Friday, January 29, 2010

life is fragile

dear little leah,

today i was reminded how fragile life really is.

today my friend's little boy went back to his Heavenly Father.

it was very sudden. he got sick and everything went quickly downhill after that. and it made me so sad. i cried a lot today for his mommy and daddy. he was so little - not even two years old yet. and he was their only child. i can't even imagine how lonely they are feeling tonight.

sometimes i feel like life isn't fair...but i feel like it should be. sometimes i feel like some people just get the short end of the stick no matter how obedient they are. today i felt like my friend definitely got the short end of the stick.

and then i had some different thoughts.

i thought how celestial her little boy must have been to have only needed to be on earth for such a short time. i thought how wonderful my friend is for being entrusted with this sweet, celestial spirit while he was here. i thought how lucky we are to know that this sweet, celestial spirit is now in the caring hands of his Heavenly Father and he will get to see his mommy and daddy again.

this isn't to say it makes the sadness and pain and hurt go away. they are still here. i know they will be here for a long time to come. but, i'm so grateful for sweet little spirits and sweet little angels that we are entrusted with - no matter how long that may be for.

i'm grateful that you're my little angel and that i get to be with you, struggles and all, for as long as Heavenly Father thinks is needful.

i thought about how, at one point a few months ago, i felt like death would have been easier for our little family than what we were going through. i'm ashamed to admit it, but those were my honest feelings. i couldn't bear the thought of you going through any more pain than you were going through and i couldn't imagine how daddy and i could hang onto our quickly unraveling rope any longer. now, even though we still struggle each day, i'm so glad Heavenly Father didn't answer that prayer. i'm so glad he gave us the strength we needed to get through the darkness and start to see the light.

i hope Heavenly Father will bless this little boy's mommy and daddy with the ability to see the light even though they are surely experiencing their darkest moments right now.

i hugged you a few extra times today.

i sure love you, little leah.

love, mommy

Wednesday, January 27, 2010

sleepy head

dear little leah,

today you fell asleep at the table while eating breakfast.

for the first time. ever.usually eating keeps you plenty interested. and usually, if you're sleepy while eating, the end result isn't a bobbing head, but food strewn all about the kitchen.

i like this alternative better.

you were eating your cheerios like it was nobody's business. then you got slower and slower. and then you stopped...and closed your eyes.

sleepy leah makes me smile.

love you.

love, mommy

p.s. maybe this means you should go to bed earlier than 11pm and not wake up at 4am. lesson learned???

Friday, January 22, 2010

i'm a bawl baby...

dear little leah,

i'm a bawl baby.

but i'm sure you already knew that.

funny thing is, i never used to cry. i can probably count on one hand the number of times a movie made me cry until recently. now tv commercials make me cry. i tear up in private, in public, when i'm happy, when i'm sad. basically, i just cry all the time now.

but today i had a good reason.

today daddy sent me a song that was written by collin raye. it's called "she's with me." and i'm pretty sure he wrote the song about you.

acutally, he wrote it about his granddaughter, haley. she has a neurological disorder just like you. and, just like you she can't speak and has some really rough days.

but, just like me, collin raye loves his little granddaughter just like i love you. and he sees her as a little angel that they are lucky enough to share their lives with. that's how daddy and i feel about you.

i've listened to the song a kazillion times today. and i've cried (okay, bawled) each time. i've also given you a few more hugs today.

i sure love you.


collin raye: she's with me lyrics:
She’s with me I proudly tell the maitre de as we arrive.
He seems surprised.
In a clumsy moment as he looks for room, for her blessed chair.
A table stares, and their eyes show only pity as they try to sympathize.
Oh, how difficult that must be, look away.
Day after day, they’ll never see, the joy you bring.
Only happy at the times I know that she’s with me.
I wear it like a badge of honor at the mall.
I hear her call, the only way that she is able with a cry.
Time to go bye bye, she can’t say why.
Maybe tired, maybe hurting, god I wish that I could tell.
Do I ever make her happy for awhile.
To see her smile, makes my week.

Though she can’t speak,
she lets me know she feels my love when she’s with me.
I know just what heaven looks like when I see that perfect face.
For no other mortal heart could be so fair.
I myself so weak and weary, so imperfect as a man.
How could I be the one you chose to care for our girl.
Never done a single deed to earn the right to share her light.
Though it’s such a painful road we walk each day.
Lord you have your ways, this I pray.
On the day I stand before you, she’ll stand right by my side.
When you look upon me, head hung down in shame I’ll feel the blame.
She’ll look at me,
and then she’ll speak, in that precious voice:
Don’t worry ‘bout him my lord, cuz you see,
He’s with me.

Saturday, January 9, 2010

a great big thank you...

dear little leah,

today i cried.

it was mostly a good cry. a thankful cry. but there was a bit of sadness in there too.

you were in your room taking a peaceful nap. your daddy was in the city at a meeting. i had an hour to myself. i could have done anything in the world {as long as i could do it at home}. and i decided to watch a little video about rett syndrome. we purchased the video the week we learned of your diagnosis back in october. daddy already watched it, but i hadn't. i know i've had time to watch it before now, but part of me was scared. i didn't know what it was going to tell me about rett syndrome. i wasn't sure if i was ready to see all that your life {and mine} could possibly become.

i shouldn't have been scared.

it was a beautiful movie. so many beautiful little girls just like you. so many parents and grandparents that really know what we have gone through as we watched you grow, learn and develop, and then stop, digress and wonder what in the world just happened to our little girl.

i'm so grateful for all the families who experienced rett syndrome without ever knowing what it was and for those families who have such positive attitudes about this trial in their lives. i'm so grateful for all the scientists and doctors who have spent hours, weeks, months, years of their lives dedicated to figuring out what this monster is, who discovered the mecp2 gene, and who continue to try to understand how it works. i'm so grateful for all the families and individuals who have helped to fund this research. i'm so grateful for all the sweet little angels, just like you, who have so bravely endured when their abilities somehow disappear overnight. i'm so grateful for technology that helps me to learn more about what you are going through...and hopefully how to better help you. i'm so grateful for the future and all that it holds in regards to curing and preventing this disease.

mostly, i'm so grateful for you.

i really love you, you know.


Saturday, January 2, 2010

it's gonna be a good one...i can feel it...

dear little leah,

wow. a new year. your fourth calendar year. that's kind of crazy, don't you think?

you've already had a lot happen to you during your short little life, and some of it hasn't been so much fun, so i completely understand you behavior when we tried to get you excited about welcoming a new year. but i have a feeling this year is going to be a great year.

each new year's eve, your daddy and i make predictions for the upcoming year. we also read the predictions we made the year before to see how well we guessed what was going to happen.

i wasn't such a good guesser this year. in fact, it was probably my worst year yet.

i thought you would be walking {check}, running {check}, jumping {nope}, speaking in sentences {uh uh}, sleeping in a big girl bed {nah}, and potty trained {no way}. and those were just the things i wrote down. i knew as i opened the sealed envelope with 2009 scrawled across it that i probably didn't guess many right. this year, i think i'm going to do a better job.

i know things are different. it's not that i've lowered my expectations, i've just changed them a bit. i predicted things that can be reasonably reached. i know you won't be talking or jumping and you most likely won't be potty trained. but i think you'll be a better communicator. i think we'll be able to figure each other out a little more. i think {i hope} we can get into more of a routine this year so the day-to-day stuff won't be so darn hard.

i hope i can sit back and relax and enjoy you a little more. you're still my little leah, you know. we still read together, giggle together, cry together, cuddle together, play together, make messes together, get ready together and love each other together.

i just think it's going to be a good year. i can feel it.

bring it on 2010. the laytons can take it.