Monthly Archives: February 2016

1. Bobby and I got into one argument on our way down to Florida. He accidentally paid the hotel when I already did. It was a fiery, short and unnecessary fight. We both walked away licking our wounds, determined to learn something by it. On my end, I need to realize that everything is not a damn catastrophe. So we paid twice? We have the receipts, phone numbers and diplomacy on our side. We’ll be fine. But I hurt someone I love and it sure wasn’t worth all of the dramatics. Don’t you just wish life would pause itself and say “whoa tough girl, hold on a minute, this is how you are going to feel when it’s all said and done.” Then like a Scrooge type deal you would recognize the error of your ways and correct yourself before you did any damage.

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2. I realized I’m a bit of a hotel snob. Our first night was spent at the Hampton (my little slang of endearment for The Hampton Inn.)  It’s not a five star or anything but I want in on everything they got…Hamptons bucks, secret card, monthly newsletter. Sign me up. I’m their hugest fan… with their comfy beds and bountiful breakfast….Especially since  the second night I spent with some Florida roaches and rusty water…making the afore mentioned argument even a tougher pill to choke down.

3. Kids are resilient little diamonds aren’t they? And why don’t we give them credit? We are always like “wow, they were really, really good.” Funny thing is I say that every.single.time. Maybe we’re afraid of the jinx when we predetermine that their totally going to rock which ever thing we are making them do as we pluck them out of their comfort zone. Either way- with terrible colds, stuck in those terrible seats, with those life altering DVDs players (I mean are they a game changer or what?) I can honestly say: my kids totally freaking nailed it!!!!

4. Expectations are everything. A week before  I left for the sunshine state I cozied up on a barstool with a dear friend. I told her how Florida was not going to be the vacation but the whole process of getting there was going to be. We were going to embrace every leg of the trip and make it all part of it! The night I left,  my friend sent me the perfect text. It simply read “remember, no expectations” I let that permeate and thank God I did. Because through orange shower water and a petty argument and a trip to the emergency room, and hours waiting for medicine  and assuming all parental duties while my sick husband rested and a change in a change of plans,  I never shrouded my commitment to no expectations. And you know what? I spent zero seconds with resentment or annoyance. Just one quick shift in mindset was all it took to save a potentially disastrous vacation.

5. Well I was in Florida my first blog post for Syracuse moms blog debuted and it didn’t bomb(thank God.) that got me thinking….if you have ever met me you would know this…I will do anything for you. I will bend over backward for you and I will do it despite how it may inconvenience me. It is a flaw. As is the way I worry what others think of me. I have been known to morph into a version of myself to appease my company. I have morphed many many times. I have turned into such characters as  “party girl” “gossip gal” “goodie two shoes” “potty mouth” “one of the guys” and countless others. While I wouldn’t stamp a red “fake” on my forehead, I would say that I am perhaps a little lost sometimes….EXCEPT WHEN I WRITE. I am 100% genuine with every word I put in print…and while there is much more to my story, what I do put out there I brush off like fossils from my soul. You readers see it all. The full scope;  from my kindness to my fumbles and yet you turn toward it. This reads like a neon billboard with flashing lights and fireworks..BE YOURSELF, BE YOURSELF BE YOURSELF! It’s terrifying though. The first time I wrote something and posted it, I shook like a leaf. Would I be validated, humiliated, or possibly worst of all, ignored? Turns out… Life isn’t middle school. It isn’t  that you must be like the masses or be the gossip dujour. Turns out, everyone else is looking for validation too. So, being different, being vulnerable, being real, and being exposed is better than any being you can morph into.

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6. I was busy patting myself on the back, the way I sometimes do. I credited my organization ,especially ,for keeping us moving in a fluid motion the entire vacation.  I remember thinking to myself “wow I really did a lot this trip, I’m pretty awesome.” I then started mentally listing all of my accomplishments …and for a second, I really believed I could’ve done the whole thing solo. I put the brakes on quick as I went crashing into reality. Why did I want to discount Bobby’s role? Brain wheels were spinning away as I dug deeper into this whole phenomenon. For one, why are invisible marks constantly being tallied about who did the most?  Bobby did do all of the driving. Also,  his  calm demeanor kept panic from setting in during the heavy parts and kept me in the moment during the light ones.  He just has this calming presence like meditation personified…and I know this, and I love this and yet I forget to give him credit in all of it.  Sometimes  us women are so guilty of deeming the man an imbecile and how he would be lost without the brilliant mind of his woman….when did we all forget we are a team? I think of the way men are portrayed in every sitcom and I shake my head. The man always the reacher and dumb as stones, while the woman is the settler (to use my brother’s expression) and you are  left wondering how the hell he snagged her.  How did we get here? It’s rampant. Every woman I know has more than once  rolled her eyes, myself included, about some chore we doled out that did not get completed properly.  We act like our men are idiots, fixer-uppers….when we are the ones who picked them in the first place. Who are the real dumb ones here?

 

All I’m saying is we picked this person to help us raise our little people. We put faith in them when we met them, we believed their vows and we put all our trust into them when we left our dad’s arm to join theirs.  So, maybe when we’re mentally handing out trophies to ourselves, we don’t forget to show gratitude to our teammates.

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7. This is what our trip taught me. Step out of your routine for a few days. Steer clear of house projects, rushing breakfast and scheduled: naps, shows and bed times. Get away from your normal. If you do, you will find yourself looking at your life like you live on the other side of the green ,green ,grass.

As I returned to work this chilly Monday morning I waited.  I waited for the dreads to come. I waited for the gnawing urge  to flee back to sunny Florida and away from the mundane. It never came.  I never uttered “yeah it was tough to come back” or “ugh, back to the grind.”  (Ok, well maybe I said it a little) but honestly my mood was positive, cheery even.  I washed the dishes the night before with pizzazz,   went to bed content, woke up ready for the day. I knew I would miss my tribe. After all, we spent 10 days never leaving each other’s side. We loved on each other so big. We were drenched in all of the good parts. I was able to  adoringly observe Calvin’s imagination instead of rushing him along. I held Judah and I held him some more… instead of plopping him so I could do my mommy jobs. I stared at my husband as he drove and I’m sure he had no idea how my heart bursted for the father he had become. We were just soaking each other up like the sun we were chasing.

It is fair to say my heart ached for my fam-jam at work when I went back and it ached bad. What a wonderful ache it was though….one where all I had to do was open the door to our home and all would be right in my world again. One where our bond halted being: short, irritated and maybe even bored with each other. One where gratitude replaced the ordinary…one that was my very favorite souvenir from Florida.

 


French fries and cigarettes….if you ask me what I’m giving up for Lent this year, that’s what I’ll tell you. Then I’ll probably make some kind of joke about giving up all things long and skinny…Seriously though, people like concrete answers  when it comes to how you will repent. 

For me, it’s like this…I don’t smoke often and I eat French fries even less. I have been known to sneak more than a few off my child’s plate or splurge occasionally in the drive thru. But, I mean, I’m not hiding those golden, salty, fingers  in my pocket or anything. Nevertheless neither are good for you and both represent something bigger.  

I went to church today with some shapeless ideas in mind of “what to give up.” In years past I’ve always given up something I loved, usually food…why is that? I believe the big idea here is that when you fast and your belly is hungry that you replace that hunger with a hunger for prayer. I imagine you would too…But the Catholic  religion  has since realized that it is not feaseable to fast when other obligations require us to have energy.so very much energy… So we abstain from meat on certain days and “give something up.” In church today the priest had us sit in silence and just visit with God….he said to see what God wanted from us rather than what we were seeking from Him. So I sat and I sat and I peeked one eye open because just sitting does not come easily to me… But when I quieted my mind for just a few minutes I realized something. I am not as happy as I should be. I feel like an out of tune organ. I am becoming detrimental to my own well-being. And, detriment seems like it could easily be represented by a picture of French fries and cigarettes, doesnt it? But it’s more than that. I have somehow drifted from my spirituality. I have to try and wind my way through the woods back to that. I lost my way somehow? I have attempted to carve out time for meditation,  for prayer, for exercise and for reflection…but when my students push me and bills call and frustration mounts I get stuck in the mud. I get stuck with pettiness and gluttony and French fries and cigarettes and  everything that makes me forget my good fortune. So while I may say I’m giving up something, what I mean is that I’m trying to gain selflessness, appreciation, and self love back. What I really mean is that I am devoted to creating an elevated version of myself. 

 


To my former self:
To the one with a fresh bundle of pink loveliness in her arms and a fresh diagnosis. The one who is standing on a ledge, ready to jump to any and every bad conclusion. The one who’s face clearly reads that this birth is more devastation than joy….it is okay. You are going to be better than fine, so for goodness sake- stop with all the future predicting. Even when you are right, it’s useless. Like dad told you: worrying is like a rocking chair. It gives you something to do but gets you nowhere….and you are going to have a lot to do… so, stop all that rockin!! Also, try and remember that saying you tucked away into your inspirational Pinterest board:
Worrying is literally betting against yourself.
Why am I telling you to stop? I know you. You stay up late. Your pillow gets pummeled as you ponder all of life’s little pieces. The option weighing is all so much more intense than actual life silly girl, when will you learn?

To the new mommy of a child with special needs. To the one who saw her son for the first time face to face and immediately knew. To that mommy who’s scariest prediction became her reality. To the one who’s sadness rocked her so hard that her body shook, her appetite went missing, and her thoughts consumed her with darkness. I am so sorry you went through that. It was awful for you and because of it, every nurse, doctor and anything “baby” was diluted. It all defeated you… so you thought. But it didn’t. You came back. You were enveloped in your grief and your vision was narrowed and negative. You did this for a solid week. Then you returned with vengeance. Don’t feel guilty about your thoughts. Don’t feel bad about staring at that clear crib in the hospital and wondering how you could love your baby. It didn’t take you long. I still don’t know how you did it. Your strong support system? Your familiarity with trauma? Your high school title of “Most Optimistic?” Either way, you nailed it. You came back in hot. You researched, reached out and started writing. Now you love your baby so much. You see his beauty as one that soars above all other things beautiful put together. Something else,… you needed to be sad. You had to embrace the debilitation in your soul. Everyone fought for you because of it. They deflated your biggest fears . And you became stronger and smarter. As tears fell right on your baby’s cheek, you pushed through to acceptance and you let go of judgement and prejudice. You are a better because of it.

You were right, amazingly, when you predicted your baby would have Down Syndrome . But wait, before your heart starts sinking and you start wailing about how you knew your life would be ruined, it isn’t that way. What ever that thing was that you feared isn’t here in the future anywhere. I’m not even sure what it was? I mean , you didn’t even know about possible heart defects or thyroid problems or neurological scares. You knew nothing of hearing loss, vision issues or a higher risk for cancer. I think maybe you were afraid no one would love you or your baby…that people would make fun of you both; lessen your worth.

You couldn’t have been more wrong by the way. Maybe that is why even though you prayed and you prayed to have your baby be healthy, God (the jokester that he is) handed you a healthy baby with Down Syndrome. Because there is nothing to fear my dear. Your baby is so loved it impossible for me to explain the enormity of it…but, after a short bout of self pitying and despair, you’ll see. And a short while after that, you will barely recognize the shallow pregnant woman hoping people wouldn’t think her baby was going to be unloveable.
Your Judah is just about a year now and  your life is dripping and oozing with more nourishment than all your days before him combined. The way you look at life has completely morphed into a clearer vision of what is really important. You and your husband have the most incredible bond now. You share tears when a mom comes up to you at Target and tells you that your son is like her son and an incredible gift. You trade stories that beam with pride from a successful therapy session and you two know how to take care of yourselves and your relationship so that you can be the best for your babies.

Your relationship with social media is so much more that posting pictures of your well crafted dinner or a funny quip. You have “met” some pretty spectacular people. Ones who are trying to send people with Down syndrome to college, ones setting up a foundation to get those littles with Down syndrome adopted. Countless warriors making contributions in the name of Down syndrome. You are part of a community where good feelies wrap around you like a blanket. Remember in hospital when Judah had to wait to be held as you took to researching families who had a child with Down syndrome? You couldn’t bear to comprehend how people kept saying their life was extraordinary. You doubted, oh how you doubted…but you also kept saying how you just wanted to get there.  You thought it possible, but had no clue how, to depart from the gut wrenching and arrive where acceptance and elation reigned.

Well you’re here. You made it.  It is full of all the magnificence you have read about. You want to advocate, love harder, abandon your old inept ways, and be worthier.  You are all in all a more valuable person because of your journey.

And,  thank goodness it was always innate for you to persevere. Thank goodness it was never in your DNA to lose hope. Instead, you let God give you a piggy back ride and you loved…..Judah is your reward for that. Your life is your reward for that… And you are living the very most magnificent existence right now!!


Sticks and stones have never broken my bones but words have been known to hurt me.

I think we have established that I am a bit of a sensitive soul. I can be brought to tears through a musical montage, an old photo, or a beer commercial. While this is my truth, It is also true that I  love a good laugh…even at my own expense. I can take a joke, take a jab, and dole out burns like the wrong end of the marshmallow stick. I don’t usually get offended and am careful to not offend.

I have, however,  been at both ends of this sword and they both slice deeply.  Let’s get into it….

Before Judah, I rarely used the word retard  or retarded (insert severe shudder here ) and if I did it always felt wrong.

Side bar : I once slapped someone at Lourdes camp because she called a girl with special needs “a retard” . I got honor camper that year. Not saying that’s why, or it was right, just saying.

Anyway, I most certainly never used that word to describe someone with special needs and I am pretty sure none of you have either. …Actually this reminds me of years ago. It was one of the many times when I would say “that’s so gay.” This time though,  my friend who was a lesbian was next to me and she was openly offended… I was sincerely baffled when I uttered “don’t take it personally, I didn’t  mean it like that. I love everyone,  I’m just using it to mean stupid.” She told me I was putting my foot even further into my mouth. She was right. I am embarrassed. I am sorry dear friend. I get it.

So. How can I help you get it? I know you don’t mean anything negative about my son when the word slips from your lips. I am sure as hell not mad at you. BUT for some reason, hearing it destroys me. I am not even sure why?? Maybe because children like my Judah used to be addressed in a derogatory manner with that word . To think of it happening to him wrecks my being. Maybe it’s because the word is ugly (isn’t it though?)  or because I look at Judah and see a sweet, beautiful, mischievous boy and I don’t see a disability ??? Maybe I’m in denial? Too sensitive? Scared of stigma? Maybe it’s residual pain left over from all the what-ifs that were built around Judah’s birth? Honestly, I don’t know why that word crushes me so. I do mean it when I say: it’s not you, it’s me. It is my kryptonite. In fact, every parent I have met in the world of special needs, crumble when they hear the “r” word. Some more than others. Some fight for laws,( I’m not kidding, click here)  some inwardly struggle, some vote friends off their island, some hand out information packets. All suffer. And if someone is suffering…even if you don’t get why, but it’s because of something you said…well then , I’m going to go ahead and assume you aren’t going to want to say that thing anymore. Most of us never intend to cause others anguish.

So, where does that leave us with all of this heavy, heavy stuff? I  With me… I ask this. If you say it, accidentally in my presence, please acknowledge your error. We don’t have to get all into it and make things awkward and weird. Just a simple “my bad I’m working on that” will suffice. It’s telling in two ways, one, you value my child’s worth and two you are a human working on self improvement; just like me.

Now, if you are not in my presence and you say it or, in that case, any derogatory remark about any type of minority; look inward. Recognize that it makes you feel yucky inside and that the yucky feeling is your heart, gut and soul telling you it’s wrong. Then, make a conscious effort to remove the yuck…because if you’re feeling it, imagine how the targets must feel?

And, if you consistently riddle your vernacular with unkind slang for sport… well, then I hope I never meet you…but if I do, I will pray for you.