In honor of Judah’s impending 3 month birthday, I thought it only fitting to talk about the 3 copies of his 21st chromosome. Typically, a person is born with 2 copies of 23 chromosomes or a grand total of 46. In Down Syndrome there is an extra copy of the 21st chromosome resulting in 47 total. Sounds like extra love to me? On a side note: this is also the reason that World Down Syndrome Day is celebrated on March 21st or 3.21. Did you hear that family and friends? We were just given ANOTHER day to celebrate, how exciting!!! Now, I am new to this journey, but as I understand it, this splitting of the chromosomes is for the most part completely random. For some reason, the incidence of Down Syndrome does increase with maternal age , however 80% of children born with Down Syndrome are born to women UNDER the age of 35. There is a way to check for Down Syndrome prenatally and…. here’s a shocking statistic for you, 90% of couples that find out their baby will have DS, abort their baby.
Divine intervention ensured Bobby and I did not ever have to make this decision. Through a combination of lack of insurance, switching doctors and impeccable timing, we were unable to have the testing done. I would like to think that because this baby was made from love, we would’ve chosen the genetic counseling, but by the grace of God, we will never know for sure.
So, a woman recently, wrote an article on Yahoo parenting called: “Why I Terminated My Pregnancy After Learning My Baby Had Down Syndrome,” I know this because in 3 short months I have been connected with numerous, beautiful people on the same pilgrimage as myself . Most of them I follow on Instagram and I get the privilege of watching their amazing families in action. They mentioned the article, its misconceptions, and how we should band together in solidarity using #lifewithachildwithdownsyndrome to show what life is really like with these cherubs. As a woman that loves to fight for a cause, I immediately knew I was going to be in. I was going to jump in with both feet and then even stomp around a little bit……..but first, I had to read the article. It stung. It hurt because this was my little angel she was saying would be in a constant “toddler-like” mindset. It also scared the crap out of me because I very well could’ve been this woman. Therefore, I choose not to judge; rather to educate. Some of the comments made me feel even worse. People without correct Down Syndrome information agreed wholeheartedly with the author. They truly believe that Down Syndrome individuals “cost millions of dollars” or “never will be adopted.” I just found out yesterday; there are people lined up to adopt babies with Down Syndrome. Judah’s pediatrician calls it a “heart-warming” disability and Bobby’s co-worker, who has a daughter with DS, “the Cadillac of disabilities.” I would like to add, there were positive comments in the article. They were made by people who have a relationship to someone with Down Syndrome and they all took the high road. Good for you.
The woman said that she was terminating her pregnancy because as a mother “she wanted to do what was best for her child.” WHAT? I need a freaking umbrella to shield me from the shit storm of misinformation. Where to even start addressing these delusions?
First of all,I’m going to start with some super cool facts. 99% of individuals with Down Syndrome are happy with their lives, 97% like who they are and 96% like how they look. The rate of divorce is lower in families with a child that has DS, 79% of families say they have a more positive outlook on life because of Down Syndrome, 97% of siblings have pride in their brother or sister with DS and 88% of these same siblings felt they were a better person because of it. Also, people with Down Syndrome, go to college, get married, live on their own, drive cars. My mom met a guy who rides a motorcycle and there is a girl with Down Syndrome in his motorcycle “gang.” I LOVE that girl!!!
Next, I’m going with my personal experience….. If someone told you that you had to go through a week of: gut wrenching, debilitating, nightmare and shame filled, pain… for a lifetime of heart swelling, mystical, “can’t wrap your arms around it” big, kind of love… would you do it? Well, THIS is what I wish I could explain to the author of the article. Sure, it was painful, it was an indescribable hurt…and you know what? I’m not even sure why? It was a million reasons. It was that my dreams of what would be were shattered….pretty much a planner’s worst nightmare. It was that I was afraid. I was afraid people would be disappointed in me, in Judah, in being around our family. It was that I was embarrassed. I was embarrassed to tell everyone, to be pitied, to be worried about. It was that I was concerned. I was concerned that Calvin’s life would suffer, that our life would have to be dedicated to the disability, that I would never be able to love Judah enough. Mostly it was disbelief. Those who know me, know I had real anxiety for nine months about having a child with Down Syndrome… and it actually happened.
3 short months of living with 3 copies of the 21st chromosome and my life is more gloriously different than I could have ever imagined. Some of Calvin’s recent tributes to his brother: “mom, he’s so cute,” “mom, Judah is my best friend,” “mom, that’s my brother he’s my Valentine,” and TODAY …”mom, he’s beautiful.” I can’t even type this without crying from pride!!! Some other perks…all of my relationships are richer. All of these people who have come together to support and encourage me have enriched my life beyond anything I could ever imagine. You think you love your family and friends? Wait until they storm your door just to reassure you how amazingly beautiful your baby is! I still can’t even wrap my head around the support. And lastly, I can say I’m a better mama for it. When Judah was fighting for his life at just 20 days old. One day after his original due date…all our Down Syndrome fears went out the window as we prayed for his survival. I saw that protective lioness in me. I really started to fiercely guard my baby cubs during that ordeal. I will always fight and root for baby Judah. His slower, but sweeter, milestones will all be a dazzling victory that I undoubtedly will weep about. So, I must argue with the author of the article. The best thing a mother can do is to have a child that shows them the true meaning of unconditional love. I thank God every day for ridding me of the ignorance and fear I once had and for replacing it with such a gratifying gift. Happy 3 months Judah Michael. We really are #theluckyfew.
Some Instagram hashtags to check out: #nothingdownaboutit #downrightperfect #theluckyfew #designergenes #downsyndromecutie #t21 #itsonlyanextrachromosome #lifewithachildwithdownsyndrome
As the St. Patrick’s Day festivities kick off with “Green Beer Sunday” and Bobby is hanging up the obligatory Shamrock lights, I sit here on Tipp Hill wistful to say the least. There’s so much history….and by history, I do not mean the history of those that migrated to this tundra of a city from Ireland (who, these days, I find myself getting mad at for picking Syracuse) but rather the history of my very own experiences and my moments
As a kid, I did not generally enjoy St. Patrick’s Day. I was just a wee bit Irish and and a whole half Italian. Really, the only way to celebrate St. Patrick’s Day as a kid was to don some green. There were no feasts, traditions, gifts or otherwise at our house, just a good ol’ green shirt and maybe some green socks if you wanted to get real crazy….. Then it happened….
Seventeen years ago, in 1998, I fell into an opportunity to move to the (semi) grown up version of Disney World. I’m talking about the magical land where adults move when they are not quite yet ready to become adults, college for the working class, where old houses are plentiful to rent and in glorious condition with original wood work, where the walk-of shame is more funny than shameful because you’ll run into a couple of friends on the way home Saturday morning in their fanciest, Friday night attire. A land where solo cups litter front porches the minute the weather starts to break and can jam and bbqs are bursting at every block . It’s a land where people are more than willing to help you dig out your on-street parked, buried, car. They will invite you in for a beer during their sacred time of celebration, or as us laymen call it; the month of March. It is a place where friendships are genuine, plentiful and all inclusive. It is my home, my love ,and my heart. The one, the only, Tipperary Hill.
I had never heard of this place growing up and since that magical moment I was thrown into all its green glory, well,…I still can’t bring myself to leave.
This is where the nostalgia kicks in. I remember so much, how can I ever go? I hold onto those memories like my baby holds my hair….desperate and proud. I wanna go back (insert foot stomp and pout here.) Do I want to really be the “lady” feeding her son a bottle, looking out the window, as fuzzy, kelly green boas swirl by my window? The answer is NO…and yes.
I can remember, like it was yesterday, dangling paper shamrocks from the ceiling at 222 in preparation for my first St. Patrick’s Day on Tipp Hill. The enchantment was in the air everywhere and I’ve felt it ever since. I felt it when I would head to Coleman’s for the green beer delivery and carelessly stay for one too many green brews even though Monday would be even more “Monday-ish.” I felt it when I cheered on hundreds of shamrock runners in blistery, blizzard-like conditions. I felt it when I filled my thermos with “coffee” on St. Patrick’s Day Eve and trekked up to the upside down light, so at midnight I could see a shamrock get painted and then destroyed moments later by slush, cars and footprints. I felt it when I was 7 months pregnant, St. Patrick’s Day was 70 degrees, and Syracuse was played (and WON) on the big screens outside Coleman’s. I also felt it that same, sober, St. Patrick’s Day when I walked at least 3 miles visiting bars where people spilled out onto the streets. I’ve felt spiritualistic, sparkles from the early morning St. Patrick’s Day breakfast to the midnight mayhem at the upside down light and I have felt it through every type of weather imaginable.
Now, since I’ve yet to meet someone with a DeLorean, I cannot go back. I can look at pictures and relish those moments but I can not successfully recreate them. Things will always be different but they will be the same too.
I can pass on my memories to my children and I can help them make more. I can make sure the month of March is more than one green-shirted day because it has given so much more to me. I can visit any time I’d like and always have the privilege of being embraced by this emerald city….but I can never go back. That’s the thing about nostalgia. It is memories, it is marvelous but it is also melancholy. It is because you wished you embraced more, took in more, talked to that one person more and held on tighter. But I think, you can never hold on tight enough. Time will always slip through your hands until that time has passed and you can’t have it back and so you wistfully miss it. That’s the melancholy part, but here’s the marvelous part… The alternative means to have never lived, it means I wouldn’t have a jammed packed photo-bucket account or years of yellow paged photo albums to leaf through. It means I wouldn’t get to say “hey, do you guys remember the time we (insert absolute hilarious time here)” and if you know me, you know I say that often. It means I wouldn’t be ready for some of the best days of my life that aren’t here yet and it would mean that I couldn’t bring to tomorrow all of my lessons, love and laughter of yesterday!!!!
Well, it’s that time of year again. The time to let go of material possessions, to give more than we get, to sacrifice, and even suffer. It’s God’s way more serious version of a New Year’s Resolution,…or as us Christians like to call it ; Lent.
So, what to “give up?” I’ve been giving things up since I was at least 8 years old. I remember in 4th grade I gave up chocolate. We took it very serious in our household, except on Sundays, when you could break your fast. Now, I still don’t know if that was a Shore thing, an urban legend, or a little reprieve from the big man upstairs. In any case, it was a thing at our house. Most likely it was because my parents, who usually gave up beer, needed a tasty adult beverage by Sunday or their three angel children would drive them clinically insane.
Anyway, this particular year, we were reading “Charlie and the Chocolate Factory. As a preview to the book, ( us teachers call it an anticipatory set) the teacher wanted us to taste chocolate and describe it. I was a little kid suffering inner turmoil. Do I break my fast? Do I disobey the teacher? It’s something to be said that I still remember this moment with agony and Catholic guilt. Admittedly, I cried and when my teacher asked what was wrong and I told her about my debacle. I don’t quite remember the lecture, but ultimately, in the name of education, I ate the chocolate and cried the whole bus ride home.
Very long story short, I don’t want to give up something that I will agonize over if life throws me a curve ball and I break my (other than Sunday) fast. Now, I could go the route us Catholics have all contemplated before, and “give up giving up something for Lent……… but who are we kidding, it’s been done and I’m to much of a pioneer to travel that path. So, here I am on a big Fat Tuesday thinking about what is most important.
My first thought, give up sweets? I took that habit on as a 4 month pregnant mama and haven’t let go yet….but, that’s easy. It’s trivial. BTDT. Drinking during the week perhaps? Let’s be honest, I’m a new mommy who’s going back to inner city teaching and who just happens to have a dog with cancer. NOT GONNA HAPPEN! Even more honest (sorry mom) not a good time to rid myself of the occasional, accompanying cigarette either! Pizza? No way, too much nutritional value or so I tell myself….
This brings me to the intrinsic. What can I do to reward my heart that is still a sacrifice? The first thing that comes to mind is to be more present. Basically, a multi-tasker’s nemesis. I mean, I’ve done the intrinsic Lent before. Do something nice for someone everyday, tell people you love them more, pray every morning….but this one? How do you even go about it? I’m not even present writing this. A toddler and a dad are wrestling, a baby needs snuggling, a dog needs petting and I am writing this blog…… So, to you all and to God above,it is a challenge… this will be my Lent… I will step away from the laundry, the bills, the swifter, the mind swirling, the planner, the screens… and pay more attention to: a terrible episode of Dora with my son, a sleeping baby in my arms, a silent snowfall, soft doggie fur, making coffee, eye contact, hugs, smiles, warm kisses, life in the moment it is happeningPURE JOY.
Well, that shouldn’t be so hard.
Some other Lenten favorites:
- giving up: pizza
- giving up: NOT wearing my seatbelt (stuck for life! My best one)
- give up: spitting “honking” ( my parents made me do this one…sorry I had allergies guys 😉 )
- giving up: keeping my phone by me in the car
- giving up: potato chips (Lou remember when you told me to close my eyes and then you put one in my mouth a week before Easter…I was destroyed. lol)
- giving up slouching (that may have been a NY Resolution stolen from Shannon Mary but still a good one)
- do a kind act every day…tough to remember but really rewarding.
Whatever you give up or give into, may you have no regrets, no guilt, no shame and may your ingredient of sacrifice be just enough to get your recipe right. xoxo
Oh, that playful Joy has a sweet hiding spot these days. I am having a difficult time finding it. I know it’s there, I know it will be back to play again but at the moment it is alluding me. Come out, come out wherever you are…It was not too many glasses of wines after I posted about “Finding Joy,” that I burst into tears and continued for two days to mourn Vinny’s impending trip to Rainbow Bridge.
Perhaps, my first post was to be a convincing one? Maybe the wine cut through my bullshit like butter? Anyone could see I was trying to have a pep talk with myself about the logical reaction I should strive for in the face of pain. This is why I took the link down about my relentless search for joy in everything….. Was I a fraud? After all, I kept saying things like I was lucky to be blessed with Vinny and it was all on my own terms. But, the truth is, on the inside I was aching that raw, can’t catch your breath kind of pain. The one makes you look deep into your soul and wonder how the HELL you’re going to make it out on the other side alive. I had just found out my best friend was dying and there wasn’t a damn thing I could do about it. Well, the fact is, I know everyone loses their pets, I know I must carry on and be strong for my sons, I know that to fall into the rabbit hole of despair would just be silly….but I’m sad damn it so, it shall be.
Then today I read a quote from the wisest creature of all; Winnie the Pooh… Pooh says, “How lucky am I to have something that makes saying goodbye so hard.” This made me sigh a relief……I found you Joy, I found you!!! Being sad doesn’t always make you a fraud to joy. It doesn’t mean you’re doomed to a life of showerless mornings and uncombed hair. It doesn’t mean that you won’t ever hear the sound of your own laughter again. And It doesn’t always mean that all of your good intentions should be negated like misspelled words meeting white out. It means grab the broom when you see a million pieces of your heart shattered on the floor, because you can be both. You can be falling apart AND trying to pull it together. One does not equal the other. Sadness does not forever void you of happiness. Sadness dares you to stop it. Find a way; use everything in your arsenal. Use the kind words from your friends, use compassionate tears from your husband, use worry from your family, use old pictures and snuggling with your furry friend while you still can. Use God. Use maybe too confident words of encouragement from yourself, use wine, use smiles from your babies, and a trip to Margaritaville to forget. Use quotes from a silly yellow bear. Use whatever the hell you’ve got to find that joy, because it’s somewhere just waiting for you to find it.
I love you Vinny and I sure will miss you my friend.
I started this blog as bettyannblog when I was oh.so. naive. I was in love and cherishing my pregnancy. I felt I had something to say. If you look at my past 3 (a whopping 3) blog posts I had a little bit to say. I loved my life, my son, my marriage….is that something to say??? I’m afraid it isn’t. To the masses, I was a period in a sentence, a stop light on the way to work, a trip to the store for milk. No wonder I had writers block!! Now, world, I have something to say. So, my life has been reworked, and ceremonially my blog has been renamed to: Finding the Joy. Why?? “finding the joy”… Well, that’s a story in itself that will be revealed and unveiled. But, the short answer,……..I had a baby!
He changed the name of my blog, he changed my WORLD. We named our baby, Judah Michael, meaning: to be praised. His birth was extraordinary. It was full of all of the extraordinary ordinaries that births entail, but it held so much more. Our Judah was born with Down Syndrome. Swirled in the tornado of love and pain and confusion I instagramed his first pics as #joysofjudah and it stuck. We were doused with information and isolation, compassion and confirmation. We were thrown into this new normal and so was my blog. And now, 2 months later, I have chosen to rename and remake my life. I choose to not rename my life with a trip to Holland , but rather to include the “Italy” in all my obstacles. This is where I find the joy. So, welcome to finding the #joysofjudah, but more importantly, I welcome you to try pushing your joy through the pain. Push your rainbow through that cement wall, push sun through the clouds, push smiles through frowns and find the joy! I am in love with my life because i grasp every strand of it and hold on tight! It bursts, it stings, it loves. It is. ………and it is all mine, thank you very much!!!