Day 29. Year 3.

Today was an emotionally draining day for me.  It started out with Ally coming downstairs crying this morning saying that her throat hurt so bad... to which of course I responded with a trip to urgent care. One negative strep test later (thank goodness!!) and a Chick-Fil-A meal happier, I sent my Ally Belle back to school. Phew. Hmmm... now that I think about it.... was that little girl playing me? She got some good 1:1 mommy time, some snuggles and extra hugs AND Chick-Fil-A... and all it took was a throat swab. Well played Ally. Well played... No, I'm just kidding... I don't normally see my kids crying in the morning...  She needed me and I was there for her. Period.

I called my mom to chat for a few minutes after I dropped Ally off at school... and the minute I heard my mom's voice, I broke down sobbing. I needed her and she was there for me. Period. Sometimes it's so hard to try to be strong. Sometimes it's ok to be weak and sad and frustrated and heartbroken. I feel like we are at a crossroad with Vicki. And I keep asking myself, 'what is best for Vicki?' What does she need? How can I get her what she needs? What path will best lead us? Vicki needs me and I will be there for her. Period.

I am reminded of one of my favorite poems by Robert Frost....

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

Lots of other things happened today... some very stressful, others very peaceful... and I am, as always, very thankful. After we put the kids to bed tonight with our I love you, you love me, we're a happy family song, I flopped down across my bed and just let out a big sigh... What a day. The good, the bad and the ugly. I had my phone in my pocket and decided to just get lost for a few minutes in facebook land. I thought I would just do a little friendly stalking, see a few yummy pictures of food, laugh at a few of those rotten egreeting cards (like... never laugh at your wife's choices... you are one of them.), see some cute pictures of my friends' children, long for some of those beautiful sun, sky and sea vacation pictures people post... and just not think for a few minutes. I just wanted to relax and not think about the meetings we had today, or the meetings we have scheduled for tomorrow. I didn't want to think about choices we have to make, fights we have to fight, roads we have to choose.

And in that moment when I started scrolling down my friends posts, I saw it. A post that made me stop in my tracks. A post that made me gasp. A post that made me hug my husband a little tighter, and tip toe back into my kids bedrooms to get a glimpse of their beautiful sleeping faces.

This post... made by a friend of mine who is married to a friend of mine. Friends that I had a lifetime ago... before I had the awesome responsibility of being a mommy. Friends that when I think of them, I think of carefree times, back when we were all young and the world was at our fingertips... we could do anything we wanted to do, be anything we wanted to be. We all met in college. One of the many crossroads in our lives.

Anyway... back to this post. The husband posted on his wife's timeline. "This is _____. ______ died today at 4 pm............. and the post went on. My friend. She was 2 years younger than me. She had beautiful red hair and the kind of smile that just lit up her face and the room she was in. I remember how much spirit she had in her. Anyway... it was just the other night that I saw a picture come up on my news feed that she had posted... a picture of a swollen ankle... for she had broken her hip a few weeks ago and was still laid up, slowly healing from her break. She has 4 young, beautiful children who share that same smile that their mom had. She died suddenly today, and from what I can gather, it was from a pulmonary embolism from complications from her hip fracture. And just like that. A beautiful mother, wife, friend, and human being is gone.

And suddenly, my emotionally draining day seemed very insignificant. I am here tonight. I get to have my husband wrap his arms around me. I get to have my kids roll their eyes at me, whine at me, laugh with me, love with me, and just be with me. What greater gift is there in life?? 

This was not the post I meant to write tonight. But it was the post I needed to write tonight. Contingency plans. Tomorrow morning a husband will be waking up without his wife lying in bed next to him. 4 children will be waking up without their mommy to make them breakfast, to comfort them when their throat hurts, to wipe away their tears and their pains.

I am so lucky. I had the gift of today. And I hope I have the gift of tomorrow... I will be thankful for the gift of life. The gift to attend Vicki's ESY and BIP meetings... The gift to do the mountains of laundry that are piling up. The gift that allows me to tackle my to do lists... and be able to call my mommy and cry to her. The gift that allows me to feel my little ones arms hug me tightly around my neck and whisper I love you mommy... The gift to be standing at a crossroads and be able to choose a path.

 Ally and I read a little from Where the Sidewalks End... today while we were waiting at the doctor's office...
Listen to the MUSTN’TS, child,

Listen to the DON’TS
Listen to the SHOULDN’TS
The IMPOSSIBLES, the WON’TS
Listen to the NEVER HAVES
Then listen close to me—
Anything can happen, child,
ANYTHING can be.
~Shel Silverstein

Anything can be. I believe that. Vicki shows me that day after day. I believe that anything can be.
I believe in Vicki. And I believe in me.

Rest in peace my dear college friend. In your sudden death you have reminded me about life. And about living. And about being.

xoxo

Day 28. Year 3.

I can feel myself starting to wrap up this month already. I'm ready to close the book on April and start a new chapter for May... Lots of things coming up. Meetings galore for Vicki's school. More doctors appointments to go to and more labs to be drawn.. crossing our fingers that IVIG is in Vicki's future. We have Ally's First Communion next weekend with family coming down to celebrate and pray with us. Then it's Vicki's birthday, and the day after that Joey's birthday, laser tag and sleepovers.  Throw in Mother's Day. Add a few more birthdays to go with that... some graduations of some very special people in our lives. A few cups of soccer, scout events, dance, gymnastics, field trips, my husband out of town for a week for work... gotta fit in a pedicure so Vicki will be happy! (didn't have time the other day...) lots of baking- to Vicki's delight. And add some yard work, deck resurfacing, painting in the master bath and ordering our kitchen countertop. That should about do it. I'm sure there will be a few little surprises along the way. It wouldn't be a good book if there weren't twists and turns and bumps in the road. Hmmmm..... Maybe I don't want to close the book on April yet... just doing that little looksy into May kind of just made me tired and freaked me out a little bit.

I'm sure I've told you before that the first of the month is one of our 12 favorite days of the year. :)  There is something about a clean calendar. Vicki loves it too... it's all fresh and open and just stretched out there daring you to jump in and fill it up. As long as I am armed with white-out, I'm good to go. Can't let May get too messy! I'm hoping we get some answers in May. I'm usually pretty good at writing about everything that is happening in our lives when I do this blog for the month. I try really hard to give you a front row seat. But I've kept a lot inside this month...partly by choice and partly because I feel like I have to. At least for right now... I really don't mean to be so vague, but I will say this... If you could say a little prayer this week for Vicki, for mommy and for daddy, and for all those that work with Vicki and love Vicki. Like I said before, autism sucks.  There is so much that goes on below the surface and behind the scenes. I've tried to give you a quick little tour... but it's almost like... I was thinking... those backstage tours at Disney? I've never taken one before.. And I'm not sure I would really want to. I liked experiencing the magic of Disney. I don't want to know what it takes to give me that magic. All of the work and planning and coordinating. I just want it to happen. I don't want to know how it happens. It's probably pretty overwhelming. You know what I mean?

I've gotten so many fantastic notes and emails and texts and calls and letters from so many of you this month. It's truly been an amazing experience for me. For you to allow me into your lives and for you to care so much about ours... what a gift you have given me. And there is something in every single note that pulls on my heartstrings. And makes me think. And makes me appreciate. So thank YOU for making me dig deeper, making me feel more, and allowing me to share with you feelings that I didn't even know I had. I had a conversation with someone extremely close and important to me a few weeks ago and it really made me sit down and question my feelings about autism. And here's what I came up with...

I wonder what would happen if....

my husband and I took Vicki to one of her many doctors and they put her on a new medication, like they sometimes do... We discuss the medication and the side effects and what we hope this medication will accomplish. And I would be lying to you if I told you that I didn't still hold out some sliver of hope for each one of these new meds... Hope that it will be our Vicki that is that story or video that circulates around facebook and gets shared a gazillion times because it makes you feel good. Hope that this new medicine will be the one that turns the key and opens the door in Vicki's mind... and then all of that knowledge and all of that brilliance and all of those words just start pouring out of her. And she's cured of autism. Those kinds of stories, to me at least, are so hard for me to read and watch and think about. I remember when Vicki was 4 or 5 and we were at a very important developmental pediatrician's office who was looked upon very highly in the field of autism. We sat in her office and she was typing away at her computer;  she showed us graphs and numbers and I felt like I was sitting in an infomercial. 'These kids' respond this way to my treatment. One day I gave this kid a shot of .... and two minutes later he was speaking full sentences. It is so hard to fill your heart with that and then think, well... why not my kid? You gave my kid that shot...Why isn't she talking a mile a minute right now? Why didn't she 'recover' from autism? We gave you money. Money out of our pockets. Not money from our insurance. Money from our future. Please, please, please... just let us be one of those stories.

I know Vicki wouldn't be who she is today if she didn't have autism. I know that some of the very things that I love about her are because of autism. And I know that her personality would be completely different if she didn't have autism. And I know that I would be completely different if I didn't know autism.

I'll use the analogy of Vicki's autism with Joey's asthma. Because they are both medical conditions that can wreck havoc on the body and the mind.  Do I wish Joey didn't have asthma so that portions of his life could be easier? Absolutely! So, if someone were to give me a pill that would make autism disappear for good, would I give it to Vicki? Absolutely! Would Vicki be the same? No. BUT... there are so many things that autism has stolen from Vicki, from me, from our whole family... I know that Vicki doesn't even know what could be... or what she is missing, or for that matter what she is beautifully oblivious to. Or does she know?  Is Vicki lucky?

I think Vicki is beautiful and I love and accept EVERY little thing about her. I do. With every fiber of my being. And there are sooo many things that have made an impression on my soul that are directly because of autism. And in a strange way, I am grateful for that. I don't want to change who Vicki is. I embrace every knee slap. Every fruit adoration. Every.... but could I do without worrying for 11 years and probably many more about potty training and cleaning up poop that I would never wish on anyone. And safety issues and behavioral tantrums and worrying about what will happen to Vicki when I die. I could live with out that. I hate autism for that. I hate autism for the sadness that I have seen in her eyes that I will never forget. But on the flip side, I see a gleam in her eyes and the unabashed joy for life that Vicki has that could possibly be a direct result of autism. I embrace autism because I have to . I embrace Vicki because I want to.

So that's about it tonight. I don't know what I just wrote. But I do know that today was a good day. I guess I should write some more 'feel good' posts... Because today I felt good. Vicki felt good. She was happy. I was happy. It was good. Maybe I should post a video to you tube. I wish I had made one of today. So you could watch her fold her hands and pray this morning. So you could see her smile when she did her inspection of the fridge today. So you could see her laugh and laugh and laugh while watching Gnomeo and Juliet. So you could see her make a jelly and baloney and cheese sandwich with the play food and then pretend to eat it. So you could see her put a princess puzzle together today with Ally. So you could have seen her face when she saw Joey home this morning. So you could have seen and heard her when we painted an egg carton flower wreath. It was so beautiful and amazing. So you could see her say, 'mommy feet' and smile at the mere sight of my feet. Ahhhh there are so many things I would have pushed the play button for today. And a few that I would delete as well. I would delete the part when I had to change her sheets again this morning. And the part where she just sat and stared off into space. And the part where she had a poop accident. And the part where super mommy comes to rescue to unclog the toilet again.

So, I guess there are parts of everybody's day that you wish you could (1.) Record and share with the world and  (2.) Press delete and hold the rewind button down for.

Sorry. I am rambling on a lot tonight. Probably because I know I have to do some research tonight after I am done writing, that I just don't want to do or think about. Or it could just be that my brain had lot to be dumped out tonight. Sorry for clogging your time up! Ha ha... Poor excuse for a joke at one the morning. I think I'm hilarious right now, but when I re-read this tomorrow morning... more than likely, not so hilarious. :)  Thanks again, as always, for listening and reading and reading and reading....

xoxo

Day 27. Year 3.

Vicki may not speak a large volume of words, but the words she chooses to speak, speak volumes to me.

Joe. Joe, please. Joe.

Like I've said before, we do so many things together as a family. A family of 5. Daddy. Mommy. Joey. Vicki. and Ally. Our little family. When we don't have organized kids activities on the weekends, we tend to jump in the van, the 5 of us. And just drive. As scheduled as we have to be, our weekends allow us to be a little bit more.... flexible and as 'spur of the moment' as we get. I'll put generic visuals on Vicki's schedule... and as long as 'restaurant' is one of them, she's usually a happy camper. :) Vicki loves going for rides in the car. So do I. Sometimes our weekend afternoons read like this:  Car. Walk. Store. Special Activity. Restaurant. Home. This gives us a little built-in wiggle room. When we have no real plans, those are sometimes the best plans of all. We discover new little mountain roads, the kind that when you crest a little hill, you leave your stomach behind you. The kids giggle and yell, 'no hands daddy.' . I stick my head out the window so I don't get sick. It's so much fun. :)  No, seriously, it is. We'll discover new parks, new hikes, new antique stores, new wineries. (As long as the wineries have oyster crackers and apple juice, we are good to go!) Those are the kinds of days I live for. The moments that we make together as a family. Does it all go perfectly? Nope. Is there whining? Yep. Usually from all 3 at some point. Is it worth it at the end of the day? Absolutely! And since my husband is at the helm... my stress level and fear factor go down exponentially.

Back to my story. Like I said, Joey was not home this weekend. He went camping with the Boy Scouts. I love when these opportunities arise for him. And more and more of his weekends are spent like this. Growing up.  So the 5 of us become 4. (sniff, sniff, sniff... It gives me just a little sampling of what growing up means... and I don't like it, I don't like it one bit. I wish my babies could be my babies forever on one hand... but on the other hand, I am filled with such pride and love for the young man {and young ladies} that my kids are growing into.) And on the other hand... wait... I guess I used both my hands, I can't have any more feelings... :)  Wish it were that easy.

We had an open afternoon. So we did what we love to do. Put on Vicki's schedule: Car. Walk. Store. Special Activity. Restaurant. Home. And we began our afternoon. But this time there were only 4. Daddy. Mommy. Vicki. And Ally. And we all noticed. It's so different when one person is missing. The dynamics change. That person leaves a hole. :(  And Vicki notices. We parked at the mall so we could get the tires rotated at Costco. As we were getting out of the van, it began. Joe. Joe, please. Joe. And Vicki has this almost panicked look on her face. We tell her that Joey is at Boy Scouts and he'll be home 'tomorrow'. Tomorrow. She repeats. And gets out of the van. After the mall and Costco's we head to another store. And it's the same thing. Joe. Joe, please. Joe. We tell her that Joey is at Boy Scouts and he'll be home 'tomorrow'. Tomorrow. She repeats. And gets out of the van. We stop at Chili's for dinner. One of Vicki's favorite restaurants. She had asked for pepper the night before, so we knew that's where she wanted to eat. Just as an aside, we love Chili's. Chili's has a great kids menu and their menu has pictures of each item along with the word. Bravo Chili's. Bravo. And Vicki loves their corn on the cobb on a stick. She thinks it's the most fantastic thing ever. :)  We pull into Chili's parking lot. And yep, you guessed it. Joe. Joe, please. Joe. We tell her that Joey is at Boy Scouts and he'll be home 'tomorrow'. Tomorrow. She repeats. And gets out of the van. When we get home and it's time for bed, yep, you guessed it again. Our little bedtime routine usually consists of the 5 of us gathering in Vicki's room. We do a corny little group hug and sing, I love you. You love me. We're a happy family. With a great big hug and a kiss from me to you. Won't you say you love me too. I love you. I love you. I love you.  Before we start the song, Vicki looks around. Joe. Joe, please. Joe. We tell her that Joey is at Boy Scouts and he'll be home 'tomorrow'. Tomorrow. She repeats. And we sing our song.

I really don't want to break down and cry right now. So, I am not going to be as detailed as my mind currently is.... There are weekends like these, where Joey is not home. It's so good for Joey, I know this. It really is. It can't be the 5 of us forever, wish as I may sometimes. A few months ago there was a Saturday evening where Joey was on a camping trip and Ally was at a birthday party or something. And suddenly the 5 of us became 3. Daddy. Mommy. And Vicki. I actually have a lump in my throat just typing those words. Daddy. Mommy. And Vicki. I know that Joey and Ally will grow up. I know that they are creating lives of their own. I know that I need to let them. I'm pretty sure this is one of the hardest parts of parenting... and it gives me a glimpse into the suddenly not so distant future. And I am scared. And I am proud. And I am sad. And I am happy.

And I think of Vicki. And my heart feels like it is being wrung out. Daddy. Mommy. And Vicki. What will happen??? She loves her brother and sister so so so much. She needs them so much. What does Vicki feel when she is sitting on the couch, looking around for them? What will it be like someday? When they are not there?  I know Joey and Ally have to grow up. They have that right. And Vicki will grow up. Daddy. Mommy. And Vicki. There will always be Daddy. Mommy. And Vicki. Someday there will be 3 with occasional visits from the other 2. What will happen when I can't say they will be home tomorrow??

I have so much more to say on this subject, but my heart just won't open up to allow me to write anymore. For right now, I am just thankful that tomorrow is today.

xoxo

Day 26. Year 3.

Mornin'.... I did it again... that sleep thing. :)  Again... my apologies for a late post (especially to those who, during the month of April, make reading my blog part of their daily routine... you know how much I thrive on routines... and I hate messing one up!)  I have to warn you... I feel like this post will be all over the place, I will try to reel my thoughts in, but already I've used way too many of these .... ..... ha ha!

I kinda feel like talking about mom guilt this morning, all the while mixing in a little bit of grief as well. Everybody, at some part of their life, has probably experienced a healthy dose of both. I know I have. And it hits me at the oddest times. It can come in gentle waves lapping at the shoreline and it can come in massive typhoons.

Let me give you an example. I was outside quite a bit yesterday doing some yard work and when I woke up a little bit ago the first thing I did was walk over to the kleenex box in the kitchen (ok, that was technically the 3rd thing I did... after peeing and making a cup of coffee). Anyway, as I was getting a kleenex out I glances over at the kids' soccer team pictures that they just got back last week. You know those little cardboard collages... one with the team picture on it and one with an individual picture... always with the kids smiling painfully and squinting because they have to look into the sun. I glance quickly at Joey's and Ally's pictures and then it hits me... the typhoon of mom guilt and grief all at once... I hate, hate, hate that there are only 2 sets of soccer pictures up. I have 3 kids. And only 2 sets of pictures. Well, at least I am already by the kleenex box and my eyes are already puffy from allergies... this little cry won't cause too much more damage.

I feel so guilty sometimes.... guilty because Vicki hasn't gotten to experience the fun of squinting into the sun to smile with her soccer team. I try, like every parent does, to treat my kids equally... you know... count the number of presents that each one has under the tree at Christmas... treat them all equally special on their birthdays... spend equal amounts of money on them for activities and for gifts. Spend equal amounts of 'quality' time with them.... Ha. You know yourself, that's just about impossible to do... I mean even just from the basic standpoint of ... Joey likes video games... Ally likes crafty things.. Which is more expensive? A new xbox game or a set of twist up crayons and a new journal. I don't want them to think I love one more than the others... It's such a fine line to walk. And there is always some guilt associated with decisions we make.

And with Vicki... there is so much guilt. I know she can't participate on a traditional recreational soccer team. I know she can't. But, man, is the guilt there this morning as I look at those 2 sets of pictures. I never want to say, 'I know she can't do it'... Because what does that say about me? I don't believe enough in my daughter? I don't have enough confidence in her? Because when I stop believing... and I stop trying... .then who will??  How do I know? How do I really know? Vicki can't tell me the activities she wants to participate in. Well... that's not true, technically. I know for a fact she loves her adaptive dance class. I know for a fact she loves cooking. I know this because there are moments, moments where I see that big, beautiful smile of Vicki's. I know that because I see that twinkle in her eyes. I know that because I see the knee slap squeal she does. I know that because she is with me.

We've had Vicki involved in special olympics in the past... So far we've tried special olympics swimming, track and field, and cheerleading. They have a soccer program, but we've never tried it yet. But over the past year or so, we've pulled back from some of those activities... Why? There are so many reasons... And I feel guilty for so many of those reasons too.... I know there was a time when she just couldn't participate. Because we couldn't even get her out of the shower in the mornings. That's improved now. So what's keeping me from doing some of these activities? I'm going to say fear, that damn fear again. It is like a big elephant in the room. That's definitely a motivator, or non-motivator for me. And also... I can just tell sometimes... Vicki gives me some clues... some body language clues that tells me she doesn't want to do something. She holds her ears. She withdraws. She scrunches up her shoulders and caves in on herself. She yells. She squeals. (And not in the good, happy squeal way). She fights us. She doesn't want to get up and participate. She sits down and won't move. It's hard. It's hard because sometimes I want her to so bad, because I've seen that moment on her face... that moment of pride in herself. That moment a few years ago when she ran her first 50 meter dash... my husband on one end and our aide on the other end of the race waiting with open arms for Vicki. Me and Joey and Ally in the stands cheering her on. Gosh, that was a hell of a moment. I remember it now. I have tears in my eyes now. That's why we try things. For that moment.

So, why not now? If I'm being completely honest, sometimes it's just easier. It's just easier not to try. After everything our family has been through in the past year, it's just easier not to try it. Because Vicki doesn't know, right? She doesn't know what she is missing... Does she? She never asks to do something. Of course, she doesn't. So I shouldn't feel guilty, right? But I do. But then, on the flip side, I would feel guilt over Joey and Ally as well. They deserve something normal. And easy. And logistically... you know as a parent, it's never easy. 2 different soccer teams, 2 sets of practices during the week, 2 sets of games on a Saturday morning... 2 different places, usually one game on one side of the county, the other on the other side... So my husband goes one way with one kid and I go the other way with the other kid. Where does that leave Vicki? Home with an aide? Working? Logistically, right now... it is impossible for us to go to 3 separate things at the same time. We need my husband there with Vicki and her aide.. She would not be able to get through a soccer practice without at least my husband and her aide... and having 3 people there would be even better. And right now... it would be torture for Vicki and for all of us to sit through a soccer practice... We will sometimes kick the soccer ball around with Vicki. She'll maybe kick it twice before she's done. And after that minute, she is done. And she will not do any more... And what would happen to Joey and Ally if we all had to go to a soccer practice that Vicki probably wouldn't participate in for more than a minute? Would they have to miss their soccer games? Would they not have anyone to cheer them on from the sidelines?  I would feel guilty about that too...

I've always prided myself that we do things as a family. The 5 of us. And sometimes the 6 of us, depending if we have an aide along or not. And we try to find a balance. Some early morning soccer games we do let Vicki stay home with her aide and work. Because she is happy. And content. And other Saturday mornings we will all go to the kids soccer games, spread out a blanket and bring a princess coloring book for Vicki. And I'll prompt Vicki to yell, Go Ally! Go Joey! And she does.

Guilt and grief. They go hand in hand. Some days I can't feel one without the other. Guilt over not trying. Grief over not succeeding.

Well, today is an amazingly beautiful Saturday morning. I will tuck both guilt and grief into my pocket for the day and just try to enjoy it. And it's funny with all of the soccer talk today.. we don't have any soccer games to go to today. Joey is on a camping trip with the boy scouts, he left last night and won't be home until tomorrow... And Ally has first communion practice today, she had a soccer game during the week and doesn't have one today. No soccer today. Our afternoon is wide open after first communion practice... what will we do? What will we do? Something that hopefully won't make me feel guilty or grief-stricken... and something that will make that twinkle appear in Vicki's eyes. Yes, I live for that twinkle. And I will do everything in my mom power to put it there.

xoxo

Day 25. Year 3.

Some days you just want a break, you know?? Just a little time out. To hit the pause button... the mute button... the power off button... Just for a minute. Everybody wants to whisper those 4 words at some point... Calgone Take Me Away...

I would love a little break from autism. Not from Vicki. From autism. Oh who am I kidding?! Just because Vicki has autism doesn't mean I can't think of her like I think of Joey and Ally. Do I want a break from Joey sometimes? Sure. Do I want a break from Ally sometimes? Sure. So, do I want a break from Vicki sometimes? Yes. I guess I do.
Does that make me a bad mother? I don't think so. I think, or I hope, it just makes me normal and human.

But here's the kicker... with autism. There is no real break. Even when the kids are at school... autism is still with me. Hovering over me, smothering me at times... The 6-ish hours that the kids are in school... I think about autism way too much. And autism plans my day way too often. I drop the kids off at school and I go home. Autism greets me. Diapers and garbage to throw out. Sheets to wash. New visuals to laminate. Doctors to call. Appointments to schedule. Medicines to order and pick up. Updates to write. Insurance to wrestle with. Research to do. Phone calls to make. Aide schedules to prepare to make sure every waking hour is accounted for and covered. Behaviors to muse over.
And this month... as much as I love writing, and as much as this blog is for me... it also becomes overwhelming. Because it makes me think of autism even more than I normally do. It makes me wrestle with feelings at 2 o'clock in the morning instead of sleeping.  Ahhh....That was a pretty good pity party. Thanks! ;)

OK... back to my break. It wasn't calgone that took me away today. It was Ally. And it was much needed. I had already done my 'homework' and the day was as 'planned' as a day can be 'planned'. I had an aide scheduled to work with Vicki. I had my husband getting home and taking Joey to soccer practice, as long as traffic didn't get in the way with my plan... And as an added bonus... I asked my husband to take Vicki and her aide with him and Joey to practice at the park. The day was just too pretty to not enjoy it. I wanted Vicki to enjoy it.  And with my husband there, I could breathe a little easier... I wasn't worried about Vicki dropping while walking around the track. I wasn't worried about Vicki playing on the playground. (Well... ok... even with my husband and Vicki's aide... so a 2:1 ratio for Vicki... I still worried. Just a tad bit.) In case you can't tell this about me, I like to worry. It's what I do. And I do it very well. :)  I've always wondered what I was good at... I can't sing. I can't draw. and so on... But, boy can I worry. :)  I am an expert worrywart. I'll take it.

Anyway... Ally took me away. Ally gave me my break today. We went to her gymnastics class... like we usually do on Thursdays... And instead of rushing right home after class (and a stop a Chick-Fil-A!) since no one was going to be home, we decided to just meander. I don't get much of a chance to meander. Or to be spontaneous. I am always planned. Always a little ball of stress. Always plotting my every move and Vicki's every move and how Vicki could/will react to a blip in the day... So today after gymnastics... Ally and I just hung out. We didn't do much... but it felt like we did everything. In reality we took an hour and went to Goodwill and to the Dollar Store. They were close by the gymnastics center and we both love a good bargain and a good find. And we found both today. And along with that, I found a little piece of myself today... and I am grateful to Ally for that.

We looked through toys. We looked through knick-knacks. We looked through clothes and purses. We looked through books and videos. And my goodness did we have fun. Discovering. Enjoying. Laughing. Smiling. Being. I let Ally try on some heels that were way too big for her. She strutted up and down the aisle with those too big pink heels on, with a scarf around her neck, and a lace/pearl choker necklace on. She was wearing her leotard and shorts from gymnastics. And she was rockin her Princess Leia hair buns today.  She tried on knee high black boots. She tried on wedge sandals. She tried on dresses. We found some decorations and fabric for her Barbie house. That hour was so needed for me. And her.

I just needed some mother/daughter chill time. I needed to not have it be planned or scripted. I needed to not feel anxious. I needed to not be afraid. I just needed to let my guard down a little. And here's where I feel terrible. I needed Ally. I don't feel terrible that I needed Ally. But I feel terrible because Vicki couldn't give me that. And that is so hard for me to accept sometimes. Vicki gives me so much. But she couldn't have given me that hour that Ally did. It wouldn't have felt the same.

I know that you can't feel the same things and do the same things with each of your kids. I don't think Joey would have been able to give me what Ally gave me that hour today either. ;)  But you know what I mean?? It's just so hard to love something so much, and need something so much and be grateful for something so much. And experience that blissful hour with my daughter. And it's so normal. And so... I don't know... it's so easy. And free. And easy. And at the same time... I experience heartache and grief and sadness because no matter how many pictures I could (and have) put on Vicki's visual schedule or how many social stories I could have had. Or how much I could have talked to her about it before hand... it just wouldn't be able to happen like that. (I know because I've tried. Many times. We can have moments. And I live for those moments. I really do.) It's just different. How can I be so grateful and so grief-stricken at the same time?

Since I started this post tonight, I haven't been able to get a song out of my head. So, I'll share it with you. Do you remember that sitcom in the 80's...with Nell Carter? Gimme a Break? 
If not, let me refresh your memory....And you're welcome :)

Won't let em get the best of me
Wo wo wo wo...
Gimme a break the game is survival
Gimme a break and plan my arrival
Gimme a break for heaven's sake
I've got to get a piece of the cake...
Hey Gimme a break. Gimme a break.

Thanks, as always for listening... And you know what? Just singing the words to that song make me think of Vicki... No, not the gimme a break part now. I had my break. Now... I want to spend a blissful hour with my daughter Vicki. I think we'll put 'baking' on her schedule tomorrow... maybe it's time for a cake. No.. we just had cake for Ally's birthday... maybe a cheesecake. Yes. A cheesecake. I will spend a blissful hour with Vicki where she is the most happy and the most free.... in the kitchen. Discovering. Enjoying. Laughing. Smiling. Being. Yes. That's what we'll do.
xoxo

Day 24. Year 3.

You know the sound a child makes when they are coming down the stairs? The pitter-patter of their feet hitting the stairs? Thump, thump.    Thump, thump, thump.    Thump. Thump. Some mornings I love hearing that. Other mornings not so much... I think it totally depends on the time of the morning that I hear that pitter-patter and, of course, my mood. Some mornings the pitter-patter is slow and deliberate, like when they have to go to school... other times it's quick and playful, like on Christmas morning or their birthday... But, no matter what the occasion is, no matter what my mood is no matter what time it is... that sound is comforting to me. It's familiar. It's a new day, full of possibilities with my little loves...  But yesterday morning (and my pronoun implies, that I did indeed go to sleep early again last night... sorry for the late blog post again!) the sound coming down the stairs frightened me. It didn't sound like the normal pitter-patter of my kiddos little feet. It was more like thump. thump. Thud,   th th th thud,   thud. Crash. And I went running. My heart was racing and I was freaking out. Ally. Ally. Are you ok? As I was running to the stairs I was holding my breath for the crying to begin. And I was holding my breath for no crying. My hands were shaking. It sounded so bad. I got to the stairs and I see Ally slowly walking down the stairs, sleepily holding onto the banister with her mickey mouse blanket draped around her. Just like every other school morning. I swept her up in my arms and hugged her and hugged her. My hands were still shaking. Are you ok Ally? Yeah, why, what's wrong Mommy? Nothing, I said. It was the oddest thing. Both myself and Joey heard the thudding on the stairs and he came running too. And she was fine. Thank goodness. I still can not figure out what happened... was there something on the stairs (sometimes we'll put things on the stairs to take up or down the stairs) that fell down and made that horrible thumping sound? Was she sleeping walking down the stairs and missed a few steps and just got up and kept going? I have no idea. It was the strangest thing. I am thankful that I didn't find her in a little heap at the bottom of the stairs... we've had our share of missing a step or two and taking a few little tumbles... and the older we all get, the harder the fall gets...

This 5 second non-event shaped my day yesterday. And made me think about what could have happened... And that made me start thinking about things I think of every once in a while then push to the back of my mind. Things that I should think about and plan for but am afraid to do so... contingency plans. We all should have them and make them.... what would we do if? What would happen if? Prepare for the unexpected. And so often I don't want to think about the unexpected because it frightens me. And there is that feeling of indestructibility. Nothing will ever happen. That wouldn't happen to me... we're all good.

But freak accidents do happen. Bumps in the road do occur. Things don't always go as planned. You would think that as much as I have to plan the day for Vicki... I would be quite the good planner. I'm not, though... Things happen and sometimes they blindside me. From the smallest of things (I am out of the spray we use for Vicki after her shower, now what?? Can we get through the day? Will she be able to finish getting dressed?) to larger things (what would I have done if Ally had fallen down the stairs?? If I had to take her to the doctor immediately? What would I have done? Vicki was still asleep in bed, she would have been expecting me to come in with her schedule and start the day like she normally does... get a shower, go to school... etc... She would not be expecting me to yank her out of bed and throw her in the car and go to the hospital... And it's these things... what would my plan be? Who could I call that could just drop everything and come over? Our family is 5 hours away. The aides that I have for Vicki live 25 minutes away. And what could anyone have done if they did come over? Vicki hasn't been able to get ready for anyone else but me in the mornings for months and months now. Her diaper would probably be soaked... Would anyone actually be able to help? Would I have been able to get Vicki in the van myself carrying a hurt Ally?) It's the unexpected bumps that I feel like I am totally unprepared for.

I start thinking about bumps in the road... and my mind wanders to more complex scenarios... Places that you don't want your mind to wander to... What would happen if I was in a car accident with the kids? I have in my ICE contact on my phone some notes about Vicki. I also have other things printed out in the van... I know these are somewhat morbid thoughts... things that just couldn't happen... right? But what would happen if rescue workers came upon Vicki and I couldn't tell them anything?

I know I've said before that Vicki has Project Lifesaver... a band around her ankle that she wears 24/7 that emits a specific frequency if she would ever wander or get lost... She's worn it on her ankle since she was 4 years old... right after the incident that I will never, ever, forget in my entire life... that has shaped so much of who I am right now... the day that Vicki did wander away and the police had to look for her. I still shake to this day with the emotions, so raw still after all these years. That kind of fear just grips hold of you, and I have never been able to shake it off completely. I check Vicki's ankle bracelet every morning with the battery tester. And last Friday the red light didn't blink like it was supposed to. That little red light that gives me a bit of peace of mind... didn't blink. I was a nervous wreck all day... even though Vicki was in front of my eyes all day (since we were at the doctor's that day anyway)... I was still nervous. I called the police department like I was instructed to and they came out when we got home and changed her battery. Here, it seems that the device rusted out from the inside and ruined the whole transmitter... We had to get a whole new device... they think the battery might have leaked or the waterproof ring didn't work... We've had little troubles here and there with this device... where the battery stops working before the 30 days... or the signal isn't very strong. And it worries me... What if? What if? What if something happens and this peace of mind back-up that I have fails when I need it the most?

And then, of course, my mind wanders to the ultimate bump in the road... what if something happened to myself or my husband? I never want to think of that... but it's irresponsible for me not to plan something... What would happen if something happened? What would happen to Vicki? (and to Joey and to Ally?)  I don't think I am the only one in the world equipped to take care of Vicki. But then again, yes, I do. I can not die. We all die someday. But, me, I need to be indestructible for Vicki. That's not the best contingency plan. I know that. And me thinking that Ally had fallen down the stairs when she actually didn't forced me to think about contingency plans. What is Vicki's Autism Action Plan? With as much planning as I do, I can't answer that question. And that worries me.

Well... I need to go and listen for that pitter patter on the stairs... And pray that all goes well today... and hope that Vicki has a better day at school... I just need to get through this day.

Sorry about the heavy subject matter today... it's just been on my mind. I can't leave you with that... let me leave you with this... We watched Ice Age 4 the other day... and there's a song in it... We are. We are. Fam-i-ly. We are. We are. Fam-i-ly. Vicki was singing it. She really loves that song... And at the end of the song, I think it's the crazy aunt or grandma that sings... We are. We are. Ham-and-Cheese. And Vicki doubles over with giggles when she says that. Vicki was singing it at bedtime and when she sang the ham and cheese part, that slow little Vicki smile started spreading across her face and she thought she was hilarious. So did I . :) 

xoxo

Day 23. Year 3.

I've been so tired lately...
How tired are you?
So tired.... that when I went to write in Vicki's potty book a half an hour after I got her ready for school,  I couldn't remember if she had peed or not.. Half an hour... and I honestly couldn't remember. Wow. So I threw in the towel early last night, I didn't want to have another day stressing over if Vicki had peed or not. I kept thinking she was going to have an accident all day long. And just an FYI... in case you didn't know... when a 10 year old child doesn't pee for a long time and then has an accident, it usually requires a new pair of tennis shoes.

Vicki has a potty book. She's had a potty book for as long as I can remember. It sits on our kitchen counter everyday. It goes to school in Vicki's backpack. I started her potty book way back when we started potty training her... and that's been going on for years. Because Vicki doesn't tell us when and if she goes to the bathroom, the potty book was a way to remember and communicate with everyone who works with Vicki on a daily basis. That way we can be more alert for the potty dance if we know she hasn't gone... It's also a great way to look at trends. I can't tell you how often I've looked back in these books to see when things started happening... It's great to be able to access that history for doctors...

 Potty training for any parent is a difficult process... that sometimes seem to take forever. With Vicki, it's one of the many things that ebbs and flows... that's kind of funny... flows... Anyway... I often wonder when I will be able to say that Vicki is officially potty trained. Eh. It's just a phrase. I look at that phrase and remember the countless hours that I've (and so many other people) have spent with Vicki in the bathroom, setting timers to go to the bathroom, washing clothes and cleaning up after the bathroom... And Vicki really has come so far. If you think about it... teaching a child that when you get 'that feeling' that you need to go to the bathroom. It's not an easy thing to master.

I hadn't meant for this post to become an all encompassing potty post. Sadly, I could write for hours about issues that we've had with toilet training. And I could talk for days on the subject, and seriously think I have. I have had more conversations revolve around pee and poop than I'd ever imagined I would have. But this morning I don't really want to launch into the potty training history realm.

Back to my original story... Most days, especially in the last 8 months or so, Vicki has had a really wet diaper in the mornings (enough to have to change the sheets almost every morning...) But yesterday morning, her diaper was dry. Woo hoo!! I know I've described our shower sequence in the mornings before, and I usually listen for her to pee or see her grabbing toilet paper, but sometimes Vicki is just sitting and sneakily flushes the toilet. And it's those times that I'm not really sure. So Vicki was sitting and sometimes she talks to herself.. kind of gives herself directions... She'll sit and say make yellow, make yellow. She's said that for years... one day during our intense potty training days, I had assigned a color to things... And because Vicki is very visual, she kind of latched on to the phrasing.. I think it's actually quite genius. :)  So the question remained, did she make yellow? I thought about that all morning when she was at school... and was wondering if I'd get that call to drop off a new pair of shoes... I never got a call for that, thank goodness... So she must have made yellow... or she just has amazing bladder control, which I believe anyway... But I did get 2 calls from the school anyway... And yet again, I don't want to talk about that right now... I would much rather talk about pee. ;) Moving on.

Vicki was so adorable last night... It was a million little things that she did... My heart is still smiling.

Vicki was happy. The kind of happy that lights up her eyes. That little twinkle. I think it's a powerful thing to see in a child's eyes. It is a little slice of heaven to see that twinkle in Vicki's eyes.

Vicki was galloping across the living room floor last night. She was laughing. She was so free. Gosh, I love to see her like that. And I was sitting on the floor by the couch. Vicki was sitting on the couch behind me. She has this thing with feet lately. Especially my feet. Mommy feet. Mommy feet. She'll say. And I'll show her my foot and wiggle my toes and she'll squeal with happiness. She will literally stare at my feet, plop down beside me to get a closer look... fold herself in half with her head hanging off the couch just to see my feet. I joke with my husband that I need to get frequent pedicures because looking at my feet is so reinforcing to Vicki. I don't want to feel self-conscious and have icky looking toes. :)  I'll say anything to justify a hour of relaxation at the salon. :) 

As I was sitting on the floor beside her, Vicki reached out and started playing with my hair. I was pleasantly surprised. She doesn't usually offer a lot of contact... And she never plays with my hair. She just sat there, quietly sat there and stroked my hair. It felt so nice. Amazing really. She was so gentle and relaxed. I could even hear her hum to herself quietly, and repeat the words nice and gentle. Nice and gentle. We've used that phrase before when we would pet animals. We would take her hand in ours and hand over hand pet the animals with her and we would say 'nice and gentle.'  She has taken to that phrase and sometimes when she is playing with her Layse Black Cat stuffed animal, I will see her stroking it's fur and hear her whisper nice and gentle. I was in heaven with my baby girl sitting so calmly behind me, her soft touch on my hair, her aura... so..... I can't find the word I am looking for. But it was one of those moments in time that you tuck away and keep in your heart forever. And bring it back out and remember when things seem so bleak and frustrating. I have this moment right now.

Vicki gave the BEST hugs last night at bedtime too. Real hugs. Not the fake, lean in and touch her head to our chest but doesn't use her arms to wrap around at all. That's the 'I have to' hug. I will comply but not like it. Last night she gave full on, arms squeeze more than a second hug. Ahhh.... again.... a hug like that from Vicki. Bliss. It really is. She was so fun. She was still happy and smiling. And with Vicki, when she is with you and engaged... it is like the best game of follow the leader you will ever play. We were dancing in her room at bedtime. And I would  bust out some moves, and she would follow. I kicked my leg out, she kicked her leg out. We took turns spinning each other. She would lovingly gaze at my feet. :)  These are the best kinds of times. I cherish these moments more than I can ever express.

Even though Vicki doesn't say a large volume of words in a day, the words she does say... they make an impact. (I could probably take a few cues from her. Ha ha... ) Clear and concise. Speaking from the heart. Nice and gentle.

The kiddos have an early dismissal from school today. What can I really accomplish in 4 hours... maybe I should just go get a pedicure and surprise Vicki. :) 

xoxo