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!


23 thoughts on “The Bravest Girl I Know

  1. I never knew this about you or your family Marc. What an incredible story!! I know you are a better person for what you have been through with your grand daughter. Blessings to you, Ariana, and the rest of your family. I hope that she will continue to recover and grow with the love and warmth of your home…. Ryan

  2. Thanks Ryan! She has truly been a blessing to us. She makes every day better.

  3. I just clicked through from Twitter, and all I can say is wow. What a beautiful tribute to your granddaughter, and what a brave little girl. Thank you for sharing her story.

  4. LOLITA Abbott says:

    This is lovely tribute to a beautiful, brave little girl and her family. We will continue to pray for all of you. Love you all. Aunt Lita

  5. Happy Birthday Ariana! This post is fantastic. You’re right, Ariana is a brave and wonderful little girl and she is blessed also to have such a great family. Everything happens for a reason, and Ariana is right where she should be. I really liked the part where you say that your family has become closer. Your younger daughters sound like very mature, caring girls that know what’s important. I think that’s a testament to yours and your wife’s parenting. You know I think this, but I have to say it, you’re a wonderful person, Mark. I hope your older daughter is well these days, and that you all have a fantastic weekend and upcoming holiday season. Please give us more updates on Ariana soon! -Kat

    • Thank you so much Kat! I really love what you said about Ariana being right where she should be. I had a hard time accepting what happened to her at first, but have come to realize that Ariana, just the way she is, is a blessing and an inspiration to us and to everyone who meets her. Happy holidays to you and your family as well. And, thanks for taking the time to read this! It was probably the most emotional I have gotten while writing. The pictur of her laying in the hospital tethered to tubes and wires still chokes me up every time I see it.

  6. wonderful,inspirational story…….she sounds to me like a little gift from heaven,little ariana…thank you for telling your story,and have a wonderful holiday season….i’d say “god bless you”,but seems he already has! 🙂

  7. sgray12 says:

    Mark, I knew Ariana was quite ill when she was little, but I have not kept in contact with you and had no idea all that has happened the last two years. She appears to be quite a blessing to you and your family. Thank you for sharing this touching story.

  8. I’m a Riley kid too. ^_^ it makes Me so happy to see another Riley kid getting stronger and improving each day. she is a beautiful little girl and the love she has for you is so obvious on her face. Happy Birthing day, little one! I wish for you all of your dreams to come true. ^_^

  9. Trusa says:

    God knew what he was doing when He placed this precious girl in the bosom of your family, Mark. She is truly a blessing to everyone who knows her.

  10. Susan Blake says:

    What a wonderful story Mark. Ariana is surely an angel from heaven and you have truly been blessed! Nice story my friend!

  11. Hi Mark – I remember you telling me about your granddaughter, but having just read this today, a few weeks before my first grandchild is born, was especially touching. I’ve been wondering what the bond between grandparent and grandchild would feel like. Is it the same as a parent feels for a child, or the love an aunt/uncle feels for a nephew or niece? I suppose I will know in a couple of weeks. Oh, and Ariana sounds like a complete delight. I know she must bring such joy to your lives.

    • For my wife and I, the love we feel for Ariana is more like the love we feel for our children. I suppose that’s because Ariana has lived with us since birth. Most of that time, we have been the caregivers as her mother doesn’t live here, and doesn’t spend much time with her. I also think the bond is so much stronger because we nearly lost her, so every day we have is precious. She is a joy to be around, and has learned to walk. She doesn’t really say a lot yet, though she has “no” down pretty well! Thanks for the kind words! Best of luck with the birth of your first grandchild!

  12. Annette says:

    Truly touching and inspiring! Ariana, who is delightful, BTW– is fortunate to have the two of you for grandparents.

  13. Kelly Stewart says:

    This is a truly touching story and I appreciate that you have shared it with others. I believe that all things happen for a reason. For everything that happens in life people choose to view their circumstances either in a positive or negative manner. The struggles are the everyday steps we take in life and I only hope that others take the time to reflect and understand the blessings we get in life. It is nice to know that you have your eyes open! I admire your whole family! Thank you for sharing this beautiful story!

  14. […] 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. […]

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  16. […] People who I’m friends with on Facebook know that I have the world’s cutest granddaughter, Ariana, and good kids, because I post lots of pictures and stories. And they know that I’m a big fan of […]

  17. […] 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 […]

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