Tag Archives: humor

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.

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10 Things my mother forgot to tell me about being a mom

30 Jan

1. I will never eat a hot meal again.

2. Strike that. I will never eat a meal again. I will be forced to eat random snacks I find at the bottom of my purse or in the car because I will continually be too busy and forget to eat.

3. I will be expected to be available at all times during my child’s shower to adjust the temperature with the faucet because it is always too hot or too cold and can change multiple times during a 10 minute shower. (Seriously when do they learn to adjust the temperature themselves?)

4. The main sentences in my house will be the following:

• Stop picking your nose.
• Don’t stick your toy in that.
• You need to poop INSIDE the potty.
• No you can’t build a rocket ship out of crap in the random crap drawer.
• Stop picking your nose. (I say that one a lot)
• Eat your dinner.
• Sit down and eat your dinner.
• Stop crying and eat your dinner.
• No I did not make that to torture you.

6. If I get rid of the one toy that they haven’t play with in 2 years that is the one toy they will ask me about the day after I get rid of it. And then I will have to go to the store and spend $50 replacing it because I crumble like gluten-free bread under my children’s guilt trips.

7. Bedtime is actually hours after I put them in bed.

8. “Go to bed and stay there” means absolutely nothing in my children’s language. I may as well be speaking Chinese after they hear the words “It’s bedtime”

9. There are such days as Pee on the floor day. Where everyone in my house somehow manages to pee on the floor. Including the cat.

10. I will never pee or shower alone again. Someone will always barge in, bring their drama, expect me to referee from the shower stall, find a toy behind the toilet, need juice, a snack, fall down, cry, have to pee, or have a poop emergency while I am using the bathroom. Including the cat.

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8 things I wish I would have known when Oli was born.

26 Jan

“None of us is as smart as all of us.” Eric Schmidt

1. I am my child’s parent 1st.

I am not her therapist, or teacher. I am definitely not her drill sergeant. It’s okay to just be her mom sometimes. Of course, I still have to work with her at home. But, I no longer have that tremendous amount of guilt when I just cuddle her instead of doing physical therapy exercises. I don’t feel guilty when I carry her up the stairs once in a while instead of forcing her to walk up them when she doesn’t want to.

A woman from the Texas School for the Blind and Visually Impaired told me this when Oli was 4 years old. It was the first time anyone ever gave me permission to “just be her mom”. I will never forget that because it was the gift that I had been aching to receive since the day she was born.

2. Think about today.

Boy, does this one catch me up sometimes… I don’t need to worry about the things that Oli will or won’t do 10 years from now. (I really like to do this!) It just weighs me down when I do. I have realized that she can do what she can do today and that is just fine. I really can’t tell you what her future will look like but, for right now, what she is doing is perfect.

3. Don’t be afraid to be Donald Trump

If a doctor talks about Oli while she’s in the room like she is not even there, I fire them.

If a doctor is not compassionate and does not realize the he/she is treating my whole family and not just my little girl, I fire them.

If a doctor or therapist seems annoyed that my 2 year old is crying and my 7 year old keeps interrupting because he wants me to look at his latest accomplishment on his Nintendo DS game, I fire them.

These doctors and therapists have no idea how many times I have dragged my other children to these appointments. How many hours of their short lives have been spent in waiting rooms and in the car driving to different appointments. If they cannot respect the fact that my other children are also affected by Oli’s disabilities, we find someone who does.

4. Google is my friend.

5. Laughter is an even better friend.

6. I probably have Post Traumatic Stress

Oli’s wonderful pediatrician in Las Vegas, Dr. Hyun, told Seth and I this while we were sitting in her office one day.

It could have been our red swollen eyes, lack of matching clothes,all around disheveled appearance and the “Holy shit! What just happened?” look on our faces that tipped her off.

It was the first validation I received that all the craziness in my head had a diagnosis.

7. Functional not Perfect

So many therapists would spend hours trying to get Oli to do things perfectly. She was never successful because the reality is, no child does things perfectly when they are just learning to do something. Special needs or not.

Oli’s new physical therapist, Cathrine, was working on trying to get Oli to stand up from the middle of the floor. (We had been working on this for a couple of years with different therapists.)

She told me on her first visit, “I don’t care how she does it. I just want her to be able to do it. It doesn’t have to look pretty.”

And guess what….Oli did it!

8. Special = Expensive

Having a special needs child is very very expensive. I had to claim bankruptcy when Oli was 6 months old because of the mounting medical bills, co-pays, and things our insurance didn’t cover.

Very Special = Very expensive

(It’s okay. I’ll still take very special, even though it means I’m broke all the time.)

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A medieval torture tactic

26 Jan

“I liked things better when I didn’t understand them.” -Bill Waterson

So that’s what I did. I just took her home. I didn’t have a battle plan or an army and I certainly didn’t have a force field. I had the only things I could offer her at the time. I had an infinite amount of stubbornness, a heart bursting with love and two eyes that I would share with this little girl for the rest of my life.

An enormous amount of weight settled on my shoulders that day as I strapped this tiny person into her car seat. I could feel the weight threatening to suffocate me.

Before I left the hospital, my sister in law, gave me a website. It was for an organization called ican. International children’s anophthalmia and microphthalmia network. www.anophthalmia.org I did not know that this information would become a life line when I began my adventure into the unknown.

I did know that no one in that hospital had ever really seen a child born with this condition. The only person they could direct me to was a pediatric ophthalmologist.

So before I left the hospital I googled ican. It was full of people,terms and images that were so foreign to me, I had a hard time comprehending what they were saying.

I didn’t know what an Ocularist was. This was a profession? I had never heard of it. Of course, I had never heard of a baby born without eyes either.

So I googled ocularist. Apparently he was some sort of artist that made these things called conformers.

I googled conformers and was overwhelmed by what I read. An ocularist makes, and then forces these conformers into the eyes of anophthalmic and microphthalmic children in order for the eyes to stretch big enough to wear painted prosthetic eyes. At the time, this sounded like some kind of medieval torture tactic.

What? This sounds barbaric! Wasn’t there some kind of new technology for these children? Something not so painful?

We would have to do this every month for years in order for her to wear prosthetic eyes. And it might not even work. Her eyes might never stretch enough to wear prosthetic eyes.

It said that we would need to start this process as soon as possible to give her eye sockets and eye lids the best chance of stretching. Then I read on another web site that if I didn’t do this to her, her face might cave in. (Untrue, but I didn’t know that until talking with other parents.)

I had to turn off the computer. I grabbed Oli’s little pink newborn blanket, buried my face in it and just cried. I cried for myself, I cried for her, I cried for Kekoa and Seth. I cried like I have never cried before. I did not want to do this. I did not want to have to put this little baby through procedures that would hurt her.

What kind of a mother volunteers her baby for pain?

But, I didn’t want her face to be deformed either.

I cried harder.

And then I picked her up and whispered “I’m sorry” again.

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And then….they just let me take her home.

25 Jan

“In three words I can sum up everything I’ve learned about life: it goes on.” -Robert Frost

Now I have answers to most of those questions.

No. She would never see her daddy’s face. But, she would see how beautiful his soul is every time he holds her close to his heart. Every time he fiercely protects his baby girl.

Her brain appeared to be normal but, they would have to do a MRI to be sure. This would not tell me anything about her cognitive function, however. I did not realize back then that the words “her brain appears to be normal structurally” did not mean she would have normal cognition. It turned out to be a blessing that I did not know that then.

Her kidneys were anatomically normal. Except for some extra fluid in them called hydronephrosis and something called vesicoureteral reflux.

What the heck is that?

Pertaining to her story, it was pretty insignificant. She ended up just having a few procedures and was required to take medication so she wouldn’t get a kidney infection. Although the procedure called a VCUG, to test for the reflux, was traumatic for her it was probably more traumatic for me. She eventually grew out of it by the age of 3.

The hearing screen result was a little hairy. The first screen they ran was normal in one ear and abnormal in the other the first time they did it.

You can imagine my reaction when the hearing screen person told us the results. I will never forget the look on her face as she tried to be as gentle as possible explaining that they would have to test her again.

She knew that Oli was blind and I could tell that she wanted nothing more than to tell me my baby would be able to hear me. She could see the look on my face as I silently pleaded with her to tell me the test was normal.

Please let her hearing be okay.

“We will have to run the test again tomorrow. This does happen sometimes. Sometimes we run the test too early after delivery and there is still fluid in the baby’s ears.” she told me as gently as possible.

She came back the next day and tested Oli again.

The results were normal.

She did hear all of my expressions of love.

She did hear me when I repeated “I am so sorry” over and over again.

She heard me when I vowed to do absolutely everything in my power to ensure she had the best life possible.

And then the nurse came in and told me I could take her home.

Just like any other baby. They told me to just take her home.

What was I supposed to do with her next?

They were going to let me just walk right out of the hospital with her?

Were they crazy?

I needed a few more days!

I need to prepare.

I needed a battle plan, an army of soldiers to protect her from the world.

I needed to erect some kind of force field around her.

Wasn’t there some sort of pamphlet they were supposed to give me providing detailed instructions?

Wasn’t someone going to tell me what the next step was?

I was absolutely terrified.

The hospital staff just assumed that I would know what to do?

Why?

Just because I was a NICU nurse?

I was not NOT a nurse at that point. I was a new mother and I needed support. I needed to know there was a path that I was supposed to follow. I wanted someone to direct me and tell me where to go.

I will let you in on a sad little secret of the special needs world. Most people do not tell us where to go for help. Nobody provides us with a list of all the services that our childrn can benefit from. The services our children are entitled to. I guess they think that when we get the diagnosis we automatically absorb this information through osmosis. By being in close proximity to other special needs parents.

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Laughter

23 Jan

“The most wasted of all days is one without laughter.” -E.E. Cummings

So I couldn’t help but write a little note about my husband’s reaction to my last few posts. And then our subsequent laughter. Proving once again, you really can laugh at terribly sad things.

Seth was out when I wrote and published the last post. I couldn’t wait for him to get home so he could read it. This one even made me tear up. I’m not a big crier so I was shocked when I re-read the post and felt tears pooling in my eyes.

(How silly considering I wrote the thing!)

I was curious to see his reaction. He is a crier so I knew he probably would. (Sorry honey but, you know you are.) But I was surprised at our reaction afterwards. This is how it goes…

Seth reads the post. I am sitting there staring at his face as he reads it. I am trying not to be obvious about it so I am pretending to clean up the kitchen.

(Shhh. I’m sneaky like that.)

He finishes. Looks up at me with tears rolling down his face and says, “That’s horrible!”

For a second I’m offended. What? Then I realize he’s talking about that time in our life, not my writing.

I look at him with tears in my own eyes as that memory breaks the surface again and tries to taunt me. Reminding me of how incredibly sad and helpless I felt then.

It only stays for a moment though and then retreats back into the cave where I have sentenced it to live in the back of my mind. Those memories of complete sadness are not allowed out very often.

Then I look back up at Seth and our eyes meet. We both burst into uncontrollable laughter.

ME- “That sucked!”

SETH- “It did suck didn’t it!”

And then we laugh some more. Because that’s what we can do now. I never want to go back to that place of grief but, sometimes it’s a good reminder of how sweet the laughter can be.

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