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Tuesday, May 31, 2016

So you just had a baby with Down syndrome. Now what?


Itty bitty baby Quinn
If you’ve stumbled across this post, it’s likely because you are about to embark upon a journey you never planned for. I understand and remember that experience well. Learning halfway through my pregnancy that my son would be born with Down syndrome was like stepping into another world. I felt lost, isolated, and angry. I felt as if my life would never be “normal” again. I remember worrying that I would never be able to keep track of the different milestones, the doctor’s appointments, the therapy sessions. And to be honest, these things were difficult in the beginning because I didn’t know where to start. I also wanted someone to tell me the truth about my future; the internet is full of sunshine-and-rainbow accounts of raising children with Down syndrome, but I knew that couldn’t always be the case. Surely these parents were devastated by their child’s diagnosis and exhausted from the extra time a child with special needs requires, but I wasn’t seeing that on the blogs I read. 
When Quinn was born, I realized that Down syndrome was not a worst-case scenario, and despite my early misgivings, I wouldn’t change a thing about him now. My son is a light in this world and, had I known what to expect from the beginning, accepting his diagnosis would have been easier.

So first and foremost, congratulations! We often get so wrapped up in the fear and grief that accompanies this diagnosis that a lot of people forget that a TINY HUMAN LIFE just entered the world (or is on its way, if your diagnosis came prenatally). Seriously, congratulations. This isn't easy, but I promise you, it gets better. Once that's taken care of, consider the following steps:
  1. Love your baby.
  2. Love your baby.
  3. Repeat steps 1-2.

Feeling better yet? No? That's ok. It's probably because you have no idea what you're doing. If this baby is your first, those feelings are likely multiplied by 100. Don't worry, none of us knew what we were doing either. Sometimes I still don't. But the most important thing you can do are steps 1-3 above. The rest will fall into place. When you ready to move forward, here's what you need to know:


Let’s start with the tough stuff…

  • Medical Issues: Kids with Down syndrome are more likely to suffer from a myriad of health issues than typically-developing kids. They are prone to heart defects, leukemia, vision and hearing problems, respiratory issues, autism, and ADD. But before you wring your hands with worry, keep in mind that they also respond very well to treatment for all of these issues. The best advice I can offer is to find a pediatrician who respects your opinion as a professional parent. You will likely become an expert at Down syndrome care in the first year and you’ll be aware of the tests and screenings that need to take place, often even more than your pediatrician. A good doctor will take your research seriously and offer to help you find the right specialists and make the right referrals. Also be prepared to spend the first year of your child’s life visiting doctors who will rule out the aforementioned issues. My husband and I always joked that Quinn was such a good sleeper (he slept through the night almost from the beginning) because he knew how much we would need it. And we did. 
  • Developmental Delays: If you’re a first-time parent, you might not immediately recognize your child’s hypotonia (or low muscle tone), but those with experience holding newborns will likely notice that a baby with Down syndrome has less control over his body than a typically-developing child. This hypotonia is responsible for delayed motor skills like crawling and walking, and has a tendency to interfere with proper feeding and speech. As a result, you want to sign up for Early Intervention Services as soon as your child is born. These therapies will assist in the development of fine and gross motor skills and eventually speech. Both insurance and Medicaid often help families cover the cost of these services. To see who to contact in your state, visit: http://ectacenter.org/contact/ptccoord.asp

    credit: http://www.ndss.org/Resources/Therapies-Development/Early-Intervention


  • Other people’s perceptions: This was the hardest for me. Upon Quinn’s diagnosis, everyone suddenly became an expert on Down syndrome because their brother’s friend’s cousin once knew a kid with Down syndrome. These people’s well-meaning opinions and advice drove me crazy in the beginning. I didn’t want people to “pray for me” as if I were suffering from an illness, and I didn’t want to be told that “special people are chosen to raise special kids.” I didn’t feel special, nor did I want to separate my child from others as if he were already being labeled and isolated. There’s no easy answer for coping with these comments except to remember they’re coming from a good place. Remember that your child is an individual and is not like everyone else with Down syndrome.

But here’s the silver lining…

  • My life is “normal”: this was a pretty significant fear for me in the beginning. Would I suddenly become a social pariah because of my child’s disability? Would the time needed to care for him take over my life? Would my other children’s’ needs be met? Could I still work? When Quinn was born, I still worried about those things, but I can honestly tell you that my life is not any less “normal” than a parent with a full-time job and three young kids. Quinn is very much like any other child, though he is a little slow to meet major milestones (for example, when he was 12 months old, he was just starting to crawl, while my other kids were/are walking at that same age). Truth be told, some days these delays affect me and other days they don’t. The most important thing for me is that he’s treated the same way as everyone else. He receives just as much love and discipline as every other child his age. No one turns him away because of his disability.
  • Your child will light up a room: Atticus and Lucy are beautiful children. They have giant brown eyes with impossibly-long eyelashes and winning smiles. They know how to receive attention and deliver laughs. But none of that compares to the reaction I get from strangers when Quinn is around. I’ve seen women run from across a crowded store to fawn over him. And Quinn smiles brighter than any child I’ve ever known. He’s content, easy-to-please, and generally even-tempered. Except when he’s not.
  • You will make new connections with other parents: When we received Quinn’s prenatal diagnosis, I was introduced to many people in my community who are raising children with Down syndrome. These people have become my support system, my resource, my family. Their children inspire me as much as my own, and together we are a force that advocates for acceptance, inclusion, and awareness for the Down syndrome community. We’re also friends who get together often for picnics, parties, and play dates. I’ve found that most of these people would be dear friends even if we didn’t share this special commonality; it’s as if our children brought us together.

The journey you’re taking is slightly different than the one you planned for; this news is initially devastating to face. But it gets better. I can honestly say that I love my son fiercely just the way he is. I once read somewhere that we are sent here to learn, while those with Down syndrome are sent here to teach. I’m not usually one for the hokey message of fate and spiritual intentions; that type of euphemism tends to rub me the wrong way. But I can’t deny the person I’ve become since having Quinn. His existence is my greatest accomplishment. I’ve learned more from him in less than two years than I’ve learned from anyone in my entire life. He has taught me patience and perspective and helped me realize that the life I wasn’t planning for (a life that many actually take steps to avoid) is one I would choose to live all over again.
How can you not love this face?

Thursday, May 26, 2016

Happy Birthday, Lucy Louise!

One year ago today, my daughter came screaming into this world, ready to make her mark. As we navigated the flood waters of Houston, breathing through contractions and dodging cars going the wrong direction on I-10 in the pitch black 5am darkness because the other side of the freeway was underwater, I should have known Lucy was the kind of girl who would blaze her own path. She was ready to make her debut that morning, and no rising waters were going to get in her way. And as the year has progressed, her personality has blossomed before our eyes, dazzling us with her dimpled smile, demanding attitude, and ceaseless curiosity, all of which I saw coming that morning I went into labor. I knew her before she arrived, and yet now that she's here, she keeps surprising me.

One year ago today, I gave birth to my last baby. As a result, I've done my very best to cherish every snuggle, every milky warm breath on my chest, and every milestone, knowing it would be the last time I'd experience this list of firsts from one of my own. But a part of me is anxious and impatient to watch her grow. I adore clumsy toddling on chunky legs, and Lucy is getting closer to walking each day. I love when those first few words arrive, and we've had a slew of them over the past month or so. Lucy is a clever little thing, learning things at a rate I didn't realize was possible for a child her age. She is thoughtful and observant. She soaks it all in and turns it over in her tiny mind, figuring out what it all means. She loves to play with shoes and doors and blocks. She loves to put things in her mouth. She loves to babble and imitate and bang toys together. Most importantly, she loves to laugh these huge belly laughs that fill the whole house with such happiness that I fear the windows might break from trying to hold it all in. And while there will come a day when I will mourn the loss of baby toes and fluttering eyelashes, I acknowledge that time stops for no one, not even a mother desperate to cling to the final stages of babyhood.

We celebrated this little lady last Saturday at Gamma and PopPop's house. My mom outdid herself making the event a special one and all my favorite people here in Houston were able to join us. Even as a storm rolled during the "Birthday Song" (which is fitting, given the day she came into this world), I was still snapping pictures while her brothers swiped frosting from her pink smash cake. It was a special moment that I'll cherish forever, made even more special by the ones who helped us celebrate.

Happy birthday to my sweet lil' Lu. We are so happy you joined our family and made it complete. Your brothers adore you and your parents are in awe of you. I can't wait to see the strong, intelligent, and selfless woman you'll become someday, but only after we get a few more years of those chunky baby thighs.