Inspiration Every Day

My Dearest Ariana,

A couple of months ago, my youngest child, your “sissy” Riley, was doing her daily workout, which consists of basketball ball-handling drills, planks, abdominal crunches, and pushups. You watched intently as she did one hundred pushups.

13903438_10210529552621727_1939070129582154073_nA couple of minutes later, as I was straightening up on the kitchen, I looked out into the living room, and my eyes filled with tears. You were trying,unsuccessfully, to do a push-up. “Look at me Daddy. I’m doing a push-up!”

The tears came because I remember your rough start to life. When you were three weeks old, seizures and strokes nearly took you from us. Upon your release from Riley Hospital, we were given a grim prognosis: you would never walk or talk, would be bedridden. Well, Ariana, you have proven, time and time again, that they were wrong. You walk. You talk, quite a lot! However, your life is not without its challenges. You wear a brace on your left leg to keep your knee from hyperextending. Sometimes, you wear a brace on your left hand to keep your hand from balling up into a fist. You have limited use of your left arm, and are rarely able to straighten it out on your own.

Sometimes my tears are tears of amazement – amazement at how far, you – our very own little miracle of a girl – have come. Other times, like when I am watching you try to do something you may never be able to do, the tears are a product of my frustration and sadness with the hand you were dealt. You were an infant and didn’t ask for or do anything to cause what happened to you. But you’ll have to deal with these challenges for the rest of your life.

It’s when the tears of frustration are welling up in my eyes that I have to take a step back and put things in perspective. Some days this is fairly easy. Other days, like when I’m not feeling particularly emotionally fit, I really struggle. What I often forget is that you have never known anything different. The everyday struggle is your normal. Over the years, this struggle has turned you into a strong and resilient little girl,one who doesn’t know the meaning of the word “can’t.”12512242_10209294789233414_2654815702701170037_n

Recently, we took a day trip to western Indiana to visit Shades State Park, known for its sandstone rock formations, steep ravines, and waterfalls. We decided to hike the two most rugged trails in the park, knowing that we would have to carry you at least part of the way. As we made our way up and down the deep ravines, carved out over thousands of years by streams, you never once needed us to carry you. We would suggest the easiest way around an obstacle, and you, in typical Ariana fashion, would take the more difficult route, insisting, when we would ask if you needed help, “No, I’m fine.”

13428548_10209987840919273_907817750283575178_nIt is in these moments that I beam with pride, and know that, despite what you have been through, you will be fine. Your stubborn, thick-headed attitude toward life has and will continue to serve you well as you grow into a young woman. You told me a couple of weeks ago, “Daddy, I want to be a doctor when I grow up.” “That’s awesome!” I said. We bumped fists and smiled at each other. And I truly believe that if you want to become a doctor, you will. You will run bull-headed through any obstacles that stand in your way, and will be successful at whatever you choose to do.

Here we are. September 30th. It’s your 5th birthday. Happy Birthday! You’ve been a part of our lives for 5 years, and I can’t imagine life without you. You serve as an inspiration to your family, friends, and to those who are blessed to meet you. You are Inspiration Every Day!

Love,

Daddy

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Determined

The bravest girl I know, Ariana Valerie Combs, entered the world on September 30, 2011, and by all appearances was a normal baby for the first three weeks of her life. On October 23, 2011, she went from being a normal baby to one whose life would be forever changed.

311887_2540433956826_1636852671_nShe began having seizures and was taken to Riley Hospital for Children in Indianapolis. We would later learn that she had suffered at least fifteen strokes. It was touch and go for a while, but we finally got to take our granddaughter home two days before Thanksgiving, but not before we were offered a list of long-term care facilities for when we got tired of caring for a baby that would, according to the doctors, never walk or talk.

As we celebrated the holidays and welcomed 2012, it became increasingly apparent that Ariana was not a normal baby. She wasn’t hitting age-related milestones, but she was always a joy to be around. In February 2012, Ariana’s mother, our oldest daughter, unable to cope with the rules of our household and the demands of a new baby, decided to leave home. Wisely, she decided to leave Ariana in the care of my wife and I.

Life in our house continued, with everyone pitching in to care for Ariana. Eventually, she went from not moving on her own to pulling herself along with her right arm, her left leg bent awkwardly behind her. Finally, she started walking with the assistance of a hard plastic brace on her left foot and ankle that keeps her knee from hyper-extending.

10426609_10204339552435591_4653242546329853901_nNot knowing if she would ever talk, we worked to teach her sign language. She hit her second birthday, a joyful, gregarious toddler who didn’t need words to express what she was feeling. The light in her eyes and the smile on her face spoke volumes.

Her walking improved, and eventually she stopped pulling herself across the floor with her right arm altogether. Her third Christmas, in 2013, was a joyous occasion. Though reluctant to open her gifts, she eventually got into the spirit, playing with her new toys, and oohing and ahhing over her new clothes. She even helped others with their gifts, and seemed content in the joy that others’ gifts were bringing them.

2014 brought renewed hope for all of us that were involved in her care and upbringing, including my parents, who watch her two days a week while my wife works. She was progressing well in her multiple therapies, including occupational, developmental, physical, and speech therapies. She bonded with her therapists, and they bonded with her. They challenged her on a daily basis, and most of the time she responded positively, working hard. She had her bad days. Don’t we all?

Sadly, I don’t remember the exact date, but sometime around Memorial Day 2014, it happened. It was as if someone flipped a switch in her little brain. Ariana uttered her first word, which, according to me, was Papaw. That’s my story, and I’m sticking to it. We were overjoyed. A little girl that was neither supposed to walk nor talk was now doing both! Now, there are times when we can’t get her to be quiet!

10418253_10204519337050094_3840918047854906823_nIn July, we rented a cabin on Black Lake in northern Michigan. As always, it was a relaxing vacation. It was also a week of firsts for Ariana: she played in the sand beside the lake, she was pulled in an inner tube behind a boat (safely in the arms of her Aunt Riley), and she caught her first fish. To see her revel in life’s simple pleasures warms my heart.

Because she is such an inspiration, I like to share her story with both acquaintances and strangers. I used to tell people that she was a stroke victim. One day, as I was telling her story to someone, saying that she was a stroke victim, it hit me. She has never viewed herself as a victim. Why should I? I immediately corrected myself, and said that she was a stroke survivor.

She has moved far beyond the feeble, disabled, bed-ridden child we were led to believe we would be taking home from Riley Hospital in 2011. She has her challenges, but she hits them head-on like the true conqueror she is. When she sets her mind to do something, she never gives up until she’s accomplished her goal. This trait will serve her well throughout her life.

10502059_10204550372900567_3588267187939955653_nShe has become, for the most part, a typical toddler. If you ask her to do something and she doesn’t want to do it, she’ll let you know she doesn’t want to do it. However, she is polite in her defiance. Just yesterday, I said, “Ariana, it’s time to put your books away.” She looked at me, smiled, and said, “No thank you, Papaw,” and then sauntered out of the room, in her mind putting the issue to rest. To say she is a little bit independent and headstrong is like saying habanero peppers are a little bit hot and spicy.

That defiance, which is normal for a child her age, is balanced with a sweet personality. She genuinely cares about how others feel, and is not afraid to give a friend or a stranger a hug or a simple “Hi.” In short, she is developing characteristics that will allow her to continue to be successful throughout her life.

If I’ve had a bad day, I can be reasonably sure that when I walk through the door at home, Ariana will look up, see me, and run to me, yelling, “My Papaw!” No matter what kind of day I’ve had, this always puts a smile on my face and warms my heart. You can’t put a price on that!

976175_10203108000202151_1878770938_oI would like to dedicate this to everyone who has had a hand in helping us raise Ariana, especially my wife Carla, my daughters Savanna and Riley, my parents, my in-laws, family and friends, all of Ariana’s therapists and doctors, and the wonderful people at our church – South Meridian Church of God. We can’t do it without you.

Most of all, I dedicate this to my wonderful, inspirational granddaughter. Ariana, as you turn three today, please know that you care about others and are cared about, that you value others and are valued, and most importantly, that you love others and are loved.

 

The Bravest Girl I Know

338095_2445138454498_3411664_oAriana Valerie Combs came into the world on September 30, 2011, born to our oldest daughter , then 17 years old and still in high school.  It wasn’t the ideal situation.  I didn’t want to be a grandfather at 43, and my wife didn’t want to be a grandmother at 37.  However, it wasn’t as though our daughter was the first high school girl to get pregnant either.  As unhappy as we were with our daughter for getting pregnant at such a young age, we fell in love with Ariana the moment she was born.  She had beautiful blue eyes, a devious smile, and a bottom lip that would quiver whenever she was about to cry.

319671_2447192985860_1284876174_nThings went nicely for the first three weeks.  My wife and I were able to enjoy spending time with Ariana, but we really didn’t have to change diapers or get up for middle-of-the-night feedings.  We made sure that our oldest daughter, the baby’s mother, shouldered the bulk of those responsibilities.  After all, Ariana was her baby.  My wife and I had our last baby in December of 2000.

On Friday, October 21, my wife, along with our two oldest daughters and Ariana, went to visit my wife’s parents 2 hours south of where we live.  Our youngest stayed home with me because she had two basketball games on Saturday.

On Sunday, I received a call from my wife.  She said that she thought the baby had a seizure, and that she was going to take her to the hospital.  A short while later, my wife called me to let me know that Ariana was indeed having seizures, and that she was being transported via ambulance to Riley Hospital for Children in Indianapolis.

My youngest and I hopped into the van so that we could go to Indianapolis to meet them, and to bring our middle daughter home for school the next day.  I knew my wife and oldest daughter would stay at the hospital with Ariana.

The next day and a half was touch and go.  Ariana continued to have seizures, despite a heavy dose of Phenobarbital.  An MRI was ordered, and delayed for a day and a half for unknown reason.  When it was finally completed, my wife called me, in tears, with devastating news.  Ariana had suffered at least 15 strokes, caused by, as we would come to find out, viral encephalitis.

326275_2540433956826_1636852671_oThe next several days were filled with tears and uncertainty, hope and disappointment.  Ariana would have periods of time without seizures, raising our hopes.  Then she would seize again, shattering our misconceptions that she was improving.

Riley Hospital for Children is a teaching hospital.  During rounds, I heard the attending physician say to her students that she had never seen brain damage as severe as what Ariana had suffered.  Needless to say, this hurt my wife and I to our very core.  The attending physician went on to tell us that we would not be taking a “normal” child home.  There were times when we weren’t sure we would be taking a child home at all.  It was all very heartbreaking.  It was especially hard for me to watch my wife through all of this.  I think that she really bonded with Ariana during her hospitalization.

About a week and a half into her stay, Ariana began to improve.  The Phenobarbital started working to control the seizures.  Eventually, Ariana strung together several days that were seizure-free.  She was awake and alert, and finally the feeding and breathing tubes were removed.  Then came the words we had longed to hear: Ariana would get to come home.  She was discharged two day before Thanksgiving, providing us with something to truly be thankful for during the holidays.

For the next several months, things returned to “normal” at our house.  We were unaware of the extent of Ariana’s disability because babies her age typically don’t do much but eat, sleep, and poop.  She had no problems doing any of those things.  She seemed alert and happy, though not particularly active.

In February 2012, our oldest daughter, unable to cope with the rules of our house, announced to us that she was moving out.  Thankfully, she chose to leave Ariana with us.  She signed a temporary custody form.  Within a short time, my wife and I met with an attorney to file for permanent custody.  To her credit, our oldest daughter did not contest us having custody of Ariana.

202432_4311313187700_1837240207_oAs Ariana got older, we noticed that she was not hitting normal milestones like crawling and talking.  It became evident that she had very limited use of her left side as a result of the strokes she suffered as an infant.  We got her assessed and linked with a local service provider, and she began receiving occupational therapy, developmental therapy, and physical therapy.  In 2013, Ariana also started speech therapy.  She works hard in all of her therapy sessions.  Between therapy sessions, my wife works diligently with her, as do my daughters who are still living at home, now 12 and 14.  Her rehabilitation has truly become a family affair.

Ariana is two now.  As I reflect back on the last two years, I am amazed at my wife, and at my two daughters who still live at home.  My wife should be sainted immediately upon entry into Heaven.  She  is unfailingly patient with Ariana.  My two youngest daughters, Ariana’s aunts, are always willing to help change Ariana’s diaper, feed her, or get her dressed.  They have been a real help to us in raising Ariana.  Some might be inclined to think that having custody or Ariana takes our attention away from our children who are still living at home.  Instead, having Ariana has united us, given us a common purpose, and drawn us closer as a family.

Most of all, I am amazed at Ariana.  As I’ve watched her grow, I’ve come to realize that she’s a fighter.  She pushes through therapy that is sometimes painful and frustrating.  If she’s determined to do something, she will find a way to do it.  If I tell her “no,” she’ll look at me and smile, showing all her teeth, and sometimes I give in.  She seems to know when someone needs a hug, a reassuring touch, or a kiss on the cheek.  And she’s not afraid to let you know if she needs a hug, a reassuring touch, or a kiss on the cheek.

1025363_10201452406378744_29630859_oShe knows she’s different from other kids, and it doesn’t matter to her.  She still has only limited use of her left side, but she moves through life any way she can.  If she’s having a good day physically, she’ll spend a lot of time on her feet.  If not, she’ll still get where she needs to go by scooting on her butt with her right leg out front and her left leg sticking awkwardly backwards, using her right arm to pull herself along.

Ariana isn’t talking yet because, according to her speech therapist, she is using the pathway in her brain normally reserved for speech to accomplish something else.  She is, however, learning sign language so that she can communicate with us.  She does understand what we say to her, and she sometimes gets frustrated at her inability to speak.  But she pushes forward like she always does.

Ariana is the bravest girl I know because despite being dealt a pretty bad hand when she was three weeks old, she has never felt sorry for herself.  Maybe it’s because she has just never known any different, but I don’t think so.  I think she is an old soul, and that deep down, she pushes through her difficulties because she knows that she serves as an inspiration to others.

20130928_185644Ariana is the bravest girl I know because even when she has a bad day physically, her left arm and hand stiff from the effects of having multiple strokes, she almost always has a smile on her face, attempting to lift the spirits of those around her.

Ariana is the bravest girl I know because, unlike most people I know, she gives and receives love unconditionally.

Happy 2nd Birthday, Little Angel!  You make me proud every day, and you fill my heart with love!