All life’s worth celebrating.

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This morning I read a post on my online support group from an expectant mother of a child with down syndrome.  She hasn’t told any of her friends about the prenatal diagnosis, only a few family members. She was sharing her concern and seeking advice on how to ensure that the birth of this child will be a celebration. This got me thinking about the moments after Annie’s birth.

Do I remember those moments and first days as a time of celebration? NO. Were there more tears of joy than sadness? NO. Was my time in the hospital with my first-born child even close to what I had pictured during the long nine months of my pregnancy? NO. Do I remember words of congratulations? NO, I am sure there were, I just don’t remember them. I remember constant love and support, but it wasn’t the party with cigars and balloons and champagne. My room at the hospital actually looked more like a funeral home with huge bouquets of flowers. Do I think her birth would have been easier to celebrate had we known for sure about the Down Syndrome before she was born? I will never know. What I realize now though, is it doesn’t matter. It’s our story, our path. If I could, would I go back and change it? Of course. I’d have been tremendously happy in the hospital, I wouldn’t have cried, I would have thrown the world’s largest party. But there was no way to know then what I know now.

There was no way to know how much she’d make us laugh. No way to know that every time she wakes up, it’s with immediate clapping and yells of pure joy, like she’s saying “Yes! I am ready for this day and can’t wait for all the fun I’m about to have.” God, I wish I could wake up like she does. We didn’t know then that she’d be super healthy. We didn’t know much about her diagnosis at all, and the unknown can be very scary. Mostly though, I never thought I would be happier with it than without it, that that first month of praying for God to take it away and change her, I was so wrong. She is just how she should be, is meant to be, and I wouldn’t take a million dollars to make it disappear.

So to this expecting mother, I would advise her to be upfront with her friends.  To tell the truth and to invite them to celebrate with her family. To share with them the incredible stories of families who have been touched by this amazing gift.  And that it is really something we are happy about and that is how we want to welcome this baby, our baby, into the world.

It’s not that easy to do though. It’s even not fair. That when you learn of a diagnosis of Down Syndrome prenatally or at birth, sharing the news is something to worry about, to fear even. Most expectant moms are setting up that first photo shoot for the arrival of their newborn and going through hundreds of templates to find the perfect announcement to mail to all their family and friends. I’m not saying that parents of babies with Down Syndrome don’t send out announcements to celebrate and welcome their babies. It’s just that the news is different. Reactions aren’t the guaranteed “Congratulations” most parents get to receive, they are mixed. Some of joy, some of concern, lots of sorries, lots of worries. Many don’t know that it’s something to celebrate just as much as any life. But because it’s something most expectant parents are relieved isn’t part of their children, something people have extensive testing to determine it’s unwanted appearance, something some choose to even terminate; it’s harder to deliver the news. It’s blurry and confusing. When Annie was born I was terrified by how others might react to her diagnosis. I was the most fragile I have ever been. My heart at the time was broken, I needed my support system to hold me up and not let me drown.

The first two days after Annie was born were a complete blur. But on the third day, I sat down to announce the birth of my daughter. This is what I wrote….

 4 April 2011, Roma

Dear Family and Friends,

Mike and I are proud and extremely excited to introduce to all of you the newest member or our family: Signorina Anne Kathleen Beazley! Annie was delivered via C-section on April 1 at 6:59 p.m., Roma time. She weighed in at 2.84 kg (6.3 lbs) and measured 50cm in length (19.7”). The delivery went incredibly smoothly and we couldn’t possibly imagine better medical care than we have received here in Roma. Physically, Mamma is feeling good and is healing quickly. I can’t wait to get home with Papà and little Annie. She is so beautiful and we can’t wait for her debut in the States to meet all of you.

Here’s the latest about Annie:
Annie has been diagnosed with Down’s Syndrome. We knew this was a possibility since the 20-week ultrasound, so we were somewhat prepared for this diagnosis. The doctors are running tests on Annie to ensure that any pathologies frequently found in babies with Down’s are absent. As of today, our third day in the hospital, we have only wonderful news.
Here’s what we know:
Ultrasound on abdominal area to check her kidneys, liver, intestines, and so on. Result: All good. Ecocardiogram to check her heart formation. Result: they found an open Bottalo duct (supplies oxygenated blood to the baby in utero) that is frequently found in all babies, and will hopefully close on its own. Not of concern. Heartbeat monitoring. Result: All good. Aural Exam to make sure she responds to noise levels according to benchmarks. Result: The specialist said results are inconclusive insofar as he cannot say Annie hears perfectly. There is a minor deviation from benchmarked results, but this could be attributable to the small size of her ear canals. We will re-check her hearing in a month and do not anticipate significant problems. Genetic blood exams: A specialist from Università La Sapienza visited with us and said Annie’s genetic/chromosomal make-up needs to be checked. They withdrew blood today and have sent it to the lab for examination and official diagnosis of Down’s. We expect results in a week or less. What all this means is very good. Any organ malformation found could have potentially led to surgical intervention, but because the doctors have not found anything, we don’t foresee any necessary interventions. This is GREAT NEWS!
Papà is keeping both Mamma and bambina in the best care. Annie is keeping everyone, her visitors, nurses, etc. entertained and already has more nicknames than anyone we know – patatina (potato chip) and La Beazlina are some of our favorites. Mamma is having a hard time being far from home and from so many loved ones. Although I have a very loving group of friends here, I miss all the home-based support  – ALL OF YOU! – whom I grew up relying on in the States. I’m scared of not being able to give Annie all the care she needs here because of the language barrier and other factors, so I’m asking for some extra support during these particularly trying times. My knowing that you are thinking of us and praying for us makes things easier and reminds me of the “sea of love” in which Annie has already enjoyed swimming.
We have attached a few of our favorite pictures from these first days in Roma. We hope you enjoy them as much as we do, and we invite you to join us in welcoming Annie to the world. We’re so happy to have her here with us! Please be in touch with us however and whenever you like – we love all forms of communication media!

WE THANK ALL OF YOU FOR YOUR SUPPORT AND LOVE. WE MISS AND LOVE ALL OF YOU.  MORE THAN ANYTHING, WE CAN’T WAIT FOR YOU TO MEET OUR LITTLE PRINCIPESSA!

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Writing this letter was the start of my recovery. The beginning of the celebration that hasn’t stopped since. I needed those I loved to know and to welcome her the way she deserved to be welcomed. Sometimes I still get overwhelmed with guilt from my initial reactions to her diagnosis and birth. There’s nothing I can do to change those first few days. Even the first months. But one thing I know for certain is, we’ve celebrated her life everyday since I wrote this letter and the whole experience has made it so a day won’t ever go by that we don’t. I didn’t know this type of celebrating was possible.

I thought I needed all my friends and family to mend my heart. That they needed to make me better, and they did help by listening to my tears and telling me it would be okay. But now I realize that I really only needed one person. The moment she was born, Annie already had the plan for fixing her mother’s heart.

Thanks my little Patitina! I love you to the moon and back.

2 responses »

  1. Colleen – you and Mike are doing a WONDERFUL job with Annie – no reason to EVER feel guilty for the scary times in the beginning – remember – besides the DS diagnosis – you were also a first-time Mom who was across the ocean from nearly all of her family!! That is scary in itself LOL 🙂

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