A Bucket List? I need YOUR help!

So my mommy was talking to my daddy about this little girl named Avery. Maybe you have heard of her? From what I heard my mom say, this little girl named Avery was very sick like me....well, not exactly like me. I have Batten Disease and she had Spinal Muscular Atrophy. But either way, we are both sick little girls that are just precious (my mommy's words). Mommy read Avery's website and cried through the whole thing! She didn't share all of it with me but she did tell me that Avery's mommy and daddy wanted to do lots of things with Avery before she died, just like my mommy and daddy wants to do with me. Mommy said that she always knew in her mind about things she wanted to do with me but now she thinks its important to write it all down so we don't forget anything. Maybe we can do them all and maybe we can't. But mommy said we will try and that's the most important thing!
So, if you can help me think of things to put on my "Bucket List", or if you can help me complete them, please do! And I love hearing all the comments that mommy reads to me each night so keep 'em coming....they brighten our day. And did you know that people in Canada, Germany, and Romania are looking at my page too? That's so cool---please keep sharing and passing my website to everyone you know! And don't forget to help with my Bucket List by adding comments and suggestions in the comment section below my list---thanks world! :)

Bucket List
Lay in the grass
Sit on a blanket in the backyard with my mommy
Go swimming in an outside pool
Slide down a slide at the playground 
Swing on the swingset
Go on a family vacation
Have my nails painted
Feel sand between my toes
Go on a boat ride
Feel the ocean waves
Go swimming in a heated pool
Eat a cupcake
Have a 1st birthday party
Get a family portrait
Ride on my daddy's motorcycle
Sleep in my own crib
Spend a day at the yardsales
Take a nap in my playpen outside
Make a footprint plaque for my bedroom
Stop needing my g-tube
Put gel in my hair
Wear earring (okay so they were stickers, but it counts)
Get my hair cut at the salon
Have my picture made with Santa Claus
Jump on a bouncer
Ride on a golf cart
Carve a pumpkin
Go trick or treating
First day of school
Go on a hay ride
Go to a petting zoo
Color Easter Eggs
Go dancing
Go to Disney World
Meet another baby like me
Get a button for my PEG tube
Get a better chair so I can go around the house with mommy
Get a manicure
Play dress up
Play with other kids
Have a tea party
Put my hands in PlayDoh
Be in a parade
Be on television
Ride on a bicycle
Jump on a trampoline
Sit up on my own
Drink from a sippy cup
Sit in a high chair
Go to college
Kiss a boy
Get my heart broken
Break hearts
Ride the school bus
Help mommy pack my school lunch
Bake cookies
Decorate the Christmas tree
Watch reality TV with my mommy
Watch Ohio State lose football games with daddy (oops, sorry daddy--I meant WIN)
Go to college
Ride a tricycle
Jump
Play in the sprinklers
Crawl
Pull myself up by using the coffee table
Hug my dog Peanut
Help mommy fold towels
Have daddy teach me how to change brake pads on my car
Get a car
Get my drivers license
Go to prom
Get married
Have a boy ask my daddy to marry me
Have a baby of my own
Get a little brother or sister
Have a painting done of me
Get popcorn at the movies
Drink sweet tea with my daddy
Have morning coffee with my G-Ma
Go fishing with my papoo
Ride in papaw's cop car
Look at pictures of my mommy and daddy when they were little
Laugh at pictures of my mommy and daddy when they were little
Play cards with my Uncle Dave and Uncle Tarvis
Learn to cook with my Aunt Tracy
Eat the best food in the world (Mamaw Dana's!)
Tear open Christmas presents
Spend the weekend at my Aunt K's
Hold up my head up on my own
Swing on the front porch
Help Mommy plan my bridal shower
Have a baby shower for myself
Be a bridesmaid
Ride a horse

Play in the snow

Dance in the rain






 

A Simple Question

A simple question, asked of my husband, without any real concern in my voice, would ultimately begin our journey into the world of epilepsy. I had noticed our daughter, Sophia Grace, then two months old, having odd jerking movements in the form of a head twitch and an arm lift. I asked my husband, Jacob, if he had noticed Sophia making odd movements. Sophia is my first and only child and Jacob has two sons so when he said something along the lines of “you are driving me crazy with all your concerns”, I let it go. About two weeks later, my husband noticed similar movements, and called me at work. I received a voice mail from my husband on my work line, telling me that he believed Sophia was having seizures and he was taking her to the pediatrician. I remember telling my supervisor that I had to leave work immediately and when he asked why, I began crying when I said that Sophia may be having seizures. And thinking back on it now, I was scared but I had no idea where this would take me. I was scared about my child having seizures of course, a diagnosis I did not have much knowledge of, but really I thought, okay, so Sophia will need medication. No big deal, right? Everybody takes medication.

My dream of becoming a mother began long before I even understood the concept of motherhood. And even when I became an adult and thought that I understood the concept of motherhood, of course as other mothers can attest, I had no idea. But one thing I knew for sure, I wanted to be a mother more than I have ever wanted anything in my life. My husband, having two children from a previous relationship, was not all that thrilled about having another child. He remembered the sleepless nights, expensive diapers and formula, and the general worry that comes along when a little one depends on you. I thought of fat baby cheeks, walks with a stroller, and hearing a child call me “mommy”. My husband and I never tried to prevent having a child and at one point, I did become pregnant only to have a miscarriage about 5 weeks into the pregnancy. We went to the obstetricians office for the first ultrasound and the technician said nonchalantly, “there is no heartbeat”. She said it like it was no big deal but to me, it was the end of my world. I cried for days on end; I just wanted my baby back.

After years of no pregnancy prevention, and believing truly that pregnancy was not in the cards for me, a coworker suggested a fertility medication called Clomid. I told Jacob that I wanted to try for a baby, really try, I was surprised that he was agreeable. He was nervous about using a fertility drug but I went to the doctor, received further information, and started the medication. The first month, nothing. The second month, success! I was so scared to take that pregnancy test but Jacob said “either you are or you aren’t” and so I took the test. I was so happy and so scared at the same time.

We had our first appointment with a new obstetrician, and we requested to have an ultrasound earlier than normal because of our previous miscarriage. That first ultrasound was terrifying for me; I gripped Jacob’s hand so hard but then I heard the most beautiful sound: Sophia’s heartbeat. Of course, she wasn’t yet Sophia back then, but just the thought of having two hearts beating inside me, was enough to make me smile.

My pregnancy and delivery were completely normal with no complications. I was induced three days past my due date and Sophia Grace Crawford was born on November 17, 2011, weighing 7 pounds and 9 ounces, and 19 inches long. For two wonderful months, she was nothing but normal. And then the seizures began.

Sophia has been admitted to the hospital seven times total, with no less than three days each time. The first hospital stays were optimistic, with us leaving thinking that everything was under control. Each hospital stay brought more reality into our lives. We have had issues with doctors, one telling us that “babies move in funny ways” and “there were no seizures found on the EEG”, and our favorite, “Sophia is fine and will be discharged”. We have had issues with nurses, from listening to Katy Perry playing at the nurse’s station with about ten nurses standing around laughing while our baby girl was seizing uncontrollably in the next room, to a nurse saying that she didn’t mind “making babies cry” when giving Sophia her first IV. We have had issues with hospitals, having to share a room with another family with a child recovering from meningitis, to having bed accommodations for one so my husband and I had to sleep in shifts. We have tried numerous medications, each one costing a little more each time, only to be told that the medication is not working and to go and get yet another one filled at the pharmacy. We have learned to give intramuscular injections which our daughter had to endure each day for a month. Imagine making your child scream because of the pain you are causing, on top of everything else she is going through! We have willingly given medication that is known to cause vision problems, most likely eliminating periphereal vision, because the pros outweighed the cons. We have given medication that the hospital cannot even carry because it is not approved for use. Sophia has been poked so many times by nurses that want to “just try” to get an IV to work even though we have expressed that she is a hard stick and only the specicalized teams have been able to do this; it’s almost like an honor badge to the nurses to be the one to get the IV to work.

The pain that came with the knowledge that my child will never walk or talk was unspeakable. Now, sitting in the PICU with my child on oxygen and the doctors speaking of introducing a medication induced coma, the walking and talking thing doesn’t seem to matter much anymore. Amazing how God can put things into perspective with each passing minute. If she didn’t need me so much right now, I think I would comjpletely shut down. There are times when I go sit in the bathroom floor, lights off, just to cry in my own little dark world. I think that I cannot possibly go on. But Sophia needs me and I need her. She is a little me, lying in the bed just patiently waiting for the doctors to finally get it right. And I’m sitting in a chair next to her waiting on the same exact thing. It’s just that I am not quite as patient as she is.

So we learned that the phrase “one day at a time” really means just that. I don’t look ahead to the future, I look to getting through each day. I don’t google medications and dignoses and diseases anymore. I don’t ask about the statistics because I refuse to put limitations on my daughter or to allow anyone else to tell me what she can or can’t do. I still want my daughter to be President, a doctor, a teacher. But in the meantime, I am happy to just see her eyes open and for her to breathe on her own. It really is the small things.

Meet the Enemy

"So", God said, "you want to know the enemy?"
On August 8, 2012, at approximately 2:30pm, Jacob, Sophia, and I were in Florence, Kentucky, eating dinner. We had taken Sophia to Liberty, Ohio for a routine MRI to check her folate acid levels. The only notable part of the MRI was that Sophia woke up from the anesthesia angry! It took me several tries to get her to calm down and just let me hold her. Sophia has had numerous MRIs and had anesthesia many times as well. This was the first time we had seen her like this. Other than that small part of that visit, everything was completely normal.....until my phone rang.
I stepped out of the restaurant because the caller on the other end of the line was none other than Dr. Hallinan, Sophia's neurologist. While we think very highly of Dr. Hallinan, we had never received a personal phone call from her. Dr. Hallinan started the conversation by asking how Sophia was doing. My focus? Sophia has a movement disorder and lately, it had been worse than ever. Lots of twitching, head shaking, scratching and hitting her face. Could we get some medicine for that, I asked. Dr. Hallinan said she would look into prescribing something. Great! I thought. Finally, some relief for us all. But then Dr. Hallinan asked how long until we would be home, because she wanted to discuss the test results. I told her to go ahead, I was ready to hear them. Or so I thought.
Dr. Hallinan said that the results are not good. Sophia has Neuronal Ceroid Lipofuscinoses, more commonly known as Batten Disease. My first question...Is it Fatal? The Answer...Yes.
And with that, our world changed forever.

Take My Hand

Take my hand sweet girl, and Mommy will walk with you. We will walk through the forest, through the fields and farms, through the meadows of beautiful blue flowers. Take my hand and Mommy will guide you through this world, through the struggles, through the ups and the downs. Mommy will show you where to walk, which steps to avoid, and how to get there safely. Take my hand baby, and Mommy will take you on a journey through Mommy's childhood, how Mommy met Daddy, and how you came to be. Mommy will tell you embarassing stories of silly things that she did as a kid, so you can laugh at her, but secretly amaze that your mom was a kid like you once. Mommy will tell you silly stories about Daddy too, stories that Mommy has heard from your Granny Teresa. Mommy and you can laugh at Daddy together. And when he walks in the room, we will smile at each other and Daddy will ask what we are smiling about. But we won't tell him, because it's our secret to have. Take my hand darling, and Mommy will tell you how Mommy thought Daddy was the cutest thing ever when she first met him. How Daddy tried to pretend he didn't like Mommy too but Mommy knew better. Mommy will tell you how quickly Mommy and Daddy fell in love, and how Daddy proposed to Mommy. Mommy will bring out her wedding pictures and you will see how much Mommy and Daddy have changed! Mommy will remind you that most of the change is a direct result of you! Take my hand princess, and Mommy will show you scrapbooks she made for your brothers. Scrapbooks full of pictures and tokens of their childhood, and of course, all the times they said funny things or got in trouble. Each time you see your brothers, you will know that they were once little bitty like you and not the "cool" kids that they are now. Take my hand sunshine, and Mommy will tell you about the day you were born and all the events leading up to it. How Mommy prayed for you for as long as she can remember, how Mommy was so scared every second that she would lose you, right up until the moment you were placed in her arms. Mommy can still recall how you moved, your smell, your fingers and toes. Your first bath and how scary it was because you were a slippery little thing! How Mommy cried when she wasn't able to breastfeed anymore and had to put you on a bottle. How Mommy would stare at your beautiful face for hours and hours, never bored a single bit, because you were and are the most beautiful thing Mommy had ever seen. Take my hand sweet Sophia Grace, and Mommy will tell about your Mamaw Smith and Aunt Linda that are waiting in heaven for you. They went on ahead to make a most perfect place for your arrival. They are watching over us, even now, and one day, God will decide that you are ready to enter the Kingdom of Heaven, that He needs you more than Mommy does. Mommy hopes and prays that the day for that, is far, far away because Mommy can't imagine you being needed anywhere but right here in her arms. Mommy loves you more than anything in the world, more than life itself. And for now, just take my hand Bug, and Mommy will take this journey with you, right by your side, and Mommy will not leave you for a second, not for a moment, and we will enjoy our time together, and pretend that our time together, will never end, but will last forever and ever.

All the Time

I woke up this morning, thinking of this blog. Thinking how I have neglected my posts, and in turn, neglected myself. I started this blog as an outlet for myself, a way to vent, and express my feelings. I started this blog rather selfishly I guess. But I'm glad that I started it. I'm glad I have let others in to my life, into my daughter's life. I'm glad I can help her raise awareness for this despicable disease, BATTEN DISEASE.
Sophia was two months old when she had her first seizure. I had a perfect pregnancy, a perfect delivery. I had all the testing that is offered, genetic included. I had no idea such a disease existed. I had no idea where my life was headed. Had I known, I wouldn't be here now. That may make some people angry, to know that I would have made the choice to not have my daughter had I known she would face this hell. But those people, those people that would judge a decision like that, have never felt pain. And I know this so completely, because no one would watch a beloved child suffer the way I have watched my daughter. So judge me if you wish. I am okay with that.
For those of you that do not know, Sophia was a miracle baby. A miracle in that I had ALWAYS wanted to have a child and struggled for years to actually conceive. And the hopes and dreams I had for her! My daughter would be smart and independent, she would be confident and polished, she would have manners and morals. My daughter could conquer the world, establish world peace, end hunger, and save all the little animals from abuse (the last is my own personal wish that I just kinda pushed on her :) ).
I have had to let go of my dreams and hopes for what my daughter will accomplish. Well, not really let go, but rather change and adapt. I have learned what is really important: my daughter taught me that. When I was pregnant, I spent hours and hours considering the most perfect bedding for her crib, I compared colors for the walls, and pleaded with my husband to pay way more than we could afford so that she would have all the most "perfect" things in her room. And when we finished the nursery, it did look great! Just what I had always wanted. I remember sitting in her room, in the mandatory glider that just seems to scream nursery, and I remember thinking how it would be when she actually arrived. I folded and refolded her tiny clothes, wondering if she would like her room, and how we would be continually changing it as she grew older. So what Sophia taught me was that this stuff, this material stuff, means nothing. Its so not important. If I could relay anything back to a new mother, it would be that while it seems so important, it is nothing. Trust me. I couldn't care less what color blanket she is resting on, if her clothes have a butterfly or a dog on them, if her room is painted just the right shade of pink. I saw a mother recently with her child, probably about one year old. The child was in the shopping cart and had leaned over, like kids do, to lick on the handle of the cart. The mother yelled at him, and flicked his cheek with her fingers. I could have smacked the mother right across the face. That sounds unreasonable I am sure, but I thought two things: 1) you have no idea what kind of gift you have sitting in front of you, and 2) it really doesnt matter if he licks the heck out of the handle of the cart. I mean, really, now that I am here in this life, if Sophia could lean her head over and lick the handle of shopping cart, I'd laugh and praise her and think how wonderful! Shoot, I'd help support her head and make it more comfortable for her so she could lick away and enjoy herself!
But now I've gotten off track. So my hopes and dreams and how they have changed. Now, I want Sophia to open her eyes. I want Sophia to breathe on her own. I want Sophia to babble every once in a while. I would like to see Sophia smile and hear her laugh. Two days ago, Sophia laughed out loud while the nurse was listening to her breathe. Sophia hasn't laughed out loud but maybe three times in her life. And while the laugh wasn't responsive to anything, and could very well have been a seizure, WOW, what a laugh! Other than hearing her breathe, it is the most beautiful sound in the world. The nurse commented that Sophia thought she was funny but even after I explained the rarity of what Sophia had just done, the nurse could not grasp just how special it was, and just how priveleged she was to have heard this gorgous laugh. And how could the nurse understand? She's never been here, never walked this walk. For other people, other parents, a laugh is just a that: a laugh. For us, and other parents of special kids, a laugh is a moment, a memory, food for the soul. That laugh, that little 3 second laugh, will keep me going. It gives me strength to continue. I can hear it in my sleep. I can recall it any time that I want to. And oh how I want to, I so want to, all the time.

Reflection

I watch your body strain and contort in ways that make my body ache as your brain sends uncontrollable impulses through little body. I lean close to your chubby cheeks and whisper in your ear that I am here now. I tell you how much you mean to me and how you have forever changed me. I wonder if the sound of my voice soothes you just as every breath you have ever taken has brought new meaning to my life. Your body is a prison in which you are trapped without control and means of communicating. I reflect on my own complaints and realize I am selfish in my rants as I have the ability to make a change and you do not. Although you depend upon me for your every need, you never whimper in pain nor do ask for anything but love. I tell myself that I need to be strong for you when in reality I am weak and your are my strength.

I AM TIRED

When people say they are tired, they are speaking of needing a little rest or sleep. For our household rest and sleep are only a fraction of why we are tired.

I am tired of watching my daughter live an existence of hell on earth. A life where she is absent of sight and the ability to move about.

I am tired of watching my daughter moan and jerk in every manner possible while nobody can give me an answer as to how to stop it.

I am tired having to sit by my daughter's side every waking minute to ensure she is ok because of this illness.

I am tired of not knowing how to console my daughter when I know she is hurting.

I am tired of worrying if I will even be able to supply my family with a home to keep them safe.

I am tired of dreading going to my own home because I know the stress that awaits me there.

I am tired of watching my marriage slowly slip away from me as I have no time to dedicate to it.

I am tired of not finding happiness in  anything any longer.

I am tired of watching my wife cry every day because of the stress and concern she struggles with.

I am tired of bullshit bureacrats who make me jump through a million hoops to get assistance when we can no longer do it on our own, but continue to try.

I am tired of waiting hours and hours for medical care that always comes up short in the care of my daughter.

I am tired of hearing about how you will are willing to help but never do.

I am tired of hearing I am so sorry to hear that your daughter is having a bad day.

I am tired of hearing that you are praying for me.

I am tired of saying I am OK when I am not.

I am tired of smiling when I am unhappy.

I am tired of crushing medicines, feeding tubes, doctor visits, sleepless nights and stressful days.

I am tired of Batten Disease!

I AM SO, SO TIRED!!!