Delicately we move forward

During rush hour in Arlington, Texas, Tuesday night, a critical care ambulance moved Sue to a new hospital near downtown Dallas, and a new ICU bed. A place filled with experts on neurological aneurysms. Experts on cases like hers.
Even before we got to see her, we felt immense relief. We felt it was the right place. We felt the vast difference in everything medical related.

More assuring was the first doctor that came to consult. Letting us know that she was settled and they had a team of surgeons look at what she came in with. They were confident of the procedure they wanted to do, which was NOT open head surgery to clamp the aneurysm, but a coil procedure to fill it and support it. The coil required no opening of the head since they went through the groin area. The presentation of their recommendation was VASTLY different from XYZ hospital. Suddenly the coil, which the experts suggested (not offering a choice), made perfect sense. Why open her brain if it wasn’t the best option? We wouldn’t, of course. It was a win, win all around.

Again, great comfort, and blessing to be moved to this hospital and KNOW they were looking out for HER, and not for what procedure that hadn’t done in a while. Either procedure had been done at that hospital yesterday. It was common practice. If something were to go wrong, they would proceed to the second surgery option immediately and come get her husband’s authorization. Our prayers were answered, we were in good hands.

She was alert and could speak when woken up. In fact, she has been alert, talking, and moving from day one, which is very encouraging to us. She gave the doctors her medical history herself. She held our hand and said she loved us as many times as we held hers and told her the same thing. She passed all the tests from the neuro exam except her left side was weak and only moved when pushing on the pressure points. We considered that being part of the brain pressure from the aneurysm.

The proper medical term for her condition is subarachnoid hemorrhage.

    sub·arach·noid definition
    Function: adj
    1 : situated or occurring under the arachnoid membrane
    2 : of, relating to, or involving the subarachnoid space and the fluid within it

It’s referring to where her bleeding occurred. Basically, it’s something that was already there. A bubble if you will. What happened is this bubble, she has had all her life, suddenly split and started bleeding into her brain. I say all that, because she has been confused by others as having a stroke. She DID not have a stroke. She had an aneurysm and 40% don’t live through it, because normally they burst, not split. When it ruptures vs leaks, it is instant death.

Yesterday morning, they did the coil surgery. We are assured her recovery in ICU is approximately fourteen days. As you know, fourteen days is nothing. A walk in the park and knowing her, she will somehow, someway swing a day pass to the wedding. Either way, I am just happy she WILL recover. I have no doubt, something awful would have happened at XYZ hospital. I could feel it. I don’t feel that way at this hospital. The surgery procedure has a 92-95% success rate. Not to mention, it’s all being handled before the 72 hour window of time.

However, when the surgeon comes back, it’s not as simple as we hoped. They weren’t able to insert enough coils. They did get quite a few in. It will stop any re-bleed from happening – all good. The bad….another coil surgery in two weeks, plus a shunt to put in underneath the coils to help support that area; in other words two more weeks of delicate care, not recovery care like we hoped. The news that knocked me in the stomach was the fact that during the scans they discovered a clot in her brain about 24 hours old, occurring at XYZ hospital, it was too old to fix it. THIS was in fact a stroke, and THAT was the reason for her left side weakness.

I know I should be positive and blessed and praising all involved and I am. She is still with us. She is still able to move her right side (and at time of post her left leg). She will, with time and therapy, regain full function (after the second coil surgery and recovery). But it will be a long, hard road. I hate that for her.

She is missing those little grandbaby hugs, that she needs and they need. Missing those tight little embraces that only Grandma Sue can give. An embrace to find love, and reassurance. Can I just for one second grieve the loss of that, for them and for her, and for us, just for this little while? I know she is going to miss giving them and they will miss receiving them. Not for fourteen days, but for at least six weeks, and quite possible months.

The heartbeat of the wedding lays in a critical care bed. Her magic wedding fingertips restrained to keep from pulling tubes. The excitement and plans she made locked under a bandage, all hope of her recovery in time for her son’s big day – shattered. All I can do is pray the magic revives coming back to honor her. To spark new life for the hard work she has already done.

I hope I will find the strength to finish what we started and make her proud. But just for a minute, can I be sad? Can I miss that she won’t be there? Can I say this is one of the hardest things I have ever dealt with? The family has ever dealt with?

It’s not like either of us have many parents or grandparents. In fact between us, we have three. My mom, his mom, and step dad. That’s it.

No living grandparents and no fathers.

It’s hard for me to focus on anything wedding without thinking of her and hurting. I’m not sad for me. I’m sad for HER. I’m sad for Jason, but mostly I miss my friend. I miss our planning. I miss our shopping and designing. I would give anything to have her health back. In fact, we have all made up our Christmas wish lists for the next dozen seasons – her health – the only thing listed.

It is a long road ahead, but we will continue by her side supporting her until her full recovery. I will drive to Dallas EVERY day. I know the way and the garage well. Jason is staying some nights there. We have been fighting our own physical illness – fever and chills (stress?), it only lasts a few hours at night, but I guess the swallowed fear has to come out some way.

In a little more than a week we will adorn handsome men, and fairytale princesses with the flowers made by her loving hands. I am still blown away by the beauty and delicacy they behold. It reminds me of her. Beautiful. Soft. Strong.

Made by Sue for the wedding, two days before hemorrhage.

Wedding flower table vases sitting out in her dining room.

Thank-you for your continued prayers. Please know how much we appreciate them in this difficult time, we take day by day.

Blessed are the Merciful

….for they shall obtain mercy.
-Matthew 5:7

How appropriate that this was today’s verse in Greg Laurie’s devotion. It was exactly what I needed to read, because out of all the people I have ever met, there is none more deserving of mercy than Sue; Jason’s mom, my future mom-in-law.

His devotion states…….“Yet Jesus said, “Blessed are the merciful. . . . ” Mercy is something we do, not just something we feel. It means to help a person in need, to rescue the miserable. Mercy means a sense of pity, plus a desire to relieve the suffering. Simply saying, “I feel your pain” is not mercy. Mercy is meeting the need, not just feeling it. Real mercy is pity plus action.”

On Saturday Jason and I helped Sue clean up a house of man who died from her Church. She was preparing it for an estate sale, because the grown children of this man were to grieved to deal with the process. The mom had died several years earlier. It is a home filled with many “collectibles”. It took hard work to even attempt the organization, and after she had already worked on it for three days before, it looked pretty good when we left. Why did she go to all the trouble? Because of mercy and heart. No other reason. No benefit at all. She was being kind and helping someone in need. That is just the person she is. She reaches out in love and embraces others to show them love in action, in which she receives in return.

She is now due her mercy. It is in God’s hands, as she awaits surgery on her brain from a ruptured blood vessel that occurred yesterday morning. One of those unbelievable things that happen suddenly and quickly. We cannot fathom the reasons, or understand the whys.

She is by far the kindest, most loving, heart-centered, self-less human being I have ever met. She doesn’t miss an opportunity to hug.

Sue hugs Bridget.

She raised three of the most gentlest, sweet men on the planet.

Sue with her two youngest sons, Jason and Todd.

Every chance to gather the family to her, to cook, to play, to hug, to lovingly thrive in every moment, beaming with pride at her family. She is a beautiful soul inside and out.

Fourth of July 2010.

I don’t know what today holds. All I know is a very precious woman who I love and adore fights for her life and I pray with all my heart for mercy and the action of it in her healing and restoration. I am on my way to hold the hand of her son. A man who wouldn’t be who he is without her nurture. A man who has been at the hospital all night and day along with his brothers and step-dad.

I witnessed a miracle when a fellow blogger Spot’s husband was in a near fatal car crash. He went home from the hospital two weeks later. From the pictures of the car, that was incredible. I believe in miracles and we need one right now.

If you are a prayer warrior, would you pray this prayer today as Sue goes to surgery. It is from a my dear friend Sandy. She posted to my Facebook and I think it is an earnest request.

Dear Father in heaven, please be with Sue and all the family members right now. Guide the doctors hands and minds and decisions in what they have to do. Lord, you are the great healer and prayers are so powerful. Give peace, to… all the family members and loved ones. Thank you father for your guidance during this time. In your precious name….Amen!!!!!

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

Sunday Healthy Reflection

Sleep is a generous thief; he gives to vigor what he takes from time.

– Elizabeth, Queen of Romania

Is lack of sleep robbing you of your goals?

If you surveyed the millions of us who don’t get much sleep, chances are they’ll say that the #1 reason they don’t is “lack of time.” In other words, people have too much to do to sleep. Late hours and frantic mornings are the rule. Who has time for more sleep? What this tired group doesn’t realize is that a sleep debt is probably keeping them from acting and thinking at full strength, making even the easiest tasks harder to do. And take longer. Believe it or not, you can probably get more done in your day by getting more sleep. The mental and physical pick-up more than make up for that extra hour or two in bed.

Brought to you by SPARKPEOPLE


Oh boy, does this strike a chord with me or what? I can’t remember when I decided going to bed at midnight and waking up at six am was a good idea, and totally enough sleep. I think it was somewhere around November 2007, when my step dad, so generously gave me a laptop as an early Christmas gift.

Yeah, I think that was it. Suddenly, the world of no cable, no internet from the previous seven months, was greatly widened. The beckoning beam of the computer screen sucked me in, I haven’t been able to shut it off since.

That’s my excuse anyway, “It’s a gift. What? Am I not supposed to use it? Phsss.”

Once the obsession newness wore off, I had met Jason by then. My new time killer was him. With work, kids, and living apart – we squeeze in time when we can. That means driving home 11-12 at night after watching TV and catching up on Survivor, Flash Forward, and Grey’s Anatomy.

If that wasn’t enough, THEN, I got an iPhone. The newness obsession was mind boggling. Please don’t ask Jason about it. It is embarrassing how much I love my iPhone, I think he is a little jealous.

Despite all that, if I am too look at my health, I have to admit. I could use more sleep. I could turn off the Look! Something shiny! call of the computers and get some more shut-eye. It is easier said than done.

I don’t have a problem sleeping either. That is not it. I sleep very soundly. I go to sleep instantly. You’re jealous right? Pssst. Melatonin. Works wonders, alleviates stress. It’s been a lifesaver for me – I hate laying awake at night – now I never do. Enlyten has dissolvable strips, works instantly. Instantly. Heaven. Simply Heaven.

I guess what it boils down to, I need to slow down for my health. I don’t feel lacking but, possibly, I could perform better. This reflection resonates in my life. I hope it did yours too.

*I pre-blogged this Saturday, so I could sleep in this morning AND it was time change night. Cha-ching! Extra, extra sleep. I feel like I could jump from rooftop to rooftop singing and I haven’t even have coffee yet. Yahoo!*