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Showing posts from 2017

21 Reasons Why Life Is Better With You, Henry

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21. When I look over your crib to reach in and get you in the morning, you immediately smile and start our day filled with happiness.
20. You always score free cookies from the bakery at the grocery store with your smile, and you always share a bite with me.
19. You have turned your big brother into a caring cheerleader who at least once a day calls me in to the room to see awesome new trick you are doing. The other day, he celebrated you turning the page in a book all by yourself. He is a remarkable three year old and I know you have influenced him already.

18. You have taught me to be tough and fight for what really matters in life.
17. Your Down syndrome diagnosis has brought us into a loving circle of families and given us some of our greatest friends.
16. You still love being rocked and held and it's been so wonderful to have the snuggles.
15. You showed me that I have the strength to sing you to sleep on an operating table, and showed me that you have the strength to hand…

What is Success, Anyway?

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Recently, we spent some time with another family with two children, one of whom has Down syndrome and is the same age as Henry. I don't often feel comfortable enough to share my fears about our future, but I did with them. I told them that I am really scared. I see many other families with kids with Down syndrome sharing their day to day lives truthfully. They share that vacations are hard. They share that school is hard. There are countless meetings. They share that hospital bills are bankrupting them.
They share that they are tired, and that the challenges their children with Down syndrome present make life harder. Are they entitled to share their opinion truthfully for all to see?
Without a doubt. 100%. Does their reality scare and worry me about my future and the future of my family?
Without a doubt. 100%. I worried aloud about my son's future successes -- or possible lack thereof. I worried aloud what this meant for our family and for our other son. I shared all o…

To Henry, On Your First Birthday

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Dear Henry,
     I have this tradition of writing letters to Eli on his birthdays to tell him how much he amazes me each year, and how happy I am to get to be his mom.
Now, it is your turn.
You are one! This has been the fastest, wildest, hardest and most wonderful year of my life.

To see what you have gone through in your first trip around the sun while still managing to be happy and easy going is humbling. Your strength and bravery is inspiring. You smile during blood draws,  you wake up from surgery with a smile on your face. I never knew an infant could be my hero until I met you.
One of your many echocardiograms this year.
After your adenoidectomy and ear tubes. You did so well!
You make me a better person every day. I am more patient, kind, grateful and happy because you joined our family.
You have also helped your brother to become an even more caring person. I remember the night we brought you home, trying to read a book about brothers to Eli. I couldn't get through it;…

You Can't Pour From An Empty Cup

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Being a mom is the hardest job I have ever had. I have struggled with juggling it all -- my career, finding child care, doing the laundry, cleaning floors, grocery shopping, cooking, paying bills, lighting candles and spraying Febreze so my house doesn't smell like cat -- and raising two tiny humans on top of that. You know, humans who need food and drinks and baths and pull every single toy out while you try to take a four minute shower. One of my tiny humans happens to have multiple appointments per week that I am in charge of coordinating and getting us all to. Usually conveniently right around nap time.
You get the idea. You know what I'm saying because this is probably your reality, too. Even if you are one of the lucky ones with a very supportive partner, it can still be completely and totally overwhelming.
You give 110% of everything you have to everyone around you -- to your kids, to your partner, to your colleagues -- and there's never much left for you. Maybe at…

Overhearing the "R Word"

My day started innocently enough. I woke up with the kids, fed and entertained them. Had a few extra minutes so I decided to take care of an errand. I stopped in to our local animal hospital, VCA Shoreline in Shelton, to pay a bill. One of the techs at the front desk used the word "retarded". Her coworker told her she shouldn't use the word, and she said "No, I dont think disabled people are retarded. I'm ACTUALLY retarded."What does that even mean? That doesn't make any sense, and it's not the least bit funny.Retarded is not an acceptable synonym for ANY word. You use it instead of stupid, dumb, lame, pointless. Is that what my child is? No, he is absolutely NOT.I'm shaking I'm so mad. I'm mad at myself for not explaining to her how hurtful that word is to me, my family, and millions of others around the world. But I dont think I could have done it without yelling or crying....neither of which would have been very helpful. I didnt catch…

Greatest Joys and Greatest Fears

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Life has been a little tough for me to sort through lately. One minute I'm happy, the next I am crying my eyes out.
As my first born hits three, I am filled with so much excitement for him. He is learning so many new things every day, and he will start to be allowed to participate in more things now that he is three. He is counting down the days until he starts hockey! It's challenging at times, but most days with Eli are filled with laughter and hope for all of his possibilities.
As my baby approaches one, I am nearly paralyzed with fear. I see how quickly we got to one year old. I blinked, and we are here. All of those problems that I know are coming for Henry seemed so far off. Now, we they seem on the horizon. Problems like not hitting his gross motor or speech milestones. Problems like surgeries and procedures. Problems like putting him on a bus, sending him to school, and trusting that the people there are taking care of him, knowing that he won't have the words to…

Dear Doctor -- Part One

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Dear Doctor,      I have a terrible memory. I forget things easily. I do not, however, forget you. If I heard your voice in the middle of a million other voices, I could pick it out. Yours was the voice that broke --no, shattered -- my heart.
    I didn't know you. You weren't our usual pediatrician, just the one on duty the morning after we welcomed Henry just before midnight the day before. You were young, with a sweet face. The nurses told me you would be coming to "discuss things further". We waited for you to arrive, and I hoped you had some good news. You knocked on the hospital room door and entered. The same hospital room we visited on our tour when I was pregnant. I almost puked on the way home from our hospital tour, I was so scared to go through childbirth again. Little did I know how much my life would change in that very room a few months later. Childbirth would have been the least of my worries. 
    You weren't the first to mention to me the wor…

The Day I Called Dibs on a Person

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I lived in a condo with two other girls my graduate year of college. 
As luck would have it, there were three guys from Quinnipiac in the unit next to us. We never really saw these mysterious neighbors of ours. I didn't care about it too much, though. I had it in my mind that I was moving to Colorado in a few months. I had put up a proverbial wall, and I was not looking for a relationship of any kind. I was counting down the days until I was out of Connecticut. I hated Connecticut. I hated love. I wanted out.
Until one September night.
My roommates and a couple friends decided to go out to a bar. We had a few drinks in our basement. It was college, afterall. Someone suggested inviting the guys from next door, so we decided to do it. Two of them ended up coming over, and told us that the other roommate was asleep. My roommate and I decided it would be a wonderful idea to wake him up. Ah, alcohol.
Off we went to his bedroom, banging on the door, screaming his name. "TIM! CO…

Five Books About Down Syndrome You Should Read

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I have somehow carved out the time between diaper changes, work, bottle feeds and preschool drop offs to read several books about Down syndrome since Henry's arrival. Each one helped me in a different way, and I am hopeful that sharing these books will also be helpful for others who may be looking to squeeze some reading in to their busy days!
1. Faces of Hope by Christine K. Wilson
    This book was quite literally just what I needed, when I needed it. Brimming with positivity and showcasing the wonder of Down syndrome, it's the perfect read for anyone who is struggling with accepting the diagnosis or envisioning the future. It was incredibly uplifting for me to look through this book while I was overcoming the initial shock of our diagnosis.

2. The Lucky Few by Heather Avis
     A beautiful memoir of the Avis family, who adopted three children, two of which have Down syndrome. Heather Avis's candid recollection of Down syndrome and it's effect on their lives makes f…

The Lucky Few

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Long before Henry came along, I stumbled upon a beautiful family on Instagram with the handle @macymakesmyday. I loved them. I loved every picture, every update, every video. I was so excited the day they adopted their third child, the second with Down syndrome, that I remember telling Tim about it. What I remember about this family, the Avis's, was that they used the hash tag "#theluckyfew". I clicked it, and soon my phone screen was filled with pictures of children and adults with Down syndrome. "Cool", I thought. "It's a hash tag especially for families of people with Down syndrome." I didn't give it too much more thought. A few years later, as you all know, we also joined the lucky few. I remembered the Avis family two days after Henry was born. I was crying my eyes out in the shower, and this family flashed into my mind. 
They were happy. They had fun. They went places and did thongs together as a family. Their lives didn't end when …

Why I Won't Be Wearing "Crazy" Socks For WDSD

I am about to post a very unpopular opinion.No, I will not be wearing “crazy” socks on World Down Syndrome Day in “honor” of people with Down syndrome.You may have heard of this idea called “Rock Your Socks” for World Down Syndrome Day. There are several different explanations of this campaign. Some wear the socks as a visual representation of chromosomes, since in a karyotype some say the chromosomes look like socks.Some say that the idea is to draw attention to yourself so that people will ask you “what’s with the socks?”, thereby allowing you the opportunity to explain that although your socks may looks different from “regular” socks, they are doing the same job as regular socks, and that this is a metaphor for people with Down syndrome.So, you would like me to wear “crazy” socks to draw attention to how my son looks different from you but basically can do the same job?A “crazy” sock is a metaphor for my child?No.World Down Syndrome Day to me means that we should not be pointing o…

Perfection

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When you have a child, that child is perfect. Not in the literal, Merriam Webster sense of the word, but in the foggy lens of parenthood sense of the word. You look at your child, and everything about them is just as it should be.

When I look at both of my kids, they are perfect to me. When I bring Eli to the doctor for his check ups, his pediatrician tells me how wonderful he looks. She tells me he talks well, and he's growing well, and she will see him in a few months for his next regular check up.
When I bring Henry to the doctor, it is much different.
The specialist that we are seeing will ask me how Henry is doing. I will tell him or her that Henry is doing well. They will run some tests, or pull out some lab work, or take a look at him. And then explain to me that, in fact, there is a problem.
No matter how many times this happens, my heart still breaks a little.
I look at his eyes, and they are perfect. They have big, long lashes and they are starting to turn hazel, j…

How Should I Talk To A New Parent of a Child With Down Syndrome?

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Maybe you know someone who has just received a prenatal Down syndrome diagnosis, or know someone who has just welcomed a child with this diagnosis. It can feel like you don't know where to start or what to say. How do you know what the right thing to say is?

We heard many wonderful things when our son was born, and we heard many not-so-great things. I think almost everyone had good intentions, but some things were a little hard to hear. I shared a few examples with the hope that you will be able to know the better thing to say, too.
1. What They Said: I'm so sorry
    What I Wish They Said: Congratulations
Often parents of kids with disabilities don't hear any congratulatory remarks when their child is born. Or, at least not at first. Please congratulate your friend or loved one about their child just as you would any other child. All babies deserve to be celebrated, and hearing some initial positivity will mean the world to the parents. Do NOT say "I'm sorry"…

How The [bleep] Did This Happen?

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I don't know that I have ever put the full story down in writing of how we got here. This will be a lengthy post, but will explain all about our pregnancy, delivery and the shock that came quickly after. I also understand how unbelievable our story is so I want to lay it all out there.

At our 12 week scan, Henry's nuchal measurement, a measurement of the fluid behind his neck, measured at 3.5. With a measurement of 3.5 or higher, you are referred to a geneticist because of an increased chance of a chromosomal  defect. The geneticist took us right away, and told us based on our history and the ultrasound, we had a 20% chance of having a child with a chromosomal abnormality. The geneticist offered us two options -- a blood test, called the MaterniT21, or an amniocentesis, which has a 1/400 risk of miscarriage. She pressured us to get the amniocentesis, and assured us she could get us in right away. She gave us a packet of papers explaining the most common types of chromosomal …

How I Knew Down Syndrome Wasnt That Scary

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When we received our birth diagnosis of Down syndrome for Henry, I am reluctant to admit I was pretty sad. I thought I was going to have this "perfect" baby, and now my head was filled with all of the things he wouldn't be able to do. While I accepted the diagnosis relatively quickly and loved our son unconditionally, I still felt very concerned about the future.  What did this diagnosis mean for him? What did it mean for our marriage? What did it mean for our family?


However, I started to notice something very quickly.

I read several books and scoured the internet for support groups those first few weeks. I soon noticed a common theme. When asked if they would change their child and take away Down syndrome if it were possible, every parent I read about said no. Not one or two parents. Dozens of families. All saying that even if it were possible to take away the Down syndrome, they wouldn't.

This really struck me. I started to realize Down syndrome must really not…

The Day When A Stranger Recognizes My Son's Down Syndrome

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There will come a day very soon that I am still torn over. I think of this day often, even though I have no idea when it will come. It could be tomorrow. It could be next month. It could be next year. It's the day when someone looks at my son and says "My [insert family member here] has Down syndrome, too!"
It's the day when he is no longer the cute baby in the stroller at the mall, but he is the cute baby with Down syndrome in the stroller at the mall.
I think the day is coming soon. The double-take has started. When I am carrying my son down the hall at his big brother's school, and the moms give us the double take. When people give me the sympathetic smile after they take a good, long look at Henry. I wonder, "Do they know?" And more importantly, "Why do I care?" There is nothing wrong with someone mentioning to me that they know someone with Down syndrome. After all, this is the coolest, most inclusive club I've ever had the awesom…

Getting the News, and Then Getting a Grip

ThefollowingwasoriginallypublishedtoFacebookonOctober 31, 2016. It already feel like a lifetime ago that we heard the words "Down syndrome" at 2 AM on June 21. I have gone through just about every single emotion since that day. And the things I felt then are basically nothing of what I feel now. June 21
Anger. I was angry that this happened. I was 27 and Tim was 25 when we got pregnant. How could two young, healthy people make a baby with Down syndrome?! We had the testing. Where they separate the fetus's and mother's DNA and look at the chromosomes. There was a 99.6% chance our son DID NOT have Down syndrome. I was completely filled with anger. To be flippant, YOU HAD ONE JOB lab company. One job. Fear. They told us basically everything that could possibly go wrong with our child. He had three holes in his heart. They told us his thyroid wasnt functioning right, and that he failed his hearing test. I started to block it all out after awhile but they mentioned likely…