Wednesday, December 29, 2010
Monday, December 20, 2010
Christmas 2009 came just 46 days after learning that Avery had tested positive for Rett syndrome. I was still waking up in the middle of the night and immediately thinking: "Avery has Rett syndrome. Rett syndrome?" After looking back at my posts from this time last year, I can see that I was trying really hard to feel, no, to appear "normal". I was using an awful lot of exclamation points!!!!! It all comes across like "heyeverythingisokoverheresodontworryaboutusonebit!"
Saturday, December 18, 2010
2008 brought preschool, early intervention, a flower girl job and a baby brother! At this point Avery was delayed but making so much progress! She started walking in 2008 and her vocabulary was expanding. She had a TON of words. I made a list to try to prove to the early intervention evaluators that she was just going to "catch up". I think I was also making her out to be better than she was. We were initially denied EI services at all! I was happy and bummed at the same time. like, wait! she needs help...even though I'm pretty sure I am happy you say she doesn't need it, but...wait! We later re-applied and were accepted. duh.
Wednesday, December 15, 2010
Christmas 2007 memories remind me to be happy with what you have at the time. Avery was 17 months old. We had fired her pediatrician by that time because he repeatedly blew us off at any mention of her delays. But all of a sudden at 15 months HE realized she was delayed (but was certain she didnt have any kind of genetic syndrome!). A lesson in mothers instinct-but I didnt want to believe what I knew in my heart. She was not walking, not crawling. She could walk behind a push toy though. That was cool. We had her in PT for about a month and she had promised us she would walk within 4-6 months (and she did!) She was barely pulling up and had very little language.
Monday, December 13, 2010
Friday, December 10, 2010
Wednesday, December 8, 2010
Monday, November 22, 2010
I have been wanting to do this for awhile. Avery's hair is REALLY long. WEll, was. I wanted to wait till it was long enough to donate and then kept putting it off. and for some reason tonight was the night. lucky for me her hair is curly enough to not show the crookedness and still needs a little tweaking. we will see what happens in the morning.
Tuesday, November 9, 2010
today is the day. one year anniversary of the official diagnosis of rett syndrome. and, it's just a plain old tuesday. a tuesday with lots of love, that is. I got some facebook love and text love and even got flowers from my awesome brother in Virginia. Avery's incredible teacher called me to check in and told me she was thinking of me today and values me and avery and that we are in her heart and mind daily. how nice is that? it was what made me cry. but just for a second.
Tuesday, November 2, 2010
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that holds your wine the very cup that was burned in the potter's oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Monday, November 1, 2010
Cause recently mine have been tearing my seams
I sit alone in this winter clarity which clouds my mind
Alone in the wind and the rain you left me
It's getting dark darling, too dark to see
And I'm on my knees, and your faith in shreds, it seems
Corrupted by the simple sniff of riches blown
I know you have felt much more love than you've shown
And I'm on my knees and the water creeps to my chest
But plant your hope with good seeds
Don't cover yourself with thistle and weeds
Rain down, rain down on me
Look over your hills and be still
The sky above us shoots to kill
Rain down, rain down on me
But I will hold on
I will hold on hope
I begged you to hear me, there's more than flesh and bones
Let the dead bury the dead, they will come out in droves
But take the spade from my hands and fill in the holes you've made
But plant your hope with good seeds
Don't cover yourself with thistle and weeds
Rain down, rain down on me
Wednesday, October 20, 2010
Avery was born via C-section on 07.08.06 after 41 weeks and 3 days-She wasn't
ready to come out! But we were so ready to meet her. I'll never forget my husband
telling me: "it's a girl!" We were so overwhelmed-with love and anxiety but she was
an easy baby. She rarely cried and was very independent from the beginning.
Because we were first time parents it wasn't until Avery was about 8-9 months when
we first noticed she wasn't meeting her developmental milestones. Her pediatrician
told us she was fine. We weren't really ready to accept anything was wrong at the
time so we didn't get her started with Physical Therapy until she was 16 months.
After 4 months she was walking. She had inserts in her shoes for ankle stability and now wears arch support orthotics. We had some basic genetic testing that came back normal in spring of 2008. Rett was mentioned but she didn't seem to "fit" in that category so we put the test off. She was evaluated by Early Intervention at the Regional Center of the East Bay (ironically where I used to work!) in June 2008 and was denied.
We got her re-evaluated in November of 2008 and she qualified. She received Physical Therapy, Occupational Therapy and Speech through EI from Jan 2009-June 2009 and now receives these services through our school district. Avery's favorite part is the school bus!! From the age of 2-3 she would have meltdowns out of nowhere-inconsolable crying, screaming and crying in the middle of the night. We had no idea what it was-hunger, pain? It was Rett syndrome taking her away from us. Just prior to her starting school, right around her third birthday we noticed her repetitive hand movements. Deep down I thought it was Rett syndrome-but I ignored it. Chalked it up to a sensory thing. Our neurologist felt differently and suggested it might be time to test for Rett. I was devastated. We didn’t want to know. From what I knew about Rett, she was going to end up severely disabled. I think I cried for 2 days straight and we hadn't even done the blood work!
On November 9th, 2009, after I had convinced myself the test would be negative our whole world changed as we received the news that she had tested positive for Rett Syndrome. We were shocked and sad but mostly relieved. Even though it is extremely difficult, we now know what we are up against and are going to fight it every step of the way. We have a large group of amazing and supportive friends and family who all care about our special little girl as much as we do. This journey with her has given us a new perspective on life and the importance of things most take for granted. Avery has a determined spirit and tries so hard. She has made incredible progress with walking and continues to improve (can walk up two stairs without holding on! climbs into the tub with a little help!). She also tries so hard to communicate-at one point she had 25-30 words/word approximations but they are all gone now due to her continuing regression. She loves to be in the pool, push her baby stroller, look at magazines, eat anything and everything, dance, be with her friends at school, ride the bus and torment her little brother! She has the best giggle, gives great hugs and has an amazing dimpled smile that melts our heart about a hundred times a day.
Rett syndrome is caused by a mutation or deletion on the MeCP2 gene and is mainly only found in girls (it is X chromosome linked) although there are a handful of boys out there. Avery has a deletion at the “end” of the gene and that makes her symptoms less “typical” but it still causes a host of issues. Many girls are not able to walk or speak at all. Many have uncontrolled seizures, feeding issues and other health problems. Avery is prone to having seizures but luckily we haven’t had to deal with that yet. She is also prone to developing a heart condition that can cause her to die suddenly. Avery will have EEG’s and EKG’s every year to check on these issues. She is constantly moving her hands together in a repetitive motion. She screams a lot and cries for reasons we have yet to figure out. We were so lucky to have had her call us mommy and daddy but she no longer able to say them. The only word she says now is BUS. She is 4 years old and still in diapers. I spoon feed her all her meals as she is now unable to feed herself. It is so hard for us to be around children her age-to realize all that she cannot do and will not do unless a cure is found. All of our dreams for her have been crushed. She will never drive, fall in love or get married.
However, there is a lot of hope! Researchers have reversed symptoms of Rett in mice! They are working diligently to figure this out as we speak and when they do it will open doors to a host of other disorders such as autism and Parkinson's. I recently chaired an event called a “Strollathon” to benefit the International Rett Syndrome Foundation and Katie’s Clinic for Rett Syndrome at Children’s in Oakland. The one mile stroll will took place at Arrowhead Marsh in Oakland from 1-4 on 10.03.10. Over 350 people came out to walk and stroll with us and we raised over $71,000!
We have felt so much love and support from the Rett community and are determined to raise awareness and money to fight this devastating disorder. We hate Rett syndrome but love our new Rett family!
If you would like to read more about Avery check out our blog:
and more about the strollathon:
Thursday, October 14, 2010
it's coming up. the anniversary of "that" day. the diagnosis day. this time last year i had pretty much convinced myself that Avery was going to test negative for Rett syndrome. anyone i talked to about it was convinced as well. she couldn't have it. no way. but on november 9th we got the call. she had tested positive. i've been trying not to think too much about it. it's amazing what your mind can do to protect the spirit.
Tuesday, October 5, 2010
Wednesday, September 29, 2010
Thursday, September 23, 2010
Sunday, September 12, 2010
Every so often we get brave and we go meet poppa at the club for breakfast. Ok, not THAT brave because they know us pretty well there and usually there aren't many people dining at 9am in the clubhouse so its pretty safe for us. Baby steps!!
Tuesday, September 7, 2010
It's really true. Avery has been amazing for the past three days. Amazing. I haven't once lost my patience. And that is a straight up miracle. It started on Sunday when we at the last minute decided to take the kids to the zoo. She was great in the car. Even though we stopped on the way and took forever getting there. she held our hands and walked the whole time we were there. She didnt scream once. We saw the alligators, the bats, the reptiles, the tortoises, the monkeys and the tigers! She tried to drop to the ground once while waiting for the train ride but we got through that without incident. She got a teensy bit antsy while waiting for the merry go round. But we got on and she waited patiently. She rode so nicely and then we headed back to the car. She giggled in the car home. Red and I kept looking at each other like "what"? We felt like a regular old family. It was awesome.
Tuesday, August 31, 2010
Tuesday, August 24, 2010
Im so lucky. 9 months ago I became a member of a "club" I never wanted to join. BUT. The people who were already IN the club turned out to be AWESOME. Nothing short of amazing. It's hard to describe.
Its funny how the things you so cherish as a kid morph right into things you dread as you grow up. Summer is OVER. And I can honestly say I am super happy about it! Never did I think I would be dreading summer! Or Spring Break! Or government holidays! But now that Avery has been on the school district schedule I LOVE Mondays! and dread the days off.
Wednesday, August 18, 2010
The paint color on Avery’s bedroom walls got me thinking. We wanted something neutral because we didn’t know “boy” or “girl”. We chose green, something like the inside of a perfectly ripe avocado. Delicious. It’s a little brighter than that but we didn’t want to do it over so it stayed. Thinking of that took me back. Back to the trip to Home Depot to pick it out. Back to painting the room with Red even though I wasn’t supposed to be painting while pregnant. Back to directing him and my mother-in-law as they put together the crib. Back to being ignorant about what it meant to be a parent.
I wish it was as easy as paint colors and cute bedding and the crib from a fancy kid’s store. I wish a lot of things.
But that is not what this is about. This is about how we deal. How we cope. How we do this: how we handle this life with Rett Syndrome that is now our own.
The quick answer? No idea. I don’t really know. We just DO. But that would be a pretty boring post. So I have been thinking of a longer answer to that question that is asked of us repeatedly. “How do you do it?”
A lot of people want to tell me that I am so strong and brave and they couldn’t do what I do. And I always tell them, “Yes you could and you would because it’s your kid.” What am I supposed to do, curl up in the fetal position and cry instead of getting out of bed? (Don’t get me wrong, I have done my fair share of that.) You just have to get up every day and fight.
I have always been the type of person that wants to figure things out on my own and then ask for help-maybe. I don’t know what it is but even in the grocery store while looking for ant traps I will wander the store three times or more before finally acquiescing and tracking someone down to help me. I could walk into a clothing store fully knowing what I want and if the salesperson asks “Can I help you find anything?” I’ll say “no thanks I’m just looking”-liar. So it was no different when we received Avery’s diagnosis almost 9 months ago that I immersed myself in all things Rett. I joined sites and emailed parents and ordered books. I had to get the basics before I could go out and really ask for HELP. I’m getting better at this, even though the ant trap story is true and very recent.
With the diagnosis came a lot of support. It came from all over: from my own home to another Rett mom all the way in Indiana. It came from the Director of Family Support at the International Rett Syndrome Foundation who happens to live about 15 minutes away. It came from a parent of a young woman with Rett whose case I had managed in my previous life as a service coordinator. The support came from all over and I had to take it in. I had to accept it and ask questions and let myself be vulnerable. I felt such love in those first few weeks. Such warmth and lift; and a realization that we really mattered to other people. This has only gotten stronger.
The parents I have met that have blazed the Rett trail before us have been such gifts to us. Shoulders to cry on. New friends to laugh with. Our bonds are unbreakable even before we meet in person. We are connected and always will be. It’s a difficult thing to describe, but I know I couldn’t do any of this without each and every one of them.
I’m a big fan of email vs. telephone for most any communication and it was via email that we notified our friends and far away family about Avery. I’ll never forget the responses we got and I was so thankful that email existed because I’m not sure how I would have handled all the calls that would have flooded the line. I also realized something even more important: this was not the worst thing that could have happened to Avery or to us. I remember thinking “Wait! She didn’t DIE! She just has Rett syndrome!” as I read some of the responses we got. Everyone offered to do what they could to help – bring food, watch the kids, get groceries – and that is when it clicked: it could be a lot worse. Avery is a bubbly, happy, giggle monster who has a zest for life. She isn’t ill at the moment or requiring special medical care to keep her comfortable. We can do this!
The night we got the news, I called my husband to let him know. He was almost home from work and his response was pure shock. Denial. No way, it can’t be. “It is,” I told him. We embraced as soon as he walked in the door and we both cried. I told him it was going to be ok. We can do this, together. We had already had many conversations about our divorce chances being something like 80%, that this kind of thing can really drive a wedge in a relationship. We had vowed to never let that happen – we needed to be a united front and help each other so that we could help Avery. As soon as he walked in that night and we hugged, I knew it really would be ok. We were in this together. He was going to have to hold me up and I would do the same. Our marriage isn’t perfect – is anyone’s? But I can say that it has only gotten better since diagnosis. It honestly has. My husband has been such an amazing support to me even if he doesn’t know it. I’m beyond grateful to be walking this road hand-in-hand with him.
Part of me feels like I should always be “on”, always in “rett mode”, thinking of PT, OT, ST, ABA and IEPs. I quickly realized that, while all necessary, it’s easy to get bogged down in all the “stuff” that comes along with a disability. There is a lot to learn, to do, to think about, to plan. But, not at the expense of my sanity. I recently told someone I think I might be missing the I-feel-guilty-when-I-leave-my-kids part of my brain. Because I rarely feel that way. Maybe I should feel guilty for that?Probably. I go to the gym 4-5 days a week and it’s my saving grace. I have monthly girls’ nights, book clubs and random dinners with friends. I indulge in pedicures, hair appointments and as many date nights as possible. We take weekend trips as much as our wallets will allow with friends or just the two of us. It is so important to “recharge”. We have to take care of ourselves if we are going to have any chance of taking care of the kids.
My blog (and my fellow blogging Rett mamas) has been an amazing support system. Being able to put my feelings out there – to write them down – helps me process and makes it easier to accept the love and support I am receiving from all over. It keeps me from having to tell the same story over and over. It has connected me to other moms all over the world – no seriously – the world. It has connected me to me and this life and my feelings about it good and bad. I often get comments referring to my blog such as “you are so candid” or “I love how honest you are” and it feels good. I think it’s a difficult thing to be a parent and be honest about your struggles, let alone a parent of a child with a disability.I’m not doing a newly diagnosed parent any favors by sugar coating it. I remember hearing new moms talk about the experience of bringing their new babies home and I rarely heard the words scared, overwhelmed, depressed, anxious, or panicked. All you ever hear is that it’s amazing, and joyful and full of so much love and beauty. And it wasn’t like that for me and I have always felt it wasn’t totally like that for most moms either. It still isn’t. Not totally. Of course I do have a front row seat to two of the most amazing miracles on a daily basis. Because we have been dealt this brutal blow, I get to really truly see my kids progress no matter how small. And that is PRECIOUS.
So, I’m not sure that I have answered my question any better than “I don’t know” but I do know that it isn’t just one thing. It is a lot of little things that end up being really amazing when they all come crashing together.Kind of like a smoothie. Or guacamole. Delicious.