And We All Shine On

Dear Milo,

You've made your first trip around the sun! The thing is, Critter, you shine brighter than the sun ever could.

 

I hope you always feel how much you have been loved since before we could even imagine who you would turn out to be. I hope you always know that you have been wanted and dreamt of and hoped for since long before I even knew your daddy. I hope you always understand that you make us so incredibly happy, proud, and joyful and that you have blessed us beyond measure. I hope many things for you, but mostly I hope you have love in your life; and you will because your daddy and I love you more than we could ever express.

We've learned so much from each other this first year, or at least Daddy and I have learned so much from you. We've had adventures and mishaps, routine and anything but, blissful happiness and frustration like I'd never experienced. We've had literally thousands of bottles fed, dirty diaper changes, hundreds of hours spent pumping milk, and typically two wake-ups per night.

You have the sweetest, most generous smile and the kindest eyes but you've got a stubborn streak and challenge that stereotype about "Downs kids always being happy." You have a tendency to startle easily at loud talking or laughter but your favorite fun is banging two toys together to make maximum noise. You have an independent and adventurous spirit but nothing makes you happier than seeing Daddy walk through the door every evening.

This hasn't been the easiest year. We hit rock-bottom the first time we walked through our front door without three-day-old you; but we got through it. We are learning as we go when it comes to things like advocating for you to receive more therapy; but we're managing. The worst possible thing about my diagnosis is how it could affect you; but I promise as long as I have a breath in me I will never stop fighting for more days with you.

But it's been an amazing year. You've been healthy and happy and growing and developing and learning. You've been surrounded by family and friends who love you. You've been the best thing that ever happened to me and Daddy.

I can't promise what the future holds and I am slowly learning to accept that now more than ever. But I can promise that you will never be alone. I can promise that Daddy and I will always try our best to make choices that will steer you towards love, family, God, and goodness. I can promise that we will pursue every opportunity for you to thrive and to have access to pursuits in education, health, hobbies, culture, sports, career, personal life, and whatever lights you up from within. I can promise that you will end each day knowing that you are loved. I can promise that your daddy and I love each other and you always. 

I will cherish the memories of the newborn you have were and I will cling to what's left of your babyhood; but I am so excited about the toddler you are becoming and the glimpses you show us of the little boy that will be here all too quickly. I pray that you are kind, compassionate, generous, and open-hearted. I pray that you love to learn, to explore, and to reach out to others. I pray that you are a kid who enjoys the outdoors, animals, sports and books, and that you are an adult who values family, friendships, work ethic and peace. I pray that your beautiful heart leads you to do good. You inspire people you've never met and you are changing the world just by being yourself. Your life is a blessing to us all. Thank you for making me a mama and for bringing more joy to our family than we could have imagined. 

Let's hold hands and hearts for many more trips around the sun together.

Happy First Birthday, sweet Milo.


I love you, I love you, I love you,

More than we deserve

Happy World Down Syndrome Day! How incredible that there is an entire day dedicated to a worldwide celebration of the lives of individuals blessed that little something extra. 

March 21 is World Down Syndrome Day -- 3/21 for Trisomy 21, referring to the three copies of the 21st chromosome that individuals with Down syndrome have. Last week I delivered awareness ribbons to Milo's pediatrician, our OB-Gyn who cared for our pregnancy, the genetics counselor that delivered our diagnosis, Milo's "baby school" teachers, and others that have been supportive of us in our short time as parents, but really this extends to everyone who has been so wonderfully encouraging to us!

"Thank you for being a supportive part of our experience raising Milo! 

We are just getting started and are far from perfect, but we hope that 

when you meet a family adjusting to a T21 diagnosis, 

you'll remind them that Milo is loved, thriving and is 

more of a blessing to our family than we could have imagined!"

I've only shared bits and pieces of our experience with diagnosis. Down syndrome came into our lives suddenly, I suppose; or at least once things were in motion they moved quickly. We had an NT ultrasound at 14 weeks pregnant -- and what I still think is funny is that we almost didn't have it; we knew the results wouldn't change whether we continued but since it was covered by our insurance I scheduled it around work at the last minute. Before I'd even driven home from the appointment I got a call that we needed to come in and speak to a genetics specialist right away. A day later she explained that the ultrasound showed "soft markers" for a genetic abnormality, and could be one of three conditions-- Down Syndrome or two much rarer, almost certainly fatal trisomies. I took a blood test to find out more and we spent a week worrying about the possible results. All I could think was, 'what if my baby never gets to hear us say 'I love you'?' 

When we found out that the blood test showed a 90+% chance of Down Syndrome, it was a relief. Sure we would have challenges, sure there is a likelihood of health problems that could occur in his lifetime, and yes there is uncertainty---but nothing in life is certain, right? When it all comes down to it, everything is a leap of faith and we have to trust that God doesn't make mistakes and will provide the strength, comfort, people and resources we need to face anything. 

That's not to say that the entire journey has been easy-peasy and roses, either. I'll admit that in the week we waited for our blood test results I read credible and not-so-credible websites and too many Baby Center message boards; trying to figure out how common it was to have a false-positive result from an ultrasound. I even tried to measure the fluid in the ultrasound image we had, trying to determine if it was greater than the measurement that concerned the geneticist. 

My worry, if we did in fact have a child with Down syndrome, or something that would affect his health and development even more severely, was not that we would be able to love, connect with, and care for our child... we were doing that already. My concern was knowing that, with a diagnosis, this baby's life would be just a bit more challenging from the beginning... not just because it would likely take him longer to reach milestones, learn some things, or develop the life skills to be independent like his peers; but because the world at large would see him differently. We could raise this child to the best of our ability and he could grow up to be the absolute best version of himself, and there would still be some people who would never accept him, never see his life as having the same value as someone "typical," who would question why we continued with this journey at all. 

Well I'm learning more and more to block those people out (they're usually the ones commenting on Yahoo! articles anonymously); which is not too hard because the sound of others supporting Milo and families like ours is SO LOUD. All around the world, individuals, families, advocates, professionals in medicine, health, education and research, and others are SHOUTING THEIR WORTH. We are more alike than different and everyone's life has value -- everyone has something good to contribute to the world. 

And we've been thrilled to see that already, Milo brings out the best in people. We've been so supported and wrapped in love, prayers and strength since the moment we shared the news that we were expecting him. And now that he's been earthside for almost 11 months (!!!!!) he's charmed everyone he meets, challenged expectations about Down syndrome, and perhaps more than anything, reminded people that he's just a baby like any other. He will do things at his own pace and maybe differently than others, but he will do it with an army of support and love behind him. 

I should add that our positive outlook on Milo's endless opportunities and potential is in part due to the fact that there's never been a better time to be born with or living with Down syndrome. Our society has made huge strides in acceptance of and inclusion of individuals with Down syndrome and other disabilities -- there are more resources available to foster development, for education, including college, for inclusion in recreation with their peers, for learning workplace and independent living skills and eventually putting those into practice as adults with jobs who live on their own or with roommates and even partners. We expect that Milo will have many if not all of the opportunities that any "typical" child will have, should he choose to pursue them. This is only possible because of the dedicated, brave families who came before us to fight for the rights of their loved ones to be able to live life to the fullest and have the opportunities to pursue their greatest potential. This is a very special club that we have become members of -- and the best part is that anyone is welcome!!

Please, do remember our family and share our story far and wide to remind the world that Down syndrome is a blessing, not a burden. We never expected to find ourselves in this journey but are so grateful that God gave us more than we deserve. 💙


Chromosomally Blessed,