Au Revoir Twenty-Eleven!

Au Revoir Twenty-Eleven!

As my little ones were singing yesterday, “It’s here! It’s here! It’s FINALLY here! The end of the year is finally here!”

This year has been big for our family. In one year, we have watched our children grow another year older, Ava has defeated Aicardi Syndrome another year, and we entered another year of marriage.  We completed a year long list of goals on home renovations (unfortunately for my husband, I’ve already written out the honey-do list for 2012…we’ll talk about this list situation in a bit), lost a pet and adopted a new one, Connor developed a new kind of compassion for sick kids, and Dylan gained a SLEW of wonderful new friends. Drew and I read a lot of books and spoofed a lot of films. We purchased our second Kindle to house our digital collection, and added more “real’ books to our study (our happy place). I started this blog (whew!), and put recreational writing back in my life as a FUN priority.

It’s been really, really good.

This morning Drew asked me what my resolutions were, and I couldn’t think of a single one.  It’s always pained me to make a resolution at the start of a year, because just saying something out loud doesn’t necessarily make me follow through.  We talked about that, and how funny it is that every day I do complete a written a to-do list of what obviously needs to get done…pick up groceries, finished cleaning upstairs, wash Ava’s laundry…almost to the point of redundancy. I get so much validation from scratching something off The List. And there’s not just one list…oh no, never! I have my mega week to-do list, the daily to-do list, the “take on the road and do this while in town today” to-do list, the basic family activities calendar, and my digital Blackbery list of stuff to do whenever there’s time.  Then it hit me, why don’t I do away with The List (er…lists..)? How much more gratifying will it be to be able to do all that needs to be done without being a slave to a schedule? What if I really will feel better about skipping laundry one day, or putting off a project for a night so I can do something *gasp* spontaneous? Drew will probably think I’m nuts.  Or love me more.  Or both. =) So with that, it was settled.  With Drew as my witness, I vowed to throw out the list….for a few days. Let’s don’t get crazy, now!  What are your resolutions for this year? And how will you make sure to keep your word to yourself?  

Now, not to change the subject but I need to finish telling a story that I started in my last post.  As mentioned above, this year my step-son Connor has really developed an understanding of Ava and children like her that a lot of people don’t have until they’re much older.  In my previous post, I talked about one of our trips to the hospital with Ava, when Connor became concerned about the sick children who wouldn’t be able to go home for the holidays.  His heart was broken, and he wanted to think of ways to make them happy and distracted from the place they were at.  After much thought, Connor decided to go home and draw as many pictures of the “outside” that he could and deliver them to the kids the next time he made a trip to Jackson.  Word quickly got out about his kind heart. I heard many, many compliments in the next few days about how special of a child he is for wanting to do such a special thing.  He did draw several pictures, but not as many as he would need.  Not to worry though, because soon after he received a very, very special package.

Now, of course, I already knew the package was well on its way.  My friend Ashley who teaches the 6^th grade in Bratislava, Slovakia heard about his idea, and God put it on her heart to get her students involved. One of her students had a mom with brain cancer, and knew all too well how troubling and lonesome hospital stays can be.  He named the project “Creations for Connor”, and before Ashley knew it, Creations for Connor became a school wide project. 150 drawings later, and Ashley was ready to mail them to Connor and Dylan for distribution.  Wow!

Ashley's letter to Connor

Connor holding one of the drawings. He is so proud!

I love to be a witness to things like this.  Aicardi Syndrome is a terrible thing, but look at what good it as done in our family.  Ava is sick, so Connor learned compassion. Connor wanted to make sick children happy, so Dylan got excited and wanted to help, too.  I’m so very proud of those three! And I have no doubt they will continue the cycle with their own children one day.

Hundreds of drawings created and donated by school children in Slovakia for Connor and Dylan to distribute to sick children here in America.

And so, because of that, it will never matter what bad things we experienced this last year because we are surrounded by so much good and happiness. I think that's safe to say that applies to everyone's life if you stop and think about it. 

I hope all of you stay safe and have fun tonight!  We are on the lucky list of parents who have sitters for all of the children this year on New Years Eve.  Go ahead...be jealous! We will be making the most of our night...movie theater, dinner out, then back home for XBox Hockey and Redbox comedies with a bottle of cheap champagne to occupy us 'til midnight. 

With so much to celebrate this last year, I can't even begin to imagine how awesome the coming year will be. Thank you God for all that you have done for us already!

This sweet stuff is also used to celebrate our anniversaries (we had it on our wedding day).

Big blessings in all that you do this year from our family to yours!

Thanksgiving Blessings

Ava is so fortunate to have a big brother like Connor in her life! The day before Thanksgiving, Ava had a check up with Pulmo and Connor was able to come with her. I've always loved how much he enjoys going to Jackson with her, and how he views the hospital as a special place for Ava that he is lucky to get to be a part of, rather than a scary place. One of his most favorite things to do at UMMC is to walk to the top of the parking garage and watch the emergency choppers fly in and out. He's always amazed in the way they lift and fly away, and how the whole world seems to shake when they're near. I'm willing to bet he will be working in the sky one day...love our little pilot in the making. :)

Connor was totally impressed!

This trip to UMMC was especially heart warming for me, because Connor knew it was the beginning of the holidays and he had a million questions about how the children who couldn't leave would celebrate.  "How will they get their turkey?"  "Those kids look just like me and Ava. I wish they didn't have to be sick.  How long will they be sick."  And the one that did me in..."What about all those kids who have to stay in the hospital all those days after we get to go home, how is that fair? That doesn't seem fair."  He's right, it isn't fair.  He talked about it the whole 2 hours we were in the hospital.  He talked about it during our lunch.  He talked and he wondered and he questioned and he fretted.  On our way out, he was finally quiet.  We passed the neonatal hall and he watched another family with a little girl his age leaving, without their new baby.  I could tell he was sad.  Immediately, he let go of my hand, ran in front of Ava's wheelchair to stop me, and said "I have an idea. We're going to draw pictures for them!"  

Waiting for the doctor.

"We'll draw pictures for them?"


"Yes!" the sadness was leaving him. "If we draw pictures of the outside for them and put them on their walls, they'll think they're outside with every one else. They won't be sad anymore."


What a sweet, sweet little boy.  I promised I would help him with his project, and promised we have at least  a few "outside" pictures delivered the next time we went to Jackson.  What a blessing to have a little one in the family who is so concerned for others.  I know I say it a lot, but praise God for bringing him and Ava together.  I already know how their eyes have been opened because of it!

Connor and Ava holding hands so she wouldn't be afraid.

Ava's check up went quite well.  She was able to reduce some of her medications and get totally off two of them.  We know every "change" is temporary, but it's wonderful to get these little breaks in medications from time to time.  It was a wonderful Thanksgiving blessing. :)

Thanksgiving

I have a lot to post about regarding our special day today and Ava's trip to Jackson yesterday, but right now it is all over shadowed by an almost-outside-of-our-family problem that has nearly resolved itself in the last few weeks.  The situation is unique and personal to our children, not something I would necessarily find appropriate to blog about, but I do feel led to remind others of a verse that seems to not only have helped us, but is perfect for today, Thanksgiving Day.

Phil. 4:6 - "We tell God our problems, making our requests known to Him with thanksgiving." 

God has amazing timing.  I regret ever doubting him with any of our painful situations. I am disappointed that I ever felt like our needs weren't being met, because even when we suffered or hurt, or when our children suffered or hurt, I understand now that the prayer was being answered, He was just making sure the kinks were worked out before He gave control back to us. I promise my next post won't be so weird or short. I really just wanted to say I hope all of you remembered to thank Him for blessings you have already received or problems He has already resolved.  If you haven't received them yet, just keep praying. He will  answer it how He's supposed to, when he's supposed to, and we should never take a break from our gratitude because our timing is different from His.

Happy Thanksgiving, everyone. Happy Thanksgiving Drew, Dylan, Connor, and Abuh.  Like Dylan says, you four are my favorites and you rock like the Beatles but better. Like Connor says, I love you as much as you love me but  probably a little bit more. :)

November

November is an amazing month.  Here in the south, it’s when autumn really begins. The humidity and intense heat leaves us, putting us all in better moods (not to mention having better hair-ha!).  We watch football, and make family time.  There are school plays and special church dinners, and so on and so on.  Even Facebook lightens up in November.  The trend for the last few years has been to post a status, one on every day during the month, to remind others what you are thankful for (and hopefully reading other's statuses will remind people what they themselves have to be thankful for).  November is special.  We think differently.  We feel differently.  We’re better, happier people.

I’ve been thinking about this lately, and how funny it is that we vow to be more grateful once November makes its appearance.  For the entire month, there is this internal battle (at least with myself) on how I know I should be openly grateful all year because it feels good, but sometimes, especially in our different kind of family, I don’t always feel like being grateful.  Bad things happen.  Money runs tight, children get sick, things break, important things are lost, people leave, words sting.  It can’t always feel like November but the thing is…that shouldn’t ever matter.  Gratitude is required of us. Every single day. 

I’ve also been thinking a lot about teaching our children to be grateful, and talking with them about what they are most grateful for.  During this, I’ve wondered many nights what Ava would say if she could answer that question on behalf of herself.  1 Thessalonians 5:18 tells us “Give thanks in all circumstances; for this is the will of God in Christ Jesus for you.”  So what would a severely disabled 5-year-old girl have to be thankful for? Plenty! And I have no doubt in my mind that Ava sings His praises every day, even when her eyes are too tired to open. Even though she can’t speak. In fact, in her quite and simplicity she probably finds Him easier than most us who act like we can barely make the time.

With the help of my eldest children, we came up with a list of things that Ava is probably thankful for.  Some may seem funny (this is kids we’re talking about here), and some of them have completely changed my own sense of gratitude for my life.

Ava’s Thank-you’s:

-          Ava is probably thankful it isn’t 1801.  This one came courtesy of her big brother Dylan.  “If you think about it,” he told me one day a few months back, “if she was born in 1801 she wouldn’t even be alive.”  This is so very true, and I have actually thought about it a lot during her life.  Chances are she wouldn’t have survived past eight months old, when she could no longer eat without the assistance of a tube in her stomach. Not to mention, the diagnosis of her syndrome wouldn’t even exist for another 150+ years.  Ava may be sick, but she’s so fortunate to have been born in a time when, so far, every scare or threat on her life has been saved by technology and much advancement in medical knowledge.  God put me, and her, on this earth at a wonderful time.  Bless the hearts of the mothers who lived back then with daughter’s whose lives were taken because of this syndrome, and probably never even knowing something was wrong until it was too late.  At least Ava has more of a chance, and knowing that was completely in God’s timing should make all of us feel overwhelmingly grateful.

-          Ava is probably thankful for cool duct tape.  This little gem came from Connor, and I will go ahead and admit I’m overly grateful for this as well.  Ava has a special blue rubber chair that she’s had since the first year of her life.   I don’t know how to explain what it means to her other than to say it’s her own Aicardi version of a security blanket.  She prefers to sleep in it, eat it, even seize in it (what a preference for a 5-year-old to have!). As a toddler, she would get upset and then self soothe the moment I placed her in the blue chair.  She’s learned to “escape” from it, building her muscle tone tremendously.  It’s been used in the bath tub.  It’s made the cut in almost every home picture of her.  It’s where she’s safe.  About a year ago, the chair began to fall apart.  Our insurance wouldn’t cover the purchase of another because she already has a wheelchair and like anything she requires, those things don’t come cheap.  Every morning when I would put her in it I would pray that it would last a little longer until we found something else, or that she would just learn to live without it.  Two months ago the seams and edges of the chair began to split so fast (and were so sharp) it didn’t make me feel comfortable to even put her in it.  Her legs stay scrunched in it because she has grown so much, and we have long since removed the safety belts because her growing body is too big to allow them to snap comfortably.  Regardless, Ava wanted to be in her chair.  I called our medical supply company and told them to get me another as soon as possible, whatever the cost.  That’s when they let me know that the chair she has now is in its largest form.  They could have ordered a new one, but it wouldn’t be worth the money because soon she will completely out grow it anyway. I was devastated.  I know how much security and comfort her seat gives her, and in a child with severe multiple disabilities, it can sometimes take a life time to find something like that for them.  That’s when I found the “pretty” duct tape.  It isn’t much but its holding her chair together and looks so Ava-ish doing it.  This tape is buying me the time I need to help Ava find her new place of security.  It’s not just duct tape…its completely kept Ava’s world from changing too quickly. That means everything to a special needs kid.

-          Ava’s probably thankful for Facebook.  This idea is all on me.  I am officially addicted to Facebook because I enjoy being connected to people I care about, but most importantly, with the entire world of Aicardi families.  Before Facebook, we were connected to many, many families through email, but nothing short of living next door to someone can take the place of being able to discuss questions, fears, or even celebrate achievements in real time.  Pictures and video make Ava’s Aicardi sisters even more real to us, even though they may be on another continent. I love these girls and their parents as if they are our own family.  Years ago when she was first diagnosed, I couldn’t help but feel fear of the unknown and anger that she was given a disability so extremely rare.  I didn’t know how I could do it on my own, without someone who’s “been there, done that” to help keep me going.  Facebook has allowed that. Say what you want about the idea of social networking, but evil can be found in anything.  I am just so very grateful that our small group of Aicardi families has been able to use it in the way that we have.  I bet Ava is, too.

So you see?  Every one, in every circumstance, has something to be thankful for.  Even Avabug. 

I am grateful for her.  I can’t say enough how much my whole world has changed because of her, and even her diagnosis.  I often feel like her suffering has opened my eyes in such a way that I want to hug her every day and thank her for making the sacrifice so that I may continue to grow. I’m thankful for my husband, Drew, who did not meet Ava until she was two-years-old, yet has fit so comfortably into her special world that you would never know it.  He provides for her, loves her, entertains her, and allows himself to learn from her, too.  I’m thankful for my oldest step-son Dylan, who has never let another child speak harshly of Ava without defending her, yet still finds room in his heart to help them understand her better, even after.  I’m thankful for my youngest step-son Connor, who is the dream maker for Ava.  He believes in her in ways I never thought to, and she has blossomed so much for it.  I’m thankful for Ava because she is THE best teacher I’ve ever had.  She is changing the world and I’m the first one in line to experience it.  I’m thankful for my dad, whose own heart aches for Ava as much as mine ever has.  It’s nice to have someone you love so much share the load with you.  I’m thankful for my mom, who has never once failed me when I needed her, and who is the first person I think of when someone tells me I’m a good mom.  I had to learn it from somewhere!  Most of all, I am thankful for it all.  I’m thankful for all of the love and good people in my life…all of the “November” days…and I’m thankful for all of the bad days that pop in between.  I am so thankful He gave me this life and that she’s teaching me how to live it.

Always Never...

This blog is supposed to be dedicated to my family's adventure in Aicardi Land, but this is too cute not to share.

Last night the five of us went to the South Mississippi Fair, and as all of us Southerners know, you don't get to leave the fair without getting a free copy of the New Testament. Although Connor has several of his own Bibles, he is obsessed with collecting the tinier versions from the fair each year. He grabbed one for himself, and then one for Ava and we made our way to the van.  Before we could even get the children loaded, Connor positioned himself in front of Ava's wheel chair, Bible in hand and upside down, and began to "read" to her what he believed to be the commandments.  Somehow, I think God will still be pleased (and hopefully preacher man Connor got the message through to his impressionable little sister).

The commandments as he delivered them:

1) Love your enemies.

2) Always never be mean to your brother.

3) Always never kick people.

4) Always never say a bad word.

5) Always use a potty, not your pants.

6) Always never walk in the road when cars are coming.

7) Always never cough on someone.

8) Always keep an eye on the road.

9) Always never blow a horn at the movies.

10) Always obey your parents.

Kids are the best, aren't they? :)

Teeth are so overrated...

I'm short on time this morning so I'm going to offer up the condensed version of what we learned yesterday at Ava's Pulmonary check-up.

- There is a part of her lungs that has been negatively affected by her spinal problems, but the biggest issue is still her upper respiratory area (whew!). It's not the best news but to me, but it sounds a lot less scary than having full on lung trouble.

- As we already knew, the muscles in her throat area are non-working. Because of this, her body is trying to ease the swallowing process by making her salivate more.  The problem with that is that she aspirates (because there are no working muscles), so she can't have anything by mouth anyway or it'd go directly into her lungs.  Now that her body is creating more saliva, it's all falling into her lungs and that's painful (imagine times when you swallowed water down the wrong "pipe", only it's all the time for Ava). Bless her heart! It doesn't help that the air way is so irritated that it's swollen almost shut, and she has very large polyps in both nostrils, so she is not able to breathe through her nose at all at this time.

- The three new medications added to her twice daily cocktail (totaling EIGHT now) are "extras" to help try to naturally (funny to call that natural!) open the air ways a little more to making breathing a little easier, and one is to try and thicken her saliva in hopes that she will have time to spit it out before it slides into her lungs.  We are hoping and praying this works! If it does work, not only will that mean we can put the trach off a little longer (remember, it's important for all of us to have two functioning airways), but also it could cut back on her time spent using a nebulizer each day.  Using it every four hours right now is stressful for the entire family, but especially her. She's a five-year-old princess and has other important things to do!

Ava's daily breakfast and dinner menu (at least for lunch and snack it's Pediasure, only!)

Ava will go back to see Pulmonary on November 10th. I'm asking that each of you pray that this month of intense treatment gets everything healed the best it can be! However, if it doesn't work, I think we're all okay with getting the trach placed again.  As much of a pain as it is, it is kind of comforting to know that she has the extra "help" getting a breath of air.

Now that we've covered the important stuff, I'd like to share with you some of our Aicardi DRAMA from yesterday! As you already know, Ava has multiple seizures daily. It's second nature for her to have them, and for us to watch them...yet...yesterday she had one for the books!  She was sitting in her favorite little blue chair about two feet away from the coffee table and enjoying her morning cartoons. She kept looking at me "funny" but didn't make a sound so I didn't think much of it.  Sometimes the littlest things can confuse her and she shows it on her face.  I walked outside to load up all of her bags for our road trip to the doctor and walked back into the living room just in time to see her flying, yes FLYING, out of her chair into the coffee table, face first.  It was the worst seizure I've seen in a very, very long time.  Her bottom row of teeth slammed into the table and instantly knocked one out.  The one next two it was twisted so badly I knew it would be falling out soon.  Thank God she does not feel pain during seizures (we think).  She never even cried afterwards, but she was totally embarrassed about her teeth.  I could tell.  The thing is – it’s absolutely adorable! And what a story to tell! That kid goes through some stuff, huh?

While she was undergoing some breathing tests at the hospital later that day, a second tooth feel out (she swallowed it, go figure!) and the doctor noticed two more loose ones. On our way home, I saw her furiously tonguing at them so I pulled over and pop, out came the third! The fourth loose tooth, thank goodness, seems to still be tight enough that it won’t come out anytime soon. Not that it matters, she doesn’t eat anyway. =)

Seriously - can it get any cuter? Even with no bottom teeth? Nope!

There was a happy ending to the crazy adventure of yesterday, a visit from the Tooth Fairy.  We do it old school…um…I mean…Mr. Fairy does, so in our house you get a quarter for each tooth.  Ava earned a 75 cent profit yesterday, but we didn’t know what to do since one tooth had been swallowed (by the way…chest x-ray showed it went into the stomach, not the lungs – that’s a two part miracle!).  Leave it to Connor to come up with a way to help her. He decided to cut the cotton tip off of a q-tip and place it under her pillow with the other two teeth.  This worked, too, because Mr. Fairy had paid up by the time she woke up this morning! I just hope he doesn’t try substituting things for teeth under his own pillow.  

Bet you can't tell which one's a fake! ;)

All in all, it was a bad day turned good, but that’s kind of the story of our life isn’t it? Thank you Jesus for pulling us through, yet again!

How To Find Sunshine During a Storm

I haven’t posted about Ava in quite a while, but she’s been on my mind quite a lot lately.  For the last two months, our family has been hiding a struggle that Ava has been having for several reasons: (1) Point blank…it sucks to scare people and (2) I’m not above admitting that I don’t like to talk about every scary thing in hopes that it goes away. This though doesn’t seem to be going away.

In early August, Ava developed an almost unnoticeable cough that has (very) slowly gotten worse. At school, her teacher, nurse and class helpers noticed she wasn’t able “catch a breath” at times, and her lungs were chronically filled with fluid. She was beginning to sleep a lot and when awake, either withered and coughed in pain or gagged herself into spitting up every bit of food she’d had tube fed to her.  The muscles in her throat area are so weak that they do not move, meaning she aspirates entirely, and in the event she somehow gets “junk” up, she immediately swallows it back into her lungs. We do have a nebulizer and a suction machine, but they can’t solve the problem totally.  With the nebulizer, she inhales an antibiotic to fight infections in the lung (that she can never seem to get rid of!) and also a steroid that helps expands her shrunken airway and lungs. The suction machine, if you’re not familiar, is a battery powered machine that…well...sucks gunk out of the upper airway or in more extreme cases (like Ava’s) directly from the lungs. We take a tiny plastic tube and stick in through her nose or mouth into the top part of her lungs and get out the gross stuff, the same way anyone else would cough it out or blow their nose.  I hate doing that to her. I hate that she can’t cough it up naturally although that instinct is still there. Can you imagine how frustrating that must be for her? I hate risking infection every time the tube is inserted.  It’s not always preferred by doctors, either.  Suctioning can be addictive, as much as we hate to do it, and the more we do it to make Ava comfortable short-term, the weaker we make her lungs. Lose-lose!

We made an appointment with Ava’s ENT and within minutes he was feeding me a dose of reality.  Ava was fortunate to have been a trach baby once and later had it removed (at the belief that her lungs were finally growing rapidly enough), but there would definitely be another trach in her future.  Along with the ever-present lung and upper respiratory structural problems, it didn’t help that Ava’s spine (and the emergency surgery it caused this summer when a rod exposed itself through the skin) has been giving her even more trouble with lung growth and function. I hurt so much for her.  It’s always amazed me though, how even in the delivery of the darkest news, just the presence of Ava makes everyone so comfortable. Yes, we were getting very bad news, and being told to prepare for new things, but Ava sat in her chair and stared at us so peacefully and at ease that we couldn’t help but smile back for her.  She’s amazing like that.  She can make me forget to be afraid even in the very moment.

When Ava and I got home from Jackson that night, Dylan asked me if Ava’s lungs were okay.  I told him no, and that we would work it out.  He reminded me that she is “kind of tough” so I shouldn’t worry. He’s right. I lost a lot of sleep that night thinking about how short and precious her life is.  I have to say, I honestly don’t dwell on the fact that Ava does not have a normal life expectancy.  Sometimes it catches me off guard to think about it and I have a good cry about it, then I straighten up and carry on with our business.  This time was a little different, though. Several times during the following week I caught myself saying things like “But this is what we expected” and “We are so fortunate to have even had this much time with her!” I can’t ever remember a time where I had to self-assure myself so much…never have I had to remind myself over and over that I could prepare for this, too, and like Dylan said, I shouldn’t worry, because even if God’s plan for her life is totally different from my plan, we can all rest easy knowing His is the best one.

I’ve spent some time in the last two weeks connecting with other parents of special needs children whose children have already left us.  I didn’t tell anyone I was doing it, because I didn’t want to be viewed as a pessimist, or even worry anyone anymore about Ava (my husband especially!).  I asked for advice on how to prepare for The Day, and I asked how they coped afterwards. I asked, because I especially need to know now, how to stay strong when things are really difficult, and how to remain functional for the rest of your children.  Their answers were, short, clear, and completely comforting.  I put together this little list of things that I learned from them and tucked my own copy on the bottom of my nightstand drawer.

How to prepare for the worst when the worst is the best you’ve got:

1)      Accept it. Their fate is your fate, and just like with anyone who has had a loved one leave them, God has already developed a plan for your life “after” and set the wheels in motion even if it takes some time for you to realize what that plan is.

2)      Hurt. Be okay with hurting. Expect to hurt for a while. Feel no shame when the hurt goes away.  Feel no discouragement when the hurt unexpectedly returns.  There is a cycle here, and that’s normal.

3)      Talk about it. No matter how unique the situation, there is always someone who understands it.

4)      Remember your angel. One day my angel will leave me – I know this. Remember the unconditional love you shared. Pray for the ones who are still here on earth.

5)      Start over. Sit down – write a new life list. Live it. Give thanks to Him for being given one of the most incredible responsibilities, ever.

Of course, I am still unexplainably sad about the life Ava is living, even though I know she is one of the most precious and meaningful things in this world.  She’s still my baby, and she’s still sick.  But….I’m okay with that. Like I said to all those people who wanted to talk to me about Ava’s newest “lung” news, we knew this was coming and we’re totally ready to take it on. 

I hope you aren’t sad after reading this post.  I hope you are able to see things the way I’m learning to, and to be comforted by that. Thank you for letting me share this part of our lives with you, and thank you for praying for our sweet little Avabug.  On Thursday, we meet with a new pulmonologist.  Please pray that he will have answers for us, and that no matter what he says, our little sunshine keeps smiling. =)

Yes, there are angels among us. We have one upstairs!

Last night, our 6-year-old son Connor called his dad and me into a top secret meeting in Ava’s room.  Big brother Dylan wasn’t allowed to hear anything, nor the cat or dog. Ava?  Well, she was missing (or so he thought.)

“Mom.  I know Abuh’s an angel.  I know she knows how to pop her wings in and out so that nobody can see them.  I know that she leaves her room at night to fly.”

He paused, looked me over for signs of doubt, and then proceeded.

“And now I know how she does it.” 

You see, a few years ago whenever Connor first met Ava (they are step-siblings but they have no idea!), he needed an explanation for the two vertical scars that ran along the length of her shoulder blades.  The scars were remnants of Ava’s first back surgery, and at the time were a rather sore sight to see on an otherwise perfectly healthy looking child. It was the first time we were able to see on the outside of her body a reminder of the chaos happening on the inside.  In the days following Ava’s surgery, I would tell her stories about how she used to have wings (because she’s an angel, of course) but that she didn’t need them on Earth so the doctor decided to remove them and keep them safe in a closet until she was ready for them again. 

When Connor came into our lives, I shared the story with him, and as it usually goes he decided to tell me the rest of the story…a little bit here and there, and continues to do so.

What we came to learn from Connor is that Ava got her wings back.  He explained to us that she needed them now to practice flying, so one night he helped her get them back and put them on. “Okay…well, where are they?” I asked.  “MOM! She knows how to pop them out and then pop them back in to keep it a secret! Duh!”

Next, he shared with us that when we sleep, Ava gets in her flying hours.  When she injures herself in real life, he tells us it was really a flying accident injury but that she didn’t want us to know in case I were to have her wings taken away again. One thing he could never decide for certain though was how she would get out of the house.  A theory he seemed to favor the most is that she would go through his window and then leap off the roof. He even thought he might have heard her once or twice, as clumsy as she can be.

When we were summoned into the top secret meeting and sworn to secrecy, I had no idea we were going to hear more details of our daughter’s secret life.

“You know how she does it?” I asked him. “Does what, Connor?”

“I know how she escapes!”

He squealed and then hushed himself as he pulled back her curtains and showed to us the tiny spot of broken window damaged by Hurricane Katrina, repaired with a plexi-glass shield, and then long forgotten. Piece by piece he lifted it up until a small breeze of air could make its way through.

“Do you see this? She’s been leaving through this hole! And she’s not in here…I think she has already left!”

Ava hadn’t left, in fact she was downstairs on the living room floor scooting herself in circles, but Connor didn’t believe it. He had worked so tirelessly to find out the how to the mystery of Ava the Angel, and tonight, he struck gold.

“She changes herself into bug size so she can get through this hole and go discover new bugs.  That’s just what I think.  I’ll ask her when she gets home.  Dad, do you think bats will eat her? Will they know she’s not a bug?  Maybe they will see that her head still looks like Abuh.”

Friends, I will tell you this.  There is unexplainable joy in having a child with such a creative mind and compassionate heart that he can dream his special little sister into being something so….angelic. There is hope to be given in having a child that will search his life away for all the answers about Ava that most of us don’t even think to ask.

A little later on Connor came downstairs and found Ava still wiggling on the floor. 

“Dad! Abuh’s home now! I think she crashed down here or something. Abuh are you o-tay?”

He jumped down near her lap to debrief her.  What did you on your adventure, Abuh? Did you change into bug size? Did a bat eat you? WHAT? An OWL tried to eat you?  All the while she coo’d, her grin grew larger, and she answered him with her infamous thumbs up.  Drew and I listened to the two of them ‘’talk” for a little while and I laughed at his silly translations of what she was saying.

When he finished, he scooted closer to her face and turned his ear towards her, lowering his head so that we could barely hear him. 

“Do your angel call, Abuh.  I want to learn to how change into one.”

I had to know more. 

“Connor, what’s an angel call?”

“It’s a sound angels make when they talk but you can only hear it when you’re an angel.  It sounds like fffffiisssss ffffissss. I can hear if I try really hard.  That’s just because one day I will be an angel with her.”

It’s hard for me to keep from crying when he says things like that.  I can’t wait to hear the call one day, too.

Nothing's forever, not even tattoos.

“Nothing’s forever, not even tattoos.” – Kat Von D

AHHH!!!! It’s the SERIES finale of L.A. Ink tonight. Kind of depressing. Do any of you ladies remember how empowering it felt to watch Kat Von D begin her journey into running her own tattoo shop? I don’t like to see the ending to anything…a good book, a good T.V. show…but I can’t think of any better way for this show to end than with a spotlight on the D’Ortenzio family. You see, Mario and Kerry D’Ortenzio are very special parents with a house full of beautiful daughters. Their daughter Reese has Aicardi Syndrome, just like our little Ava.

 DEATH2LIFEREVOLUTION

Our Angels

I came across the D’Ortenzio family only very recently and when I found out they would be on the show getting tatted up and promoting sweet Reese and their ministry, DEATH2LIFEREVOLUTION, I felt a huge swell of pride! I encourage you all to watch tonight’s LAST and MOST SPECIAL episode of L.A. Ink on T.L.C. at 10/9 C….and get your box of Kleenex ready.

Oh, and to Mario and Kerry – you do realize you’ll be famous when you wake up tomorrow morning, right? Last. Episode. Ever. I’d like an autograph, please and thank you. ;)

Here’s a snap of my first and only tattoo that I got when Ava was a tot, reminding me to keep my faith and my chin up!

This week in general has been all consuming with Aicardi – educating.  In one day’s time, I was asked for info by an X-Ray student (wanting to see prints of Ava’s scoliosis and kyphosis…odd combination!) and a friend who’s studying to be a child birth educator and birth doula, both interested in hearing Ava’s story.  Every mother loves to talk about her kids, but I especially love to be approached with these types of questions. Not that validation is needed, but it makes a mommy like me proud to know that my daughter’s differences are helping others learn. She is an amazing teacher!

Jennifer Goodwin (my super smart – super hero – super mom friend) who is studying to be a birth doula, asked me a question I’ve been waiting to be asked for years now: Would you rather know your daughter was sick before she was born or let it be a surprise?

For those of you who know our story well, you know I was both informed and surprised. In brief, I knew something was off with my pregnancy. I was deemed high risk in the fifth month, and sent off to a better hospital for tests, only the tests showed congenital scoliosis and nothing more. Ava was settled in the womb so perfectly that a clear picture of her whole brain wasn’t visible, so we assumed that there was nothing wrong, and never that her whole brain wasn’t actually whole to begin with.

When she was 11 weeks old, the seizures began.  Shortly after, the official diagnosis came. I’ve often tried to figure out on my own which of those two periods in my life were the scariest, and I still don’t quite know.  You see, when I was pregnant, it hit me hard to learn that my baby may not be perfect. Guilt, fear, anger…all of it ruled over me for a few days. After being told she would have congenital scoliosis and would live a life with surgeries for rods instead of becoming a super star athlete, I was depressed. I was heartbroken, but I knew I needed to know.  There was nothing that could have been done to prevent or change Ava’s circumstances, but I’m glad I had that time to grieve.  Oh yes…I grieved. Hard. I had lost a dream I had for my child. I’m happy I had time to prepare for what kinds of things a life with her would bring to us.  I see it like this, other moms buy every baby book in the world in preparation – I researched until I had an idea of when Ava’s surgeries may have to begin, how much of a curve was safe, and what her life in general might entail. Potato, Po-tah-to.

When the seizures began and she was diagnosed with Aicardi Syndrome, I did feel that pain all over again. It was gut wrenching to know that all of my preparation would be nowhere near enough to prepare me for what was to come and what was happening, but at the same time it did prepare me for the acceptance of imperfection.  More dreams for my daughter were taken from me that day, but by the second-go-round I had a better grasp and understanding that God makes no mistakes, and that his dream for her is bigger than mine.

When Jennifer was asking me about it, she brought up and excellent point: Most women who are given warnings of abnormalities during pregnancy and later find them to be false alarms. When my OB suspected something was off, he sent me to Jackson without saying exactly what he suspected or really that he suspected anything major at all. That vagueness was critically important, and I appreciate it.  Dr. O’Neal let me know that he wasn’t getting as clear of a view as he would like and then sent me on my way to be viewed by better machine. I’ll say it again - that was, hands down, the best way to handle the situation I was in. I was concerned, yes. I was wise enough to know you don’t just go and see a specialist without reason, but he didn’t leave me thinking the worst. Oh...and as far as the worst goes, I’ve learned it’s better to be prepared for it but pray for the best, and when you end up getting what you had once thought was your idea of the worst, remember it was always God’s idea of the best. Ava is definitely the best.

Ava's X-ray pre-placement of Veptr rods

Ava's X-ray post Veptr surgery

I’m glad I knew what I knew before she was born, and I’m a little glad I didn’t know anything more. It was definitely enough to have my feet yanked out from under me and be told that she would be different, but I’m loving this journey of discovery we’re on now. There’s a reason God sends people, like wonderful doctors, etc. to prepare us to an extent, but there’s also a reason he doesn’t reveal it all to us at once. I highly doubt two machines at two separate hospitals fluked due to coincidence. God just didn’t want me to know it all right then.

The Story of the Sun

     Whenever I first considered writing this blog, it took me seconds to come up with a name for it.  I sat on the couch writing down my frustrations of the day in my notebook - for some reason writing them down makes coming up with solutions to correct them easier.  Connor and Ava were at my feet playing with her Littlest Pet Shop Toys. He tossed them onto her lap and called them grenades.  The Pet Shop animals were at war, and she didn’t like this.  “Connor, sometimes little girls don’t like to play the same things that little boys play.”  He thought about this.  “Well what do they play? Does she want to hear me sing?” 

     Connor never sings.  The morning before his first preschool holiday program he announced to me that he would not sing, just pretend to.  He went on to explain that my mom showed him how to say “watermelon, watermelon” over and over again so that no one would no one would know he wasn’t really singing.  When he asked if Ava wanted to hear him sing, I said yes, because it’s what I wanted.

     He scooped the Pet Shop toys off of her lap, put his elbows on her where they had been, and began.  “You are my sunshine.  My only sunshine.  You make me happyyyyy when skies are gray.  You’ll never know ABUHHH how much I love you. So please don’t take my sunshine away.”  He backed off of her legs and looked at me, but I was staring at her staring at him, eyes wide open and her face smiling.  “There. Is she happy now?” he asked, right before igniting the Pet Shop grenades again.

     I thought about the Freudian affect. How we say things we mean but don’t mean to say it.  Why did the boy who cares nothing for music or lyrics pick that song to sing to her? To hear him sing it to her was intriguing.  He loves her, and I know this.

     A couple of weeks into blogging, my husband teased me over this title.  “Am I not your sunshine, also?”  I got what he meant – it did sound a little bad if you think about it that way.  I told him about Connor singing the song to her.  He understood.  He knows that I couldn’t imagine life without him and our boys.  He knows I love and need them like I never expected to love and need another.  But you know what? I might have been experiencing some Freudian nonsense, too, because there is only one sun in our solar system, and she became mine the second God gave me the responsibility of her.

     I’m sketchy on facts about the sun, but I do know this: The sun has rays that grow us, warm us, and complete us.  It gives us energy to live.  It gravitates planets to be pulled around it.  The sun spills over with energy absorbed by plants, consumed by animals – the process continues.  We grow because of this sun.  Ava makes us all grow.  I can hear that in the words you all write to me about her.  I was dying without the responsibility and life she brought to me, when God allowed me to pass life to her.  I really don’t even like to remember my mindset before then.  The sun has a core, in which the power of fusion occurs and causes it to shine.  Ava’s core is God.  He makes her glow, and we all feel the warmth.  The sun has blemishes, also, dark spots that thousands of years ago the Chinese mistook to be birds flying in front of it.  We don’t know why these sunspots exist.  Ava has blemishes, spots of imperfection that come in the form of seizures, and other disabilities, so incredibly visible to the naked eye yet we don’t know why she was created with them.

     I don’t know what the sun needs to exist. I just know I need the sun. 

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.