I Love You Just The Way You Are

6 years ago

Yep. I do. And it was recently suggested that to do so is a form of "denialism". Really? This, because I choose to see my child's glass as half full. Truth be told, I see it as overflowing in many ways. But to see my child's many wonderful qualities should hardly be taken as my denying or not accepting his many limitations and challenges.

This particular "gentleman" suggested, no, stated, that children like mine are not only different but "worse" because of their genetic "disease" and for parents like me to not acknowledge that is "denialism".

Now, I know better than to engage with such ignorance and cruelty. I do. And I also know that it is futile to argue with nonsense. But I also saw respectable, kind and like-minded parents being attacked and then when I was personally addressed, well, I had to respond. And, as expected, I got upset because frankly, how dare someone who knows nothing about me dare to presume to know how I feel deep in my heart and soul? This person knows nothing of how I really felt when my son was born. He seemed to believe that I jumped up and down with joy over his diagnosis and put blinders on. Does he -- does anyone -- want to know what I really went through?

The day my Jakey was born, I suspected the second he left my body. I hadn't even seen him yet. I asked the doctor if he had Down syndrome before he had even been able to clean out his nose. The doctor said, "No, I don't think so." The nurses uttered, "Why would she ask that?" But I knew. And no, I wasn't thrilled.

Before long, after taking him across the room to clean him up and assess him, the NICU nurses (who had been in the room because I had been hypertensive throughout labor and on magnesium) suspected and walked over to the doctor who was washing up and told them their suspicions. My older son, Adam, then 15, apparently overheard them. He stopped taping at that point as he was worried how I would take the news. They handed me my son and as I'd only had him but a few seconds (and by the way, I suspected then, too), they sat down next to me, and I KNEW what they were going to say. And so came the words I will never forget:

"He seems to have some characteristics which are consistent with Down syndrome."

No, "gentleman" who thinks I am in denial. I did not doubt them or my whole world wouldn't have turned black. I didn't hear much after that but I was crying softly and worried that a hot tear might run onto my baby's cheek and burn. He was then taken from me as they suspected he had pulmonary hypertension due to a PDA. And there I was. My older son went with him to the NICU and I was left in a daze. Believe me, Sir, I was in anything but denial. I was scared, shocked -- and in love with my baby.

The next two weeks were hectic and scary as he fought to get well and I read and learned all I could about Down syndrome. I read about all of the horrible things he could face. Heart problems, digestive problems, infertility, shorter life spans, mental retardation, increased risk of autism and leukemia, early onset Alzheimer's, on and on and on. What I did not read or prepare for was the ignorance and cruelty of adults. I was not prepared for the views of those who would consider his life unworthy and would have no qualms about telling me, flat out, that my son should not have been born. I saw no chapters on that in the books I read by his bedside.

I went through my days trying not to let my older son's activities and life come to a screeching halt while paying as much attention as possible to my new son. I was so proud of my older son's immediate acceptance of and love for his little brother that it broke my heart when he finally aired the only disappointment he seemed to have: With tears in his eyes, he said, "I was just hoping that I would have a little bro that I could take to the park and run around with."  I was happy to be able to assure him that he would be able to do that! It would just take a little longer but he would. And his face lit up and that was all he needed to hear. He did not need a brother who would one day do calculus. (And he would have loved him even he could not go to the park and run around as he would have put him on his shoulders and run for him.)

I sat by my baby's crib waiting not so patiently to be able to hold him -- watching them prick and prod him and watching as he barely cried. And I read and re-read Max Lucado's wonderfully appropriate "You Are Special" book to him. (A book I came upon while picking my older son up at his Christian High School at their bookstore.)

I saw them intubate, extubate and threaten to intubate him again. I saw echocardiograms that showed the hole in his PDA mercifully closing -- though not fast enough for me! ;-)

I had to field well-meaning neighbors and friends who didn't know what to say to me or how to say it. I had to make them feel better. The first "congratulations" I heard was the day after my son was born when the president of our local Down Syndrome Association called to offer support. (I hadn't realized that until I got on the phone to hear her say that!) And I discovered new friends, lost old friends, and discovered friends who I thought were far too superficial to stick around were indeed, not. One in particular, I thought, would run for the hills. This woman seemed to only care for appearances -- hers, her kids, and others. Yet when she called the hospital right after Jakey was born and I told her he had Down syndrome, she said, "Yeah, I know, so and so told me. So, is he so cute you can't stand it?!" You never know...

I met with a geneticist who assured me it wasn't my fault and who went on and on with stories about people with Down syndrome who are musicians and get married and so on and so forth. All the while, I knew these were the exceptions. Is that denial, Sir? And the only thing I said after all those pretty graphs and charts of karyotypes? "I just don't want anyone calling him a retard!" (And that is a whole other crusade...)

The first few weeks, I found myself going along OK and then all of a sudden feeling lost. Simply lost. I was at a gas station once, right down the street from the hospital and I felt so out of sorts that I had to call a friend to come get me. Another time, I came back to the hospital after they'd had their time between shifts when they kick parents out for the shift change and could not find parking. I had to feed my baby! Granted, it was tube feeding but *I* wanted to be the one to hold him while it was happening. I sat in my car and cried -- NO MOTHER SHOULD HAVE TO FIND PARKING TO FEED THEIR NEWBORN!

And YOU, a complete stranger, presume to tell me that I am in denial about my son?

Where were you when I was home with my baby and he was just about 3 weeks old as we listened to a lullaby on the Children's Music Choice channel as I paced while holding him and the lyrics made me cry so hard that I had to calm myself down so he wouldn't notice? What were the lyrics? "I can be anything I want to be when I grow up. I can be a doctor, a firefighter, a teacher..." And I thought, no he can't!

Are you with me when we are out and about and people look at him strangely? Are you with me when children ask why he doesn't talk? Or when people ask why he is so little? Or when, since he is non-verbal, and he tries to touch a child to say hello, they recoil and I have to explain what he is doing and why? Do you hear my heart break?  Do you think that I think it is normal for a 10 year old to not understand that fire is hot and running into the street is dangerous?

You aren't there when I wake up in a cold sweat worrying that he is vulnerable to abuse of any sort because he is sweet and trusting and doesn't know better. You aren't there when I am up all night sometimes worrying about what will happen to him when I am no longer around.

All that said, do I think he is the most loving, amazing, funny, talented child on the planet? YES. I actually and sincerely do. I have never met anyone who loves life more than he does. He loves every animal, plant, flower, person he meets. He loves to dance, jump, "sing", tickle and has a wicked sense of humor. And he has great musical rhythm! And a wonderful memory. He has a pure and forgiving soul and he, Mr. Ignorant and Cruel, would be happy to welcome you into his home and heart and ask you to play a puzzle with him, even if you might think he should be playing chess.

Denial? No. ACCEPTANCE. And a CHOICE to see the positive in my child, which is easy to do when there is so much positive to see. And thank goodness I do. The vast majority of the negative things that *could* have happened to my son did not. To dwell on those is like a typical person dwelling on whether tomorrow they might get cancer or ALS or lung disease, or have a car accident or any number of things.

So I choose to *attempt* to forgive those who feel it is their right to judge and hurt people like me and my son. I have a good example -- my son. He wouldn't think twice to forgive them, because what he may lack in "I.Q.", he more than makes up for in heart.

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