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.

Because He is Loved

"Kids with Down's are so loving," has been a constant refrain from friends and family as they address Bear's diagnosis. Funny, because 6 weeks ago, I would have said the same thing. Now, however, I realize that too often we take for granted that love is not something that is just assumed or granted simply because of a condition. Down Syndrome does not guarantee lovingness. Bear is no more likely to be loving than any other baby. He will be loving because he is first loved. (This sounds oddly familiar.) How would Bear possibly know what it is to be loving if we first didn't love him? He wouldn't. What we do know about children with DS is that they are more accepting of people and situations because they are not hindered by or burdened with the trivial and petty things that bog us down or keep us from reaching out to others. All it takes for a child with DS is to know that someone or something is good and they embrace that with joy.

The other refrain we keep getting is, "God only gives his 'special' gifts to 'special' people." Now, I've been raised in a Christian home, have gone to church all my life, and still recognize this as Christianese. This makes it sound as though God sits in Heaven and has a quota of babies with Down Syndrome that he must give away each year, so he seeks out only the most deserving couples to give them to (must give credit to Dan for these words). If God only gives his special gifts to special people, then why at Walmart the other day did I see a girl with DS who was obviously unkempt and probably had not been afforded all of the services possible for her? Would society say that her mother was a special person to receive such a special gift? I think not. If my first instinct was to judge that mother, I can only imagine what someone who has not been affected by DS would think.

Isn't it possible that sometimes God just lets life happen?? Dan and I are no more special than my sister and her husband who are expecting and will probably have a "normal" little boy. Why would we assume that we're set apart because God's given us Bear? Isn't it possible that we simply have to arise to whatever life gives us and be faithful in those things? I think God receives more glory in that response than if we say that God's given a special gift to a special couple. That steals the glory from God and places it on Dan and me.

Husbands and Wives

Marriage takes work. There are so many marriages that crumble over such trivial things (money, sex, lack of communication). I've prided myself on how strong my marriage is to Dan...how fortunate I am to be in love with and married to my best friend. Poor Dan...I couldn't ask for a better man in the world. He is so strong, so patient, so understanding with me. I pretty much had a melt down last night, just when I thought I was on the upswing and everything was better. I just feel so alone, no matter how much encouragement and kind words people offer. Thank goodness for a loving man to go through this with me, who can kiss it and make it all better.

Taboo

I love the game of Taboo...you know, the game where you're given a word that you have to describe to your teammates without using the list of words on the card or you get beeped by an opponent. My family has laughed our way through many rounds of this wonderfully frustrating game.

However, I've found that something else is now taboo in my life. The words Down syndrome can't seem to be uttered by anyone. It's like people are afraid that I'll break down if they say the words while we're talking. I just want everyone to know it's ok to ask. Dan and I bring it up, but people continue to shy away from it. I'm not sure how to make it more comfortable for others. I mean, this is everyday life for us now, so it has to be normal, even if it's not "normal" for others.