Archives for category: moments

Diego, for those who don’t know, is Dora the Explorer’s cousin.  He has his own show which is on Lizzie’s favorite channel, Nick Jr.  Usually when I set up Lizzie’s feedings at home, I put her in her wheelchair and turn on either Nick Jr., or a Disney video for her to watch.  Yesterday, when I went to unhook her feeding, I went in her room and Diego and his sister were singing “Clap, clap, clap,” repeatedly.  Much to my shock, my daughter was clapping along!  I have never seen Lizzie mirror or follow directions from anything by choice, let alone a TV show that is not actively trying to get her to interact.  I asked her, “Lizzie, were you clapping?”  She smiled at me, and started clapping.  Really clapping!  Not just the maybe hit or miss occasional clap, but active clapping.  I almost cried.  I think that this may be related to our weaning the phenobarbital, and may be a new skill developing.  I started to think about how, if she can mirror actions, maybe speech may start to develop, too.  I am so excited to see what may lay ahead.


Today we went for Lizzie’s first professional haircut.  For Lizzie, haircuts have always been a matter of necessity, starting with her very first haircut when she was 5 days old.  Our neurosurgeon handed me a small Ziploc baggie full of fine, wispy curls and simply stated “Baby’s first haircut.”  I still have that baggie in her baby box.  Since then, I have always trimmed Lizzie’s hair whenever it would get too bushy and she would fall asleep in her wheelchair.  Of course, with the weaning of the phenobarbital, she doesn’t sleep anywhere near as deep as she used to.  I once was able to cut Lizzie’s hair, trim her fingernails, her toe nails and change out her g-tube button all in one session without her even moving.  Now you can’t even snip one curl without her hand shooting up to her head which then starts moving.  And she barely ever falls asleep in her chair.  It became apparent that we would need a stylist who could work with Lizzie.  On a lark, I put “haircuts” and “disabilities” into Google.  An article about a place called “Pigtails and Crewcuts” popped up.  They stated in the article that they were happy to see and work with special needs kids, but the location in the article was kind of a drive for us.  Then I found out they had another location even closer to us.  I immediately emailed them to ask if there location also worked with special needs kids.  The manager called me to set an appointment.  That brings us to today.  Miss Wendy was awesome!  We will definitely be giving “Pigtails and Crewcuts” all of Lizzie’s hair business in the future.  Looking forward to our next trip.  The rest is better told in pictures.  Enjoy!


And so it begins.

Enjoying being pampered.

Break time!

Miss Wendy was awesome at working with moving heads and busy hands.

There were many toys for busy hands.

“W” is for Miss Wendy who cuts my hair.

Lizzie was a little more interested in tasting the princess’s dresses than putting them on the princess.

A little off the top.

Miss Wendy even managed to trim around those sensitive ears!

Loving it!

Loving the blow dryer.

And its cord!

Lots of giggles!

Loving that cord a little too much. Miss Wendy was fast with the power off switch.

Lots of brushes to check out.

Nicely feathered.

All done.

A clean up towel is Lizzie’s idea of high fashion! Silly girl.

Mommy cleaning up all the loose, dry hair pieces.

Today is Lizzie’s birthday and she is now eight-years-old.  I made a list of Lizzie’s progress.

Miss Lizzie – Age 8

In addition to everything on her “can” list last year,

Lizzie can:

Cruise her railing on her bed.

Turn her feet the right way while standing in her crib.

Open and empty a drawer (much to Mommy’s chagrin).

Operate a light switch when prompted.

Move her chair along if she has a wall or dresser to push/pull off of.

Stand and empty toys and books from bins.

Lizzie can not:

Walk independently

Talk (except for the occasional Mamama and All Done)

Use the bathroom

This year Lizzie started:

I’m walking here!

Walking with a gait trainer at home.

Riding a tricycle at home, that we push for her.

Sitting up better, for longer, and sometimes sits to play rather than laying all the time.

Getting better at handling foods and liquids by mouth (More swallowing, less coming back out, still not more than a couple of times before boring/tiring).

This year Lizzie had trouble with:

A repetitive bubble on her g-tube

This year Lizzie received:

NO new diagnoses and no seizures for 7 months today.  YAY!

1 new seizure medicine :  Topamax, which brought the total to four with Phenobarbital, Keppra and Trileptal.  Then we said goodbye to Trileptal (three) and now are weaning Phenobarbital.  Hopefully she’ll only be on two next year.

Check out my cool new ride!

A gait trainer and a tricycle.

In the history of Lizzie’s life, she’s never been one for physical interaction.  If it’s textural or gooey, she’s all over it, but if it involves being held, or touched for longer than 10 seconds, she wants no part of it.  I always attributed it to all the time in the hospital, and all the poking and prodding of tests.  I also attribute part of it to the nurse in the NICU who told me that holding my daughter was not something I should be doing, because her neck was not strong enough for her head.  And I shouldn’t touch her head.  I had been lightly stroking her forehead with one finger.  I realize now she was looking out for herself.  Hard to settle down an excitable baby when Mom leaves for the day.  UGH!  I never should have listened.  I remember being afraid to hold my own daughter.  I also remember that she liked being turned upside down as a toddler, but someone told me we shouldn’t do that either because it would hurt her.  If she liked it, how was it hurting her?  It wasn’t like we were hanging her upside down by her feet, we were just dipping her upside down and back.  She would giggle, she loved it.

Hugs for Lizzie are usually either given leaning over her crib rail while she is sitting, or hugging her in her wheelchair.  It’s always us hugging her. If you stay too long, she pushes you away.  If you hold her on your lap, she is constant movement, and the whole experience is maybe a half hour before she’s done with you.

Today, however, something amazing happened.  I was changing Lizzie’s diaper at bed time, and I had her bed railing half down.  I was standing leaning over the bed talking to her, when she got up on her knees, and scooted over to the railing.  Then she put her arms on mine, and started to pull herself up to stand.  I was shocked.  She’d never done this before while holding on to me.   When she got herself up, she leaned into me, and then just stood there.  After a few seconds, I realized what was happening.  Lizzie was giving me a hug!  I scooted closer to her, and hugged her back gently, and said, “Thank you for such a wonderful hug, Lizzie!”  And then she was done.  She lowered her butt back to the mattress, holding on to me the whole time.  I realized I had tears in my eyes.  What a beautiful gesture from my daughter.  I don’t need anything else for Valentine’s day this year, nothing could top that.


Lizzie has a great seat for her brother’s Cubmobile race.

When asked about Lizzie’s speech capabilities, I’ve always said that she is non-verbal but not non-vocal.  Lizzie sings very nicely.  Not words, mind you, but a sing-song melody that is all hers.  She’s also very good at yelling (and screaming) when appropriate.  She loves to test out big open spaces such as school gyms during assemblies, the library, and church.  Our priest actually joked that if she knew the words, he’d sign her up for the choir.  So, I know my daughter’s voice, but her words are not something we’re very familiar with.

I remember once when we were in the neurologists office, my daughter was making sounds that she had been making at home for a while.  Something that sounded like, “Aw Duh.”  The doctor looked at her, smiled, and said, “Yes, Lizzie, we’re all done.”  It was like a lightbulb went on over my head.  She was saying, “All Done.”  A phrase they’d been using at school when they complete an activity for years.  Ironically, my daughter used this phrase throughout both her EEG and her sleep study that year as if to say, “I’m all done, Mom.  Can we go home now?”  Of course she was completely miserable and crying when she said it, so it tore at my heart.  I just wanted to get those leads off her head and get her out of there, but of course I couldn’t.  And how do you explain to someone with almost no words that yes I understand you, but no I can’t give you what you want?

My daughter doesn’t use words very often, but when she does, they usually pack a wallop for me.  Once when we were shopping at Wal-Mart, my son was pushing Lizzie.  We have an arrangement, if I take both kids to the store (which is rare, because I usually shop when they are both at school) that my son either pushes the cart, or his sister.  My son has ADHD and was in one of his wild moods that day.  He started rushing around with her, taking corners too fast.  All of a sudden I heard.  “MOM.  MOM,” very distinctly, and very stressed.  I looked down to see Lizzie looking at me imploringly.  I took over pushing her, and she stopped.  Relaxed and happy again that Mommy was at the helm.  Of course my son threw a fit, so I put his butt in the cart and pushed her pulling him behind me, and made a mental note, “Only shop during school time.”

These things happen few and far between.  And words she uses today, I may not hear again for 6 months if ever.  I wish she would talk to me every day, but she can’t.  But when she needs those words, they seem to find her.

After her last seizure, we were in the ER.  I realized about 1:30 or so that Lizzie hadn’t eaten that day.  She had the seizure only moments after I started her morning feeding, and I had to stop it for safety reasons.  We went to the hospital via ambulance and then spent time in the ER.  They’d given meds and fluids, but no food.  G-tubes make it hard to get food in an ER, because they have to order a feeding pump and the right formula, and they must have an extension tube that fits your button.  We carry an extra extension now (actually a few) because of this.  Lizzie had only woken up a little while before, and I was discussing with the nurse the possibility of getting food started.  Lizzie grabbed her tube button and looked up at me, “Ba,” she said, “Ba.”  We’ve always called her feeding a “Baba” because it used to come in a bottle when she was a baby and then we would tube feed the rest.  Baba just stuck.  This was not something I’ve seen from her before, or heard.

Which brings us to today.  I was getting Lizzie out of her stander.  I had laid it down, and was getting ready to take her out.   I started goofing around and kissing her forehead and moving back and forth to see if she would track me.  She looked right at me and said, “Aw duh,” not once but about four times.  It was as if she was saying.  “I’m all done now, Mom.  Get me out of here.”  She stopped when I answered her.  “Yes, Lizzie, you’re all done now.  Let’s get you out of there.”  She smiled.

I hope that someday my daughter is going to shock everyone when she suddenly starts talking like there is no tomorrow.  For right now, I’ll take whatever words she’s able to give me.

Tonight my ten-year-old son was out riding his bike when it was time to come in for dinner.  Walking out to our street, I looked both ways for him.  I found him just where our road bends out of sight.  There he was, with a little girl and her mom, and I watched him catching fireflies.  When he finally caught one, he ran over excitedly to hand it off to the little girl.  She waited for him to give it to her expectantly, and her face lit up as she took it from him.

It’s these rare moments that I start to think about what might have been.  Had Lizzie not been born with her difficulties, would this exchange have happened in my own yard, instead of one a few houses down?  Would it have been his own little sister he caught fireflies for, instead of a neighbor’s child?

Most days it doesn’t even occur to me that we live in a very different situation from other families.  I don’t think about how other families don’t deal with daily tube feedings, diaper changes for a six-year-old, and frequent ER visits via ambulance.  I don’t think about how my children don’t play together much, because his beloved Lego’s are too much of a choking hazard for her, and her toys are too babyish for him.  Most days I don’t think about how we are unique.  I just enjoy who we are.

Then there are other days, like when I go for IEP meetings, and see the teacher my son had for kindergarten or first grade and think of all the things he did at that age that his sister can not do.  Or when I see the Holiday Show at Michael’s school, and see the kids that would have been my daughter’s classmates had she not been dealt the hand she was.  Or when I see my son interacting with other kids, like this firefly girl.  Then my heart just aches for what might have been.  When these moments hit, they are almost always followed by a sudden feeling of guilt.  A feeling that wishing that my daughter wasn’t disabled is somehow a betrayal to who she is, even though I’m only wishing that she had an easier and by some measures better life.   This must be something most parents think of at sometime:  wishing their child was a better artist, better at school, better at sports.  Wishing those things for your typical kids though, doesn’t have that same guilty feeling as wishing that your special needs child was healthy, because somehow it feels like you are saying there is something wrong or bad about your child, which is not what you mean at all.

We do get a view of what might have been occasionally.  For instance, last Sunday, after the Abilities Expo, my husband decided we should eat pizza out.  We usually don’t dine-in at restaurants much, because Lizzie is not restaurant friendly.  She doesn’t understand etiquette (for instance, you must keep your shoes on at restaurants and not put your feet on the table), and she can’t really eat food, as she’s tube fed.  She’s quickly bored and looking for something to do (pulling on table cloths, grabbing dishes and glasses, yelling and pushing over tables), making it difficult for us or anyone else to enjoy the meal.  So, it’s not something we do often.

As we sat at the table, we got to experience the sibling arguing that we don’t often see at home.  Usually Michael goes off on his own to play or plays with his friends, and because Lizzie can’t follow, she doesn’t get the chance to bug him like a regular little sister might.  But here, he was trapped in a corner, with his little sister next to him.  This was not fun for Michael.  “Mom, she’s taking my crayons.”  “Lizzie, stop grabbing me.”  “Lizzie, stop grabbing my paper.”  I realized that we would hear much more of this, if Lizzie didn’t have her disabilities.  To his complaints, Lizzie yelled, and slapped the table, and smiled.  She was having a blast.  Michael not so much.  But I figured, he was well overdue for his sister bugging him, so I sat back and watched and thought about how it could have been.

Of course we don’t often get those firefly moments, but we do have moments of our own.  Michael walked up to his sister and gave her a kiss and a hug for no reason one day last week.  These moments melt my heart.  And I do love our moments, but that doesn’t mean that when I see the second-graders in the Holiday Show at Michael’s school this year, I won’t wonder once again how it might have been.