no. 31: edumacation

dear little leah, 

what a month! i'm glad i was able to record some of my thoughts about our day-to-day with rett syndrome. it's been therapuetic for me and i hope it's been educational for others. because you've sure given me an education. 

i've learned so much about how to treat and not treat other human beings. i hope others know they can talk to you, not just about you, to me. i hope others know how bright and able you are, rather than just seeing you for your disabilities. i hope others will learn, just as i'm trying to learn, that simply because someone is different, doesn't mean they're less. 

i hope, by my own example, i can help others to learn to be a bit more compassionate, a bit more accepting  and a bit more understanding of others who have needs and abilities that differ from their own. to not stare or gawk or try to get away. i'm more than happy to share you with the world little leah. {most days} i love to talk about you and show others what an amazing little girl you are.

i hope people know that, no matter what, i would never ever ever choose to not have you in my life. struggles and all, you are a daughter of god and you deserve to be loved and to have opportunities to love.

i've learned to let others be the source on whatever they're dealing with - to hold my tongue, suppress my advice and let them be. to not judge based on what i see, because i really don't know. i've learned that no matter if people appear to be "normal" or not, we're all struggling with something. i've learned to better shrug off the comments about how perfect i am to be dealing with this "trial" in my life. trial or not, nobody's perfect. lots of people fail. lots of days i fail. but i'm trying my best - just as anyone else placed in this situation would do.

i've learned to be more open with my emotions. this has the potential to get me in trouble as sometimes my emotions include negative thoughts and things i wish people knew or didn't do. but i've learned that most people don't mean harm. most people are just trying to help and most likely just don't know how to - just like me one year ago. 

you've taught me a lot, little leah. hopefully i've taught you some things too. and i know we both have more to learn. thanks for the education. 

love you. 

love, 

mommy

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. 

love, 

mommy

no. 29: lean on me

dear little leah, 

i know i wrote to you a little bit a few days ago about our rett family and how much their friendship means to me. but i couldn't let the month go by without expressing my gratitude to friends and family that have nothing to do with rett at all. 

no one chooses their families - they're just kind of sent to us and we learn to love. but we're lucky enough to have family that is pretty easy to love. grandmas, grandpa, aunts, uncles and cousins who love you to pieces and would do anything in the world for you. i'm pretty sure both grandmas want me to stick you in a box with some bubble wrap and ship you to an 84xxx zip code. your uncle ed chose to donate the federal portion of his paycheck to rett syndrome research {and rallied some other bp agents to do the same}. uncle dan downloaded some yardigans episodes onto his iPad and can't wait to see what you do with it next weekend. the list could go on and on. 

i've always been lucky with friends. or more likely blessed. and the friends i have now are no exception. they have lifted, strengthened, served and blessed our family in ways i could never count or explain. these friends have listened to me whine and complain about their own kids while completely understanding i'm only doing it to mourn the loss of your abilities. our friends here have become our family. we celebrate holidays with them. we have birthdays with them. we basically do everything with them and we are so blessed to know them. they just kind of fell into our laps and i kind of want to put them in my pocket and carry them wherever life takes us. 

it's our everyday friends and family that see the good and bad and accept us anyway. they love us all for who we are - strengths and weaknesses - and don't try to change us. they seem to almost sense what we need and jump at any opportunity to serve us. case in point: we asked ty to help you smile for the camera today and without even flinching, he took us literally. you didn't mind.

i sometimes get overwhelmed with emotion when i think of how blessed our family is with friends and family members. they're the reason we're alive and well today. they pick up where i leave off and tie off all my loose ends. they reach out their hand when i'm falling and offer a shoulder to lean and cry on. they laugh with us and cry with us. they learn with us and help educate others. 

we truly are associated with the best, little leah. i know that. you know that. daddy knows that. now let's do our best to make sure they know it.

i love you, little leah.

love, 

mommy

no. 28: dear dad

dear little leah, 

just want to let you know how grateful i am for your dad. he sure loves us. he works so hard all day {and sometimes into the night} for us, then comes home and works for us all over again. 

he's been buuuuuuuuuuuuuuuuuuusy for the past few months with lots and lots of things, but he always makes time for you {and me, but this letter is about you}. time to cuddle, time to dance, time to read, time to sing. time to feed and change and dress and bathe. time to give me a break and let me get away. he checks on you every night after you go to sleep. sometimes multiple times. in the middle of a random conversation he'll smile and say something like, "i sure love that little girl." and he really, really does, little leah.

you've kind of got him wrapped around each one of your little fingers. a few times. let's make sure he knows we love him too. 

love, 

mommy

no. 27: IEP

dear little leah, 

I.E.P. just three simple letters and yet, when put together, they've become three of my most-dreaded letters of the entire twenty six. they stand for individualized education program and every child in california that has any kind of special, specific or additional need has to have one. 

a team usually gets together to create a child's IEP. teachers, employees from the school district, therapists, parents, and more. and they all have to agree as to what services each specific child will or will not be able to participate in and who will pay for said services. goals are set to reach certain milestones. the goals have to be very specific and measurable, which is a lot more difficult than it sounds. it's lots of preparation on my part and lots of paperwork for everyone.

{...}

and if it's not in your IEP, tough luck. you don't get it. so, if i forget to ask for something or don't know something is available, it's most likely not going to be brought up and you will not be blessed with those services for the entire year. 

oh yah. and IEP lasts for a year and has to be re-created annually.

we truly lucked out with a great team of individuals who all seem to have your best interest in mind. but, last february, i wasn't incredibly educated about the whole system and am already realizing how i could have done things much better and am seeing services that you could really be using right now. 

i had the opportunity to sit in on an IEP for one of your rett friends. her mom is really on the ball and just kind of gets the whole advocating thing. i'm seriously thinking of hiring her for your next IEP. this little girl is five, so she's a little more advanced with technology and the like, but i got so many ideas for your year four IEP as well as how it's all organized and run. 

and i feel much more prepared. 

hopefully this year we'll get a little more of what you need. i'm learning, slowly, how to be your mom, in hopes the letters i, e and p won't send me into heavy sweats for the next 15 years. thanks for being patient. 

i love you.

love, 

mommy

no. 26: i wish i never HAD to meet them

dear little leah, 

today my thoughts take me to some wonderful people. wonderful people that i wish we never met...or i wish we never had to meet. but i'm ever-so-grateful we did. these wonderful people are our rett family.

if there's one good thing that has come out of this whole rett mess, it's most definitely the people. we've known these families for six months, at most. many, much less than that. some we've never physically met, we've just gotten to know them online through blogs and other media. and yet we feel so connected. like we've known each other for years. and we've known each other well. 

some live rather close to us. some are very far away.

some are old. some are young.

some of them have girls who seem a lot like you. others, not so much. some girls can walk. other's can't. some girls have feeding tubes. others eat food just as you do. some have seizures. some have heart problems. some hyperventilate and hold their breath...and then some turn blue and pass out. some have balance issues. some are constantly wringing their hands and mouthing. some need braces on their arms. some need braces on their legs. some need wheelchairs.

but all of these families have one thing in common and that is that they are living with rett syndrome every single day, just like you. just like us.

each of these families has a love so deep for these sweet girls that nothing will stop them from giving their girls the best.

these families have provided emotional support for me. one mom who lives locally told me just a few weeks ago that dr. mary, the dr. at the clinic we go to, told this other mom about us last december. she warned the mom that this new mom {me} might not be ready to talk just yet. and she was so right. i needed some time to just be. to let the news settle. to mourn. to let some dreams die. and then i was ready to jump right in. and when i jumped, this mom was there to greet me.

some families have provided great friendships. just knowing other families know what goes on from day to day - and can see your behavior and not think it's anything unusual - is a wonderful feeling. i never have to explain myself. i never have to answer questions. i can just be.

some families have provided encouragement and the umph i needed to really get involved. these families dedicate their lives to the rett syndrome cause and it's really admiring. they work for rett syndrome organizations. they are up to date on the latest and greatest research and medical advances. they organize strollathons and fundraisers and other events to raise funds and awareness.

some families have provided a relief for the future. seeing these families function - and function well with multiple children {older, younger, boys, girls, small gaps, large gaps, doesn't matter} has been comforting and encouraging.

some families have provided practical, useful information. things to help you out with your communication, supports for school, ideas for therapies, help with questions about eating, sleeping, breathing, walking, falling, anything-else-you-can-think-of - these guys have the answer.

some families have provided the knowledge i need to jump through the medical and insurance hoops. they know how the regional centers work. they know the questions to ask. they know what's available and how we should go about getting the help that we need, specific to your development and abilities.

some families have provided the ability to let my emotions flow. hearing these {mostly} moms talk about their day-to-day lives with their girls sometimes makes me cry. sometimes makes me think. sometimes makes me dream. wonder. wish. laugh. hope. work. the list could go on and on and on. these families have helped me to feel and understand those feelings better than i ever could have on my own.

i hope our friendships and connections continue to grow and develop as quickly and deeply as they already have and that we can continue those relationships when all you sweet little girls are cured. i imagine a day when all of YOU get together and can laugh and chat and cry about your former rett lives - and how you've all become better and stronger individuals for those struggles you overcame.

my life has been blessed and more full because of these families we've been able to meet in the last few months. and, although i really, honestly, truly wish i never HAD to meet them, i will forever be grateful that i did.

i love you little leah. and i love our rett family.
love,
mommy

no. 25: we are family...

dear little leah,

at the beginning of the month, when i first decided to write one letter to you each day in october, i started a list of possible ideas. i knew that some days i'd want to write about whatever happened that day or something i hadn't thought of until later in the month, so i left a few days blank. some of the ideas i originally wrote down i really want to write about, but i just haven't been able to find the words. so those got pushed to the side.

but there's one that just keeps nagging. i kept skirting around it and it kept showing up again. the word on the list was siblings.

i have three siblings - two older brothers and one little sister. you know that! we are all very different. so different, in fact, that sometimes i'm still surprised that we're actually all friends. but we are. i get to see two of them in two weeks and i'm antsy with anticpation.

but i don't mean my siblings, leah. i mean siblings for you.



oh, little leah. sometimes i just don't know what to think. i really, truly want you to have siblings. plural. more than one. my original plan was to have another baby in between your second and third birthdays. as your walking was delayed, it was an enormous stress on me and daddy and we pushed it back a little. by the time you were two and a half, we decided we were ready. and, for the last 16 months we have been "ready", but it just hasn't happened.



i'm not sure why. we had no problems getting you here. as in you-took-a-month no problems. there have been days...and months {in particular last fall}...where i've been super glad another sibling was NOT on his or her way. and there have been days where i have ached to be holding your brother or sister in my arms.



i've watched friends and family members get pregnant with their first, second, third and fourth children after we decided we were ready...and then deliver those children already. i've watched friends struggle with infertility and miraculously become pregnant. i've watched friends adopt. i've watched friends be upset that they are having a child. i've watched friends be surprised. i've watched friends plan it perfectly and have it go according to plan. and all the while i wait.



to top it off, you absolutely love babies. if we go anywhere a baby is, you stop and stare. you smile. you giggle. you pat ever so gently. you are so interested and so in love with these new and perfect beings.



i definitely have my fears about siblings for you. i worry about how i'll feed them...and you. dress them...and you. change them...and you. carry them...and you. but i know it will work out.



i worry about the age difference being too much. but i know it will work out.

i worry about disciplining them and holding them to one standard when i don't and can't hold you to that same standard because your abilities will be different. but i know it will work out.


i wonder if they'll understand you. if they'll advocate for you and stick up for you. i wonder if they'll see you as different or if they'll just accept you for who you are. i worry that they might think it's not "cool" to be around you. i wonder if they'll ever just be silly with you. but i know it will all work out. 

 

i've had my moments of anger in the past 16 months, but mostly i feel at peace. i really do think you'll get siblings one day. i have no idea when and i really don't know how they'll join our family. but i just feel like they'll get here, somehow, when the timing is right...because our family is definitely not complete. 

i also have the most wonderful feeling that they will be prepared to be in our family. they will understand the challenges that will come, but they will be up to the challenge. they will also see the countless rewards and blessings and will feel rewarded and blessed themselves to have leah as their big sister. those are some lucky kiddos if you ask me.



leah, you are going to be the best big sister this world has ever known. and i'm so excited for that day - whenever it is. you've already blessed my life so much and teach me countless lessons each day. i can only imagine what your future siblings will teach me and what you will all teach each other.



i love you, little leah. to the moon and back. and i can't wait to love your siblings too. whenever they're ready.

love,

mommy

no. 24: hey, i'm a receiver

dear little leah, 

i'm kind of an independent gal. i like to be alone and do things on my own. i like feeling able in all aspects of my life. i've never considered myself a needy person. and, until recently, was most definitely on the giving end of the scale of life. 

enter: you. 

it's been an interesting and hard and humbling lesson for me to learn, and i'm not all the way there yet. on the one hand, i don't like asking others for help and i don't like to feel like a charity case. i don't like feeling incapable of accomplishing anything in my life. on the other hand, i'm ever-so-grateful for the help that has been offered on our family's behalf. 

dinners. babysitting. prayers. monetary donations. well wishes. shoulders to lean and to cry on. listening ears.  thoughtful and encouraging notes. the list could go on and on. and, sadly, i'm sure i'm not even aware of all the kind acts performed on my behalf. and the whole transition has been altogether uncomfortable for me. feelings of inadequacy and neediness {oh, the shame!}. putting on a brave face when all i want to do is crumble into a puddle of tears. wondering when, exactly, i might see a spec of light at the end of the rett tunnel. 

and yet, i have no problem giving this kind of service to others. i'm not the most thoughtful person on the planet, but i try to see the needs of others and help them out if i'm able. i don't mind bringing a warm dinner to someone in need, or cleaning their bathroom, or donating a few dollars, or watching their children, or offering prayers on their behalf or just listening when they need to talk. and i don't ever think of these individuals and families as charity cases or needy.

so why, then, do i feel so awkward and less-than-able and full of shame when i'm on the receiving end? i really don't have an answer. i'm not sure why we feel so inadequate when we need help from others. isn't that what this life is all about? to serve and be served and to help each other come unto Christ? that's what i've been taught. and i do believe it. yet it's still such a hard lesson to put into practice. 

but i'm working on it. and i wanted to send a little thank you your way for helping me to learn this lesson. for allowing me to begin to know how good it feels to be served and loved and thought of when i feel so alone. for helping me to understand the importance of letting others serve even if it means feeling a little inadequate and not so independent every once in awhile. thanks for humbling me and sending me to my knees on my darkest and dreariest days only to watch answers to my prayers unfold right before my eyes in the form of a family member or friend. you're a tricky girl, teaching your mom all these big, fancy lessons. and i love you all the more for it. to the moon and back.

love, 

mommy

no. 23: your eyes, your eyes

dear little leah, 

when i caught my first glimpse of you that rainy february evening in 2007 {let's remember i was drugged, okay?}, my first thought was, "oh, she's perfect, but who is that baby?" with your fair skin and your light eyes and somewhat bald head, surely you couldn't be my daughter. i was olive toned and had a head full or dark hair ready for a ribbon on day one. and then i realized your dad had a part in your creation too - and you looked just like him. if it weren't for your nose, i might not have believed you'd just been not-so-gently ripped from my abdomen. 

i wasn't able to see you for about a day as they whisked you off to the NICU to monitor a potential heart issue, and i stayed a floor below, unable to walk. when i did finally go up to hold and kiss and cuddle you, one of the first things i noticed was your eye. it looked as if your left pupil was longer than the other. of course, the first few weeks of your life, you didn't give us many chances to actually look at your eyes, but when you did, i noticed. i wasn't sure if this was a dangerous thing or not, so we had it checked when you were about one month old. 

turns out, you have a congenital birth defect called coloboma, a "hole" in, your case, the iris. It's caused when a gap called the choroid fissure fails to completely close up in development before birth. the doctor explained it as a zipper and the zipper on your iris never zipped up completely. luckily, yours is cosmetic. only the iris was affected, not any of the muscles or other structures in your eye. you can see just fine and get a cool cat eye to boot.

your coloboma is one of my favorite features about you. i really, truly think it is beautiful, and so uniquely you. it's quite noticeable set against your brilliantly blue eyes and you get comments on it all the time. most everyone who sees it thinks it is super cool. and it is, just like you. 

i recently learned that the word "coloboma" in Greek means "unfinished." i'm not sure why, but this really struck me. in a way, i think we all have coloboma in one form or another. we are here on earth to learn and to grow and to better ourselves - to "finish" ourselves and return to our heavenly father as better and more pure and perfect beings. more than anyone in this world, you have helped me on that path. oh, i know i'm far from being perfect, but you've helped me to see a lot of my inadequacies and rough edges. and hopefully, with your help, i can continue to sand them down and finish myself off - and become as perfect as you were the day you were born. 

i love you, little leah. 

love, 

mommy

no. 22: baby talk

dear little leah, 

i try to be a positive person - especially when it comes to the efforts of others. i really, truly try. but there is one thing that really gets to me and i have a hard time seeing the positive in it. often, when people talk to you, they do so in a voice like they are talking to a baby. you know, that really high-pitched, sqeaky tone with lots of oooohs and aaaahs.

i understand that adults often talk to children in a different way than they talk to adults. and they talk to babies in a different way than they talk to children or adults. but, i'm pretty sure last time i checked, you weren't a baby. you are a child. and you deserve to be spoken to just as any other child. i don't mind treating you like a child - maybe speaking with some excitement in your voice or with a less extravagant vocabulary. but i do not understand dumbing it down to the level of an infant.

i don't know what to do, leah. it really drives me up a wall. i know they probably don't know what to do and in all honesty, i guess i'm glad they're talking to you at all, not just ignoring and avoiding you like some. 

but, because you don't respond doesn't mean you don't hear or understand. 

does it bother you as much as it bothers me, leah? do you even care? do you want to turn around and talk to them like they're a baby or punch them in the face or kick them in the shins? i do. maybe they don't even know they're doing it. maybe they think because you can't do or say all the things a normal three and a half year old does and says, that you don't understand. maybe. 

maybe they think they're being more kind by responding to you in that way. maybe. 

maybe they honestly, truly just aren't even aware that they're even speaking to you differently than they speak to their own three year old two feet away. maybe. 

i don't know. 

and i wish it didn't bother me so, but it does. and my only solution right now is to suck it up and be an example. to speak to you how i would like them to speak to you. and to treat you with the respect and understanding a three year old deserves. and i'll refrain from the face punching and shin kicking - for now.

i love you, little leah. 

love, 

mommy