Hello Team Lilly,
This note is going to be a little chaotic as life has been such recently. As I write this I am listening to songs by Jason Mraz. I find comfort in his words. Little known tidbit, Lilly and I's song is " I won't give up" by Jason Mraz.
I don't usually mention anything except things pertaining to Lilly but this Momma needs your support and prayers as well. It has been nearly 3 1/2 weeks and I have been off work unpaid on medical leave. Sometime in the last few months I have developed some unexpected health issues. Some may be triggered by stressful things weighing on my mind but there is also something more concerning going on. I am seeing several specialists to try and figure out what is going on. I have had several trips to the ER because I have been too dizzy to function, I have passed out randomly, my blood pressure plummets suddenly. As a result of some of the passing out episodes I have injured myself. Sprained my right shoulder and collarbone. I have some soft tissue tears but they will heal on their own as long as I limit picking up Lilly. Easier said than done, that is for sure. Anyway, if you could please keep me in your prayers, I would be appreciative. I don't know when I will return to work which saddens me. I love my job and the people I work with. I am hoping this month but my doctors will not commit on a date yet. As you probably assumed, tensions are high for us right now. Balancing life as we knew it and suddenly throwing this into the mix has left us out of sync. Enough about me though! Just keep me in your thoughts.
Lilly started her second year of preschool last Friday. Her teacher Marykay said she loves it. She is very slowly gravitating towards group interaction. Every day when they first arrive they sit in the singing circle on the rug; last year Lilly never had interest in that so she would go play with the special toys her teacher had just for her. This year, she seems to have some interest in then singing circle! She stands near the circle while the kids sing their morning song & ABC's and sways side to side. That is a gesture that is well known to our family, that is her way of showing she is happy.
Our goals this year are for Lilly to learn and make a connection with the following words again whether they be verbal or sign language: Mommy, Daddy, Jake, Up, Down, Help, More, All Done, Papaw, No and Yes. I know that seems like a lot but 2 years ago Lilly could say all of those words and knew what they meant. She would sing songs and say 2-3 word sentences. Part of her debilitation, the seizures - you never know if and when the damage or death will happen. The seizure in May 2012 stole everything Lilly knew and loved away from her. My heart shattered. It left her in an infancy state with dementia. She stopped talking, playing, laughing...she just looked at you with a blank stare and you wonder if she knows who you are. It isn't the same bright eyed look and big smile she used to have. It has taken two years for her to on occasion say "Mommy". The one word I long to hear. As a parent you seek joy when your children call for you and when they seek comfort in you. Put yourself in my shoes, your child is crying uncontrollably, can't speak, can't sign - you have no idea what is causing her sadness/discomfort and her not knowing you. For hours you rock her, sing to her, walk in circles...remind her that you are her Mommy and Our God would help get us through this. She is not alone, not ever. Over and over you do this. Hours, Days go by. Repeat. I know our journey will be long and we will fight this battle alongside Lilly until our very last breath but people need to know her story. They need to know that behind this confused, nonverbal little girl that there is a little girl who loved everything, everyone unconditionally. We will do everything we can to give Lilly her life back. Her love for life. Our Lilly.
Her brother, Jacob who is 2 1/2 years old absolutely loves his sister Lilly. He knows that she is special and takes extra good care of her. Always running to her when she cries to give her the binky she lost. He has seen her have a couple of seizures and that has been tough on him. He has this way with Lilly, this connection that can not be explained. He tries to comfort her after her seizures, rubs her head and back and whispers, "Its okay Lilly I here. Love you, You go night night." It is bittersweet.
Last year, we had our first Love4Lilly Benefit. It was a hit. We are going to try and do an online auction this year in the fall. Time and resources just haven't permitted us to organize a benefit this year. In addition to helping Lilly, we have reached out to local families who have children with similar health conditions as Lilly and would like to donate a portion of our auction funds to them as well. We have been blessed in more ways than one and want to pay it forward. If you know of anyone who would like to donate an item for auction or a gift card for drawings, please let me know. You can reach out to me if you would like to donate items for auction.
I will keep you posted on the auction! I am hoping its a big hit!!
Tonight I am listening to "3 Things" by Jason Mraz as I write this note. I have this song on repeat. You should listen to it if you don't already know the song.
"The first thing I do is I cry my eyes out and dry up my heart. Not until I do this will my new life start. So that is the first thing I do when my life falls apart.
The second thing I do is I close both of my eyes
And say my thankyou's to each and every moment of my life
I go where I know the love is and let it fill the me up inside
Gathering new strength from sorrow
I'm glad to be alive
And things are looking up
I know above the clouds the sun is shining
Things are looking up
Love is still the answer I'm relying on
Three little things
Things are looking up
Well the third thing that I do now when my world caves in
Is I pause, I take a breath and bow and I let the chapter end
I design my future bright not by where my life has been
And I try try try try, try again
Yes I try try try try, try again"
Thank you from the bottom of my heart for reading this. I know it was chaotic and lengthy. I love you.
Tiffany (Lilly's Mommy)
Lilly in May 2012