Saturday, October 30, 2010

no. 30: d day

dear little leah, 

one year ago today, i answered the phone. and that phone call forever changed the course of my life. it had been a good day and i was in the kitchen cleaning up after lunch as you were taking your afternoon nap. it was your neurologist. the conversation went something like this:

“maren, i need  you to sit down,” she said.
“okay,” i replied, and lied, as i continued to clean with the phone to my ear.
“i got the blood test results back today,” she said. “leah has rett syndrome.” 

and then i stopped. i didn’t sit down, i fell down to my knees on my hard linoleum floor. somehow i held it together for the remainder of our brief phone conversation. 

“remember,” she said, “a diagnosis doesn’t change your little girl. she’s still the same. and she still needs you today just as much as she did yesterday.”

as i hung up the phone, i fell apart. i cried for what seemed like forever. i felt so alone. i needed to tell someone. i called your daddy – he didn’t answer. i called grandma – she answered, but i didn’t have the words to tell her, so i just cried. sShe knew. she cried too. 

it’s been months since that fateful october day. i’ve done a lot of thinking, a lot of crying, a lot of researching, a lot of learning and a lot of loving. i’ve met many mothers who have been where i am and have offered much needed advice. i’ve been uplifted by friends and family who have selflessly listened to my fears, fasted and prayed for our family, and helped in ways they probably don’t even realize. 

some days i still wake up hoping it’s all a nightmare. i still dream that you will run into my room, wearing a silly outfit you picked out yourself and tell me the craziest story or ask the funniest question i’ve ever heard. isn’t that what three year olds do? i still dream that you will learn to sing the songs every child should be able to sing, or go potty like a ‘big girl’ or color a picture with your favorite colored crayon or simply say i love you. but for now, none of that will happen. 

and it’s okay. 

elder holland, a latter-day apostle, said: “…it is not without a recognition of life’s tempests but fully and directly because of them that I testify of God’s love and the Savior’s power to calm the storm.  Always remember in that biblical story that He was out there on the water also, that He faced the worst of it right along with the newest and youngest and most fearful.  Only One who has fought against those ominous waves is justified in telling us—as well as the sea—to “be still” (Mark 4:39; D&C 101:16). Only One who has taken the full brunt of such adversity could ever be justified in telling us in such times to “be of good cheer” (John 16:33; D&C 68:6). …Christ knows better than all others that the trials of life can be very deep, and we are not shallow people if we struggle with them.  But…the Lord expects us to believe!” (“An High Priest of Good Things To Come,” Jeffrey R. Holland, Trusting Jesus, pp.93-94).  

i have good days and i have bad days. you have good days and you have bad days. we definitely haven't weathered the entire storm, but we're going it together. and we've come a long way. one year has made a world of difference. i can't wait to see the progress that is made in years to come. progress with you and your abilities. progress with research, treatments and possibly a cure. progress with my emotional and physical ability to be the best mother i can be. 

daddy and i always said that whatever it was that was plaguing you, we definitely wanted to know. a year ago today, we found our answer. on one hand, it was the exact news we didn't want to hear - that it wasn't just a phase. you wouldn't just grow out of it. on the other hand, it was exactly what we needed - a place to start. it was the night of our church trunk or treat. you were the cutest little witch, and it should have been a happy event. i walked around with a smile on my face and a hole in my heart.

our life ended and began on october 30, 2009, little leah. diagnosis day. but i will be forever grateful that i have you and your daddy, wonderful friends and family and a loving savior to help us along the path. we can do this. 

i love you, little leah. 



  1. I know it's a little late but big hugs for "D" day. It sounds like you dealt with the anniv. very gracefully.

  2. Loved this post.

    I actually met you last year on October 31, although I am sure you don't remember. My husband and I were in town visiting Jaimi and Ben (friends of mine from college), and we went to someone's house for chili and doughnuts. I remember we met you and we thought Leah was adorable. She was having so much fun playing with the other kids and kept coming over to me for sips of water! Your husband kept trying to stop her, but we seriously didn't mind. We thought Leah was so cute that we kept talking to her, asking her how old she was, etc. Eventually, your husband said "yeah, she's not going to answer you." We didn't really think anything of it at the time.

    Until later, that is, when Jaimi filled us in on Leah's recent diagnosis. We felt so dumb! Why did we have to keep asking Leah how old she was? I think we were just feeling awkward at a party where we really didn't know anyone, and talking to a cute little girl was the easiest thing to do. We were seriously kicking ourselves later. As if that day wasn't hard enough for you and your husband!

    I found your blog through Jaimi's blog, and then one day found this blog and read every last entry. Sorry for stalking. :). I am so grateful that you've been writing this. You have definitely educated me on something I knew nothing about, Rett syndrome. And you've offered a really neat perspective on motherhood. As I prepare to become a mother myself one of these days, reading this blog has taught me so much. I really do admire your patience and your courage. And I appreciate how REAL you are. You admit to good days and bad days. Days when you're ok with things and days when you think "why me, why leah?" I really appreciate your take on things, and your realism! The blogosphere could use a lot more of that.

    Hopefully this comment didn't creep you the heck out. I wish you all the best in everything. And Leah, too.