Yo soy La Lay

adventures in family, faith, and Down syndrome

Miss Cranky Pants

Three times I’ve written this and three times, it has been deleted.

Ladies and gentlemen, I am 100% stuck in a rut.  Miss Cranky Pants?  Oh yeah, that’s me.

My hope is that just throwing this out there will somehow help me to snap out of it. I have been told many times that my feelings about developmental delays will ebb and flow… It’s so true. I don’t know if this crabby phase is an “ebb” or a “flow”, but it’s where I am right now.

This all began (kind of) with the planning of Tessa’s first birthday party, which is in a month. I’m thinking a lot about the milestones that are commonly associated with the first year – walking, using a cup, eating table food, first words – and thinking about how hard she is working and how far away these milestones seem to be. She will do them all in her own time. Today, I just wish that one thing would be easy for her. Just one.

I think a lot of this was magnified by the Thanksgiving holiday and time to catch up with family and friends. I found myself talking a lot about what we are working on in therapy and how she is doing. I have an idea in my brain that people have expectations for what an almost-one-year-old should be like. And somehow, I have convinced myself that if people see her and she isn’t that way, the way they are expecting, then they will feel bad for us. Pity is the absolute last thing I want.

She’s so little! Someday, she’ll have her own personality and talents. They are already locked in her little brain somewhere. Because of Down syndrome, the puzzle is a little trickier to figure out, but her strengths will emerge. Rather than frustration, what I really want to feel is cheers for how hard she has worked and how far she has come. She’s army-crawling. She’s holding her own bottle. She’s mostly sitting. She’s babbling like crazy. It’s progress.

In all of this, I would change nothing. Just as I would not change any of the aspects of myself that I struggle with, neither would I in her. All of this serves a purpose. All of the ebbs and flows and smiles and tears and everything else that comes along with an extra chromosome is part of her role in this crazy world. She and all of us are better for it.

There. I’ve said it. I’m in a funk. But I’m feeling better already.

A little cuteness, perhaps? Just one picture today. It’s Tessa, in a restaurant high chair for the first time, while out on a special date with Mommy and Daddy all by herself. Just try not to smile when you see this face…

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Pity

Tessa had her first eye doctor appointment yesterday!  There are a variety of eye issues that kids with DS are more likely to have.  Most commonly, we’re talking about nearsightedness, but they also check for glaucoma and cataracts, cross-eyes, and clogged tear ducts.  Clogged ducts are common in all newborns!!  Tessa has one, as did Ellie, but she passed the rest of her exam with flying colors.

As a part of the exam, Tessa had her eyes dilated.  Because of the weak dosage used on little babies, we had a considerable wait before she could be seen.  The eye doctor’s office has a “special” waiting room for their children (though I wonder if they just keep us separate to keep the other patients less cranky!).  Another mother in the room was holding a little boy who looked about 6 months old and she struck up a conversation with me.  This seems to happen to me a lot… I know the life stories of a lot of strangers and Gina was ready to tell me hers, too!!

As the conversation continued, she told me about her little boy, Robby.  Remember that I thought he looked about 6 months?  Well, in actuality, he was 14 months.  Robby had been born without a left kidney, without a left lung, and with severe heart defects, all of which had not been diagnosed prenatally.  When she brought her concerns to the doctors three weeks after his birth, she had been dismissed and it took considerable effort for him to receive any care.

(As a side note, this story was so unbelievable to me that I came home and googled if someone could survive with one lung.  It is possible.  In fact, the Pope only has one lung!)  

 Robby takes all his nutrition through a feeding tube, has had heart surgery and multiple hospital stays.  She told me about how he is now terrified of doctors, how he can’t sleep more than an hour at a time, how she feels like she is neglecting her five other children… my heart ached for this woman!

As the conversation eventually turned, Gina wanted to know why I was sitting in an eye doctor office with a newborn baby.  Not thinking much of it, I just told her that Tessa has Down syndrome and needed to be checked to make sure her eyes were working.

I will never forget the look on this woman’s face.  She looked so sad!!!!!  And I was tongue-tied.  How to respond??  I’ve blogged about this before – that this is not a sad event for us, that we don’t feel hurt or lost… maybe a little confused or overwhelmed at times, but never sad!!  And yet this woman, with the weight of the world on her shoulders, was feeling sad for me.  How does one communicate this joy that we feel to a stranger?  So I just did what any other new parent would do…. I stammered through some kind of weak response and then pretended that I had just received a text message and excused myself from the conversation.

If you’re waiting for me to say something like “just kidding! I was an advocate for Tessa and others with Down Syndrome!” you’ll be disappointed to learn that I literally did pretend to get a message.  And today, I find myself trying to decide how I will approach people with this reaction in my future.  The fact that in some areas of the country, 80-92% of babies prenatally diagnosed with DS are aborted weighs heavily on my heart.  How can I show others what a blessing this will be?? 

As Gina left the office with her son, she whispered “good luck” to me and gave me a look that said “I am so sorry for you.”  She meant no harm by this, I am sure, and her family is certainly in my prayers today.  But “luck” isn’t what my family needs.  Support is a better word, maybe, and the countless messages of love, hope, and encouragement that we have received from family and friends have made it abundantly clear that we are not lacking.  We have a community behind us!!  My hope is that Tessa’s community will be touched in such a way that people learn to see all babies as blessings in the lives of their families.  Just look at this smile!!  How can you not adore it?!

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