December 14, 2012

Where's Alex?

I know this is a rhetorical question, right now Alex is at the Denver airport. Her flight from Albany and Training Camp arrived 20 minutes ago and John is waiting for her in baggage claim. They should be back home in 4 hours.

Although rhetorical my question is not facetious.

Where is the little baby I carried for 35 1/2 weeks?

The baby who spent a week in the NICU after birth?

The baby who challenged our expectations and then delivered?

Her father's hiking buddy?

And the little girl who won her grandfather's heart at birth and was her closest ally until his death in 2001?

And although the question is rhetorical, I am just not ready for the truth. From the time Alex was a baby until she graduated from high school I knew everything about Alex. In her early school years I had constant contact with her teachers, and although this decreased over the years I still would speak weekly with her case managers. When she participated in school plays or sports I was kept in the loop and even when she went to the Prom I got reports back from other parents.

This past week I heard nothing from, or about Alex (two very brief check-ins and a missed call). She did not respond to my texts or my FB note. I was not ready for this, and I missed my baby more than I expected. It hit me hard when I realized that this baby does not really need me anymore.

It's ironic, we spent so many years and so much energy advocating for Alex's future and I am not ready to give it up yet. Alex is so capable and responsible but I still have trouble seeing past the down syndrome. Down syndrome has been such a part of me and who we are as a family that I cherish it. I love down syndrome, I love who we are and I love my daughter beyond words. And I love that Alex will still need our guidance as she lives her own future.


  1. My husband and I were talking recently - as we come on our daughter's 7th birthday we were saying it is amazing, 7 years ago we were so worried about the fact she might always live with us and never be independant. Now are biggest fear is that she will be independant and someday want to leave us. I completely get how you must be feeling.

    1. I am SO glad you understand! I am really struggling with this, Alex brings us joy and lots of humor almost every day. We will miss that when she leaves.

  2. I like the pictures you posted today. I could definitely see a resemblance between you and Alex. That may be a "duh" statement, but for me it's hard to see that correlation between Ciena and her dad. If she looks like anyone I think she looks like her mom. But even that is hard for me to see. It's kind of like how Jon will pick things out in Ciena's personality and be able to tell me where she gets it from. I, on the other hand, have a hard time seeing that. What I'm trying to say is that I do see a family resemblance between the two of you. And that makes me happy. Perhaps as Ciena grows older, her family resemblance to her dad, and to the rest of us, will be easier for me to see as well. :)

  3. Hi Jess, I bet you will start to see the family resemblance soon. It just takes a little while, but it will happen. Thanks for your note, I do think Alex and I look alike, and we look like my Mom!

  4. I get it. The involvement and time and effort we put into raising our kids with DS. Then they graduate from high school, start something new that doesn't involve us and the stream of endless info stops! When they turn 18 the privacy issues from Hippa kick in and that information stops too unless we push back. I know it's a good thing but withdrawal from the involvement sucks.

    1. Wow - you said this so much better than I did. It is a funny phenomena with our kids with special needs.


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