The Truth

I know it has been a while since I have blogged and I'm sorry about that.  I'm just going to throw it out there and be completely honest, things have been hard for me lately.  You see, when Jude Man was born there was so much commotion happening.  We had so many doctors and specialists coming to see him in the first 24 hours it was overwhelming.  So many different phrases thrown our way, Down syndrome, trisomy 21, nondisjunction, translocation, mosaicism, blah blah blah.  Soon it felt like all I was hearing was the teacher's voice from Charlie Brown.  "Wah wah wah wah wah".  My head felt like it was going to explode.

I promised myself that when we brought him home I would treat him just like any other newborn, because that is exactly what he is.  I took every pamphlet, book, business card, and brochure and tucked them away.  I locked them up and didn't look at them for awhile.  They have been hidden safely in the bottom desk drawer and I have pretended they do not exist.  I wanted to enjoy the first few weeks with him and not have to worry about anything regarding his Down syndrome.

Now it seems like it has been long enough, and I feel like I can hear those books and pamphlets whispering to me from across the room.  His therapies will be starting soon, and I feel like now is the time that I should start thinking about his Down syndrome.  Not just thinking about it, but acting upon it.  There is no hiding it, my son has it.  Don't get me wrong, in no way would I want to hide his Down syndrome.  There is a joke in my family, "well Jude has Down syndrome", as if that is the answer to everything and it will trump anything you have to say.  In the end Erik and I feel extremely blessed to be his parents.

But to be honest again, I'm scared.  I have no idea what I'm doing.  I know the Lord doesn't expect me to know what I'm doing from the beginning, who would?  I feel like I have the same conversation with Him every night when I hit my knees.  I ask him, "What on earth were you thinking? What makes you think I am capable of handling this? Why me?". And I've said it before, I don't ask him that wondering why I got this child.  I look at my perfect baby boy, and wonder why in the world the Lord would put me as his mother.  I in no way, shape, or form can live up to everything this little boy has to offer and will accomplish in his life.

Mother Theresa once said "I know the Lord won't give me more than I can handle, I just wish he didn't trust me so much".  And I feel exactly that right now.  I don't know what I did in my life to prove myself of this.  I feel so blessed, so honored to raise such an elect spirit.  But I'm terrified.  I'm terrified I'm not going to know enough, and that will affect the way he progresses.  I'm terrified of all the things he is going to have to face when he gets older.

Among all of the many papers and fliers they gave us at the hospital, one really stuck in my mind and I think of it everyday.  It is called "Welcome to Holland", by Emily Perl Kingsley:

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. I would have paraphrased, but I don't think I could have done it justice.  So yes, I am scared.  Yes, I am terrified.  But I am working on getting used to Holland.  Jude has given me every kind of joy that I think I am capable of feeling.  I just hope I can bring him the same kind of joy he brings me.