Yo soy La Lay

adventures in family, faith, and Down syndrome

Quiet

I have thirty minutes of complete and utter solitude right now.

This.  Never.  Happens.

I’m sitting in a rocker, in the sunlight, drinking a beer and listening to the sounds of birds and cars and the tick tick of the cuckoo clock across the room.  It is lovely.

(Of course, never mind that I gave up alcohol for Lent and it is Holy Week, which I am sure makes it worse.  Ellie tells me that God forgives and I believe her.)

Soon the children will be home and I’ll hear the stories of their day at Oma’s house.  We will be filled up with Ellie’s laughter and Tessa’s insistence for cookies (more cookies!!) and John’s chatter about his day.  It will be a different kind of wonderful.

But for now, this.

Quiet.

Calm.

Breathe.

Lovely.

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Oh mama

Oh mama, you’ve been thrown in the deep end now.  You, with that new little baby nestled in your arms, that little button nose popping out from that flat little bridge, you don’t know what just happened to your world.  It feels broken, I know.

You aren’t going to believe a word I tell you now, but that little fact never seems to stop us mommas anyway.  We’re firmly planted in the After.  You will get there.  I swear you will.

You can’t believe this has happened in your life, but it has.

You don’t understand how no one knew before… All those ultrasounds… No one knew.

No one knew.

You don’t feel equipped to do this. You tell yourself that this isn’t the life you wanted and you don’t know how you are going to manage.

You will manage… more than manage!  You already are. And you will look back and believe me someday.

There will be changes, yes.  Detours in the path.  New lingo to learn.  There is time, so much time.  Your life is moving forward, beautifully.  It’s too much now, but I assure you, it is beautiful.

There will be days when you will yearn to be treated like every other mom.  You will shout from the rooftops that you are “more alike than different!!”  You will balk at the notion that you walk a separate journey.  You will be fierce.

There will be days when just looking at families outside of this circle will make you sad.  Maybe even angry.  Your heart will beg for someone, anyone, to acknowledge that this shit is harder than people can possibly understand.  It’s nothing like what any of those ‘normal’ families deal with.  You will be annoyed.

You own these feelings, mama.  They are yours and they are right and you are just perfect.  Your child is perfect.  You have a new journey, and it will be hers and yours together for awhile, but then just hers and you… you will cheer from the sidelines.

You can, mama.  I swear, you can.  You will.  And so will she.

  

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When you can’t hold all the babies you want

In the moments following Tessa’s birth, after the doctors and nurses left and it was just John, my mom, and I, we processed.

I write to you today having just had a “conversation” with another blogger whose daughter also has special needs. I want to explain to her – and you – why my reaction to a life-altering diagnosis was fairly mundane. While there are many, many life reasons that are a part of it, two stick out most prominently.

My mom hadn’t been in the room when Tessa was born and diagnosed. She had just shown up to the hospital to bring John some lunch and to keep me company while we waited for the baby. While I believe that she knew the baby had arrived before she entered, she essentially walked into our strange post-birth vortex on accident. I don’t remember telling her about Tessa or Down syndrome or anything else when she arrived. Maybe she remembers those moments, and maybe someday I’ll get her to share them with all of us, but having her there was one of the catalysts for just moving forward. Soon there would be other family arriving to meet our girl and I sure as hell wasn’t going to have a pity party after I had just given birth.

Besides (and probably more importantly), the road to Tessa was not smooth. When couples set out to have a family, nobody tells them how hard it can be to get the family that they expect. It’s hard for me to not feel envious that for some people, the “having a baby” part is so easy… especially when they take it for granted. For us, it has not been so.

Our first baby was not planned. We were set to head off on a three week road trip and while packing, it dawned on me that I hadn’t had a period in… awhile. I took a test, it was positive, and we freaked out. We told our families. We bought a little AC/DC onesie. We had an ultrasound and saw its little heartbeat. A week later, after another ultrasound, we learned that the baby did not survive. Nine weeks in the womb. My body did not naturally miscarry, so a D&C followed soon after.

Next was Ellie. We know how that turned out. She is wild. (And, currently involved in quite the love triangle at daycare. Good Lord.)

We planned the next baby for a time that was going to be convenient for us (or so we thought). It took a couple months, but soon there was another positive test. In an attempt to calm my nerves, my doctor let me have blood draws to check my hormone levels. They didn’t behave as they should. It was not looking good. I carried that wee one for 10 weeks before we had official confirmation that she would never be born.

Genetic tests following both of my D&Cs found no abnormalities in either child.

I carry those babies around in my heart and think of them most days. Mostly, I imagine that a woman who died before having children might be holding them in Heaven. Maybe that’s crazy, but it helps.

John’s reaction to Down syndrome was more typical. He mourned the baby that we had planned to get but didn’t come. He worried from the moment she was diagnosed. He wondered what kind of life we would all have. I’m certain that my own attitude made him feel badly about his reaction.

If you are struggling with your child’s diagnosis, please know that you are not alone. His reaction wasn’t wrong and neither is yours.

In a moment of sheer panic, John turned to me and asked how I could possibly be fine with “all of this.” My response was simply that when you don’t get to hold all of your babies, the ones that do make it just feel even more miraculous.

That is why I can take this in stride. Tessa’s very existence on this planet is something that not all babies will get to experience. I am so desperately thankful that I have been able to hold and tickle and kiss this little being. That is all. Because we don’t always get to hold all the babies that we want to.

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