Favorite presents

Cozy hammock

Merry Christmas and Happy New Year!!

Here are a few of Molly's favorite Christmas presents. Cute PJ's from the Huff crew. They are so soft that I just want to snuggle her (or steal them). A Colorado hat that Jack bought for her all on his own (with shock and amazement from me as I had no idea he had gotten us all gifts with his own precious hard earned $! ). Brooke put the hammock up in her room and she lives in it now. It solves her desire for sensory input: squishes her AND rocks back and forth! She cranks her tunes on her iPad mini, scrolls her FB friends and life is pretty darn perfect.

No real update on the O2 as we didn't take the tank up to the mountains with us over Christmas as Molly was sharing a room with her brother and he didn't need to suffer the "poofing" sound. She has begrudgingly worn the oxygen the two nights that we have been home and kept it on all night so I think that we are golden until the next blood draw in 3 months that will tell us if this is helping or not.

Hoping to have our annual Christmas video done this week which makes it actually more a New Year's video. However, suddenly I have lost two days of working on it as Molly and I are turning around and heading back up to Frisco so that Jack and a few buddies can ski/board during this week.

It's a good life! xo

It's a miracle that she hasn't cut off the poof balls!

Will she...or won't she?

This should be interesting. The latest blood draw lab results showed that Molly's red blood cell count was really high. The first thought that her doctor had was that she wasn't getting enough oxygen in her sleep (i.e : sleep apnea). The only times that we sleep with Molly in the same room is when we are camping in our pop up trailer or traveling and all staying in the same hotel room. So I don't have a lot of experience with her night time breathing and she might be a slight snorer but it's NOTHING like her dad :) Her tonsils are normal sized so I kinda doubted that her pulse oximeter reading would come back having an issue.

Let me back up. Dr Kucera wanted her to wear that clip that they put on your finger at the doctors office (pulse oximeter that measures oxygen saturation in your blood). Asthmatics and COPD patients are typical of those living with a lower level of O2 saturation. They have low energy and drag during the day and don't sleep well at night. Living at such a high elevation in Colorado could have an impact too though Molly was born here and has lived her entire life at this altitude. Low energy and dragging would not be how I would describe Molly. She has a good level of energy during the day and doesn't seem slow in any way. I, on the other hand, am becoming a candidate for afternoon naps. Do I need O2?

And now she has to wear the pulse ox ALL NIGHT LONG so that they could get a reading over the course of the night. Those of you that have a child with autism will all chuckle as you would think the same thing: There is NO WAY that she is going to keep that thing on. And I don't know if she really understands me when I tell her why she needs to. I kind of assumed that it would be like me wearing my mouth guard post braces in high school. I could barely breath with it in my mouth and it would be clear across the room in the morning where I had hucked it in my sleep. Molly was bound to do the same thing with something squeezing her pointer finger all night.

So I slept in her double bed with her. There were strict instructions "Leave it on your finger. All night. We'll take it off in the morning". Girlfriend slept like a log. I barely slept a wink as I kept looking over to see if she was still wearing it. And she hogged the covers. I couldn't wait until morning. She didn't snore. She didn't gasp for air after periods of no breathing. I thought for sure her O2 levels would be fine.

One week later, we got the call. Her levels are at 78%. Normal is above 90%. She had a couple periods in the night when the levels dropped. I must have actually been sleeping then :)

So now she gets to wear oxygen at night! Bummer.

So bedtime rolled around last night. She hopped into bed eyeballing the big machine beside her that was making a puffing noise every few seconds. Her normally quiet room had a guest. We'll have to come up with a name for that thing. I explained that she needed to keep it on all night long. I asked her if she understood and she said "Yesh" (I love how she says it...gotta video that for you sometime too). She was awkwardly half sitting up not wanting to move too much and I tried to show her that the cord was long and she could move around in bed. She just looked at me stiffly. We said "Good night. I love you". She always says "Too" (that's the shortened non verbal version of "I love you too"). I closed the door and hopped into bed where Brooke was reading. Our room is right across the hall from Molly's. Literally 2 1/2 minutes later Brooke turned to me and said "She just turned off the machine". And he was right, I couldn't hear the hum of it anymore either. So I got out of bed and went into her room. "Molly, you have to leave that on all night long". She shook her head adamantly and said "No". Gotta love her. And can't blame her either. I wouldn't want that thing up my nose all night. But with a little insistence, she let me put it back on. She is such a pleaser that most of the time she tries to be compliant.

Except for that time when I wouldn't let her take out the trash with only two items in it. She fought me tooth and nail over that situation. And she won.

She was tense so I scratched her back. And then her left arm. And then her right arm. And she looked like she might almost be asleep. Aahhhhh. And as I quietly exited her room she turned and looked at me. She was far from asleep and I had my doubts about that hose staying on her face all night.

But then this morning....lo and behold...it was STILL ON!! Yippee!!

Will be interesting to see if we notice any differences in her as she wears the O2 consistently? Am thinking that in all actuality maybe I'll start borrowing it for a few hours of solid nighttime sleep :)

The puffer

Molly and Spencer's 3 year anniversary

I just reread the post from April 29th, 2014 that shared in depth the truly special bond that Spencer and Molly have. I chuckled anew over a few of the stories. You might want to go back and read that one too as it sets the stage for this blog post and the big 3 year anniversary dinner/22nd birthday they had on Saturday.

Homemade strawberry cake

Spencers mom Cheryl reported that for the last few months he has been planning his 22nd birthday. Like three years ago, when this budding romance started, all he wanted for his birthday was "a date with Molly". This birthday was like the movie Groundhog Day. It was EXACTLY the same as 3 years ago. He wanted to go to the same Chinese Restaurant, he wore a plaid shirt, he wanted them to sit apart from the moms, they probably ordered the same exact meal, they didn't talk to each other at all during the meal, and we went back to his house afterwards for cake, ice cream and presents....exactly like 3 years ago :)

And yet, there were a few subtle differences.

This time when Molly scooted into the booth, Spencer went in next to her and they sat beside each other! Rico Suave.

1st date

3 years later

Another subtle difference is that they ordered for themselves and Molly used her "talker" this year. She wanted a lemonade to drink and ordered "Sesame Chicken"and pointed to the sweet and sour soup on the menu. Spencer ordered "won ton soup" and I'm not sure what for dinner. He also wanted egg rolls for an appetizer which I knew Molly would like too. But with the word "egg" in it....she adamantly said "NO" when I asked if she wanted one too. I knew that she would want it but she said "NO!" a second time (with her mouth) so she didn't get one. I couldn't see her reaction when they arrived at the table as I'm sure she was thinking "oh rats, I DO like those".

View from the mom table and blurry like my 49 year old eyes.

What's different this year too is that they ate their food without needing prompting from us. This is huge people as our kids are typically SO prompt dependent and I recall being shocked 3 years ago that they needed us to give them permission to refill their plates. So they ARE becoming more independent! The ultimate goal for sure.

I had to use this blurry picture too to show you exactly how they were throughout their entire dinner if we peered over at them. Immediately their heads were looking at us. Spencer was trying to listen to our conversation. Cheryl would say "talk to Molly", he'd turn his head to Molly and she would turn her head to the wall beside her. So there are still some Rico Suave Dating School lessons to learn (both the male and female classes). Because they both inhale their food so quickly (since no one talked), they were done long before Cheryl and I were. They kept looking over at us like they were ready to go. Once we got "to go" boxes, we were off to Spencer's house to continue the party with cake, ice-cream and presents.

Snuggling on the couch

Mary Poppins was on TV and they both happily settled in to watch it. They looked so cute all snug next to each other. However this is how Spencer likes to sit next to his mom too as his personal space is like glue. But I still think that it's cute that Molly stayed so close.

We then sang Haaaappy Birrrrrthdaaaaaay, ate cake and ice cream, we heard the story of the day Spencer was born, the moms had a little spiced rum cocktail and the kids enjoyed their time on the couch together. It was a wonderful December 12th.

Once in the car on the way home, Molly was SO giggly. I asked her if she had had fun on her date and she adamantly said "YES!"...and giggled some more. I love that these two seem to adore each other. It's not your typical dating relationship as three years later there still has been no kissing or hand holding. But maybe that's better? Love can be so confusing and not having those extra emotional strings keeps it simple. But who am I to say as I'm just the mom?

What draws YOU to Molly

"What is it about Molly that makes you click on the blog to read about her?" was my question posed to you last week. Turns out she has a lot of qualities that lure folks to her and there were some responses that you are interested in Brooke, Jack, and me too.

Here is an assortment of answers with a quick description of the person who shared it:

"The thing I love about Molly is how she teaches all of us to savor the small treasures in life - a new bracelet, a slice of her favorite pizza. It is her happy, positive spirit that she shares with all around her."  

Sarah Magner: My high school friend who spent 5 days at the beach with Molly



"Honestly what draws me to Molly and your posts is the look of peace and joy on her face. This may be just what I am seeing and I am not seeing the times that are not as peaceful and joyous. Which leads me to the question I would ask 'are you as happy and joyous and as at peace as you appear to be in all your pics?", ' is it your family (brother and mom and dad) that bring you this sense of peace?". The pic that I keep going back to is the one of her in the blue t-shirt recently at the doctors office. It is an absolutely beautiful picture to me." 

Margaret Eck: My high school friend who does not know Molly




What I've always been impressed with re Molly is that she seems truly happy. I may be wrong, but I'm not sure that's the case with most ASD kids."

Becky Dirksen: Soul Sista mom of a daughter with autism




"I love Molly's happy energy....it's so obvious every time I'm with her that she cherishes her family and feels so loved....must be why she is always beaming:-)" 

Wendy Ferrara: My cousin who has overlapped a few times with Molly



 "I'm drawn to the joy and pride I feel when she "gets" something. It's great when a lightbulb goes on for her, and I can see the satisfaction on her face that she too knows that she accomplished whatever the task may have been. I love to watch her grow, change and mature. I adore the little nuances of her: her verbal responses, her compulsory tidying up, and her sweet need to please people around her. She is such a delight. I'm so honored to get to work with her!" 

Jill McCracken: Molly's SPED teacher in high school and now her transition coordinator. Jill has been SUCH a gift to us since she started at MSHS



"Kathy, it's not just Molly that drives me to your blogs, even though our one camping trip years ago we fell in love with her! She'd sit outside our camper waiting for Don to come out each morning at Monarch camp ground. But it's just so nice to hear how you as a family have embraced what has been thrown at you. Not everything is perfect but your family is so strong and the love between you all is amazing. You and Brooke have raised 2 amazing kids! Your blogs give insight to others to embrace the little joys in life and that not everything is easy but standing together you can move ahead. I love the sibling bond between Jack and Molly. Jack is going to be an amazing adult in part by his parents and his experience of growing up with Molly. I really think you should write a book because so many of us look forward to your blog posts!"

 Jill Markworth: Teacher friend  who moved to another school district when the kids were young but we've stayed in touch via FB





"Molly's wonderful swimming skills and love for water caught my attention (at Valley)."  

Molly Stevens: School Board/pool friend/ Crossfit extraordinaire gal




Although Molly is part of our family and we've watched her grow up through photos and short visits, last summer when we visited and "met" the maturing Molly I think the thing that impressed me most was that she was so relaxed. Remember how she hugged Dan spontaneously?! She seemed to have no trouble letting us stay in her room--for various reasons, I know--but she was just natural and normal and relaxed with us. I liked that a lot. She seems to be a people person, which in a family like yours (and by extension ours) is a really good thing.

 Deb Secor: My moms cousin so my second cousin?




"Kathy, I think that you are very transparent about all of Molly's successes and challenges and this makes your story very accessible to all of us to learn and understand a bit more. Because you and your family are open, this encourages us all to want to be more engaged in her world. I think people's general nature is to honor other's privacy. You allow us in and share. Because of this, you let us ask questions and it never seems awkward or an invasion. Your stories have made us all a bit more empathetic and more engaged in the conversations about autism. As we have to respect those that are not as transparent, we can give you a high five for sharing Molly with us all. xoxo" 

Martha Marzolf: Realtor Extraordinaire and dear friend





"I'm drawn to Molly because I feel there is so much inside her. If I just am patient and watch and listen maybe I can catch some of it. I always feel she knows me even though I don't see her frequently and that she is making her own polite internal dialogue. Kinda like " oh Hi lady across the street with big dogs who talks fast and smiles too much. How are you? Ok. I'm a little busy with........and need to go. Bye" 

Tina Vidovich: Middle and High School Principal with an autism program and wonderful neighbor




"I love seeing her progress and her independence (such as her leading hikes and venturing out far ahead of you). It's just fun to hear about all your family interactions. It is a real privilege, Kathy, to walk with you and Brooke through all the events of your life!" 

Jean Bodman: FOREVER Bell family friend 




"Molly has grown up beautifully, Kathy...she is full of courage (and happiness) and you should be very proud of her!"

 Dana Connor: Soul Sista autism mom whose son Henry went to school with Molly. We were all devastated when he died of a seizure a few years ago.





"I have to say, I am more curious about what draws people to you? I am so wildly attracted to the way you share I can hardly stand it. Years ago we did a yoga class together and you stopped in the middle of buzz breathing ( remember?) to tell us you might have figured out why Molly hums-to shut the rest of the chatter out. I think about that epiphany at least once a week. I for one am drawn not only to your willingness to share but your willingness to go there. Can you imagine what a delicious world our kiddos would live in if each and every one of us were willing to explore that place in our kiddos brains (autistic or not)? I miss all of your faces!#bellfanclub" 

Ashley Jones: Dear neighborhood friend who dogged us and moved to Iowa. We miss their faces too. 

 "I posted a comment on your blog, but I will shorten here, basically, we are interested in her because you put it OUT THERE. You have let us in to get to know Molly and want her to succeed and you have shown us your hopes and dreams for her. I cannot wait to visit the tiny house village you WILL create! Basically we love her because you are awesome in sharing her with us."

 Leigh Bhe: (pronounced LEE BEE which I love). My college friend

"I don't know Molly, but I know you're an amazing mother. You always inspire me!"

 Kim Brewer: My college friend

"Kathy, I have to say that I'm drawn to your posts for a number of reasons. First and foremost, I have no experience with autism, and so it's educational and eye opening to read your posts and to have a glimpse into your life and what others must deal with. I'm drawn to your posts, as others are I'm sure, because you are candid and warm and insightful. The creativity that you use in sculpting a life for Molly, bringing all the best for her, is remarkable, and I stand in awe of all that you have done for her. I hope to use some of your ideas and energy to craft a beautiful life for Lily as well. Sadly, we don't really know Molly, except for your posts, but we love what we know of her." 

Jean Griesan: Mom who I met in MOPS but then reconnected with after one of her young twin daughters suffered a TBI. I'm so full of admiration for their family.

"When I was in college, I listened to a cassette where this family shared their story of their daughter who could never speak, smile, walk, or pretty much do anything, yet when she died at a young age, all these friends told how their little girl changed them. Even though, Molly, does much more than their sweet girl, I have often thought of this story in light of Molly. It is like there is a secret place that kids like Molly hold. It's almost like this inability to put judgement on anyone. It's an innocence that can't be conjured up or worked on or developed. I love that." 

Holly Walls: Jack's piano teacher, fabulous neighbor, amazing blogger "Writing in Pencil" if you ever want to get caught up in a great story and family. I LOVE her "secret place" description.

"Regarding Molly, you can't put into words, evaluations or scales that which is truly pure joy, vulnerable innocence, profound humility and raw pain. Molly will always bring others to a place of wonder because you can't really know her and you will always be surprised by her. She elicits a certain kind of love that hovers under language and thought." 

Maura Hall: Molly's speech therapist that came out of retirement to help her in high school too. AMAZING gift to us all. She knows my girl so well and this quote is deep and true and made me cry.

Self portrait

There you have it amazing friends and family! Your taking the time to answer my question is such a gift to my heart as I search for words and understanding of autism and my daughter that lives with it.