We Are Walking in Honor of Briella. Please Help Us Meet Our Goal.

Friday, September 19, 2014

Do you know what today means to us?

Last week we met with a new set of doctors at the children's hospital in the Rehab clinic. I figured this was going to be a big appointment so I asked my husband to take off work to come with me. You see, last July we were told that Briella had Cerebral Palsy. It was just mentioned in conversation like it was no big deal. No information just "yes but it's mild." It wasn't an official diagnosis, just a comment from a NP.  Her physical therapist said she didn't see it, and through out the last year that same NP had wavering opinions as to if she did or didn't have it. I feared that today's visit would turn into a talk about "CP."
The first doctor spent about fifteen minutes pumping us up, telling us how great out kiddo is doing. "She doesn't look like the child I would expect to come in to this visit, who started their life at 624 grams fitting in a hand." That always makes me smile. Brian & I sat there nodding, beaming with big grins from hearing how well Briella is doing from someone who had only reviewed her file and not seen her before. He said she had great range of motion in the feet, which is her most troublesome area. We talked about our concerns, then he left to go get the two additional doctors who were scheduled for the visit. While he was gone I looked at Brian, feeling embarrassed that I had him take work off and embarressed that I had doubted how awsome my big girl would do, and said "well this appointment is going pretty good!" He agreed and asked if we should bring up CP concerns. I'm not even sure what I answered. Probably just an I don't know. The doctors came back in. 
Pretty quickly after introductions the 2nd doctor asked if we had heard any labels or diagnosis given yet. We said we had heard some people think cp, others say she's fine. He asked if we were ready to have this talk. I knew that since Brian with me it was definitely the time. He said Briella has classic Spastic Diplegic Cerebral Palsy. 

Wait...I thought she was doing amazing?! I thought we were getting out of this talk!? 
The doctors response? She IS amazing. 

(For my French family-La paralysie cérébrale)

I teared up a tad, but was so afraid that Briella would look at me and know that it stung a little. I do not want her to know anything but strength as that's what she's shown us. The doctor then revealed that he also had CP. I was amazed. He gave us personal, great advice coming from a child who lived it. I am thankful we found this doctor! He said Briella will most likely wear braces forever as she walks SO well in them, and has many issues when not wearing them. Specifically her muscles are so tight when she's not in them she walks on her toes and her knees are pretty hyperextended, to the point where just looking at it hurts me. 

With all this said, remember my last post? Briella is such a typical toddler. She enjoys life and is not in pain. She is here thriving! CP is caused by a brain injury, which she sustained at birth from lack of oxygen. It does NOT get worse with time. Our beautiful miracle of not any less of a miracle. That's what I'm afraid people will think. She is smart. She follows directions & is such a joy. 

I'm done worrying about labels and diagnosis, Briella has shown me in the last month that they mean nothing. She's talking & walking. She's a love-to-cuddle toddler who has a ton of energy and loves to challenge herself. There is not anything in this world that she "can't" do. (Besides date until she's 25.) 

We will continue working with Briella's occupational, physical & speech therapists to help her. 

Today is World CP day. The day where we bring attention to Cerebral Palsy. I want you to know is CP doesn't define Briella. Yes she will have challenges from it, but challenges make us stronger. There are 17 million people in the world with CP. Briella is sure to be one that was sent here to make positive difference in this world. What a perfect day for me to share with you and break the stereotypes of CP. I hope when you look at Briella you see the joy she brings to our lives everyday & how much fun she has learning and playing. We are wearing green today proudly in support of our daughter. I remember when I was laying in a hospital bed trying my hardest to stay pregnant and a neonatologist came in to talk to me about being a special needs parent. She asked if I was ready for this and if it's something we wanted to do. I never imagined how awsome our life would turn out, how I would be blessed with another amazing daughter who lights up our every moment. 

 Did you know that the US Government made it a law to not allow children with cerebral palsy to have a transplant?! Because they deem it to be a intellectual disability?! Not that we ever foresee a transplant, but this mama will make her voice heard. 

 I only ask of you to please choose your words wisely. When you say "retarded" that hurts my heart. It shows ignorance.  Please look at the pictures below and realize that this happy smiling face can hear you speak, even if your not speaking to her, she listens.

I'm not sure what else to say in this post, just please come away with that Briella is healthy, happy, loved, perfect & amazing.
I do not like the word disabled. Actually, she is quite ABLED. And she has made our lives complete.  

Thank you for all the prayers you have shown our family over the last two years. Prayers work!!!

            Briella at Bikers for Babies

  Briella's primary nurse in the Nicu, Sara

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