Quad Screen, Take 2

Today is the day before Thanksgiving. And I would be a selfish fool to think I have little to be thankful and grateful for. I'm 18 weeks pregnant with baby number two, and though the pregnancy was a bit of a surprise, we always wanted to have kids close in age, so we're ecstatic. However, as a mother of a child with Down syndrome, my risks for having another child with Down syndrome dramatically increase to 1 in 100 vs. the 1 in 800-something during my first pregnancy. So of course, it's been hard to breathe easily during these first 18 weeks as I awaited the Quad screen that reveals if there are increased levels indicating Down syndrome or other chromosomal abnormalities.

We had the Quad screen done last Monday, and I thought that surely the results would have been in by now, so I called my nurse to find out and she was able to reveal that everything on the screen was negative, meaning I'm carrying a baby with 46 chromosomes. I don't know why I was so happy to receive the news. In fact, when I got off the phone with my nurse and called Dan to tell him, I started crying because I felt guilty and ashamed for being so relieved, mainly because I wouldn't change Bear for anything.

So as I said, today is the day before Thanksgiving. I have much to be thankful for: a child with 47 chromosomes who is the most perfect gift, a child on the way with 46 chromosomes who will be a compassionate and courageous individual who fiercely loves and protects his/her big brother, and a husband who is the glue that holds us all together.

My Dearest Baby,

One year ago today, the most wonderful gift came into my life. You. Upon my first glance at you, I immediately felt my heart expand, and never could I have fathomed that it could hold so much love; I should have known then that you would continue to blow all expectations I could hold for myself or for you.

Twelve days after you were born, I received the scariest news I had ever heard: you had Down syndrome. I tried to be strong, to keep it together, but I couldn't hold back the flood of tears. I didn't know what all that meant. All I could think of was how you wouldn't be the child I had hoped for. I was so wrong.

Today, twelve months after that diagnosis, I find that I am the most blessed woman on this earth. There are no words to express the incredible love I feel for you or the joy that you bring to my life. You are the most joyful, pleasant baby I have ever laid eyes on. Your sweet spirit exudes from every part of you. Your eyes say it all--how much you love me, how happy you are, how much you want to bring that happiness to others. I cannot wait for the day that you can express that love and joy in words. Long before you were born or before I knew you had Down syndrome I prayed for a few specific things, one being that you would bring love and joy to this world, and the other being that you and your Daddy would be best friends. You are a constant reminder of God's faithfulness to answer prayers. Everyone who knows you is already so full of that love, and God answers my prayers over every day when new people learn that love.

My sweet, sweet baby love. Thank you for being the baby I never knew I needed, for changing your mama's heart and expectations. For bringing me the greatest love I've ever known. For teaching your Daddy and me to dream bigger dreams. Forgive me for thinking any differently, for being scared, for being ignorant. You are my baby of whom I am proud. You are my love. You are my life.

Love,
Mama

So Much Fun

So nothing deep this time, but I just want to record some things that I love and enjoy about my little boy. I can't begin to describe how much fun it is to be Bear's mom. He's doing the silliest things now--from shaking his head back and forth all the time, to waving hi and bye, to sticking out his tongue and spitting at things...all so fun. I find that I spend most of my day smiling and laughing at him. I thought parenting was supposed to be hard; on the contrary, this is the best job I've ever had.

The other thing I'm reminded of here recently is how grateful I am for his health. I just remember when we first received his diagnosis that I was reading Babies with Down Syndrome which has an entire chapter devoted to health concerns/issues for individuals w/ Down syndrome. I read several pages of the chapter one evening and just broke down sobbing thinking of all the things that could go wrong with my baby. I decided to put that book on the shelf and refer to it on an as needed basis instead. And you know, I've only referred to it for teething. Not for heart defects, G-tubes, hearing loss, sight loss, leukemia, etc. There's just so much to be grateful for. I am a woman richly blessed by the health, love, and joy of my little boy.

At First You Hold Your Breath

Well, on the lighter side of things. I've been trying to teach Bear to eat fingerfoods by himself, meaning that he takes a Cheerio from my fingers and puts it in his mouth. We've pretty much got that down pat. However, be careful what you wish for. Now that this child knows how to "feed himself," he wants to take on the spoon. He now thinks that when the spoonful of baby food comes to his mouth, he's also supposed to grab the food from that and feed himself. Needless to say, mealtime is no longer a tidy occasion.

But I laugh, and laugh, and laugh some more. I was terrified that Bear would have all these feeding issues and continued to hold my breath as we did exercises for oral stimulation and worked to get him eating solids. Now, I'm just so glad for this mess.

All Bets are Off

Though I wouldn't like to admit it, I must confess that after reading books and hearing parents' testimonials, I held fairly low expectations for Bear's achievement of developmental milestones. However, with this child, all bets are off. Here he is at nine months eating baby food, feeding himself pieces of graham crackers and bananas, sitting with little to no assistance, and attempting to army crawl. Believe it or not, that's right on target with developmental milestones. This little booger is out to prove us all wrong. Love my little guy.

If

A good friend and I were walking a couple weeks ago, and she asked the one question no one will ask. She asked "if." Now "if" is quite possibly the most loaded word in the English language. There are so many things it can mean, but the greatest connotation is that it simply represents what may never be. In fact, if you look it up in the dictionary, the definition is full of uncertainty. Maybe that's why "if" is a word and a place I try to avoid.

As we walked, Amber asked if it's hard for me to be around my friends and their children. And the truth is yes. Yes it's hard to be around others' babies and see that they're progressing more quickly than Bear. Yes it's hard not to compare them to Bear. But I can't live in that place. I can't play the "if" game. What if Bear has health issues? What if Bear gets made fun of? What if Bear isn't able to walk or talk? Bear will always be around other kids and he'll never be the same as his peers, but if I begin to play the if game, I'll become a lonely and bitter woman.

Instead, Bear's teaching me to celebrate him in the moment and enjoy the blessing he is. The incredible love and joy that overflow my heart as a result of my little man far outweigh the fear of the "ifs" out there.

Gratitude

I was always an optimist as a kid. I don't know when it happens to us, but it seems that most adults are pessimists, and unfortunately, I fear I've joined those ranks. For some reason, it's so much easier to see the glass half empty; we find the little things to nitpick and complain about when in reality, we have so many big things to give thanks and praise for. I've decided to committ myself to (I hate this--it sounds so cliche) an attitude of gratitude. Instead of getting down about Bear's Down syndrome, I'm going to be grateful for his health and the person he is becoming. Instead of getting upset about the load of laundry my husband didn't get done, I'm going to be grateful for the kind and loving husband and father he is. Instead of complaining about family and in-laws, I'm going to praise God that I have a family who loves my little guy so much and is so supportive.

As I watch Bear barrelroll across the floor, laughing and yelling the whole time, I can't help but have a heart filled with gratitude. It's so easy to become narrow minded when you're handed any kind of diagnosis...we automatically think we're the only ones going through this or have anything to deal with. Then I take Bear to Peyton Manning's Children's Hospital and see a nine-year-old walk in with a baseball cap masking her bald head as she battles leukemia. I meet parents of Joe, a three-year-old with Down syndrome who has a hole in his heart which will need surgery to repair, sleeps w/ a ventilator, has a feeding tube, isn't walking or talking...and the list goes on. My little guy is SO healthy, yet I still find myself wallowing in self pity at times. I am so grateful that he is active, lively, energetic, loving, goofy, and fun.

If only we could each stop during those moments of temporary insanity when we're raging and complaining about something and give thanks...what a different world we would live in.

More "Normal" than "Different"

So when I was given the diagnosis of "Down Syndrome," immediately I began to mourn the "normal" life that Bear would never have and how "different" he would be from everyone else all his life. Four months into the journey, I can't help but almost laugh at what a foolish response that was. I look at this baby boy I love so much and think, "How could I? How could I have ever been sad that you are the way you are?" Bear is the most precious, pleasant, and sweet baby I have ever been around (and I've been around a lot of babies). I am so spoiled by his loving nature and how sweet he is.

Not only that, but four months ago I was prepared for this baby who would be sick all the time, would develop incredibly slowly, and would be unresponsive. My advice to parents receiving this diagnosis: don't read the books. I was prepared for the worst because that's all the books can tell you. They can't tell you how when your child first learns to smile it's with his eyes. They can't tell you how sweet it is when your child snuggles up to you and sleeps peacefully on your chest. They can't tell you how much joy your child brings when he laughs at your silly noises and faces. They can't tell you how proud you'll be when your baby lifts his head during tummy time and learns to roll over.

Different? Sure Bear will be different and is already different from other babies. But in a bad way? Absolutely not. If "normal" means fussy and demanding, I'll take my Bear any day.

Check Your Ego at the Door

I've always been a high achiever, whether it be in academics, athletics, or my profession (I think it comes with being a people pleaser). I expect excellence of myself and of those around me and am disappointed when one or the other fails. So, tell me, how does a high achiever expect excellence of a child with special needs?

One of the greatest lessons I've learned from Bear thus far is that having a child with special needs is the ultimate ego check. All those things that we as parents hope for (I hope my child gets my brains, his daddy's brawn, my sense of humor, etc.) suddenly evaporate. Instead of searching for the ways my child is like me, I find myself searching for signs of development. Will he smile soon? Is his muscle tone developing? Can he hold up his head and look to both sides? And I know I'll continue to look for those things as the years progress. When will he walk? How long will he sign before he can speak? Will he potty train before starting school?

Ultimately, having a child with special needs is the greatest lesson in humility. We all pray for it--God make me a more humble person--but aren't truly prepared for the way he answers that prayer. Who would pray, "God, please give me a child with speical needs so that I may become more like you?" Our children typically serve as such a source of pride, and not to say that I'm not one proud mama because I am, but I've already experienced discrimation against him because of his DS and he's only 2 months old. Talk about being humbled. I can only imagine the ways he will be discrimated against all of his life, but learning how to handle that with grace and dignity and strength instead of indignation and anger will mold me and teach me humility beyond what I could have ever learned on my own.