Monday, September 28, 2009

Life Changing Days

“Well I have good news and bad news. The bad news is that your daughter has cerebral palsy, the good news is that we found out early and can start therapy right away” said the neurologist. This might sound like the beginning to an interesting book. However sadly this isn’t a book, it is the beginning of my new life. Some time ago I had noticed a few things about my daughter, Rya-Jo. I mentioned these few things to her doctor, such as not using her left side as much as she uses her right side. Dr. BrokenLeg, (yes this is in fact her real name) decides that we should get an MRI of Rya’s brain. Deciding on whether or not to get the MRI was the first obstacle we had to face with a great deal more to come.
On the day of the MRI we drove to the Children’s Hospital in mostly silence. We knew there were great risks for the sedation but we also knew it was best to find out if there was a problem as soon as we could. The part that seemed to last forever was the crying from getting the IV. Never in my life have I ever wanted to hear my baby cry like that and never do I want to hear it again. We had to wrap her little arms with a sheet so she couldn’t push the nurse away. The screaming pierced my heart, and I couldn’t help but lets a few tears roll down my face. She continued to cry when I was carrying her to the MRI room, soon after they injected the anesthesia. Her crying began to fade and soon it was merely whimpers coming from her mouth. The nurse took my daughter from me and placed her on a giant table where they began prepping her for the MRI. I couldn’t watch much more and walked away after asking how long it would be.
Around 30 minutes later we walked back into the MRI room where Rya was sleeping peacefully on a hospital bed. She slept for almost 2 hours soundly and I never wanted to leave her side. When she woke up she was obviously confused and starving. Soon after she woke and had something to eat we were sent home. I had an appointment with the doctor on that Thursday to discuss the results of the MRI. Later that evening, however, the phone rang, it was Rya’s doctor. She explained that she had received the results and my heart skipped a beat. I couldn’t help but tell myself that she was going to be just fine since doctors never call with bad news.
I couldn’t be more mistaken.
She told me that Rya had a brain infarction, dead brain tissue. I was so confused and was not sure what questions to ask or how to even figure out how to tell Jon. I listened to the doctor and found myself asking all sorts of questions without realizing I was even talking. I hung up the phone and explained to Jon online what the doctor had told me. Immediately we started to look up as much information as we could to find out exactly what we might be dealing with. We had an appointment with a neurologist on the 14th and then a pediatric neurology specialist on October 20th.
Our suspicions were confirmed at the neurology appointment. Our amazing little miracle had a disease called cerebral palsy. My heart sunk thinking of a few people I had come across in my life that had this disease. I only knew of people in wheelchairs and people who couldn’t speak. As the neurologist went on she explained that there are people out there totally functional and have no idea they have CP. All I could do is hope that this would end up being the story for us. The neurologist was very happy to see that we had already had Rya in Physical Therapy, working on Occupational Therapy and had an Opthamology appointment already set up for her. As happy as she was, she had just thrown a blow to my heart that I am still not sure I will ever recover from.
I have tried and tried and tried to keep my spirits up because we are doing so much to help my little girl. She is showing great signs everyday that she is rewiring her brain, but with 38% of her brain missing one can never know. I find myself sick at nights, thinking of the same old, “Why me” issue. Our little family has dealt with so many life changing events, why another one? Why one that would affect my daughter? Was there any way to take her disease away and give it to me? Would I ever hear the words “Mom”, “I love you”, “I have a date”, “I am getting married” or “You are going to be a grandma”. I do realize that the possibilities of these words crossing her lips are there. But I also realize that there is a possibility they won’t either.
For now, all I can do is work, hard hard work. Make sure to give my daughter all the opportunities in life to have a normal childhood. And if it doesn’t work and she is wheelchair bound and can’t speak, I will know that her father and I have done all we can. All we can do now is just love her as much as we have always loved her and will always love her.
So please for us, place Rya in your prayers or thoughts once in a while. Pray that she will be strong, that she will be healthy, but most of all, that she will be happy.

6 loving comments, who likes comments?:

Renee' P said...

Oh Nicole, I am so sorry for you and Rya-Jo!
I just want to say this:
She was given to you for a reason :) She is your little miracle and you are strong and can do this :)
I will definately keep her and you in my thoughts and prayers. Just hang in there. She's so young right now and you're doing a great job at trying to find all the tools neccessary to help your precious angel!

Love you, and hang in there!


Megan said...

Love you guys!

Maegan said...

Well said Renee.
And no matter what else does or does not happen, Rya-Jo will always know her mommy and daddy love her very much. And truly that is what matters the most in anyone's life. All we want is to feel loved and feel accepted for who we are no matter what. And through you guys, she is going to feel that love. And hopefully everyone around her can feel more of that love too- the love God has for all of us.

Lisa said...


What a roller coast, you guys have been through! My heart goes out to you and Jon as you just wrap your head around this crazy news! I love you and hope I can help you out in any way possible! Hang in there. Call me if you need anything!! (I'm gonna try to call you this week too)

Monica said...

I will keep you guys in my prayers!

Torrie said...

Nicole, your post brought tears to my eyes. You have a beautiful daughter that Heavenly Father knew you would love and take care of. She is a blessing for you and your sweet family. I applaud you for being on top of things and so in tune with her development. She's lucky to have you for a mother.