Two Years In

May 18th will be etched in my memory for as long as I live. Today marks the two year anniversary of Sarah's diagnosis. Two years ago our lives changed forever.

I can remember the kids picking me up from the hospital that Saturday afternoon. It was about 1:30. I had just had my tubal reversal surgery and I was looking forward to going home as I was in a bit of pain. I remember the kids coming into my room and Sarah saying that she could not see anything. I remember the frightened sound of her voice and my gut told me that something was very, very wrong.

Before her diagnosis.

I guess, looking back on it, I knew days earlier that something was very wrong with her. I knew it in my gut, but I had not yet learned the importance of listening to myself, so I just ignored the feeling. Sarah had stayed home from school Monday - Thursday of that week with a terrible headache. She was sleeping 20 hours a day towards the end of the week. She could not move her eyes. I took her to see her pediatrician on Wednesday of that week. She thought maybe it was allergies as Bob suffers from then. We were sent to get  an x-ray of her sinus cavity to see if there was any sign of her being an allergy sufferer. The x-ray came back clean. I was sent home and told that if her symptoms got any worse to go to the ER. Thursday morning began with Sarah throwing up. This coupled with her headache I decided to take her the the ER and she had a CAT scan to see what could possibly be causing such a prolonged headache and now vomiting. The CAT scan showed nothing, so with a family history of migraines, I was sent home with a prescription for migraines. Friday morning was amazing. I remember the sun shining brightly. It was a beautiful Ohio May morning. Miraculously, Sarah woke up headache free and wanted to go to school. I sent her and told her that her Nana (my mom) would be picking her up because I would be in the hospital having my surgery. (The kids knew about my surgery because I felt it was important for them to know what I was doing.) Sarah was grateful to be going back to school. Little did we know that that would be her last day.

The day she was released from the hospital the first time.

On Saturday morning, May 18th, Sarah was sitting at her sibling's soccer game when all of the sudden she lost her vision completely. Everything in her world went dark. She was scared and panicked. Of course, she would be. Bob and the kids came and got me from the hospital and then we proceeded to go Akron Children's Hospital where we spent the rest of the afternoon & evening in the ER.

I only can remember snapshots of that day. I can remember Sarah sitting up on the hospital bed trying to find me and calling out my name, scared, because she could not see me. I remember her reaching for me. I remember that glazed look in her eyes that told me that she saw nothing. I remember the parade of medical students and doctors who came into her room because Sarah was such a unique patient. I remember her pupils being dilated to the size of her irises and that excited all of the doctors because they could see so clearly the inflammation of Sarah's optic nerves. I remember getting my first lesson in telling the medical community 'no' when they asked again and again if just  one last person could look into Sarah's eyes and finally Bob and I telling them no. That this 8 year old little girl did not need any more unnecessary poking and prodding.

I remember the IV's, the spinal tap, and the MRI. I remember her taking everything like a champ. Never fussing or crying, but just silently doing what was asked of her. This stoic attitude would become what she was known for. I remember hearing the words Multiple Sclerosis floated around. I remember stepping outside the hospital to call my mom who by this point had left work to take care of our other 3 children. I remember telling her that they thought it was MS. I remember sobbing in Bob's arms at all Sarah was facing. I remember Bob sobbing in my arms at all she was facing as well. We put on a brave face in front of her though and tried to remain calm among the flurry of nurses and doctors rushing in around us. I knew that something was very, very wrong when Sarah was pushed to the front of the line for everything...her spinal tap, mri,etc...This feeling was confirmed in the eyes of the doctors and nurses as they would talk to Bob and I. One nurse broke down and cried. She told us that she was so sorry that this was our diagnosis. I remember the diagnosing doctor coming out of the MRI while Bob was still in there with Sarah and telling me how sorry he was to have to tell me this, but that there were lesions on Sarah's brain. That she had MS and that he wished desperately that he had other news to tell me. He told me to stay away from the internet and the stories that it held. I remember knowing nothing and feeling like I was in a fog. I couldn't understand why the doctors and nurses were so sad. My mom had/has MS and she was/is doing great. It was only until later (after having searched the internet) that I discovered that pediatric MS patients usually fare worse than adults because they live with the disease longer and the cumulative effect of the disease ends up making them worse off in the end.

Home after the second time she went into the hospital.
Sarah is now on steroids as evidenced by her puffy
cheeks. 

Sarah was admitted to the hospital that night. We were in for the first of countless visits. 5 days. She received the first of the IV steroids that she would be on almost continuously for the next year and a half. Her little body ballooned to an almost unrecognizable size. Her vision came back, but not 100%. The doctor told us that because she would be on a steroid taper, and would have a suppressed immune system, that it was best she not go back to school. She ended the 4th quarter 3 weeks early. Because of her outstanding work thus far, she received straight A's on her last report card. The school she attended was wonderful. Her second grade teachers were amazing.

With some encouragement we decided to enter a Pedal to the Point bike race which supports the National MS Society. Bob and I - with the amazing support of our community - raised several thousand dollars and we biked 30 miles in support of the cause. Sarah's best friend raised over a thousand dollars (if my memory serves me right). She had a lemonade stand day after day. I will never forget what she did for our family. What she did for Sarah. I will always hold a special place in my heart for Leah because of the love she showed Sarah. She never treated Sarah any differently. Sarah was still just Sarah. That, too, was such a gift because all my girl wanted to feel was normal. When she was with Leah, she felt that way.

We thought that everything would be okay after that. That life would settle down and that we would learn to manage this disease. Little did we know what we had coming our way...

Sarah has now had her diagnosis changed to Neuromyelitis Optica. She has been through more than I would care to share. Through hospitalizations, procedures, jerk doctors, great doctors, and relapse after relapse she has been a trooper. That little girl, who has been through so much in her short 10 years, is a model of grace and dignity. She is courageous beyond belief. She could probably give an IV better than some of the nurses she has had!  In short, Sarah is amazingly resilient. She is beautiful beyond belief - both inside and out.

We have been through countless doctors as most don't want to take on a disease as serious as Sarah's. Bob and I have fought for her care in ways we never thought we would have had to. We have had some of the crappiest stuff said to us about Sarah's future and we have experienced some pretty unethical things too. But,  on the flip side, we have experienced some amazing nurses who time after time took amazing care of her.  We found Dr. Locastro who was a life saver and a sanity saver time and time again. I will always be grateful to the care he gave Sarah and for the battles he fought on our behalf.


Sarah did end up losing her vision, but I know that we fought as hard we could to keep it. As a family, we have wrapped our heads around Sarah's vision loss. I would be lying if I said that I do not sometimes worry about her future. NMO is an ugly disease. It is an unpredictable disease. It is a disease that kills 1/3 of its patients. I try to remember that Sarah's life (nor are any of ours) are not guaranteed. That at any moment she could wake up and not be able to walk. That she could lose control of her bladder and never regain function of it. That she could lose her cognitive ability. I don't know how I would be able to survive if any of those things happened. The good news is that, right now, I don't have to face any of those issues. Maybe, I never will.








Today we will spend the day reflecting and celebrating. We will celebrate all that we have made it through. We will celebrate all of the good times we have had despite all that we have been through. We celebrate the fact that although this disease changed us all irrevocably it will never take away our H-O-P-E. There will always be hope. Hope for a cure for NMO. Hope for a way to restore Sarah's myelin so that she might someday see again. Hope for an amazing life for Sarah to lead.  Hope for the future....

 

Not feeling well...again...but with a snuggle buddy. 

Sarah has always had the most beautiful eyes. I found it a cruel joke for a long time that God would take the vision from these beautiful eyes. 

I leave you with this poem/story that was sent to me at the beginning of our journey. The reflection below is so true to our life:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Photo courtesy of: wikipedia.org