The Reason Behind the Blog

This is the initial post from what I hope will turn into a blog of encouragement for all parents who unexpectedly find themselves caring for a special needs child. It will be honest and sometimes sad. But mostly I hope it will be a resource for parents so they know they are not going through this crazy and hard journey alone; that the journey is worth it.  And most of all, I hope Lanie's story can inspire the world.

My name is Lindsey Hughey and I am married to my best friend, Travis.  We were high school sweethearts, dated for nine years and finally decided to get married.  We adopted Ty dog along the way and were very happy.  Almost two years into our marriage we decided we weren't getting any younger and something was just missing.  We wanted to expand our family.  So we started trying to have a baby, and IMMEDIATELY got pregnant.  When I say immediately, I mean I didn't know you could get pregnant that fast.  Everyone called me Fertile Myrtel, and my husband got a lot of pats on the back and "that a boys."  We felt like it was truly meant to be.  Aside from a little morning sickness and pain from a cyst early on, the pregnancy went great.  I had no complications and the days passed by smoothly.  I could not have asked for a better pregnancy.  Around eighteen weeks, we found out we were having a girl.  It took a minute to wrap our heads around this because for some reason, we both thought she would be a boy.  But it didn't take long, we started fixing up the nursery and buying diapers and baby clothes for a precious baby girl.  We were both so excited.  We went back and forth over names.  We are from the south, but my husband didn't want something that sounded "too southern" like Annabelle.  So we finally settled on Alaina.  However, I wanted a little southern flare so we agreed to call her Lanie.

My water broke at 10:00 p.m. (I had just checked the time right before it broke) on June 16, 2015, and Ms. Lanie made her appearance at 12:25 a.m. Wednesday, June 17, 2015, one week before her due date.  That's right, she was born in less than two and a half hours.  She was ready to be here.  She was admitted to the NICU as a precaution because she had some congenital anomalies that to-date still have not been traced to any genetic issues and seem to not be an problem for her.  She was released home to us after 4 days, and we began to try to figure out the new parent thing. Unfortunately, this is where our fairy tale ends and real life takes over.

THE EVENT THAT CHANGES YOUR LIFE FOREVER

On July 4, 2015 in the late afternoon, at just over two weeks old, Lanie was diagnosed with spinal meningitis and admitted to Children's Hospital of Alabama.  I have to admit, it was a diagnosis that I did not even understand. I'd heard of meningitis, but never really known what it was.  Once she was diagnosed, all the ER doctor could really tell us was that "she is about to get really sick." I felt like she was already really sick, so I could not understand what he meant at the time. My husband and I were merely on lookers as the doctors and medical personnel worked.  Looking back it almost feels like we were just watching it on TV, not really living it out.  We watched as she had seizures, as she was stuck and pumped with one antibiotic after the other, with multiple IVs running.  We watched as a breathing tube was placed down her throat, and as they took her away to the PICU.  I vaguely remember a Chaplin coming to pray with us.  I can't really describe my feelings that day.  I don't really remember them. Maybe numb would be the best word. Your mind just kind of freezes and you start walking through life in a state of shock on auto pilot.  I do remember that one room in the ER was orange; that our ER doctor leaned against a wall when he gave us the news; that another one of her doctors had a limp.  I remember carrying around her pink and white blanket.  It was hard.  Harder than anything we had ever done.

Once she was stable and moved into the PICU, we settled into the room that night by her.  She was hooked up to a monitor by tubes and wires. She didn't even look like our baby.  And at that moment you know that you have to put all your trust and faith into doctors and nurses you've never met, and get down on your knees and pray that God doesn't take your sweet child. Our first PICU nurse had crazy curly hair, and she watched over our baby like a momma hawk that night.  At times other doctors came in and observed her.  But overall the rest of that night was quite.  I remember standing in her hospital room in Birmingham, Alabama that night and watching the fireworks show (as it was still the 4th of July to everyone else).   

The next morning, the group of doctors rounded on Lanie, and the lead doctor told us that Lanie had made it through the night which was a good sign.  She thought Lanie would live. (This was the best news we'd ever heard.)  But she followed that up with, it is very possible she will have brain damage.  As those doctors left our room, I remember turning to my husband and screaming (I imagine I looked like someone off a Lifetime movie).  He stood there and held me up so that I would not hit the floor, and we both cried.  I'm sure everyone on our floor that morning heard me, and I'm sure they thought we'd lost a child. And if I am being honest, in that one moment in time, it felt like we had. 

We stayed in Children's Hospital for almost a month.  She was treated by the best doctors and nurses around.  We are so grateful for Lanie's ER doctors who acted so quickly and all the doctors and nurses that took care of her.  Children's Hospital is truly one of the most amazing places I've ever been.

Lanie in fact did suffer brain damage.  And as a result, her future is very unknown.  When the neurology team came by to see us, they said she had suffered significant brain damage. The word significant still stands out in my mind just as it does here bolded and underlined on this blog, even 3 years later.  The neurologist said worse case scenario, she will never walk and never talk (I remember thinking, isn't that everyone's worst case scenario).  Also, we don't know if it was the damage from the meningitis or the fact that she had a breathing tube and was heavily sedated for a week, but she lost her ability to suck and required placement of a g-tube for feeding.  We left the hospital in August with hope that with prayer and the amazing remapping powers of the brain (especially in children), Lanie would end up with a great life regardless of worse case scenario.  

Since coming home from the hospital, everyday has been a test of faith.  A test that I admittedly don't pass everyday.  If there is no true manual on how to be a new parent, then there certainly is no manual on how to handle a child with neurological issues.  She was very fussy, which we were told is common with her type issues.  We have had to become nurses and advocates.  A lot of times it seems like when you make process, there is a major set back like an illness or growth spurt.  You have to learn about programs you didn't even know existed, like Early Intervention.  At times we are therapist, trying to help her learn things that should come naturally to a child. But you have all the normal things too like colic, ear infections, "I hate my car seat", acid reflux, formula issues, etc. (the list is endless.)

At three years old, she is globally developmentally delayed, still eats primarily by her g-tube, and has been diagnosed with Cerebral Palsy, Epilepsy, and Cortical Vision Impairment (CVI).  She uses a gait trainer, a wheel chair, and a speech device.  And she has braces for her hands and feet.  Her days are made up of attending an awesome special needs school and additional therapy once a week.  We have even recently added riding therapy once a week.

I know all of this is sad and most people's initial reaction is to feel sorry for families like ours because we didn't ask for this.  Lanie didn't ask for this.  But here is where the encouragement comes in, our sweet baby girl is PURE LOVE.  She has a smile that lights up the world.  She is the most verbal non-verbal person you will ever meet, and wants nothing more in this world than to talk (and I think she will).  She is trying to walk some, with the help of her gait trainer.  And because she has a speech device, we know she is intelligent.  This is all leading up to what I hope this blog is really going to end up being about, making lemonade out of a life that sometimes gives you a lot of lemons at one time.  Everyday of her life is hard, but she doesn't know that.  Her love and willpower is an inspiration that needs to be shared with the world.