Thursday, January 27, 2011

Watch The View on ABC Friday January 28th!

Rett syndrome will get its own segment on The View tomorrow! Check it out, but first read about it here !!!!

Tuesday, January 25, 2011

the last time

I just suddenly realized it was four years ago this past Sunday that I last saw my mom alive. I'll never forget looking back at her to say goodbye, knowing it would very likely be the last time I saw her.

That moment is forever etched in my mind. She sat with a crooked smile on her face, her frail body barely holding her up as she sat on the side of her in-home hospital bed. She waved limply to me as I left my brother's home-the one he had to buy so that she could move in with them. She was smiling, even though her facial muscles were failing her.

A few weeks prior, my brother called me and said "you should probably come see mom". I knew why. I knew that day would come but still I was unprepared to hear him say that. I was 32 years old. Too young to be realizing my mom would soon die.

I had been out to visit her just three months before that. I flew across country with Avery on my lap to see my mom, my brother and his family and my grandma (moms mom). What a difference those short months had made. It was October 2006 and she could still eat by mouth, though she was beginning to have trouble with that. By December she had a feeding tube. Something she said she would NEVER do. In January I was pouring Ensure into a large syringe connected to a tube in my mom's stomach so she could eat.

I spent a little less than a week there-alone this time-so I could just hang out with her, tell her how much she meant to me and how much I would miss her. But death is a strange thing to discuss with a person who is dying. Especially when that person is your mom. So, I sat next to her in her bed and we watched TV. We chatted a bit about what she wanted her service to be like-what music to play etc. and where she wanted her ashes spread. She had to write it all down because she could no longer speak at that time. We went through her costume and real jewelry, "is this any good?". We laughed a little because even though she couldnt speak, she was just as critical as ever-pointing to my baby weight and pretty much saying I needed to work out. She was right.

I struggled to tell her how I felt. I didn't want to cry and didn't want her to either. Maybe I wanted her to know we would be ok without her. Maybe I was just a big chicken. I dont remember exactly what I said-but I know I didnt even come close to telling her what I wanted to say. I had the chance to do it and I didnt. Im sure she knew. I hope she did.

Less than a month later, I received another call from my brother. It was a Sunday night. He said mom was having trouble breathing and seemed scared. She was on oxygen by then and we decided (with guidance from hospice) that it was time to take her off and let her go. He said it may take a while. I don't know why it didnt occur to me to have him put the phone to her ear and let me tell her goodbye and that I loved her one last time. It didnt occur to me. at all! And Ill always regret it. Not something that you can really prepare for I guess. I heard from him again the next morning-and she had passed away. It was a holiday that day-so Red was home with me luckily. I had to then call my grandma (her mom) and tell her. Thats another moment Ill never forget. It's not the way it is supposed to happen.

Im so angry that my mom had to get ALS. That it robbed her of speech, the ability to eat (two things she loved to do: talk and eat!) and finally of her life-way too early at the age of 63. But she loved me and my brother-she saw us grow up, get married and have our first children. That makes me happy. But I still need her. I want her here. I want her back. I want to be writing this post because she is annoying me and trying to control everything-especially where Avery is concerned. I know she would be all over it. She would think we weren't doing enough, and it's too bad that it takes her dying for me to realize that all the annoying things she did and said were because she loved me. so much. I get it now. But I still miss my mom.

one more day

Im one day away from being totally off Wellbutrin and I have to say the process has been pretty easy and really without incident!
This could change easily if Im not able to get to the gym today...Nolan puked last night (at 11:30pm-why cant they ever puke during daytime hours?). He seems fine now and has eaten. I think it was something he ate yesterday or just too much cheese. Either way I was bathing him and washing sheets at midnight. No fun. Ah the joys of motherhood!
And, Avery has a rash. Not sure what it is from-thinking maybe her banana allergy is back. We will see how she does today at school. Im always worried they will send her home! Long story short-not sure Ill make it to the gym and I think the workouts help a ton with my mood. Maybe I should just get off the computer and go. Yep, thats what Ill do! More later!

Tuesday, January 18, 2011

hold on to your hats, people!

I don't keep too much to myself. I probably give people a little too much information at times-but that is just the way I roll. I really don't like to have secrets (Im no good at keeping them anyway!) and Im kind of an open book. I wear my emotions on my sleeve so it an easy read for those paying attention.

So, many of you may know that I rely on a prescription medication to chill me out. And you also probably know that I have been taking this medication off and on since 2003. After Nolan was born-preparing myself for a reprise of the big time baby blues I experienced with Avery-I requested a new prescription for Wellbutrin which had worked so well before. Yes, its used as an anti depressant-no, Im not depressed. I took it for a year (even though I never got weepy after Nolan was born)and then increased the dosage right around the same time Avery was diagnosed with Rett (coincidence? I think not!). Another year passes and I now feel like Im no better with it than I was before. Kind of feeling like its a bit worse. So with my Dr's blessing, Im going to stop taking it-so hold on to your hats, it could get interesting.

Im not quitting cold turkey-even though Wellbutrin is one drug that wouldn't be that difficult to just up and stop. I will be slowly lowering my dosage over the next 10 days or so. And see what happens.

Im going to try to see how I feel without anything messing with my brain. Im not afraid to admit, however, if I do need something to help me deal. I am kind of (ok, seriously) angry. I am kind of sad (really sad). I overreact to many things (almost everything). I yell (a LOT). Plus I have some memory issues that I think are related to the Wellbutrin. If I feel like I need it, we are going to try a mood stabilizer a.k.a. anti convulsant. I asked the Dr. what this would do to my brain. He said it can help dull some of the over firing neurons that make me extra sensitive to things and make me overreact. I like the sound of that. stay tuned.

Tuesday, January 4, 2011

NOLAN! (yes, we have another child)

Everyday I find myself saying "I have got to write that down" when Nolan does or says something so cute that can't possibly come from a 2 year old. So I thought I would put some stuff here-that way it isnt scribbled in a notebook somewhere that will be all wrinkled and yellow when I feel the urge to look back on it. Speaking of that, is this blog here FOREVER? Do I need to back it up or something?
Anyway. So some cute and funny things that come to mind are:
1. the way he pronounces Christmas: Chruffmuff. Its so cute, especially when we saw any chruffmuff lights, or chruffmuff presents.
2. Anytime we say "thanks buddy" he now says "sure. no problem"
3. he calls fruit snacks "SACKS" which sounds more like SEX especially when we are in the grocery store and he is yelling at the top of his lungs "I WANT SEX MOMMY!" thats my kid.
4. he is now taking Avery by the hand and taking her places saying "come ON sissy!"
5. he navigates an iphone like an adult. finds the photos, then find videos and presses play.
6. when he counts "1, 2, 3, 4, 1, 6, 7, 8, 7, 8, 9, 7!" or a variation of that.
7. upon hearing that song G6 that is on the radio every 4 and a half minutes, he says "I like cheese sticks too!"
8. how he went from 2 word sentences to saying things like "why you knocking the vacuum over mommy?" (there was plastic stuck in the thingamajig that goes around and i had to get it out)
9. his version of Baa Baa Black Sheep goes something like this: baa baa black sheep have you arrywool. yes sir yes sir three bags FOUR.
10. Nolan what color is this? ORANGE! everything is orange first.
11. he is obsessed with gardeners/landscapers. Last week, I swear he watched them through the window for 40 straight minutes. He asks about them everyday and when we pass the lawn mower shop by our house, he exclaims: "saw lawn blowers!" he asked Santa for a leaf blower and lawn mower for chruffmuff. he got both-plus a chainsaw, and a weed whacker! We got it from constructive playthings and we love it! You can see it here.

there is more of course but I cant think of it all right now. Ill add stuff later. But I am so in awe of all he can do and how it comes so naturally. He climbs and colors and pretends and names objects I am not quite sure how he knows. Like skateboards. its pretty cool.
He is also a total 2 year old monster... but when he is being good-its great.

Saturday, January 1, 2011

Christmas 2010

After realizing that the connection to my camera is most likely the reason that I cannot get my photos from my "good" camera, I found another way. A memory card reader. Picked one up at Target for $12.99. Easy peasy.

Christmas is never easy for me. Not just because of Rett syndrome and the losses that brings. Christmas reminds me of other things I have lost. Namely, my parents. I have such wonderful memories of Christmas growing up. We always hosted a Christmas Eve party at our house-a small party that typically consisted of my parents, my brother and me (and usually my BFF). Plus several of my parents close friends who almost all happened to be Jewish! Kind of funny, right? But it was just a time for friends and family. We laughed a lot, and ate fantastic food which I have yet to try to recreate (the only one I can do is the cream cheese topped with cocktail sauce and lump crab meat-served with crackers. its ridiculously delicious!) It was the one night that everything seemed to be perfect.

It was the most wonderful time of the year. I loved spending time with my parents and older brother. loved it. So much so that I used to wish the power would go out during thunderstorms and we would bring out the board games and play scrabble by candlelight.

Once we had our own children, I decided I would carry on the Christmas Eve tradition and host our family at our house. We have done it now for a few years and I love it. Its the one night we can try to forget about the crap in our lives and all hang out, eat, drink and be merry. It's usually about 10-11 people-which is just right for our tiny house. This year we were joined by baby Jackson-Avery and Nolan's new cousin! He is 2 and a half months! Two of the group were missing-our newest niece, Rowen Grace (born 12.22.10) and her mommy Kelly! Kelly is Red's youngest brothers (Charlie) fiancee and we are so happy for them! Charlie made it over for a bit which was awesome!

This year, instead of trying to do it all on my own like my mom would have done, I had everyone pitch in a bring a dish and pretty much everyone brought wine. It was wonderful. I made Chicken Marbella-so easy. After dinner and dessert we exchanged our secret santa gifts with each other (we draw names and just buy for one person). Then we do our yankee swap (or white elephant). It's always a great time with some seriously funny gifts and stealing galore. I ended up with one of two shake weights-and I love it. Nolan liked it too! I really think its going to do a number on my arms this year! It's hard!

The kids had a great time, especially Nolan. He was really into opening gifts. We always got to open one on christmas eve growing up too. The kids got great Christmas PJ's -thanks Barb!

After the kids went to bed, our house became Santa's workshop. Uncle MT and Sarah helped (pretty much did it all) put the play kitchen together. We left some cookies, milk and carrots out and that was that!
In the morning, Avery woke up and we had to wait on Nolan. He was so excited to see that the cookies had been eaten, milk was gone and carrots nibbled. Then he went right up to the play kitchen and got to work! It was a huge hit. Nolan opened all his presents. We opened Avery's. she is unable to consistently show us her feelings so most gifts went unnoticed. She only wanted to watch her Baby Babble 2 video for the trillionth time. This brought tears to my eyes because it is not how it is supposed to be. But that feeling passed because this is just the way it is. After we opened at home, we went to gramma's and opened more there. then off to Red's aunt and uncles for a fun family dinner with extended family, cousins and 2nd cousins. We did get some cute pictures from the morning and I will end this post with those. Im thinking that every Christmas from here on out will just get better. You never know how things will be different in one year! Here's to 2011!!