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Stupid human tricks a.k.a. Watch yahself!

I absolutely had to get this off my chest… People are  STUPID! I mean, I have worked in the food service industry for YEARS. Therefore, I was under the impression I had delved into the depths of human stupidity and made it out the other side; but alas, I was horribly mistaken. After having my son, I feel like Alice. I climbed into a rabbit hole of idiocracy where the uneducated reign and I have the urge to slap someone weekly.

A quick back story… My name is Hollie and I was a Facebook Pregnancy Poster. I “updated” my 1,228 “friends” on cravings, Dr. visits, weight gain, sleep deprivation, baby preparations and everything in between. Many people had followed my pregnancy whether they wanted to or not. I went into labor, and of course I posted about it. Everyone was SUPER excited and dying to see the little guy. So the nurse hands me my son and I can immediately tell something isn’t right. Cue shock, horror, guilt, etc. You get the drift. And as I am trying to cope with this fact, my Facebook and cell phone are bombarded with requests for me to display my child. Offer up the fruits of my labor (pun intended) for public enjoyment. I froze. How could I expect “the public” to accept my son, when I had yet to wrap my mind around it myself!?

Anyway, I finally bit the bullet (we still didn’t have a diagnosis yet) and took hundreds of photos of Kullen with his eyes closed because to me, his eyes were the only thing that made him ‘different’.  He was a baby, he slept all the time. No one would be the wiser, right? I picked through those photos VERY carefully. Selecting only the right ones from the right angle to post.  I know. I am being brutally honest here. I know I sound shallow and ridiculous and I probably was, but so goes the story of life.

I finally “came out” on FB by posting a lovely picture of my son with the subtitle “My kid has more chromosomes than your kid.” It was met with mostly positive comments, but there were whispers behind my back that I had somehow “caused” Kullen to have Downs since I had occasionally drank a glass or two of wine while pregnant. I mean, come on! He doesn’t have Fetal Alcohol Syndrome. We’re talking genetics here. Slap Yourself! 

But I digress. I say all of this to illustrate the state of mind I was in for the first month or so. Sooooo… I FINALLY get Kullen in “public” for the first time. At this point he was almost 2 months old. We head to Jason’s Deli to meet my aunt for lunch. The cashier takes my order and says “only if I can look at the little baby.” I proudly raise his infant carrier so she can catch a glimpse of my little man (he was sound asleep and looked super cute) . She immediately says, with far too much enthusiasm, “OH!!! Did you know he had Down Syndrome before he was born?!?!” THAT perked the attention of the seventy people in line behind me. I was blindsided! How did she know?! Does my son REALLY look that much different than other children??? I thought he was gorgeous (By this time I didn’t even see the Downs… Still don’t to this day) The blood drained out of my face and I think I mumbled something like, “Nope, he was a surprise all around,”  with obvious discomfort. She didn’t stop there either. She continued to come to our table (I guess she was on her break) and inform me of every person she had met in her life with Down Syndrome (I may be slightly exaggerating) and the details of their physical and emotional health…  At least 3 times she came by! Personally, I think she was on crack but that’s neither here nor there… Slap earned but not delivered. 

During our meal, my aunt, who loves my son to death, was burping him. There was a table of older ladies behind her (so they had full view of my son’s face) and they were STARING. And I don’t mean looking, I mean all four of them were turned around staring with that unconscious angry look people get when they don’t realize they’re doing it. They finally looked past my son and saw ME eyeballing them and then the smiles came. They mouthed nice things and the urge to slap them went away.

Oh, one of my favorites is, “Didn’t you get an amniocentesis?!?” like somehow I failed in my prenatal care because my blood screen came back with no risk of genetic anomalies, and I didn’t insist on very risky further testing…  Slap earned but not delivered.

And I hate this one, when I’m pushing my son in the stroller and talking to ladies in line at a store. They just love all of the baby talk, then they peek around and see him and attempt to mask their surprise. This one even confuses me. I always want to explain my son, like “yes, he has Down Syndrome. But he’s still MUCH cuter than your kid.” 🙂

Or when someone learns of Kullen’s DS, they say something along the lines of “Don’t feel bad, he’s gonna be so full of love.” Okay, I didn’t give birth to a freakin Carebear!!!  He’s got an attitude like all other children. And I don’t feel bad… Concerned sometimes, but bad? no… No slap here, I know these people mean the best.

I get this one reaction quite frequently. There are different versions, but basically, “Don’t be concerned about people picking on him. God blessed him so he’ll never know he’s getting picked on.” or “At least he’ll never know he’s different.” Ok, are you telling me my son will be so “Blessed” by simple-mindedness that he won’t be aware of his circumstances?!  I choose not to believe this one. These people probably don’t deserve to get slapped… I’m at peace with that.

Oh, this is a good one: I got into a conversation with someone about whether I would ever be a grandmother. She says: “I think they’re (people with Down Syndrome) all sterile. Or at least they should be. Just sayin”  <– Did that REALLY just come out of your mouth?!?!  I hope your next period happens in a shark tank, just sayin 🙂 

Then there are the comments that make the news… I can accept most of those for what they are. Comedians have always relied heavily on “shock factor,” and sadly most humor will offend one group or another. The one that really made me sad was the GQ writer. He was writing about the worst dressed cities and said:

“[Boston] is a bad-taste storm sewer…[Boston] suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything.”

That one hurt my heart. My son is NOT ruined :/ The “little extra” makes him more awesome…  Yeah, I’d slap that writer. For. Sure.

Pretty sure I’m done ranting for now. The whole point of this is to encourage you to “watch yourself.” Don’t be that person. I am fully prepared for the day to come when someone says something so immensely idiotic that I actually do slap the hell out of them. When that day comes and momma bear gets unleashed I have a list of people on speed dial that have agreed to bail me out of jail. And THAT, my friends, is responsible parenting in action 🙂

New years 188edited

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My misconceptions about Down Syndrome

I know when I had my son, I was as uneducated as they come about Downs. I could only remember old episodes of Life Goes On and older people at my church with grown children dragging behind them. My knowledge was very limited. So, despite the Dr. telling me not to jump to conclusions the first time I saw my son, I was on my phone Googling while the doc was still stitching me up. I will attempt to share here a few of the bits of info I’ve discovered along the way 🙂 

  • They are not little zombies or robots or even ‘little angels’. I remember the first couple of weeks of Kullen’s life I was devastated by the thought that he would always love me, not because I deserved it or earned it by being a wonderful mother, but because he would never know any better. When I thought about him socializing I kept picturing this little puppy, getting beaten and mistreated but always coming back for more love. I HATED when people kept saying “They’re (Down Syndrome people) so full of love.” “They love everyone” “They’re just little angels.” I didn’t want that for my son!!! I know first hand how awful this world can be, especially around school age and I wanted my little man to have Spunk! some Sass! Stand up for himself and demand to be treated correctly. And BOY DOES HE! He may only be 6 months but he smiles, frowns, coos and cahs, gets frustrated, throws things, flirts with every ceiling fan he comes in contact with (he gives them the most brilliant eyes and babbles at them while smiling from ear to ear) and he doesn’t cry, he HOLLERS! Yells at me like a MAD MAN! He DEMANDS to be heard and GOD does my child have some lungs!!! He just started blowing raspberries and he does this at every opportunity to express his discontent. He is not Down Syndrome, he is Kullen Michael Klumpp and he is NOT a ‘little angel’, (anymore than every other child is a little angel) he’s a six month old little boy who cannot wait to take on this world! 

I’ll post more later as I recall them. My son is demanding my attention 🙂Image

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Friends of the broken…

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Lately I have been asked quite often “What can I do? My best friend/coworker/cousin/neighbor just found out their child has Downs.” I am going to attempt to answer this on a broad scale.

 Do NOT attempt to minimize the situation! Don’t begin with the niceties: “Oh, it’s not that big of a deal.” “They are the most precious gifts from God.” “Don’t worry about it.” or my favorite: “Everything will be fine”  Everything will most definitely NOT be fine. Her entire future is over (not literally, but it does feel that way at the time), at least the future she had envisioned for her life. She MUST grieve. Don’t try and prevent that from happening. Understand that everything she had been planning in her head since she was a child playing with baby dolls is different now, and she will adjust, but don’t try and play it down. See, when you act as if everything is just peachy, she feels guilty because she does not feel that way. She feels broken. So instead of seeing things through the rose colored glasses her friends and family appear to be wearing right now, she simply feels more alone, more guilty, and keeps those feeling to herself so others won’t think she’s awful.

Do NOT be the researcher! I know when you care about someone and they are struggling, you want to find some awesome piece of information that will make everything alright. You will not find this piece of information. It doesn’t exist! What you will do however is alienate your struggling friend. Either you will find a lot of facts that freak you out and pretend you didn’t (but we know you so we know your demeanor has changed. You’re an awful liar after all) Or you begin to quote statistics and probabilities that could actually end up doing more damage than good. The wonderful thing about Down Syndrome is that its a constant surprise. There is no set in stone way it will affect each child. So no one knows how it will play out except God himself, so don’t try and pretend to know.

Don’t turn her child into a cause! This one drove me crazy more than all of the rest. All of a sudden everyone was SCOURING the internet to find every “motivational” picture or video of a random Down Syndrome child to post on my Facebook. My brother, bless his heart, even made my one month old his own page and tried to host a walk in his honor. There were videos with child after child smiling with down syndrome set to some overly emotional Sara Mclaughlin song. Don’t be that person! That freaked me out much more than it ever helped. I don’t want to see other Downs kids! Not at that time. I was still trying to pretend my son looked absolutely normal and no one could ever tell he had Downs. DON’T MAKE HER CHILD A CAUSE! I became more and more angry with these people. Kullen was Kullen, NOT another face of a Syndrome! Celebrate every other aspect of his life besides the Downs please! She is trying to see past the syndrome herself for the first couple of months so this is more detrimental than helpful.

Don’t be the networker. So something funny happens when you have a child with Downs. Everyone around you automatically starts flipping through their mental Rolodex attempting to figure out what friend of a friend they know with a Downs child. Being that they love you, they are attempting to hook you up with someone who can understand what you are going through. There are links to many organizations thrust at you, support group invitations, every dr. I saw bombarded me with phone numbers of other mothers of Downs children. I attempted to call and see if talking about it would help. It didn’t, at least not for me. I ran across mothers who’s journey with Downs was so much different than mine. I either felt guilty because my son didn’t have as severe problems as their child or I dreaded what the future was going to bring. There were a lot of doomsdayers. And also, seeing all of these well-adjusted mothers that are happy and not hurting at all made me feel like an AWFUL mother because I did NOT feel that way. I am fine now, I love my son and I don’t even see the Downs when I look at him, but at the time I couldn’t begin to understand how these moms were so WELL-ADJUSTED!!!

So what CAN you do? Human beings, by design, are not very good at sitting on our hands while someone we care about suffers. You don’t have to! What you CAN do is be there. Tell your friend “I cannot begin to understand what you are going through (even if you think you can). If there is anything I can do please let me know. I will be here for you and together we will love that child like NO ONE has EVER loved a child before! The world will not hurt him/her because we won’t allow it.” You can also do some of the above mentioned things in MODERATION. Ask if she would like you to find support groups or introduce her to other mothers going through the same thing, but DON’T INSIST. It is a very private struggle. Assure her that NOTHING she did or could have done could have made this child be born differently. You cannot cause or prevent down syndrome. It happens. That’s it. You can ask if she would like to see motivational pictures or videos of other people with downs. But again, don’t push. Encourage her to be proactive. Right now if feels like her world is completely out of her control, but taking steps towards physical or vocational therapy can help make her feel as though she has some control back over her life.

Just love her. Support her. Be there. She will eventually adjust to her new life. Nothing but time and seeing the personality of her child begin to come to life will heal this wound.

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Here we go kids… Buckle up!

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The road of life can only reveal itself as it is traveled; each turn in the road reveals a surprise. ~unknown~

In essence, that is why I have begun a blog about the trials, tribulations and day to day victories of my son and I as we make our way through crazy world.

Soooo… Let’s rewind a bit….

 I’m PREGNANT!!?!?!?!?! @#$%!!!  #%$@!!!  %$^&!!!  WHAT HAVE I DONE??? THIS ISN’T SUPPOSED TO BE POSSIBLE!!! I CAN’T BE A MOMMY!!!!

I was TERRIFIED… Now, I have always been SUCH an idealist with strong opinions about abortion, so I had spent 25 years sticking my foot in my mouth for this moment. I simply could NOT do it! I’d be SUCH a hypocrite  So, I ignore it. I’m sure this is some type of mistake and God will take care of it on his own… Nope. Still pregnant… So I rationalize to myself, if something is wrong with my child, something that will make his life difficult, MAYBE I can revisit the “termination” idea… Nope. Healthy as a horse. Blood-work done. Genetic screenings passed. Measurements perfect…

Sh*t… I’m going to be a mommy... So I begin to wrap my head around this idea. That MAYBE I might be able to do this mom thing. Just maybe I can rise above my mother (rest her soul) and her mother and actually be good at this.

I begin to plan. Perfect baby room. Perfect baby gear. Perfect name. Plans for sports in my son’s future, and he’ll be popular because I’ll only buy him the best clothes, and EVERYONE will love him because he’ll be beautiful and perfect.

The last eight weeks of my pregnancy the Dr had me coming in every week for an ultrasound. My son’s femurs were measuring a little short. I was ASSURED there was NO chance he could have Down Syndrome and told not to worry. There would have been a lot more symptoms presenting. I googled my heart out and made myself sick. The last week of my pregnancy his femur measurements were spot on where they should have been so BREATHE, everything is FINE 🙂

So… fast forward… I’m in labor… FIFTEEN HOURS later, my son is born… Before I could see him, the nurse cleaning him began questioning at what point I began prenatal care. MAJOR RED FLAG! I was exhausted but kept asking to see my son. I could see the nurse was crying. Not happy tears either. I can’t begin to explain the pit that formed in my stomach at that moment. She handed me my son and couldn’t even look me in the eyes. I saw his little face and my heart sank. He wasn’t crying. Just staring at me with those slanted little eyes. I forced a smile, I think… I was TERRIFIED, shocked, worried, but felt extremely guilty for not having that “magic moment” I had always heard about from other mothers. I looked at his Dr. and said “he has Down’s Syndrome” very matter-of-factly. The Dr. told me no, don’t jump to conclusions, his face is just swollen from the trauma of labor.

They convinced me I was overreacting for two weeks while we waited on the blood test to see if he had Trisomy 21. I tried to believe it. I WANTED SO BAD to believe it, but I just knew in my heart of hearts that he had Down Syndrome. I had ruined him.

I finally got the test results back and I fell apart. I crumbled. Bawled hysterically for an entire day. I had to grieve. I grieved for the life I had envisioned for my son. I grieved for the pain he was going to experience in his lifetime. I grieved for every time I had judged someone with Down Syndrome and all of my assumptions of the condition. I grieved because the world is such a cruel place, and I had been a part of it.

And just as quickly, I put on my big girl panties and realized this is NOT about me anymore. This was about giving my son the greatest quality of life he could ever dream of. I had to come to terms with the fact that NOTHING I could have done, despite the whispers I heard behind my back, could have caused my son to have D.S. It is a genetic disorder. It was decided as soon as the sperm and egg fused that my son would have an extra chromosome.

I think I have written enough for one post. I hope I have showed those going through the same situation that the things you are feeling do NOT make you an awful person. They are perfectly natural but you cannot let them consume you.

Now that everyone has been caught up, the rest of this blog will be about our physical therapy journey (started at 2 weeks), milestones, struggles, victories, idiotic things people say (and there are a TON) and of course beautiful pictures!

Stay tuned 🙂

I valued your opinion, and it almost killed me…

Fear of judgment can be crippling, especially for a mother. At first it simply sits on your shoulder like big brother cataloging all the missteps and wrong choices you make throughout the day, and you think, “Whew! Thank God no one was here to see THAT!” You’re fully aware that people are watching, scrutinizing, tallying your every move, online or off. You spend all this time juggling the opinions and acceptance of others that you build yourself into this unrealistic world of Super Mommy with a clean house, 3 healthy meals a day (made from scratch of course), plenty of time to hold two jobs, spend developmental quality time with your child, maintain a 4.0 in college, and also seem to be everywhere everyone needs you to be right when they need you to be there (with perfect hair, pressed clothes, and clean shiny children).

No one tells you that after a while, the weight of maintaining that facade can actually kill you, or at least it almost did me.

Once my son began walking, climbing, RUNNING everywhere and anywhere he could, there was NO way to keep up. I’m a single mom and the mess around the house multiplied by 1000 times! I’d be cleaning up one mess while watching him create an even bigger one. That fear that I would be discovered as a fraud began to weigh heavier and heavier on my shoulders. I didn’t realize it at the time but my body began shutting down. I found it horribly difficult to drag myself out of bed, muster up some sort of boxed meal I swore I’d never feed my child, and fall into the couch exhausted, sick, weak, and in intense physical pain. I lost my jobs, began gaining weight, and the fear kept mounting. I was scared, literally AFRAID, to leave my house or God forbid have anyone over because I had let EVERYONE down! They can’t see me FAT! They can’t see me with hair unwashed for days! They can’t know how horribly far I’ve actually fallen. What a true MESS my life and home had become. I would cringe and slightly panic every time my phone went off. I got to a point I wouldn’t even look at it for days because I knew someone was on the other end expecting the old me to appear, but that person was looooong gone.

At the same time, my son decided to become an escape artist. He would monitor the perimeter of the house, the yard, the car, and mentally file away every single chink in the system that would allow him freedom. This is something common for children with autism and down syndrome called eloping, and it leads to more child deaths than you could ever possibly fathom. They have no sense of safety and will bolt bare-footed down the street into traffic, or up the stairs into the pool, or through the store and continue running until they can run no longer. Kullen had learned to open doors, pull down or unlatch gates, or my ABSOLUTE favorite, pull the gate away from the under the house and crawl into the darkness faster than Superman could even get to him. The fire department had learned my address well, and STILL the stress and fear grew heavier and heavier.

“I bet the fire department or the neighbors think I’m a horrible mother! I can’t ask for help. I can’t tell anyone this is happening or they’ll think I’m neglectful.” Still I grew sicker and sicker. I barely ate, and if I did it wouldn’t stay down, but somehow I continued gaining weight. I couldn’t understand why I felt so AWFUL. I, with the help of Google, convinced myself I had cancer… no wait, liver disease… no wait, IBS… no, my endocrine system was failing… no, it’s Polio! Ahhh! More STRESS because I’m dying and can’t afford to see a doctor. This lasted for nearly a year.

I felt immense guilt for not being the person everyone, especially my son needed me to be, EXPECTED me to be.

I had isolated myself to avoid the HORROR of what everyone would think if they’d only known how bad it had gotten. The opinion they would have of me and my life ate at me, even as the shut-in I’d become.

Finally, I’d had enough. I went to the doctor fully prepared to be poked, prodded, referred for further testing, but at least I would get ANSWERS. They’d give me a pill and Viola! I’d suddenly be the old me again, right? Wrong. The Dr. took one look at me and told me my body was systematically failing due to STRESS. No cure. No pills. No surgeries. No relief. I left in tears vowing to get a 2nd opinion immediately.

But the more I thought about it and researched, it all made sense.

I didn’t realize how much I had measured my worth by praise and accolades in real life AND online. Being a single mom is a thankless job, and it was always so nice to have people say “I don’t know how you do it. You’re amazing.” or even “You look great.” When I couldn’t live up that any longer, I was too afraid to be REAL; horrified to be HUMAN.

I took mental inventory and began working on myself in I’ve lost a good 8 lbs in a month. My pain is easing. My heart, brain, blood pressure and stomach have steadied. I’m back to being the mother I know I’m capable of being. The fog is lifting, and I’m becoming social again. If they don’t want to see me with messy hair or some more weight to lose, they don’t have to look. Keep scrolling! I’m not out of the woods yet, and I’m far from the person I was a year ago, but I’m on my way.

I say all of this to say, we as a society are all SO opinionated and completely open about sharing our critical opinions of other people’s lives. We sit behind our phones and judge. We post pictures of people failing at life and find humor in sharing them with our friends. We are SO fast to criticize and condemn people making mistakes, being PEOPLE. We do it on news stories, videos, things we see at the store or gym or in a parking lot, and on and on and on. When did we get so PERFECT that we have the RIGHT to offer our opinions on someone else’s lives without censure? Are any of us truly being REAL, or simply presenting the side of ourselves to the world that we believe is the most flattering?

If you actually read this far (I know few will), I challenge you to resist the urge to judge others immediately. That mom at the store with her kid on a leash may not know how else to keep him safe. She’ll either be criticized for the leash, or be the next mom publicly crucified for allowing her child to get abducted or killed. Just a thought.

As far as I’m concerned, if you can’t offer a better solution or alternative to the choices I’ve made, you’ve lost your right to an opinion that matters to me. Try it. It’s a much more peaceful life on this side of things… 🙂

To find out more about chronic stress and its dangers, go here.