Lily's MomFebruary 29, 2012
I We made it! It’s the last day of February and Turner
Syndrome Awareness month is officially coming to a close. I first want to thank everyone for reading! Putting together 29 days of posts has been a
challenge, but one that I enjoyed immensely.
I’m certainly glad that February only has 29 days though! I am so grateful to all of those that helped by guest posting. My hope is that you learned something new,
and that you will be able to use that knowledge, either now or in the future,
to help someone else.
In conclusion of this special month, I wanted to talk a moment about what it has been like for me to be Lily’s mother. It is the new identity that I've taken on over this past year, and it has shaped me and changed my life in countless ways... both good and bad.
This time last year a tiny bean was growing in my belly.
|Tiny Bean- 6 weeks|
I had amazing hopes for my pregnancy, amazing hopes for her. I was as healthy as I had ever been, and I was convinced that my pregnancy would go swimmingly. I was anticipating with joy a normal birth weight baby – after my preemie son was born 3 lbs 4 oz, 4 years earlier. Innocent friends and family joked that I’d probably have a 10 punder this time. I actually wanted that! And yes, I was having a repeat C-section so that was easier for me to say.
Deep down though I had some fear. I couldn’t quite put my finger on it, but there was always something in the back of my mind I was unsettled about. Call it intuiton, or maybe call it PTSD from my previous pregnancy, but whatever you call it, that fear was rationalized at our 19 week ultrasound. I remember first hearing the term cystic hygroma that day. For days afterwards I couldn’t even remember how to pronounce that stupid word, let alone begin to understand it. I also first heard Turner Syndrome that day, was offered an amnio, and was told I could make a decision to terminate my pregnancy if I wanted to.
I sometimes feel that people think because we’ve escaped the immediate concerns about Lily prenatally and at birth, that the journey is over for us. But that is not true. Our journey is only on the cusp of beginning. Lily still has Turner Syndrome. She had it at birth, and last I checked (although you couldn't tell just by looking at her) when she woke up this morning, she still had it.
There is so much that is unknown. I remember the day that we found out about her diagnosis. After a pregnancy of unknowns... finally, an answer! What a blessing that was! And now, even though we got our "answer", we still have so few answers.
What if she struggles in school?
What if other kids make fun of her?
What if she develops a heart condition?
What if I have to watch her endure multiple surgeries?
Despite being dragged to this place (sometimes kicking and screaming) I am convinced this is my calling. I am certain of it, and I am validated nearly weekly now. Last week it was the early invention nurse commenting on what a strong advocate I seem to be for Lily – even though we had only been talking for 5 minutes. It was the doctor that listened to me about the medication interfering with her reflux, and spending an extra minute with me to let me educate her on some Turner Syndrome aspects.
Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."
Now, I’m not saying I’m a patron saint – far be it! But I do think that God made me with laughter, barely any patience, a strong sense of independence, and yes, some (ok, maybe a lot) of selfishness. I’ve always been what I’ll lovingly refer to as “feisty”. I now know that many of my experiences in the past 34 years of life have been grooming me for this moment, and while I never chose this for myself, I accept it, because even in the hardest of times, it is still an honor and a blessing that I’ve been chosen to be Lily’s mom!
So Lily... all of this past month is for you. I love you... Love, your Mom
|Princess Lily - 5 months|