Out of character …

Yesterday I thought I had a turn for the better in this whole nasty sick week of mine. I was wrong. Very. 

Last night I coughed for about two hours. It was terrible. My head felt like it was going to burst every time I coughed and I was dizzy. And breathing during this whole episode was no easy feat! So I finally decided it was time to go to the doctor. And it’s a good thing I did because I have an ear infection and the beginning of bronchitis. I just KNEW that all my symptoms weren’t an exaggerated mess in my head … OK fine, this time.

I will be the first to admit that I panic if I think anything is wrong with me. I can dream up some pretty awful “worst case scenarios” in my head. Some may call this hypochondriacal … I would just like to think that it’s part of my qwerky charm. I also don’t like taking meds. They scare me. All those chemicals just freak me the HECK out. But I have to say that today when they offered me antibiotics for my ear and other meds for my unrelenting cough I was like a drug seeking fool. I wanted ALL of it. No really. All. Of. It.

I don’t think I could have thanked the doctor more for helping me. She was sweet too. She knew of my chemical phobias and she took the time to assure me that the medications I was being prescribed had been around a long time and that they were very safe. I was very grateful she was so kind but with as miserable as I was I probably would have volunteered for a trial drug study, where the side effects were know to cause GIANT permanent purple skin spots, if I thought it could make me feel better. 

Goodness. It is truly amazing how much you change when you realize how important breathing is!

Well, I hope you all had a day where you didn’t act totally out of character!!!

Genuine and loving eyes …

Reese is beautiful.

I know that every mother believes that their child, or children, are beautiful. Some will argue that biochemical changes during pregnancy and after delivery are to blame for this type of reaction to our off-spring. Some may argue straight up love and emotional bonds are the culprit. Whatever the reason we, as biological or adoptive parents, think our kids are the cutest darn things that humankind will ever see.

Now, factor in a disability.

When I first had Reese and was willing to actually go outside I never thought much about how the world would perceive her. But first I should explain my unwillingness to leave the house. Reese was only 2lbs 15oz at birth and was born during what was one of the worst cold and flu seasons I could ever remember … and she was a preemie. I’m a bit of a germ phob. OK, fine. I am paranoid of every germ out there and having a teeny tiny baby magnified this by a BAZILLION.

Anyway, Reese was a baby.  An extra small version and cute at a bug. To me. I loved her and all of her extra chromosomes. I was so proud of her, as I am still today, for all she had overcome.

I should probably elaborated a little more here as well. I had a very difficult pregnancy with Reese. Setting aside all the false worries our “specialists” filled my head with, she had some very real and scary things to overcome. Reese stopped growing at 28 weeks. It had nothing to do with the Down Syndrome, something was wrong. It wasn’t until after she was delivered via emergency Caesarean Section that everything became clear. My placenta necrotized. In lay terms, it died. Or at least enough of it died to significantly hinder Reese’s growth. Her umbilical cord was also described to me as “feeble”. All of this was not good. Reese was born malnourished. They didn’t expect her to be breathing at delivery, but thankfully she was. Reese spent 28 days in the NICU overcoming every hurdle she was presented with. I was in awe of her strength and will to thrive. She was a natural born survivor and I was so proud of her.

So when I finally did leave the house with her I paraded her around like a Rose Parade Queen on a float. She was my little hero.

What I experienced when I finally left the house with her was something I never expected. A reaction from strangers that I never saw coming. Let me point out that there were people who could tell right away that Reese had Down Syndrome. And we almost always could tell by their description of her. “What an angel!”, “Hello angel!”, “She is just like an angel!”. For some reason, unbeknownst to me, if the word “angel” was thrown in there, they knew. And I loved it. I thought it was a perfect way to describe her and I was thrilled that others, people we have affectionally coined “on our team”, saw her for what she was … our little angel.

But then there were the people who surprised me the most. The men and women who would be absolutely “taken” by Reese’s looks. 

“My god she is beautiful.” 

“She has the most unique features I have ever seen.”

“She is prettier than any of my babies ever were.”

… and they hadn’t a clue. None of them knew she had Down Syndrome. I would let them talk about her beauty and I wouldn’t say a word. At least not until the very end of our conversation. And then I just watched their reactions. They were stunned. They had no clue that what initially drew them to Reese was what many in the world would find unattractive and a reason to judge her and treat her negatively. I loved that they viewed her unique features as something positive. I made sure I thanked them and I shared that their view of her, albeit one based entirely on looks, somehow gave this mom some hope.

This morning as Reese sat at the table eating breakfast Libs and I were both struck by how beautiful she looked sitting there. Libs told me a story about a friend of hers. She had recently told this friend that she had a little sister with Down Syndrome. Her friend went on and on about how she thought babies with Down Syndrome were so “cute”.

Perhaps I am being naive and more hopeful than I should be. But I personally have bore witness to the changing perception of people with Down Syndrome. How uniqueness is FINALLY being celebrated as a gift and not something debilitating.  

We aren’t all good at everything. We don’t all look the same. We don’t all come to the same conclusions. We don’t all learn the same way. We won’t grow up and all become the same thing. We were all made differently … on purpose. Each of us has a different job to do with the life that we have been given. No job less or more important than another’s. No one’s life less meaningful than another’s. How we look should not matter in the scope of things. But I sure am glad that at least a portion of this world we live in is starting to perceive beauty in different ways. In this era of awareness how we truly SEE others with disabilities is changing … and this mom sure can appreciate that.

Well, I hope you all have a day where you view the world through genuine and loving eyes!!!

A big sissy whiney pants … 

OK, I know I make a horrible sick person. I complain and I am moody. I want to bury myself like a mole under blankets and make the world leave me alone. All the while being outraged that I am too sick to partake in the world that I want to leave me alone. See how difficult “sick me” is?!?!


But seriously, what is with all the little ailments that go along with being sick?!?! As if, the fever, coughing, sneezing and copious amounts of mucus being expelled from one’s body, isn’t enough! Can’t being sick, be enough in the causing misery department?


Oh no, it’s not. At least not for me. I get a twitchy watery eyes, chapped lips and a red, scaly,  unattractive nose. And I sound like I’m a three year old.

Well, I hope you all have a day where you aren’t acting like a big sissy whiney pants!!!

Catching my breath … 

I am still sick. Although I did seem to sleep better last night than I had ever expected to, this cough is making me down right miserable. To me, coughing is the worst part of being sick. The. Worst.

The medical social worker in me gets the importance of coughing. Our body needs to. All that gunk in there needs to come out and coughing is the vehicle. As unpleasant as the whole process is, coughing is good when you are sick … but I still don’t have to like it. And here are my reasons why:


1. Coughing gives me an idea of what it might feel like if my head were to actually explode. This is knowledge I think most of us could do without.

2. Coughing makes me unattractive. Have you ever looked in the mirror after a horrendous coughing fit? If you haven’t, just trust me, you are not pretty or handsome anymore.

3. Coughing makes my sinuses feel like they suddenly grew larger than my head dimensions can support. I’m guessing that this feeling can only be equated to someone sticking a bicycle tire pump up my nose and inflating.

4. Coughing has educated me on just how long I can live without air and still keep my faculties. It’s surprisingly long. Go me.

5. And the last and probably biggest reason I hate coughing, is that it makes me have to pee. All I can say is that it’s a good thing I’m a runner …

Well, I hope you all have a day where you can catch your breath!!!

Keeping my stories straight with Hello Kitty …

I am sick … and I had insomnia last night. Fun. No, not at all.

At about 3:45 this morning I could bear the boredom no more and reached for my cellphone. I know, a major “no no” when you are in the midst of insomnia. Brain stimulation, yadda, yadda, yadda. Yep, I get it. I have had bouts of insomnia since I was 10 years old so I know all the “shoulds” and “shouldn’ts”. But with the thought of laying there for another 3 hours I did it anyway. If I had felt better I would have done plenty of other things but since I can’t move without coughing or dripping snot (oh yeah, I went there), I decided resting with my phone was my best option.

The problem with me going on my phone is that no matter where I may start I always end up reading a barrage of unrelated articles on the Internet … one link always leads to another. Always. And this morning I read about all sorts of things.

Coffee, I should drink it, because it’s good for me.

The Oscars, I really need to see some movies.

Hello Kitty, that little girl is everywhere and has everything like Barbie.

Runners, we are a weird bunch.

Food, I really like it and when I can taste again I will make some new recipes.

MedWeb, I have everything on there … and it’s scary.

Fame, it’s definitely not for everyone.

Politics, I just don’t get it.

Drugs, don’t do them, stick with coffee.

Crime, I think it’s bad.

Terrorism, I think it’s worse.

And Supermodels, I want to feed them.

The problem with all of my new found knowledge is that it’s all just a sleepy snotty (ew) blur to me at this point. Which should make for interesting conversations with me later today.

Anyone up for a latte in a Hello Kitty mug? Yawn. Sneeze. Drip. Cough.

Anyway.

Well, I hope you all have a day where you keep your stories straight!!!

The hardest part is over …

Today my friend and I finished our last long training run for the Los Angeles Marathon. We ran 22.5 miles to Corona Del Mar, one of my favorite beaches. It was long and hard especially the nasty two mile hill at mile 18. But we did it, and we couldn’t be happier that the peak of our training is done.

Well, I hope you all had a day where you were glad the hardest part is over!!!

Thank you from the bottom of my heart …

I got the two messages below from WordPress today.

I can’t think of a better way to celebrate my one year BLOG-iversary than with all of you helping to change the world to a better place for Reese and the entire Down Syndrome community. I have said since I was pregnant with Reese, that she would change the world in great ways. And boy oh boy has she ever! It is through her love that I find my strength to stand up and advocate for change. She is my reason why. I love her and until my last breath I will be her voice. Thank you all for the love and support you give me. I have enjoyed this journey with all of you and I look forward to sharing more HOPE-FULL days ahead ❤️

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Integrity …

Yesterday I became aware of a Facebook post made by Tom Leykis. I found the post extremely distasteful.

For those of you who are unfamiliar with him, I will have to ask that you “google”. I do not want to give him anymore publicity than he already gets, because honestly, he gets enough and in ways I don’t always agree with. He’s kind of like a toddler looking for any attention whatsoever. Good. Bad. Or ugly. The problem is, he isn’t three. He’s a fully grown adult. But because of Reese I will give him some negative attention here.

Mr. Leykis shared a link about Jamie Brewer, the first model with Down Syndrome to walk during New York’s Fashion Week. Ms. Brewer’s accomplishment is huge for the Down Syndrome community. HUGE. On so many levels. Awareness. Acceptance. Tolerance. You name it, it’s POSITIVE.

Mr. Leykis, however, wrote a comment to go along with the link he shared about Ms. Brewer. And it was this:

“This will go DOWN in retard history!”

Just typing it, makes me sick. I do not use the R-word. It is offensive. Wrong. And hurtful. And this certainly isn’t the first time he has used the term either. Last year on World Down Syndrome Day Mr. Leykis posted the “Dear Future Mom” video to his website with these words:

“Don’t have an abortion! Have a retard!”

There is a movement that I am not sure Mr. Leykis is aware of. It’s called “Spread the Word to End the Word”, and I couldn’t agree with it more. The R-word has been used as derogatory slang for far too long. And it’s time to stop. Someone with Mr. Leykis’s influence should know better than to keep using such a foul term.

I have no idea why Mr. Leykis did what he did. Publicity, I am guessing. And I speculate he will claim “free speech” as his defense. Sure, free speech allows him to say (post) what he did. But why on earth would he want to?

Why would a man with his following chose to influence the masses with such negativity? Why wouldn’t he use his powerful voice to promote good? Was the shock value of his statement what he was banking on? Is fame at the expense of the innocent now an acceptable norm of our society?

I am going to tell you right now, NO IT’S NOT AN ACCEPTABLE NORM. It never has been, nor will it EVER BE! And I want Mr. Leykis to be made aware that.

Do I believe in free speech? Um … yep. Writers usually do. But I also believe in being a good human.

Mr. Leykis’s post has since been removed from his Facebook page but it’s still available for viewing on other Facebook pages like Saving Down Syndrome. I am hoping he removed it on his own and that Facebook wasn’t the responsible party.

Although I am glad that his post has removed, I also wrote him a request asking for him to explain himself and to apologize. Immediately upon posting it to his Facebook page, it appeared to have been deleted. I can’t find it, nor can I find any other post addressing his comment accompanying the link about Ms. Brewer. Can I possibly be the only one who complained?!?!

With the removal of his post I am hoping that Mr. Leykis realized that what he did was hurtful and unnecessary. Ignorant. And bad enough that he felt that he had to try to hide what he had done.

But. I don’t think that’s good enough. Reese deserves more. A lot more. I want that explanation and apology for her. For me. For Ms. Brewer and for the entire Down Syndrome community. I want him to say he shouldn’t have posted what he did and I want him to tell the public why he chose to be so callous. Was it all for self-serving purposes and personal gain? Was it for publicity so he could market himself, albeit negatively? Perhaps he was unaware of how offensive he would be perceived. Or maybe he is just cluelessly insensitive. What was his intent? What were his motives? And is he sorry?

And if he is sorry, I want him to publicly admit it. VERY publicly. Why? Because his voice will carry. His influence can change many views. He can make a difference … for the better.

We all make mistakes. Tom Leykis is no different. But it’s how we deal with the fallout from our mistakes that shows our true character. We have a choice. We can choose to gain insight. We can develop empathy for others through the humility that is found in acknowledging that we have done something wrong. Or … we can remain prideful. We can continue to lack compassion for others and dismiss the feelings of the ones we have hurt with our actions. I don’t know about everyone else, but for me, the decision seems pretty simple.

Here is to hoping that Mr. Leykis shows us that deep down he has a decent character.

Well, I hope you all have a day where you show some integrity!!!

Someone else’s shoes …

We all complain. We complain about what is viewed by us as “important”. We complain about being wronged by others, about our jobs, our responsibilities, the weather, traffic, friends and family … good lord the list is endless. We are a society, if not a world, of complainers.

Don’t get me wrong, I get the need to vent. Trust. Me. But I am so tired of what I have come to call “trivial complainers”. I see a lot of this on social media … and I am over it. I don’t mean the funny complainers either. They are making their world aware of the humor in their mishaps, and I just love that! Some of it is just down right hilarious!

No. Whom I am referring are the people who complain about non-catastrophic mistakes made by other people, daily life mishaps, and other NORMAL HUMAN BEING DILEMMAS. These types of complaints, I feel, reveal more about the character of the person complaining than the HORRIBLENESS of their luck and life … and I just want to tell them to shut up.

Why? Because there are people out there who deal with awful trying times and situations. Challenges that would make anyone crumble emotionally and/or physically. There are people dealing with illness and death. Job loss and grave financial situations. People coping with injuries and disabilities. Not to mention issues like homelessness, famine, and war!

You can’t blame me for being less tolerant of people who become upset over things like their custom shower curtain came in the wrong color or a long line at Walmart!

REALLY?!?!

OK, I made those examples up, but you get my point. If we were to think about the people in this world who have REAL PROBLEMS every time we start to complain about something trivial in our lives, we might actually realize that we have absolutely nothing to complain about.

Perspective is everything people. And sadly … sometimes we all forget that.

Well, I hope you all have a day where you put yourself in someone else’s shoes!!!