I did say this is the good life, didn’t I?

I’ve been debating for almost a week now on whether or not this would be appropriate to blog about, but after talking to a few other moms with special kids, I feel like I need to do it out of necessity. 

Earlier this week, I was the recipient of the comment “I just feel so awful for your situation. I don’t know what I would do if any of my kids were sick like Ava. It just makes me realize how much more fortunate I am.” Ouch.

This person (we’ll call said person Debbie Downer), was someone I knew from my childhood, and have not seen since. Debbie Downer couldn’t have said it at a less appropriate time…it couldn’t have been said to sting any worse. The last two weeks we have been dealing with an extraordinary amount of Aicardi Syndrome related stress. Granted it could have been and has been a lot worse, so there is much to be thankful for, but it’s a bittersweet kind of gratitude.  All week when I’ve been asked how Ava is doing, I say she is doing great…because she is! She isn’t in the hospital and she’s alive and I get to hug her and kiss her and she gets to play with her brothers and watch football with her Popi. I’d say this week, with all of its struggles, has been a success.

Last weekend, Debbie Downer let me know how less fortunate I appear to be.  Sunday, outside stressors of family problems fueled the fire she started in me.  2 AM Monday morning, Ava woke up screaming. She had aspirated, couldn’t breathe, and had a different kind of fire burning in her lungs.  Monday morning she was put on an antibiotic to help control the infection -  $144.00 anitibiotic that our THREE insurances only cover 40 percent of (not exactly how I planned to splurge the stash away for a fun day money). She missed school for a couple of days and returned Wednesday. She’s been coughing all week to break up the solidifying Pediasure, and that hurts her. It hurts me, too. Wednesday I fell down wooden stairs while carrying her to her room and Ava hit the back of her head from my body weight, which sent her into a seizure where as most kids would cry, get a knot, and get over it.  It’s not even lunch yet today and I’ve already been called by the school teacher, nurse and principal about a seizure that she had that lasted ten + minutes. I’ve had to explain that this is normal for when she doesn’t feel good, but that she is used to it. You know what, I am sad this is normal for her, and I’m sad she hurts, and I’m sad for all of it, almost. I still don’t think our family is any less fortunate that anyone else’s…so I’m not sad about that.

I moped around heavy hearted this last week and with my mind filled with a lot of unanswered questions.  I was hurt that people and things I prayed for and received were slowly starting to pull away from me or just break altogether, Ava especially.  I’m not dumb, and I’m not really so blinded by the happiness she brings me that I don’t know I lose her a little bit every day I get her a little longer. It’s just nature.  Debbie Downer made me, for a second, question what I have to be thankful for.  And to be honest, when I think about it, Ava is the only thing in the world that can break my heart and heal it.  We may have many things going on in our family/my life to make someone see us as less fortunate, but she shouldn’t be one of them.

 I get it Debbie Downer, I really do.  I remember life pre-diagnosis and being so turned off by the possibility of having a less than perfect family. I do remember being that shallow, and that strayed away from God, etc..etc..etc.  I’m happy you have restored faith in your fortune after seeing my daughter, but I’m disappointed you don’t have faith in mine.  I have a husband who works three jobs to make sure splurges on antibiotics don’t hurt so badly, yet still is home enough that our children don’t feel his absence, nor me. I have three beautiful children: a special teacher of a daughter and two super intelligent boys. I have a nice home and we always have   plenty of food to eat.  I have friends who are always around and tons of books to read and people who need me and want to need me. I have faith. I have everything.  We all do, guys. I should have never let Debbie Downer take control of my emotions like that, so never mind her now.  There is always going to be someone who appears to be less fortunate than us, and I agree that we should use that as a constant reminder to be thankful for what we do have. But don’t you think that they could look at you and knit pick away until they found your blemishes? Do you think they would call your children a misfortune should they fail a test? Or runaway in a fit as a teenager? Or anything else that’s so normal it’s often written off as part of growing up and not a real problem? It doesn’t leave a good taste in your mouth does it?

I have a special daughter with extremely special needs. So what.  She’s perfect. I said my life is  a good one, and I mean it.

This has gotta be the good life!

It just occurred to me that I have not posted in eight days, and while I’m SURE that’s not catastrophic to most of the readers, it’s a little overwhelming to me.  A lot of stuff happens in our 6 AM-11 PM life. How will I ever catch you up? ;)

(sigh) I’ll do my best.

August 9^th: Ava’s second day of school just so happened to be the first day for Dylan and Connor.  Connor being a K5 “new kid” had a very short day and didn’t have to be there until 9:30 that morning.  This meant he escorted his sister to school, and on the way he made sure to remind her of the most important kindergarten class rules:

1)      Don’t pick your nose.

2)      Don’t throw things or kick people.

3)      Don’t pick up bugs or eat bugs if you don’t know what they are. (Um..Connor, sweetie, don’t eat bugs EVER!)

4)      Always do what your teacher tells you to do even if it makes you mad, and don’t show her your mad face if you do get mad, or then mom will get mad.

And most importantly –

5)      Never, ever pee in your pants.

Kindergarten sounds like serious business, doesn’t it?

August 10^th:  Ava peed in her pants (although when Connor tells it, she took her pants off and pee’d on a tree. This makes me feel like I need to tell his teacher to watch him extra closely on the playground). He also told us that Ava took cookies out of her lunchbox and threw them at everyone. Now, there were never any cookies in Ava’s lunchbox, and she certainly doesn’t know how to open her box and throw them directly at someone, right? Yet when I brought this to Connor’s attention he said “Okay well you can believe me or you can let her get away with it this time and not get upset when she does it again!” Wow….ha! Whoever first said children mimic what their parents say were speaking the truth! =)

Here’s a picture I took of the munchkins after their long day at school. Poor Ava, she was so tired!

But Connor didn’t care ;)

August 11^th:  This day, prayers were answered! Dylan, Connor, and Ava ALL did well at school! Ava didn’t have any accidents (in her pants or on trees), Dylan’s teacher sent home a note that he was trying really hard, and Connor brought home papers with happy stickers on them. You just can’t beat days like this when you’re a mommy.

Also, by this day we had taken two new Wheels 4 Ava donation jars to local businesses who had been offering to help.  It’s mind blowing how this mission has taken off! I know it’s redundant to keep saying, but its pretty amazing to see so many people pulling together to get Ava what she needs. This weekend there will be a mass marketing party in Ellisville (Mary Kay, Scentsy, and Premiere Jewelry) who are all offering to donate a percentage of earnings to the foundation.  This past weekend in Georgia, a fruzzin (“cousin friend” she made it up…its cute…it sticks), had a birthday bash that brought in over $200 for the foundation as well as a Pure Romance party that brought in $400! We have never even met so many people who are donating.  That’s what makes me smile.  There are so many people in this world with compassionate, kind hearts.  I won’t ever forget it from now on.

August 12^th:  When I picked Ava up from school on this day and asked if she behaved nicely she said “No.” Ha!  Dylan seems to think she misses him and Connor during the day, and that is why she is acting out.  She’s not actually acting out, though.  What my boys haven’t learned yet is that “no” is an easy sound for Ava to make…meaning she doesn’t always use it as a word. I don’t want to tell them though, because deep down I know Ava does miss them all day. I know she misses Dylan letting her watch big kid TV with him in his room, and I know she misses Connor help feed her lunch. I have the sweetest, most loving babies!

August 13^th – August 14^th: RECOVERY DAY FOR MOMMA!!! All children were with other family members, leaving me time to sweep and clean floors. MY FLOORS ARE CLEAN! Praise Jesus!

Yesterday, all of the kids did very well again.  Dylan came home and told me he was going to read his homework story to Ava. How sweet! She listened to about five sentences and fell asleep (thankfully big brother didn’t notice until the story was over). By late afternoon, the weather cooled off drastically so I took the boys to the park to play right before bed time.  You would think I was taking them to Disney World! Ava stayed home with Popi because she had already had a bath, and when Connor and Dylan asked why she couldn’t go I told them it was too late for babies to be out.  I should have thought that one over because once we got to the park, we walked into baby madness. Crying. Babies. Everywhere.  Connor and Dylan ran around for a few minutes, and then the littlest boy marched right up to me and said, “Abuh’s going to find out about this. Don’t put it on Facebook that there are babies at the park past baby bed time. Are you hearing me? This is sewious, mom! She will CRY! She will cry worse than that baby!” ….to which he pointed at an actual crying baby.  Thank goodness the little girl’s mother laughed, because I was down right mortified. ;)

Here’s my big boy reading to my little angel.

I’ve been realizing during this last super busy week, that this life is turning out to be a good one.  There is so much positive happening around our family, and we’re learning how to weed out the negative before it hurts us.  There is growing love and support for Ava and her needs.  Both boys are showing more focus on school each day.  If you ask, He will answer. End of story. 

No first day kindergarten blues here!

What were you doing on this day five years ago?  On August 8, 2006, Ava was admitted to the hospital for the first time with seizures.  She’d been having them before this point but that day they escalated drastically.  She was sent to Forrest General Hospital to be kept over night for observation, and before the sun came up the next day she was sent to University Medical Center in Jackson because the seizures couldn’t be stopped.  That afternoon, Dr. Evans diagnosed her with Aicardi Syndrome.  I say all the time, just like everyone else, that I’m having the “longest day of my life”, but that one really was.  On August 9^th (D-Day for diagnosis day) we were told how hard her life (and OUR Life) would be, and that Aicardi girls carry a mortality rate of 8 years.

Five years later…

…and she starts kindergarten! 

I wish so much I could have known then that despite the hardship, there would be this much joy.  I wouldn’t have wasted so much time being sad or angry at our circumstances.  Don’t get me wrong, I admire the honesty of the doctors we met with during that time.  I have come across a few during her life who think of me so fragile that they won’t tell me every thing I need to know…and I always find out anyway.  I just wonder how differently our time would have been spent then if we’d known not to worry about cramming all of her life into a short amount of time.  I’ve learned my lesson!  Now, we take it one day at a time, and always remember that she’s beating the odds a hundred times over every time she wakes up and does something new – just like she did this morning!

This morning Ava woke up babbling at 5:15 A.M. despite the fact she stayed up babbling until nearly 11 P.M., 2 hours after her bed time!  She looked so proud and excited to put on her uniform, she “talked” to me the whole way to school, and as soon as I rolled her into her classroom, she turned all of her attention to her teacher, Ms. Stansbury.  I kissed her goodbye but she never took her eyes off her teacher (or stopped babbling!) She had her backpack at her side with her lunch box (filled with Pediasure and feeding tube accessories), and she looked just like any other kindergarten student in the school.  Five years ago today was the scariest day of my entire life.  I thought I would lose my little girl forever, but today I know better than that.  She is living and happy and precious and beautiful and PERFECT! Happy 1^st day of Kindergarten, Ava.  Now I have to figure out what to do with myself all day long with out my missing limb! =)

Something else pretty spectacular has been happening lately in our community! This past weekend one of our local Chili’s Bar and Grill restaurants sponsored a benefit to support the Wheels 4 Ava foundation (so Ava can get a wheelchair van).  They were gracious enough to donate 10 percent of their sales from open to close, Thursday-Saturday as long as the customer mentioned Wheels 4 Ava or brought in a flyer in support of it.  I don’t have the info on the exact amount made yet but I know it will be good!  My husband took me and our kids for lunch on the first day, and I can’t tell you how much it warmed me to see total strangers walking in with their flyers in hand, ready to support Ava.  People from multiple counties attended the benefit, and I wish I had a way to thank all of them personally.  On the second day, one of the Chili’s managers asked us to bring in a donation jar for Wheels 4 Ava to be placed at the front of the restaurant.  In just TWO DAYS, the jar made $525. Wow!  The generosity doesn’t end there, either.  There are so many local businesses and people making private donations, and every day I get an email or call from someone with a new way of offering to help.  I have always known what a blessing Ava is to me, but I don’t think you can live in this area and see all of this happening without feeling God in it.  He has used Ava to be a blessing to everyone! Happy Monday, everyone. And thanks for letting her matter as much to you as she does to our family! =)

Step 1: Kindergarten Step 2: The World. Now you can do anything, Ava!

This morning I took Ava and the boys to see her new kindergarten classroom – WOAH. Deep breath…whew, what a day! 

 It was probably one of the most exciting days we’ve had this entire summer vacation!  Connor was kind enough to help me wake Ava up and get her dressed in what he said is “her most favorit-ist clothes in the whole wide world.”  I call it the pink suit:  hot pink hello Kitty graphic t-shirt, hot pink hair bow, hot pink Capri tights, pink tutu over the tights, and hot pink gladiator sandles.  The only thing NOT pink on my princess was her fingernails.  Connor thought those needed to be blue.  Blue? Really? REALLY?  And what did Connor tell me pinkalicious princesses eat for breakfast on very important days?  Pink strawberry Pediasure, of course!

I should mention before the storytelling that our boys have always gone to a small Christian school in the area, so when we pulled into the parking lot of the much larger school that Ava will be attending, they were kind of dumbfounded.  “Woah!” Dylan’s jaw dropped. “This school looks like a real school!”

I don’t know why, but that made me laugh so much!  I can’t even imagine what kind of school they were expecting her to go to, but to be honest, the realness of it all really began to show once I realized what Dylan did: this year, she’s in big girl school.  Soon we were meeting the staff we had not met already, and getting a small tour of the school.  The library is much bigger than the one at Dylan and Connor’s school, so they were super impressed.  After seeing the books, Connor said a little too loudly and little too seriously, “Ava goes to Hogwarts? Is this REAL?”  Then, we finally met Ava’s new teacher.  I can already tell you that Ms. Stansbury is going to be an amazing influence in Ava’s life.  She brought Ava (and us) into the largest classroom at the end of the hall and showed us the kitchen area, and the large changing table.  Note to self: Get Drew to build one for our home! She told us that in case of an accident, the class is equipped with a tub, as well as a washer and dryer.  A nurse will be feeding Ava during lunch time.  There are eight other “friends” in her class with her this year.  Because it’s an art infused school, Ava will be getting art and music therapy daily.  She gets to have recess.  There are places for each student to hang a backpack.  She has her own desk.  It’s 100 percent, absolutely, totally, and completely real school.  Dylan had it right.  =)

Ava took to Ms. Stansbury in no time.  She smiled for her, and babbled a little.  She showed her the blue fingernails that her brother had painted for her.  She looked around her classroom, more excited than I’ve seen her in a very long time.  When Ms. Stansbury rolled her to her desk (her very own desk!), she looked at me with the biggest grin to make sure I was seeing everything she was feeling.  I have to tell you, days like this validate everything real and good and pure in the little world she and I sometimes hole ourselves up in.  When I looked at her in her desk, excited and waving her right hand to answer Ms. Stansbury’s question of which one she preferred to color with, I knew that she was in the very exact place she needs to be to start the newest chapter of her life.  The last five years of Ava’s life have flown by, and I know that every mother says that about her child, but what if she gets to graduate from high school?  What if she gets to have a 25^th birthday?  What if she gets to be an aunt one day?  Kindergarten is just the start.  A very happy, unexpected, welcomed start to a very exciting new life.

Monday morning will be Ava’s first official day.  How many of you think I’ll be able to make it the whole morning without crying? I’m pretty sure seeing the uniform on her will do me in!  Go, Ava! You made it sweet pea! You’re a big girl now!

Here is Ava at her desk showing Ms. Stansbury which hand she likes to color with.