Smiling with Cara

My past posts were from a place of pain.  I wrote to have a release and for therapy.  This post comes with a smile and a proud heart.  I want to introduce my daughter, Cara and share all the things she CAN do.  It’s about time that I tell the joyful part of her story and our journey with her.

Cara CAN

Smile

Laugh

Grasp objects

Track with her eyes

Hold her head up during tummy time

Push up on her arms during tummy time

Tuck her chin during her “sit up” exercises

Squeal and make vowel sounds

Drink from a bottle

Kick her feet to show excitement

Make interesting musical sounds from her top and bottom

Wiggle and dance to music

Indicate to us when she wants to be picked up

Sleep through the night

Warm any heart with a smile

Bring out the best in someone with her eyes.

Cara is little Miss Personality.  She really lets us know when she is happy, sad, mad, annoyed, needs something, needs to rest and is hungry.  Definitely not shy about letting us know when she is mad or is hungry. She can say a paragraph with her eyes. Her happiest moments are when she is playing with Natalie. She has a very calm and gentle way about her (as long as she is not mad or hungry). She has a silly side that makes us laugh! We are a pretty silly family and she joins in with silly faces and funny sounds. This is also a family that loves dance and music, Cara shares that love and participates fully.  She enjoys a good waltz and fox trot with daddy, samba and rumba with mommy and laughs at Natalie’s booty shaking.  Nobody can booty shake like Natalie (we are still trying to decide if that is a good thing). Good jazz and a little swaying is the best medicine for those bad nights.  We have so much fun as a family!!  I don’t know what Cara will be able to do but I can tell you and celebrate what Cara can do. She is developing in her own way and on her own time.  We are so proud of her.

It’s been a week since Cara’s muscle and skin biopsy.  Results will be coming in over the next few weeks.  The months ahead will bring answers, more questions, a breath and map out a part of the future for Cara and our family.  They will also bring more accomplishments, laughter and memories. More “can dos”.

Our appointment with the neurometabolic doctors is this coming Tuesday, May 3rd.  I don’t know if they will have any results or more pieces to this puzzle.  We have our questions ready and hopefully will leave with some answers and a clearer picture. I will post an update soon after.

Please feel free to comment and add to the “can” list and/or share the joyful stories you have had with Cara.  We need more smiles and no tears from this post! Thank you.

Let’s smile with Cara!

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A Long Three Months

I was talking with a good friend of mine yesterday about how everything is going. I was telling her that it feels like I am a guest on Oprah.  The guest that would normally make me cry and then the show would end and I’d wipe my tears and go on with my day.  It is a very odd feeling being in the situation. It feels like I am in a movie. You read about these stories, see them on television, hear about them from a friend that has a friend.  I never even heard of these diseases until now.

We found out that Cara had a brain injury February 3rd and it feels as though it was years ago.  We have gone from a little developmentally delayed, to static brain injury and cerebral palsy, to seizures, to now a progressive rare disease all in 3 months. Dan and I spend a lot of time sighing and shaking our heads.  Most days I wonder how the both of us are able to keep ourselves together so well.  Dan has had a lot of pressure and stress at work, we still aren’t totally settled in our new house, Natalie is…well, two, and Cara has appointments after appointments. I have no idea how we do it but I am guessing most of it has to do with the fact that we have no other choice and that we have each other. This has been the longest three months of my life.

I still cry when I think about Cara’s future and how unclear it is.  The tears come when I have still moments.  In the car, right before I fall asleep, when the house is quiet… Mostly my eyes just fill with tears.  I fight as hard as I can to stop it there because I am afraid that if I let a few fall I won’t stop.  I can stop myself by taking a deep breath and digging deep for strength.  My girls give me an endless well of strength.  You never know how strong and weak you are until you have children.

A song that I sing often to Cara is “Three Little Birds” by Bob Marley.  I change the lyrics a bit.  I add Cara’s name.  “Cara, don’t worry about a thing, ’cause every little thing is gonna be alright.”  You would think that this song would bring tears to my eyes but it dries them and makes me smile. I hope she listens to the song and lets the words into her heart.

Update:

From the lab results that they have done so far it looks like Cara has a mitochondrial issue. We have an appointment date with the neurometabolic team at OHSU for May 3rd.  Cara has been referred to an orthopedic surgeon for a muscle and skin biopsy.  We don’t have a date for that yet. Hopefully they wont need much of either. We are trying to relax and stay patient the best we can.  The diagnostic process will take some time and it is important that they get it right.