Lily's Mom

February 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.
It all left me reeling.  Of course, if you've been following for awhile, you know the rest of the story.  And you are probably sick of me telling it by now, but I will NEVER stop telling it - telling the world!  The facts are that God healed my daughter while she was still growing inside of me - plain and simple.  That I will NEVER deny.  I can look at the back of her head today and see where she was being overtaken by her hygroma, and I can see where it stopped growing., where she was healed!  She is a miracle, a divine work of God, and she is here for a very important reason, of that I am certain!  I will never be ashamed to shout that from the mountaintops!  NEVER
But... despite Lily’s immediate healing – shrinking her hygroma and hydrops, and healing of her heart (which did have a small hole called a VSD that was healed by her birth) – she still has Turner Syndrome, and I still struggle with what that means for our family.  EVERY.  SINGLE.  DAY. 

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.

At this point in her life I do not know all of what that means for her.  What I do know is that Turner syndrome it is a syndrome, meaning that some girls show a large number of the symptoms and characteristics of it, and some will show very little.  If I were to guess where Lily would fall on the spectrum I would guess high, given she is missing all of her second “X” and she had such a large hygroma prenatally.  But in the end, I don’t know, and I won’t know for quite some time.  So I watch and wait for what is to come, and I try in the meantime to not drive myself crazy thinking of the possibilities.

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.
Last week I received a call from my state early intervention agency.  I was told it was very likely that Lily would qualify for free services due to her “condition.”  And while, I’m so grateful to have these services at our disposal, it’s also these types of calls that often send me back to the anger and resentment stage of accepting my daughter’s diagnosis.  My mind reels into the scenarios of “what ifs”:

What if she doesn’t walk until she’s 2 or 3?
What if she struggles with celiac disease?  I already know her system is sensitive.
What if she can’t hear well… and then can’t speak well?
What if she can no longer go to a “normal” daycare?
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?
While Lily is fine – her smile makes sure everyone she meets knows that – she is also NOT fine.  She is a missing a freaking chromosome!  There is nothing “fine” about that!  Yes, I know, it could be so much worse.  Yes I know about the poem welcoming me to Holland.  But guess what?  Some days… some dark days, I don’t want to be in Holland.  I want to be in Italy, because as nice as the tulips are in Holland, the canals of Venice seem so much more enticing!  I don’t want for her to struggle.  I want her to be bigger, to grow faster, I want to stop hearing the comments about how little she is,.  I want her to have less reflux.  Sometimes I want to go back to last January and get her chromosome back, and it makes me angry, so incredibly angry, because as in control I was of my health... my pregnancy, in the end I was not the one in control.  There was nothing I could do.  Everything I did to control the situation was in vain.
And… at the same time, that missing chromosome... that one split second where some bit of DNA mapped wrong... its what makes Lily, Lily.  Without her missing chromosome she would not be her, and I want her, I love her.  As much as I ache for this to not be her lot in life, I certainly don’t want a replacement either.
It’s a paradoxical, heartbreaking world being Lily’s mom.  Its hard.  Its really, really hard, and some days I feel alone.  I feel misunderstood:  by doctors, by friends, by family, and even by complete strangers.  At the same time, its wonderful to be the mom to a girl not expected to live.  A baby girl that wows me daily with her tenacity.  I could certainly stand to learn a thing or two from her.

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.

So, I don’t want to be here, I didn’t wish this for myself, or for my family, and yet I know that "here" is exactly where I need to be, where I am supposed to be.
I think this piece by Erma Bombeck sums some of my feelings up best:

The Special Mother by Erma Bombeck
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.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
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
Final Note:  I'm tired!  Really tired.  Lily's been sick twice this month, and "L" once.  After blogging for the past 29 days straight, I'm going to be taking a minor break - a week or so - away from blogging to love on my sweet family, and catch up on sleep ... and life.  I'll be back next week!

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  1. It's been a pleasure reading all month. Take care of yourself and that precious Lily!

  2. Great end to the month Sarah! While I cannot relate to your very honest and valid anger and sense of why me on the same level sometimes- probably because I did not go through the ordeal you did of knowing before your princess was born - I can so relate to your sense of being in the place you need to be and are very qualified for! Even though our situations are not perfect or even what we imagined - they are what we have been given the chance to do and I know you will do it EXTREMELY well! You deserve a break! Enojoy your week off!

  3. Great job with your month of blogging! Love this last post especially. It's been amazing to follow your journey. You are an inspiration to so many.

    Happy blog break. You completely deserve it!

  4. This is the first post I have seen of your blog, and I cannot tell you how I finally feel like someone read my mind. I feel like these are all the things I have been thinking and feeling. I could go on and on. We saw our baby girl healed as well, and every day I look at her and I am in awe of God's grace. On the flipside, I look at her and mourn the fact that I will have to tell her that she may not be able to have babies .. I think about how I will take the hurt away when kids pick on her.. It is a beautiful, and very difficult journey. My little Kenzie Grace is 4 months old and I only wish I had found this sooner, because I keep feeling guilty for wishing she didn't have it, because I should just be grateful she is here and ok! Finally I feel like someone understands ! :) Now I am off to read the other 28 days!


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