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