Tuesday, December 08, 2015

Time Warp

December 7, 2015

I don't know what it is about early mornings when I'm sleep deprived and exhausted both physically and emotionally that really gets my mind goin'. And by goin', I mean crazy talk. The stage was set for Mommy Meltdown the other morning when 5:00 am rolled around, & Lola was still partying.  I should have known she would crash hard as soon as she came off that milk high. It would have made sense to just ride out the emotional shitcoaster I was on, but NO, I actually went there. I had tried every single position known to man to get her calmed down. She wasn't having ANY of them. Literally I tried to position her on my right side sitting up, my left side sitting up, my right side laying down, my left side laying down, against my knees as I laid down, against the side of the couch facing the TV as I laid down, on her tummy across my tummy, on her back across my tummy, up on either shoulder, stretching her back across the arm of the couch/my legs/the ottoman, upside down (don't judge, I almost tried it!), in her awesome Mamaroo swing, in her Nap Nanny (yes, I know it's been recalled, but my non-mobile child who is being watched 24/7 is safe in there, I PROMISE!), in her bouncy seat, on the couch alone & not touching me, on pillows on the couch next to me... shit, you name it, I tried it, & IT FAILED MISERABLY. I finally told her to cut the horseshit"Lola, you are nine-and-a-half... Almost TEN YEARS OLD. You know better!!!" And that is when it hit me. My BABY is going to be 10 YEARS OLD in April. How is this even possible?

4:51 am, bitchezzzzzz!

TEN, you guys. This wee little girl o' mine who still fits perfectly in my arms and on my lap is damn near a decade old. I am speaking of the last child I gave birth to... My 12 lb. "baby"... My spunky, opinionated, nocturnal, spirited, beautiful, freckled, rubber-chicken-loving daughter. She turns fucking *ten* in a mere 4 months. Double. Damn. Digits. 

This life -- it is like a time warp in so many ways. It feels like she ought to be maybe 3. Like it was just a few years ago that our worlds were forever changed as Lola joined our family. It feels like I blinked and suddenly my child-who-appears-nine-months-old is almost ten. I am almost ashamed to admit how much this terrifies me for reasons even I don't understand. 

I think it signifies that life is changing, time is passing, and we are all growing older. Maybe that is what I struggle with... feeling like our girls are defying odds, worrying that they won't always be able to do so, worrying that with age comes more difficulties, worrying about Cal leaving home soon, worrying about my own issues as I age. I don't know. It just feels scary. Change is hard. And for families who have children with special needs, sometimes we just want things to stay the same... for ALWAYS.

December 3, 2015

I so remember everything about my pregnancy with Lola. I remember how scared we were because doctors weren't sure if she would survive the birth process. How so much was simply unknown. How it felt like uncharted territory for all of us. How our perinatologist moved away when I was 18 weeks pregnant and at that time - right before Christmas of 2005 - he basically cleared my pregnancy as "normal." I remember seeing Lola's fully open hand giving us a "high five" of sorts and wondering if that was a sign from her (and maybe God) that she was going to be OK. After all, Claire's thumbs were always tucked into her fists - surely this meant all was well?! 

I remember doctors wondering if she would be more or less advanced than Claire. We all studied her movement on sonogram so closely, specifically looking for spasticity (as if we could see it) or jerky movements that might indicate cerebral palsy/hypertonia or even seizures. When we saw nothing, that gave us hope. I prayed so hard that all these signs put together might mean that my baby girl, whom I prayed for with everything in me for the past five years, would simply LIVE so we all could have the privilege of knowing her.

I remember forbidding the use of the word "Microcephaly" in our hospital room. And I could never forget how we bargained with the Universe to give us that typical birth experience we so longed for -- that we were denied with Claire & possibly took for granted with Cal. How the ONE THING that mattered most to me was that I could nurse my baby and she could be able to bond with me in that way, as I feared my bond would somehow be less or limited somehow because of all that the medical world viewed as "wrong" with her brain. 

I remember my water breaking at 36.5 weeks and knowing that my whole world was about to be rocked and crying because I was so damn scared that I might come home without a new baby. I just wanted our Lola to LIVE. I wanted to take my tiny, preemie, microcephalic daughter home to begin our lives together, however abnormal that seemed to the rest of the world. These fears and possibilities and what-ifs nearly dismantled me.

The one thing I knew with 100% assurance was that we were going to be given the perfect child for us REGARDLESS. And we so were.

Lola made her grand debut as only a diva could - QUICKLY. So quickly that my OB-GYN didn't even have time to arrive, and Yours Truly didn't have time to have a pain-free birth! Yep - I felt IT ALL, and I am positive that was what was intended for us. To feel EVERYTHING. And OH, how we did. 

April 30, 2006 ~ 2 days old

Mrs Pocket was simply perfect. 5 lb. 10 oz. of pure spitfire! Our bitty badass perfectly complimented our family and made us raise our game to give her exactly what she needed in this life... And ironically, also what *WE* needed. 

March 19, 2007 ~ This picture has always meant SO MUCH to me because it is the only picture I have of Lola breastfeeding -- on the beach, no less!  It was so important to me to try to make this work, and after countless visits with a La Leche League leader/lactation consultant, we did it.  You cannot imagine how happy this made me.  The hours spent pumping 5-6 times daily for 2 years were worth it all.

Nearly TEN years ago, our sassy Lola taught us to slow down and live & love IN THIS MOMENT. To cherish each and every day. To focus on the NOW vs. trying to control our future or how we might possibly deal with what inevitably lays ahead (which I cannot bear to say out loud or even type). 

I thought having Claire taught us a lot -- and OMG, I could devote five whole posts detailing all the ways she SO DID -- but together, all three of our children have shaped us as only they could. We are so damn lucky to have been chosen to parent Cal, Claire & Lola. And no matter what, I will continue to pray for TIME so we can love them longer and make as many memories as we can. Even at 4:51 am.



Unknown said...

I have so fallen in love with you and your beautiful family. Every time I see Lola and Claire, I just smile and thank God that they are in my life because of you. I have 15 grandchildren and 1 great granddaughter but now I have 3 more that I wish I could love, love, love on and give you a break once in awhile. I pray that one day I will be able to meet your family. It is definitely on my bucket list. God bless you all always and forever. Love, Mamaw Penny

lisapooh98 said...

If you do not have this on your tree, you have to get it!

Gwen said...

HUGS to you, Mamaw Penny! SO SWEET of you to write! <3

@lisapooh98 -- It just arrived at my house today! :D It is hysterical. I will post pics soon. LOLOLOL

MamaV said...

I'm a crazy person who you don't know, but I wanted you to know that in spite of your daughters' limitations, I see everything that they CAN do. My daughter was born in eastern Europe with CP, institutionalized at birth, and after 13 years of laying around with no care has many of the diagnoses that your girls have (microcephaly, no language, teeny size, etc etc). Their trajectories have been so different; even though your girls had super scary diagnoses at birth, with love and care they can do so much! I love pics of Claire bearing weight, or Lola holding things in her hands. Both things my daughter WILL NOT DO. I love to see how they have thrived in a loving home with a sweet family, and I just wanted to tell you that I see it and love them!

Jodie said...

the comment from "mamav" above just blew my mind..
"and after 13 years of laying around with no care" WTF??? Ok I really hope I'm taking it the wrong way but rather then raise her poor baby, she was "institutionalized" and sounds more like she was pretty much abandoned and given up on..no shock of the things "she will not do" well maybe if someone had given a fuck about her she would have had things that she could do. If only you were her mom..
Ok, rant done..to the author of the original post, your one amazing mama..I hope from the bottom of my heart that all your dreams for your precious girls come true. It's hard as hell being a parent to "normal" kids but to do what you've done..you are miles above us mere mortals ;) seriously, only you can really know what you've endured and my
Heart goes out to you and your beautiful family. I found this googling microcephely. This mosquito virus that's spreading and causing the condition is scary shit. I came upon your blog and read..and read. My tears streamed as I read and I laughed at your hysterical, honesty and bluntness at the parenting challenges that most boringly and bullshittingly (is that a word?!) sugarcoat. Being a mom is a hard job but you are a total inspiration to me. Prayers and love you all of you..the comment above illustrates just how amazing you are. You could have taken the easy way out and "institutionalized" your babies to "lay around for 13 years" (I seriously wanna punch that woman in the face can you tell??) but you have done/are doing everything in your power to give them a happy, loving and fulfilling life. And it shows!!

Bel S said...

Jodie- 'mamav' adopted her wonderful children.... Check out her blog.

JBH said...

Your daughters are beautiful, and you are wonderful parents. I wish more people would take note and practice the kind of good parenting and unconditional love that you have given your children.

Unknown said...

I just cant stop going through your stories over and over again.u such an inspiration.May the Almighty God continue to bless your family.

Granny MooMoo said...

You guys are the PERFECT family for your beautiful girls. I laughed so hard watching the "revival" of Bok, with the oxygen tank and all. Especially the picture of Scott "crying" while trying to bring Bok back to life. I can just feel the love you have for each other. And Cal is a handsome guy for sure. You guys are all beautiful. I you are blessed to be able to have a great sense of humor while coping. Keep up the good work and the funny posts!

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