Exceptional Essentials-Meeting the Toot

The title of this post is a new term I decided to use for special needs. Why are they called special needs anyhow? They are exceptional essentials. Rare. Treasured. Valued.

My life has not been exempt from knowing exceptional kids. Both my nephews, and now my future niece Chelsea are all exceptional. Earlier this year, I met another exceptional child through his Mommy, who writes a blog called, Tales of the Toot. Christy and the toot entered my world, and little toot Aiden, stole a chunk of my heart.

Just to give you a background of his story. Here is how it goes. *any mistakes are mine*

Summer of 2007, Christy and her husband David, held their new bundle of joy for the first time. A handsome little boy, perfect in every way, and healthy. However, after his four-month vaccinations, Aiden became critically ill. It was very sudden and severe. He was urgently care-flighted to a Dallas hospital from their small town in East Texas. For an entire month, their still tiny, and up to now healthy baby had multiple surgeries, dialysis, and was intubated for eight scary days. It was a nightmare that any new parents would cringe to hear. He miraculously recovered. The doctors assured them it was a fluke, and he was well. He went home. For a year, Christy and the toot, were a regular mom, and a regular little boy.

Until… a test raised suspicions that something wasn’t right. Back to Dallas they went with their baby, their toddler baby now. More testing, more surgery, and more dialysis. Finally, after a kidney biopsy they had a diagnosis, Atypical Hemolytic Uremic Syndrome (AHUS). AHUS is rare, and almost unheard of, with an estimated 300-600 cases, an unknown cause, and no cure. Because it is so rare, treatment is hit or miss, not to mention, extremely difficult.

Aiden’s body does not respond normally to infections, nor viruses and vaccinations. His immune system doesn’t play by the rules. It attacks his kidneys, blood cells and platelets. By the time of the diagnosis, Aiden’s kidneys had stopped working. He then became very familiar with daily home dialysis (imagine that with your toddler) for 10-12 hours each day. He has to take life saving medications for blood pressure. Endure shots for blood cell production and growth. Not to mention monthly visits to the big Dallas hospital where has spent more of his time than in play groups, or the library, or even the playground.

After nine surgical procedures by age 2 1/2, including a nephrectomy (kidney removal) in September of 2009, this rare, exceptional little boy, born healthy and stable, now has no kidneys. His only option is to wait until he is strong enough and big enough for a kidney transplant. When that happens, he will get on the donor recipient list. With no guarantees of getting one. Immediate family do not qualify as possible donors because AHUS could be hereditary and the risk is too great.

I’d like to share the video made of him. It will move you more than any words I could write. Please meet this endearing little child.

If you have trouble viewing, click here

You can see why I feel deeply for this courageous inspirational family and their gorgeous little boy. At the time of finding her blog, Christy was hosting a giveaway for Aiden’s Cross which I ended up winning. One of the things I said was that if I won, I would write her story. Truth is, I would have written her story even without winning, but here is the unbelievable work of art I received, a treasure beyond measure. More meaningful because of what it represents, belief in a cure.
Aiden’s Cross.

This beautiful piece, a sliver cross, designed by Sterling Grace Jewelry made specifically to raise money for research of AHUS, so they can find a cure. Almighty Help Us. So Aiden, and the other 300-600 children afflicted can live free from immune destruction.

There was never a doubt in my mind that I wanted to meet Aiden and Christy in person after seeing this story. We did not live far apart (2 1/2 hrs). We could meet in the middle or wherever it worked out. That day finally arrived. Just so happens, I had just bought my new camera, and he was my very first subject to photograph. How awesome is that? The weather couldn’t have been more perfect. On a brisk, sunny spring day in March, Sydney, Jason and I took off to meet Christy and Aiden.

Not only did I get to eat the best burger in east Texas with my new buddy Aiden, but afterwards, I got to see him enjoy his favorite activity – playing at the park with his mommy, who is absolutely this little boy’s hero. It is so sweet.

Christy is the exception to the exceptional. Her faith is strong. Her care is tireless. She smiles, she loves, and she makes everything for Aiden smooth and carefree. He has no idea he is “different”. All he knows is he is loved.

Is it easy? No. Her heart breaks every day there is not a cure. It breaks every time she has to give him a shot, put him on dialysis, or make him take pills he doesn’t want to take. No mother wants to see their child hurt or be uncomfortable. Imagine how hard she fights to keep her spirits up. To know the hurtful things she has to do saves his life.

It is only by faith that she does it. Knowing that God has a plan. Knowing and trusting he has them in the palm of his hands. She continues to hold out for a cure, to fight her own mom guilt, and pray constantly for her precious little boy. She wears hope like an essential piece of her wardrobe.

Our day at the park was glorious, Aiden exudes life.

He loves to play.

He loves to observe.

He can be demanding and stubborn like any other almost three-year old.
The only thing different about Aiden is not his “rare” disease, but the heart he has for his family.

I know it’s been months since my visit with Aiden and Christy. Many times I have kicked myself for not getting this post out sooner. I could give you many reasons why; the ifs, ands, or buts of it. About how many times I started and stopped. In the end, something I’ve learned about this blog is – sometimes – it’s not my timing and whatever reason is usually because it was supposed to be. If I had not waited, I wouldn’t be able to share with you that Aiden got a special visit from make-a-wish foundation.

What an amazing surprise. The story was even covered by the local news station. You can read the article here . Don’t miss the video coverage in the right corner. His granted wish? A new playground for his yard. That is one smart little cookie. Now he has his very own favorite thing to do right outside his backdoor. A safer and healthier place for him.

Then just this week, I saw a call to prayer on Christy’s blog. I knew then why this post waited so patiently in my drafts. I knew then it was time for the toot. It was designed from day one to be there for her when she needed it most. And folks, being an exceptional mom is hard. Harder than any of us can imagine. She needs lots of prayers. Some days, more than others.

All I ask is that you say a quick prayer for this family. Pray for a kidney transplant to happen soon (that he grows strong enough). It wouldn’t cure him but it would give him a normal life. Pray for a cure in his lifetime so that no child has to endure these struggles from birth. So that, no family has to hook their child up to a dialysis machine and watch them wheeled away into surgery to remove a vital organ that has stopped working. Pray for their comfort, their peace, and God’s wisdom. Mostly pray that Aiden’s heart and innocence stay pure and that he continues to light the way for all of us to see that God’s love truly shines from our exceptional children.

Dear Aiden,

It was such a blessing to meet you and your mommy at the park that day. Not only are you a super special little boy, but you are an exceptional little boy. My life is brighter just from seeing your shining face. The love for your mommy is in every action you take; from your smiles, to your hugs, to your joy, and even your flower gifts to her. As you approach your third birthday, I celebrate all the greatness in your life. The exceptional parents and grandparents, God gifted you with. The heart you have for play, and the excitement each day brings, despite your differences, that you blissfully don’t even understand. As you get mightier, I know there is a kidney just for you. It will happen. It will be your last surgery and last machine. I hope that for you, more than anything in the world. Then, you can play even longer on the slides and swings, just like you always wanted. Aiden, keep smiling for the world. It’s a happier place with you in it.

Love your friend,

Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.
_Hebrews 4:16

What would you do?

What would you do if someone you loved developed an autoimmune disease? A disease that attacks the insulin producing beta cells that live in the pancreas.

What would you do if they could die from this disease if not treated by insulin injections? Insulin injections that must be administered by needle six to seven times at day – minimum – to keep their blood glucose levels at a normal healthy range, their entire lifetime.

What would possibly be the root of this assailant on someone you love? This aggressor would be Type 1 diabetes. A debilitating disease. A disease of mystery and power.

This disease knows no bounds. It could attack you. It could attack me. Research has not proven why, or how. They know an autoimmune response is triggered. Maybe from an infection, maybe from an inherited gene, maybe even from not being breast-fed as a child. In addition, not everyone that has an autoimmune trigger develops diabetes. Some do. Some don’t.

The first person I ever knew with diabetes was my paternal grandfather. He died in 1975, I don’t remember him. I missed a chance to know him – he died too young. I never really knew anything about diabetes, despite my grandfather having had it. I was just a little kid. It didn’t affect me. I had no reason to find out why I didn’t grow up with my grandfather.

What did get my attention was another man who had Type 1 diabetes. His name was Uncle Bub. I would come to live with him and his sister during a separation from my second husband. It was a turbulent time of my life. Uncle Bub was my saving grace. He was my friend. Someone I would talk hours to. His health had deteriorated quickly with Type 1 diabetes.

In the previous years, He hadn’t taken care of himself and let his blood sugar levels get too high. He didn’t inject the life saving insulin. His body began failing. He had a stroke. He lost all feeling in his fingers. He developed heart disease. He lost his right leg, from above the knee down. He lost all his toes, except the big one on his left foot. He was near blind.

This six foot two inch tall man of such stature and pride, a leading manager for over twenty years with an oil company, was reduced to near helplessness in a wheelchair. His life stricken and battered by this autoimmune disease. He could no longer live by himself, nor take care of himself. This independent man had to rely on others. It was harsh and painful. The disease, left uncontrolled, wrought havoc on his fifty year old body.

When I came to live with him, I helped him as many ways as I could. His strength weakened, lay coiled inside. He was a fighter. Most men would have given up, faced with the nightmare, but he fought and he lived. I would load Uncle Bub’s insulin shots every morning for him. He could administer the shot himself, just not prepare it. His fingers, without nerves, could not navigate such a delicate task, nor he could his damaged eyes see the fill lines.

I would take him as many places as he wanted to go. Often to the computer electronics store, or Walmart, or to out to eat. I would throw his wheelchair in the car and off we’d go. Nothing could stop us. He never let his disability keep him down. In fact, he got the biggest kick out stuff – like when I searched, and searched for his matching sock. Um, yeah, he only needed ONE sock. Boy, did that give him belly laughs for the longest time.

We even got to take our girls to Orlando together (his granddaughter, my daughter). Airplane, car rental, two hotel rooms and two little girls ages ten and eight trek across the country. I wheeled him all over Universal Studios. He wore a cowboy hat everywhere. No matter who we met, they called him Big Tex. To make the trip truly memorable, a hurricane hit Florida. We rode it out in the hotel. Hurricane Charlie. He smiled and entertained the hotel guests all day during the storm. It took their mind off it. His smile lit the whole dreary room.

He was the first man I knew and loved with Type 1 diabetes. My heart ached over his disease. He died a year and half after our trip. Heart disease and complications of Type 1 diabetes. What a shame. What a loss. He had so much life in him. He was such a dear confidant to me. He wasn’t even MY uncle. He was first husband’s uncle. His love for me shows , what an incredible man he really was.

The second man to enter my life with Type 1 diabetes? My boyfriend Jason. He developed the autoimmune disease while serving in the Marines, diagnosed February 1997. He was 22 years old, in the pinnacle of his youth. What a shocking blow. But what could he do? This was his fate. There is no cure. He dealt with it, like the soldier he was. Twelve years now, he has tested his blood sugar, by puncturing his finger, taking a drop of blood, and feeding it into a meter.

If it’s high, he takes insulin to bring it down. He has to pierce his skin with another needle, using pressure, to inject a shot. It’s as painful as it sounds. If it’s low, he has to take in sugar to bring it up. If he goes too low, he could go into a coma. If he goes too high, he has to take another insulin shot. It is a dangerous game. It is a guessing game. Most days, there is no winner – just the constant ups and downs.

The highs and lows don’t come without a price. The highs, are edgy causing light headiness, thirst and nausea. The lows, are blackened vision, spots – an inability to stay alert. Imagine those things happening to you. Imagine how that would affect your moods and your nature – while working, while parenting, while sleeping, while exercising. It’s no cake walk. Welcome to their life.

In my quest to understand, I decided to check my blood sugar. I pricked my finger. I fed the meter. Mine was normal, of course. I did it ONCE. He does it, six to nine times a DAY.

One time during lunch, my blood sugar dropped. I was sick, anxious, and nervous. My leg twitched constantly. I wanted to rotate my head several times around, thinking that MIGHT make me feel better. After I ate, it took thirty minutes to kick in and stop the madness inside my skull. ONE TIME. Jason does this on a daily basis.

My hearts grieves over this disease. Not because one, but TWO men I love dearly have their lives directly affected by it. One’s life was cut short. One’s life could very well be cut short, if they don’t find a cure soon. I can try to put myself in their shoes, but I will NEVER truly know the pain of living with Type 1 Diabetes. I only know the pain of watching a loved one, bear the burden of Type 1 Diabetes. I pray for a cure. I long for a cure. I have hope for a cure.

October 24, 2009 – I will walk for a cure. I will walk next to the man I love with his beautiful children. I will walk in honor of Uncle Bub’s spunk, that encouraged me during a very low stretch in my life. I will fight for Jason. I will fight for the millions affected. I will fight to see him healed and free. I have to believe…we’ll win this fight.

What would I do? I would do anything.

If you’d like to join me in this cause -please do!- I would consider it a privilege. Even as little as $5.00 could bring them closer to solving this mystery. From what I understand, they are very close.

If financially this is impossible for you, then all I ask is that you say a prayer for those enduring Type 1 Diabetes. Pray for their strength, pray for their journey, and pray for their families – who love them and ache to see their strain. Lift them up.

Pray. Hope. Believe.

Diabetes – Walk for a Cure- Click here to visit my page and make a donation.
*Link updated for October 2010 walk for a cure.*

***edit and update September 17, 2010**
This year’s Diabetes walk is Oct. 23, 2010. We have “registered” for donations. This time I am asking family and friends attending our wedding October 10, 2010 to gift us the greatest marriage gift we could accept. A hope for a cure. The link above has been updated to this year’s walk donations. We deeply thank-you and send you love and blessings in return.