I’ve come to measure my sadness and my coping skills.

Am I making pancakes for dinner?

If I am?

It’s bad.

Eme’s Army: Fight for Sight

30 Sep

Oli was recently given an amazing opportunity to work with another special needs child on a campaign by a company called Paper Clouds Apparel.

Paper Clouds sells t-shirts, hats, sweatshirts, hoodies, and totes featuring the artwork of special needs children. Oli has her handprint heart on two different t-shirts and a tote that is now available for purchase. She is featured alongside another child named Logan and together they have some incredible things to choose from.

Paper Clouds Apparel employs special needs adults AND they donate 50% of the proceeds to a charity that we choose. We chose http://www.emesarmy.org. Emerie is a little girl who needs our help to get her eye sight back. Please visit http://www.papercloudsapparel.com and check it out!!

“The Cause (Sep 30 – Oct 13):

Eme’s Army
Eme is 6 years old and she is being robbed of her sight by CRB1-LCA, a very rare genetic disease. Eme’s Army, made up of supporters and volunteers like you, raise awareness of childhood blindness and fight for those like Eme. CRB1-LCA has no treatment. A gene therapy clinical trial is being conducted for RPE65-LCA right now that is working and is giving blind kids like Eme their sight back. By replacing the mutated/broken gene with a good copy of the gene, blind kids can see again. It is a fight against time. If too many of their retinal cells die, the cure in clinical trials will not work. So please join Eme’s Army and help them FIGHT for SIGHT! All money raised by Eme’s Army funds research through the Curing Retinal Blindness Foundation (CRBF). An all volunteer organization, CRBF was co-founded by Emerie & her family to stop CRB1-LCA.” -Quote from http://www.papercloudsapparel.com

I can’t even begin to describe what this means for Emerie and her family. Imagine having a child go blind and then find out that there may be a way to treat it…it’s beyond incredible.

I would do ANYTHING if there was a way for Oli to see.

Anything.

I may not be able to help Oli get her vision back, but I can help Emerie in a small way.

What an opportunity. What a privilege it is.

It’s a privilege not only to work with Eme’s Army, but also to work with a company like Paper Clouds Apparel.

What they are doing for the special needs community is remarkable. They are making a difference in the world. They are making it better and more accepting and more “normal” for kiddos like Oli.

That’s something that I am extremely proud to be a part of.

If you can, please visit their website or their facebook page.

Share this campaign with your friends. Let them know that they can help too! I never ask you guys to share anything, but this is important. The more money we raise the better chance Eme has of seeing her family again.
You don’t have to share it from here. Share it from Paper Clouds Apparel. It doesn’t matter how, just tell people about it.

Thank you!

Here are a few of the shirts to choose from:

emes5

emes6 (1)

emes7

emes8

emes10

emes9

She finally called me mom.

23 Jul

Yesterday was the first day that Oli ever called me mom.
Today when she said it again someone else was here to validate for me that she actually said it. My husband heard her.

She is 6.

She called me mom.

Not mom-mom or ma-ma-ma. Not ommm or mmmmm or ahhhh or any of the other things that she has called me in the past.

Just mom.

I knew she could. I hoped she would.

I just didn’t know when?

As we were sitting on the chair this morning after breakfast she quieted her head shaking, tipped her head towards mine and said “Mom”. Then she smiled and leaned forward to give me a hug and pat me on the back. She hugged me tightly like “I know mommy. I know you’ve been waiting to hear that from me for a very long time. There you go. I said it.”

I was so shocked that I don’t even think I registered the fact that it was SUCH a big deal until after she left for school. Until after I came back upstairs and sat down with my coffee.

And then it hit me.

I finally heard the word that I have been waiting to hear since she was born. The word that I have dreamt of all of my children saying since the moment that I knew that I wanted to become a mother.

After 6 long years…I finally heard it from Oli.

If she has taught me anything it’s patience. If she has shown me anything it’s that we have to celebrate the tiniest accomplishments because for a child like her, the smallest things become the most memorable.

I remember each of her little moments like it happened yesterday. The pictures of those things are etched in my brain like a tiny portrait of the perfect day. I remember where we were sitting, what we were saying, who was in the room, and the big smile on her face once she realizes what she has done.

I’ll give you an example…

The second time she put two words together (the first time was at 2 years old before she stopped speaking) happened a few months ago. Kekoa, Ginger and I were playing a Lego board game. Kekoa was working on building a car out of red Legos with grey doors and black rubber wheels. Ginger was sitting to my left pulling out all of the tiny grey pieces, trying to annoy her brother. Oli was sitting with my mom eating applesauce. My mom asked her if she was all done eating. Oli tipped her head to the side and quietly said with the confidence of a super star “All done.”

Cue the big smile that graced her perfect lips and the huge yells of celebration and congratulations from the rest of us.

The itty bitty moments, in a regular house, on a regular day, mark the events of my lifetime.

THESE are the moments that I will remember when I grow older and reflect on the good times in my life.

I won’t remember when I bought my first car, when I moved into my first house, or what I wore on my first date.

I WILL remember when my Oli girl said mom for the first time.

I will remember when all of my kids did, but she works so much harder for these milestones. Months and months turn into years and years of therapy to achieve the things that other children seem to do so without effort.

And yet…that is almost exactly what she did today.

Somehow, working on it for all of these years instantly turned into a distant memory.

She said it so clearly, smoothly, and confidently that it just rolled off of her tongue like it had always been there.

Like she had been saying it all along.

I have many people joke with me and say things like “Just wait! Wait until she starts talking all of the time and then you’ll wish for the days that she didn’t.”

I laugh and say “Yeah” like I have some comprehension of what they’re talking about.

I don’t.

I can’t imagine a day that I wouldn’t want her to speak. She could speak to me all day, every day for the rest of her life and I honestly don’t think that I would ever get tired of hearing her sweet voice.

Can you imagine the day that she could have a conversation with me? Can you imagine a time when she could tell me what she wanted for dinner?

I can.

It gives me butterflies.

Nope.

I will never ever wish for these days when she can’t.

But, I know that she will be able to someday because she surprises me all of the time with her accomplishments.

It may have taken her 6 years to call me mom, but she said it!

She said it.

That’s all that matters.

And then there were two…

18 Jul

Last weekend I had the privilege of attending the ICAN conference in Chicago, IL. ICAN stands for the International Children’s Anophthalmia/Microphthalmia Network. Every two years, children and families from all over the world, travel to learn about and meet other people with anophthalmia and microphthalmia.

It’s always great to learn about the new technology available for blind people. It’s always fantastic to learn about new advancements in the treatment of these conditions.

But nothing beats what it feels like to look at another child or another family that knows exactly what your life is like.

No one knows what it’s like to raise a blind baby, to deal with the trials and tribulations of conformer therapy, to deal with other people who stare at your child…

Than other parents with a child just like yours.

No one knows about the breakdowns in the car because someone said something hurtful about your beautiful daughter…

Except another family who has walked in your shoes.

No one knows what it’s like to hide your newborn baby underneath a pile of blankets in her car seat because you just can’t stand to have one more person comment on how your very wiggly, giggly, very AWAKE baby, is sleeping because she can’t open her eyes…

Than the other mom who has had it happen to her.

The families that I met this weekend? Know EXACTLY what I’m talking about.

It’s so refreshing to talk about all of these things and to look into another mom’s eyes and see that flash of recognition. That spark of “Yes! Yes! That’s happened to me! That’s how I feel!” I don’t have to explain everything. Half the time, I didn’t even have to finish my story. I would get half way through and then see her head start to bob up and down and a knowing smile, play on her lips. Ahhhh…yes. You get it.

There was still some explaining to be done though. There were still a lot of walking, talking, interactive blind children running around the halls that weekend.

There were many many children who were NOT like my Oli.

To be honest…it makes me feel a little bit weird and strange to be around them. I feel kind of awkward. I don’t know what to say to a talking blind kid. Give me a non-verbal, blind kiddo with multiple disabilities and I feel right at home. Otherwise, I’m out in deep water. Do I offer my hand to them? How do I introduce myself? What do I say?

I’m just not used to it. I don’t know that life. I only know my own.

It was still pretty cool though. I was sitting at dinner and was watching a new friend talk to her son at the table. She was telling him where his knife and fork were. That there was a little lip on the edge of the plate. And then she took his hand and guided it over the plate to show him. I could only stare and smile and think to myself, “Yes. I must be doing it right. I do all of those things with Oli even though she can’t tell me if that’s correct or not. It must be, otherwise this other little boy would tell his mom that it wasn’t.” I need to see those kinds of things. I need to know that I’m doing it right with Oli.

There was one little girl that I just can’t get out of my head. A 14 year old girl from Italy. She was just like my Oli. After seeing her, I don’t think I’ll doubt Oli’s autism diagnosis again.

Little Eliza from Italy was JUST like Oli and she also has the diagnosis of autism. She too, is totally blind and non verbal.

Her and her parents sat next to us at dinner on Saturday. I had spoken to her parents a little during the day. The geneticist wanted me to talk to them about some different forms of communication techniques and tactile symbols, to use with her.

I knew that when they described her, I had that look on my face. I know that as I listened to her mother speak about her, I had that spark in my eyes. “Yes. Yes! I know exactly what you’re talking about.”

Meeting Eliza, was a whole different experience. I have never met another child that was like Oli. I mean like her in EVERY SINGLE WAY!

I couldn’t take my eyes off of her during dinner. Her mannerisms, behaviors, the way she moved her hands, the way she ate her food, the way she relied on her mom…it was ALL like Oli.

It may have been a little strange for her parents. More than once they caught me with my mouth hanging open, looking like an a-hole, staring, smiling, and nodding in their daughter’s direction. More than once I had to excuse myself and say, “Oh my gosh!! She’s just so much like my daughter!! I’ve never seen that before! I’m sorry for staring.”

More than once I felt like bursting into tears because I was just so happy that I had found another mom who knew what it was like.

There are, of course, other children born blind and who have the autism diagnosis. I’ve met some of them.

They were not like Oli.

I later asked the genetic counselor at the convention what made Eliza and Oli so similar. They have the same eye condition, but different gene deletions. Oli is missing the OTX2 gene, while Eliza is missing the SOX2 gene.

She couldn’t really give me a definite answer, other than to say that there had to be some genetic correlation that caused the blindness and the autism. Somewhere in those genes lies the answer, or rather, the missing answer to the puzzle. Something about those missing genes that caused their eyes not to develop and then whatever caused the autism, is the same in Oli and Eliza.

It was fascinating.

The next day when it was time to leave, I said good bye to Eliza at breakfast. She took my hand in hers and ran her fingers over and over my palm. She found my ring and was twisting it around. She smiled and smiled… Her mom said, “Wow! She really likes you!” I told her “I know. It’s because I just totally understand her. It’s because we have this bond that ties us together. It’s because of Oli.”

And that is the story of the day that I finally met another child like Oli.

My Old Lady, Gertrude

28 Feb

Tomorrow Oli has surgery…again. Every time she has to go through this I think, “For sure this is the last time. Surely she won’t need anything else done.” I think it Every. Single. Time. And then we have to do something else. Something comes up that only can be done under anesthesia.

Tomorrow’s surgery is no big deal. I know that it’s no big deal. They will not be cutting into her. Many, many people have gone through MUCH worse with their children. I know that too. Oli will only be having an ABR (hearing screen) done and possibly tubes put back in her ears.

But…I am terrified.

I have this wicked old lady, Gertrude that lives in my mind. (Wait….stay with me here.) She likes to whisper nasty, horrifying things in my ear. Remember worst-case-scenario-girl from previous blog posts? The one who is sure the power will fail during Oli’s surgery and her arm will end up falling off? Gertrude tells me these things. “Yoo-Hoo! Shaaannoooon! What if the anesthesiologist is a drug addict and gives her WAY too much medication and she never wakes up?” This is not all that far-fetched. When I had my tonsils out as a child my doctor was an addict and really did give me too much anti-nausea medication. Fortunately it was just that and not too much sedation. (A few years after my surgery he ended up giving a pregnant mommy too much sedation and sadly, she died.) I just couldn’t control my tongue for hours after surgery.

What?

Yes it was very, very bizarre. It would pull back towards my throat and then hang out like a dog. On the drive home my mom kept saying “Shannon. Stop that! It’s not funny.” I told her I couldn’t help it. After I finally convinced her that I wasn’t doing it on purpose she got kind of freaked out. (Hello! Her child had lost all voluntary control of her tongue!) She called the hospital and after looking at my chart the nurse realized that during surgery, I had been given WAY too much medication. The sticking out tongue thing eventually went away after a few hours. Thank God!! What if I had to live the rest of my life like that? What if I still had no control of my tongue? Has that ever happened before? I should Google ‘permanent loss of voluntary tongue control’.

Then I start thinking, what if that happens to Oli?

No. I probably shouldn’t Google it. I don’t want to know.

I’m just nervous. Nervous, nervous, nervous.

I’m scared because they will be putting her to sleep (obviously that alone provides a whole crap load of things for that old lady to work with), but I’m also scared of the hearing screen results. What if it’s NOT just fluid in her ears? What if that doesn’t explain why her eardrum isn’t moving? What if it’s something congenital? What if she’s NEVER been able to hear well out of that ear? I’ve spent her whole life providing a lot of information auditorily. What if I’ve been doing it all wrong? It would definitely explain a lot if it turns out that she really isn’t hearing well.

No matter what, I have to try and ignore the millions of bad scenarios that are racing through my head. (Shut up Gertrude!) I have to put aside my own fear and step up for Oli. And I have to just keep moving forward whatever the results of that test show.

“Don’t dwell on what went wrong. Instead, focus on what to do next. Spend your energies on moving forward toward finding the answer.” -Denis Waitley

My booger awards.

30 Jan

“Sometimes crying or laughing are the only options left, and laughing feels better right now.”

― Veronica Roth, Divergent

So since I’ve recently been entered into the top 25 blog contestant on Circle of Moms (for my other blog. I am in the process of transferring all of the content from there to here.) I have been reading some of the top blogs. Seriously, there is a reason why the number one blog on there has like 8 million votes. It is hilarious!! I have absolutely no chance when it comes to these women and their humor.

But, I still really appreciate everyone who has voted for me. Keep voting!!! You never know, I could get 8 million votes too 🙂 Plus, I just like the thought of winning something other than the booger off my 2 year olds finger. Seriously…she presents it to me like an award. “Here mommy! Look what I have for you!” She hands it to me like it’s one of her prized possessions.

These mom blogs are about how funny it is raising kids. How, ultimately, you do get a little crazy and find yourself doing things that you never thought you’d do. Like responding “Thank you” when someone hands you a booger.

I find it interesting that there are not many funny blogs about raising a special needs child. Oh, they’re out there I’m sure and if you know of one please list it in the comments below or on facebook because I would love to read it.

I wonder if it is because no one wants to associate humor with special needs.

There is nothing funny about a child or an adult that has a disability.

And it’s really not funny in the beginning when you can’t even seem to drag yourself out of bed in the morning because the very thought of the weight now on your shoulders seems like it will crush you.

I don’t think I really truly laughed until about a year ago. I was so caught up in all that I couldn’t do and all that she wouldn’t do that I forgot to laugh and ultimately I forgot to live.

Now I see that those thoughts and sorrow were slowly killing me and if I kept on the path that I was on I was going to die a slow and agonizing death.

Now I see that I just took it all for granted and was so deeply entrenched in self pity that I couldn’t appreciate the wonderful life that I had been given.

Now I see that it is possible to move past all of those things and learn to live again and subsequently learn to laugh again.

I’ve missed that.

I’ve missed being able to laugh at myself.

It really can be funny.

Having children in and of itself is a funny journey, but having a child with special needs has it’s own unique humor. One of my friends on facebook, Jill, posts about the funny things her 6 year old daughter says.

Ella has anophthalmia and makes jokes about her blindness and prosthetic eyes. Her mom posts stories about the humor in their life. Like her whole family panicking in a power outage at night, but little Ella remaining calm and leading her younger brother to the bathroom in the darkness grumbling under her breath that she “doesn’t see what the big deal is?” I love stories like that!! (Jill, I hope you don’t mind me using you and Ella as an example.)

Yes, it can be sad sometimes, but it can also be hilarious and crazy in a good way.

Sometimes it’s okay to laugh and it’s okay to talk about the funny parts. I’m glad I realize that now and I’m glad that I remembered what it’s like to be funny.

Really all that I want to accomplish with this blog is to help the me’s from 5 years ago out there in the world stumbling along in pain trying to figure this whole mess out. If I can reach just one person who knows what I’m talking about and make them feel just a little bit less alone, then I have done the job that I set out to do.

Oh…and somehow writing about my craziness in all it’s glory amuses me.

If you want to share my blog and you feel that it may reach someone and help them, please share it. Or if you just like it and want to share it, please do.

It’s not about the amount of followers I get, or how many likes I get on Facebook or winning any awards (although all of those things are very nice and I do really appreciate them) (Vote for me!:)

It’s just about telling my story, healing through telling it, and maybe helping somebody else.

thecrumbdiaries

Logan is challenged but not limited, and he is living his life like a boss. I am just lucky enough to be along for the ride.

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