Sunday, May 8, 2011

Something More:

Some Mothers Get Babies With Something More
Lori Borgman | Monday, May 12, 2002 
 
 My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie. 

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. 

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). 

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. 

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more. 

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. 

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. 

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. 

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. 

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. 

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear. 

I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. 

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. 

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. 

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. 

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. 

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

Thursday, April 7, 2011

Welcome to Holland:

First of all, I just want to say how truly blessed I am! I am blessed with such wonderful friends & family!  It's amazing to have their love & support.

The last 3 years have been quite the ride; Something that you're not quite sure what's going to happen next.  We have had to put our complete trust & faith in Heavenly Father.  I am not going to lie, there have been times where even then I have questioned Him. But, this I do know, He has His hand in all things.


Abi is such a special SPECIAL little girl! She's opened my eyes to a whole new world that I was missing.  With that being said... I read this story & cried.  I completely understand. It has touched my heart.


WELCOME TO HOLLAND
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."


"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."


But there's been a change in the flight plan. They've landed in Holland and there you must stay.


The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.


But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.


But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Monday, March 28, 2011

EEG & MRI

On February 25th, Dave & I took Abi down to Primary Children's Medical Center to visit with her Neurologist, Dr. L.  She's started having an increase in seizures.  We also were seeing a change in her behavior.

Not so sure about the head wrap.
Abi had an EEG done & then a quick visit with Dr. L.  Her results show that she no longer is having Infantile Spasms.  The hypsarrhythmia that normally shows up on her EEG's is no longer there.  Dr. L said this was the best EEG he has seen of Abi's.  He diagnosed her of having Complex Partial Seizures.  He increased her Rx & is hopeful this will control the seizures.  He couldn't tell us why she had those "drop seizure" episodes.

When Abi has her "normal" seizure, there is a pattern.  She usually will come find Dave or I and grab a hold of our leg when she feels it coming on.  Or we can see that one is coming just by the look on her face.  Her seizures start out really light.  We notice her lip will quiver and the left side of her body will stiffen.  This gradually gets harder and more intense.  She hits a climax where her seizure is really intense & exhausting for both her & I.  She folds at the waist while her entire left side stiffens.  Her left eye winks & she lets out heavy sighs.  They come in clusters, so she has about a 10 to 15 second break in between.  Slowly the seizure weakens & tapers off to nothing.  She then is back to herself & goes on with her day. She is usually tired after, & sometimes will fall asleep.  But, Miss Abi is a busy body & does not stop going.  These seizures can last anywhere from 15 minutes to an hour. 

A few days before we saw Dr. L, Abi had had her "normal" seizure.  When she is finished having it, she usually gets back to doing what she was doing before they even start.  This she did.  But, not too long after, I noticed Abi fall head first to the floor.  So I ran over to her & held her to see if she was going into another seizure.  Nothing happened, so I let her get up & start going.  As I was walking back to the kitchen, I noticed Abi following me.  I caught her just in time before her head hit the tile-  Another "drop seizure" happened.  About 15 minutes later, I got her into the tub.  I was just about to take her out when Abi stood up, which she never stands up in the tub & dropped again.  There is no pattern to drop seizures. As I was getting Abi dressed after her bath.  She seemed fine.  She started playing, & then dropped.  So I held her to make sure nothing was coming on.  NOTHING.  So, back to playing & she dropped again.  This was so frustrating for Dave & I . She got to a point that she wouldn't even walk, cause every time she would get up, she'd drop.  We had Jared, my brother come over & help give Abi a blessing.  She slept like a log that night.  The next day, it happened again, but this time she only dropped twice.  So, we were hoping that the Dr. could tell us why she was having the "dropping" episodes, but there is no answer. Since then, there have been no other "drop seizures" occur.  It still concerns me.  Especially when she is at school.  I hate not being there when she has a seizure.  

Feeling a little "drunk"....
A week after Abi had her EEG, she had an MRI done.  We were concerned with Abi throwing these tantrums where she would scream & hit her head for about an hour.  Her MRI came back with no new surprises on them.  It was our first time to actually speak to the Radiologist though.  That was nice.  He explained to us exactly what was going on with Abi's brain.  We already knew what was going on, but it was nice to actually have someone speak in our language & to hear it again & understand completely.


So, an update on Abi as of today.  Her seizures are still daily.  The increase in her Keppra has not helped.  She is more agitated & aggressive.  She hits more & screams more.  She does have her good days though.  She says new words daily.  Sometimes we only hear her say them once or twice, but other times they stick.  I do think we need to try a new medicine or new route as to why she still is having the one seizure sneak in everyday.  She did have a few days where she had 4+ seizures a day.  That could be because of the weather & the barometric pressure and also she had the flu.  But usually she has a seizure a day. 

 I am proud to be her mom! I love her so much & she really has blessed my life! 

Monday, February 14, 2011

3 Years



Three years ago today, I thought was the worst day of my life. Abi was diagnosed with Aicardi Syndrome. I remember feeling like my heart had been ripped right out of my chest & torn in half.  Looking back, we have experienced many ups & downs with Miss Abi.  She has overcame so many obstacles & achieved milestones that we were told she may never do. She is our miracle. We love her so much! We are hopeful for her future & are grateful she is ours!

It's been awhile since I've blogged; So I will update you on Abi's current happenings.

  • In April 2010, Abi started walking. She not only walks, but she runs everywhere.
  • Abi can feed herself. We no longer have to spoon feed her. She is doing really well with holding a spoon or fork. She is a bit messy, but she can feed herself & for this we are grateful.
  • Her vocabulary has expanded GREATLY! Here's the list of words she can say:
Dad (Da-Dee)
Mom (Momma)
Eat (Eeeet)
No
No Way (noway)
Cookie
Drink (gink)
Hello (hewwo), Hi (hieeee), Hey (aye)
Puppy (Pu-pee)
Ball (bawl)
Bubble
Night Night (nigh nigh)
Knock knock (Nah Knock) & knocks on anything that makes a noise
Banana (na-na)
Go
Baby (bay-bee)
See ya (seeya)
Jump (mum)
Uh oh
E-I-E-I-O
Cow (c-oh-w)
Doggy (DahGee)
Elmo (Ehmo)
Boo
Wee
Kitty (Ki-eeee Ki-eeee)
Meow (Neeee ow); We'll say, "Abi, what does a kitty say?" Abi: "Neee ow"
Ho Ho Ho; We'll say, "Abi, what does Santa say?" Abi: "Ho Ho Ho."
Grandma (Ma-Maw)
Grandpa (Paw-Paw)
What's that? (wa-sat)
Yummy (MMmmeee)
Stay (StaYEEEEE)
Bird (bibp)
Apple (Bapple)
Bye Bye (Bu-Bye) & waves
Owie (Wowie)
Hot (hosh)
Soft (sosh)
Abi (Babbi)
Eyes
See
Tree (ree)
Moo (mMMm)

  • She can sign: eat, drink, grandpa, grandma, mom, dad, more, shoes, bird, please, thank you, cracker
  • She LOVES music! She will sing, dance, twirl or sway back and forth when she hears it. She can fill in the blanks to the songs: Popcorn Popping on the Apricot Tree, Old MacDonald, & I Am a Child of God.
  • She is socializing more & enjoys going to preschool.
  • She sleeps in a "big girl" bed & sleeps all through the night.
  • She LOVES to read or be read to. Books keep her entertained & it's so cute to watch her read.
  • She's learning her body parts. Nose, eyes, ears, belly, hands, toes
  • She starting to play pretend. She will carry her cabbage patch around & kiss it.  Abi also plays pretend phone.
  • She gives kisses & hugs.
Abi still has spasms/seizures. Lately, one spasm, every day, is the norm. But sometimes we are lucky & can go every other day or two days in between. She warns us when one is approaching. She'll come stand by me & hug my leg. She has picked up this horrible tantrum where she screams & slaps her head over & over. We're not sure if they are headaches or she feels a seizure come on (sometimes a seizure happens & sometimes it doesn't). I have an appointment with her doctor to discuss it.

She is a joy to be around. She has a contagious smile that melts my heart every time. I'm so grateful for her. Even with her challenge, she has taught us so much! She is very forgiving. She loves her sisters. She's Lyvie's shadow. She follows Lyv all over the house, & Lyv is so kind to let her join in in most anything she is doing. And she is finally starting to like Sophie. They have a cute bond. Sophie can be laying on the floor & Abi will go sit by her. They give each other a look, then the laughing begins from both of them. It's quite cute!



I LOVE my family so much! They are my life, my world! It's hard to imagine what life would be like if they were not here. I'm grateful every day for them. I need to be more thankful & not take them for granted. Cherish the ones you love. Let them know you love them. You never know when it will be your last.

Happy LOVE Day!!!

Friday, March 12, 2010

Earrings!


Today, I took Abi to get her ears pierced. Michelle & Hadley came along, & Chelle got Hadley's ear's pierced too! I had to help hold Abi down. She hated me touching her head. She screamed & cried. I was a sweaty mess afterward. The lady that pierced her ears gave her a sucker and instead of Abi sucking on it, she bit it & ate it fast. She ended up getting 2 more suckers to keep her occupied. So far, she hasn't bothered them. She looks darling!

Monday, February 22, 2010

:Walking:


Photo and video editing at www.OneTrueMedia.com

This is one of my proudest moments of being a Mom! We've been working with Abi to walk for awhile now, but tonight, she was ready to show me what she has been hiding.
Right before I took this video (along with 8 other videos) of her walking, I looked over at the couch, and Abi had let go & had done a total 360 turn around without any help or support. So, that led me to see what she could do walking wise. She definitely has proven herself that she can do things that we were told that she may never do.
I definitely cried tears of joy tonight & Lyvie screamed lots of "Yay Abi!" I couldn't have captured these moments without the help of Lyvie.
I am one happy mommy!
I love my girls!

P.S. Sorry for a naked little girl, we were just getting ready to have a bath.

Monday, August 31, 2009

What a way to end the month!


She has taken off these last couple of months. The milestones she accomplishes, whether they are BIG or SMALL, are HUGE to us! We are amazed at everything she is doing. Every week she is doing something new.

Thursday, August 13, 2009

Happy 2nd Birthday!!!


August 12 (Abi's birthday party) & 13 (Abi's birthday)
Abigayle turned 2 years old!!! Where has the time gone? We had a family birthday party in our backyard the day before her birthday. It was a lot of fun! She got lots of toys and cute outfits. She didn't care for cake or ice cream, which comes as a shock, because usually she LOVES ice cream. But it still was a good time.
Abi, we have loved having you as a part of our family! You never cease to amaze us. We are excited to see what you will be doing now that you are 2!

We Love You FOREVER!!!