I'm Sorry

Almost one year ago…

I’m sorry.

I’m feeling profoundly sorry for myself. And I’m sorry that I feel sorry. I feel ashamed for feeling this way. I want to be more faithful, more spiritual. But all I feel right now is pitifully sad and sorry…and, of course, guilty for feeling this way.

So many say we’ve been blessed with a baby who has Down syndrome because we’re so loving and can “handle” it. I know they’re being sincere and kind, but I want to scream that I can’t handle it. I’m no different from anyone else.

Perhaps God forgot that he has already blessed me with a special needs child, one who I love like crazy but whose present is more challenging and whose future is less sure. Can’t we spread out the love a bit? I mean, haven’t I already received my share?

I feel like a big, thick, black line has been drawn: my life before Down syndrome and my life from this point forward. I’m grieving. Life didn’t feel easy or uncomplicated before…but I was managing. I feel confident that I will now be cheating my other children. I just know I’ll be tired, more overwhelmed, busier. Less of me for all of them. It doesn’t feel fair. It makes me cry harder…and feel guiltier.

I’m given some helpful, good books to read on Down syndrome. None of them are bleak or pessimistic, but they are realistic. There is a whole myriad of possible medical and developmental issues Jesse could have. I’d like to believe that somehow we’ll dodge them all, that these problems will be the things other families go through, not us. The thought of all the doctors and therapists that will surely become part of our life now is beyond overwhelming. Just fitting time into my schedule to call and make these appointments is too much to think about.

Jesse quit nursing soon after we got home from the hospital. By the day after Thanksgiving (what a blur that was…did I even cook a turkey?) I knew he was in serious trouble with dehydration if we didn’t do something right away. Great…now I can add pumping AND bottle feeding to our schedule. How am I fitting eight plus hours of feeding time into our day? There’s no better time for a full blown pity party than at 3:00am in my freezing cold family room, all alone with my pump, trying to find something on our non-cable television besides the infomercial for the Jack LaLlane Power Juicer. My world felt very dark during those early morning hours. (But, wow, what a powerful juicer!)

I think about how Mary, the mother of Jesus, reacted when told by an angel of His coming birth, “I am the Lord’s servant. May it be to me as you have said.” Again, I’m sorry. I’m still struggling. Would Mary have said that if the angel had just told her she was going to give birth to a child with mental retardation, possible serious medical problems, and a shortened life expectancy? Maybe she would have. I guess I’m no Mary. Or…maybe I’d do better if an angel had actually visited me with the news. Or…maybe I’m just making excuses for my weakness and spiritual immaturity. Sorry.

I’m not new to hard places. By this time I’ve been through the loss of two pregnancies, one where I had to deliver the tiny baby girl at the hospital. I’ve cried buckets while panicking over the slow development and autistic tendencies of Carle, and just before Peter was born I buried my mom after her ten year battle with ovarian cancer. I’ve been down the “Why me?” and the “Why God?” road before and found it a very unhealthy place to camp out. I’m trying so hard not to return…but some days I feel like I’m being sucked under, completely out of control.

We attend a variety of churches as we raise support for the mission field. One Sunday finds us at a new church, and the pastor and his wife want to lay hands on and pray for Jesse. They started praying and then telling Jack and me what they believed God was telling them, in their spirit, about him. I don’t remember anything they said. I found myself having to concentrate so I wouldn’t start sobbing uncontrollably. I wanted to scream, “Did God happen to tell you that He loved ME?” I felt desperate to hear it. I knew, by faith, that He did…but I was desperate to FEEL it.

The cold, dark winter of infomercials passed. Life trudged onward…and upward. Jesse has seen the geneticist, the ENT doctor multiple times, had ear tubes placed, two eye exams, several echocardiograms and visits with the cardiologist, repeated sedated hearing tests, a cardiac catheterization, started continuous oxygen therapy, surgery on his larynx, a sleep study, and too many pediatrician visits to count. Somehow we’ve made it through.

And somewhere along the line I have fallen head-over-heels in love with my baby. I can’t imagine living life on the other side of that black line again. And the line itself no longer looks thick and black but resembles a shimmering, flowing rainbow of colors reflecting the light of the sun. It’s beautiful.

My nine year old daughter Betsy recently asked me, “Mom, I know we’re born sinful, but how does Jesse sin? I don’t see how.” I’m not totally sure how to answer her. I mean, I know his sin nature is there…but if you’ve met Jesse, you know it’s hard to see. A woman from the Cincinnati Down Syndrome Association told me about her grandson with Down syndrome, “My daughter says that her other children wake up in the morning wanting and waiting for her to please them. Her son with Down’s wakes up wanting to please her.” I see this in Jesse already. He makes people happy. At first, I thought the nurses were just being polite. But repeatedly when we’re at the hospital, strangers come to our room to meet the “adorable, sweet baby” they heard about. People laugh and smile when they meet him. It’s wonderful.

Jesse’s birthday is coming soon. I can’t believe it. The emotional roller coaster of the last year brings tears to my eyes…but they are mostly tears of joy, and maybe a little from exhaustion. It’s been a lot. And I have no idea what the future holds for him. He’s not yet sitting up or crawling, and as he hits the one year mark these delays become more pronounced. Don’t tell the therapists, but I don’t really care. Of course, I want the best for Jesse, but what I really want is just him. I love him.

Almost a whole year has passed and I’m still sorry. But now I feel sorry for everyone else. I’m sorry that they don’t have Jesse.

Sorry, but this Jesse is mine.