Day 9. Year 2.

Today Vicki needed a pajama day. A pajama movie marathon pizza eating kind of day. Oh wait... That was me. ;) I always feel a little bad with these kinds of days. You know the tv babysitter kind of days. Well I really needed to use our last day visiting family to kick operation cleaning out the basement into high gear. Vicki was more than happy to sleep in and bum around in her jammies. It's been such a difficult trip I thought that by not placing a whole lot of demands on Vicki that she would magically snap out of whatever is going on with,her. I know traveling from house to house is hard on everyone. No one gets enough time anywhere and no one gets enough sleep. But usually Vicki does better with her visual schedule. So everything was going along just fine, and sadly, by just fine I mean Vicki was quiet and seemed content... Until about 5:30, when Vicki got upset. I wish I knew what triggered it. Maybe it was the fact that she lost her purple marker in the couch. Maybe it was that Ally got a new barbie for an early birthday present. Maybe it was because she misses her pappy and realizes that he's not here, but doesn't understand why (I'm going to go with this one and pause for a kleenex...) Maybe she just wanted to cry. I know I definitely have those days. But whatever it was.... It made Vicki very upset. She cried for over an hour and I could not console her. I found her purple marker. Didn't matter. I tried to hug her. She pushed me away. We ate our pizza dinner. She kept crying. And after asking her forever to use her words and tell me.... She finally got interested in the pizza we were eating. So I offered get the choices. And of course she asked for olives on her pizza and we didn't have any. :( But she finally came out anyway, thank goodness. I was ready to run to the store for olives. I have togive kudos to Joey and Ally. A Vicki crying spell is not easy to sit thru. But they were amazing throughout. Ally tried reading a book to her and offered Vicki to play with her new pink bunny. And Joey alwayd thinks of soothing, kind things to say. And later Ally let Vicki play with her new barbie. Melts my heart. Right before bed Vicki told me goodnight and told me what she wanted on her schedule for tomorrow: breakfast, medicine, shower, grandma and pappy, lunch, McDonalds, home, medine, clean up, bed. You got it Vic!Here's hoping that's how,tomorrow goes.

Day 8. Year 2.

Easter and Spring is a time of new beginnings... and I feel like it's time for one for me. It's been a difficult few days for me. I've been struggling. Struggling physically (I still have a virus of some sort that is making the side of my face swell and making it miserable to eat anything.)and I'm still not sleeping much, struggling mentally with the drastic ups and downs Vicki has been experiencing this last week, and struggling emotionally (trying to even out my rollercoaster of emotions).

It is so hard for me, still, sometimes to grasp the enormity of the scope of autism which Vicki wades through everyday. My patience has been wearing thin. My always cheerful demenor (Ha!) has been not so cheery lately. I've been grumpy. I've been angry. And I've been tired. And, my oh my have I been whiny. Vicki has been having trouble, a lot of trouble the last week. Things have crept up on us that haven't been a concern for years. All I have to do is look at Vicki and I can physically see her struggling within herself. She takes a few steps forward and then a few steps back. Both figuratively and literally. And she is struggling, not knowing what she wants or what she needs. And all I can do is sit back and be patient and be there for her. And sometimes, quite frankly, I am neither with her. And I feel terrible. And I know she is hurting. And I hate that I can't solve the puzzles within her and make it all better. I'm her mom, that's my job. And I feel like I've been failing miserably. And my husband, he has been amazing. Filling in for me with his abundance of patience and gentleness with Vicki. He's tired too. Vicki doesn't sleep much ever, and especially when she is not in her bed. So he's with her all of the time. And I've been trying to help my mom go through some of my dad's stuff. And that sucks. It's a bit emotionally and physically draining as well. And my husband has been there. And I am so grateful.

We were standing outside today at a family gathering for Easter. We had just finished a scavenger hunt with the kids and Vicki was sitting on the ground playing in the dirt. And I was looking at my husband. And I was thinking wow, what a rock he is. And then I looked up at the clouds and the wind picked up a bit. And then a big black cloud rolled by and a few raindrops hit my forehead. And the sun was out. And I was looking for that rainbow. That rainbow I feel like I so desparately needed. And I looked back down at my husband and smiled. He is my rainbow. He is my love. And it will all be ok. And Vicki will be ok. I'm ready to pick back up, dust myself off, and jump back in. A new day.

Day 6. Year 2. Part 2.

'Good' Friday continued...

I’ve wanted to write about this for some time now. And I figured there is no better time, then a day filled with doubt, and sadness, and struggles. Because it is times like these when I need to pull from the strength of my husband, my children, my family, and my friends. But above all, I need to be carried by faith, by hope, and by love.

We all struggle. We all feel like there are days when we just can’t push through. When we don’t have enough strength bear the cross that each of us carry. And sometimes I forget that we don't have to bear the weight of our cross all alone. There are people ready and wanting to help take the burden off of you.

It’s how we handle the difficult days that make us who we are, that make us stronger.

My dad passed away 7 months ago. There is not a day that goes by that I don't think of him and miss him. Dying is a part of life, but that doesn't make dying or living any easier. I've been thinking of him a lot lately. Every 'first' holiday or special event without him triggers the memories and brings with it fresh tears... My parents would always come down to see us over Easter, and my dad would hide eggs for Joey, Vicki, and Ally every year. He loved it, we loved it. And we miss it.

Everybody struggles with death. Everybody struggles in their own way. How do you explain dying? How do you come to accept it? How do you explain dying to a child? And how do you explain dying to a child who has autism?

Death is never easy. And I think I knew it was coming for my dad. On the night before he went in for surgery, we drove to see him at home. I had been up most of the night beforet that... and I couldn't sleep. Of course I turned to writing. I penned a letter to my dad. There's not often you have the opportunity to tell a loved one everything that you feel in your heart. But I did. And I took the letter home to read to my daddy.

All of the unspoken words were spoken. I know he knew even if I didn’t say a word. But I told him anyway. I layed down across his bed and he sat on the edge. He stroked my hair like he did a million times before. I cried. He cried. I cried. He comforted. He laughed. I laughed through my tears. And here’s what I said:

To my Daddy, with love.

I’m sitting in the dark, just thinking about you.
Wondering if I can be strong when you need me to.

Wanting to tell you everything I feel I should.
Needing to tell you everything I think I never could.

Daddy I love you. You mean everything to me.
I hope I’ve made you proud of the person I’ve grown up to be.

Sitting here alone tonight, with memories of my Dad.
Makes me smile and laugh, these memories are not sad.

I remember so many things… let me list some now for you.
So we can share these memories together, for they’ve shaped me through and through…

…. I remember …. (and then I listed so many things I remembered. The good, the bad, the everything. Here are a few... )

…I remember the smell of your clothes after you spent an afternoon tying up tomato plants.
…I remember how I never wanted to let your hand go when you were walking me down the aisle to get married. I remember crying everytime I heard butterfly kisses, and still do.
….I remember feeling that everything would be alright with my pregnancy with Ally because you and mom were there for me. You are always there for me.
…I remember watching you put your arms around my kids when they cast their first line fishing in by the rocks in Tionesta.
…I remember just watching you watch Vicki. And look at the love in your eyes. And accepting her for the beautiful person that she is. And enjoying her for everything that she has brought into our lives.
…I remember watching you hold each one of my kids and seeing their tiny hands in yours and feeling so much love.
…I remember you feeling Joey’s muscles after he would do his push-ups. And how much Joey loved watching animal shows with you.
…I remember your face the first time you watched Ally play soccer. And every time you look at her.

There’s never a good time to say goodbye.
There’s never a good time to sit down and cry.
There’s never a good time to ask why.
There’s never a good time to die.

And I just wanted to tell you that I admire you so much, for alwaying being there for me. For taking the chance of dying to live, instead of living to die. I love you.
Rosezella

My dad asked my mom to call me the morning before he died about 2 weeks later after his surgery. He knew it was time and he wanted me to know. In a beautifully clear voice he said, ’You have made my life so happy.’

We got in the car and drove home to be with my dad as he died. Sitting in the hospital room with my mom that night watching my daddy die was so very hard. My mom always says, ‘I’m no good with words.’ But her actions spoke louder than words could ever do. She stroked his hand and talked gently to him and was there for him until his last breath.

Two days later I read the letter that I wrote to my dad for his eulogy. I almost made it through, until I got to the part about Vicki. The bond that he and Vicki shared was so unique. He always just was when he was with Vicki. And Vicki always just was when she was with him. Just a grandfather and his grandaughter. The day of my dad's funeral, I tried so hard to figure out how to tell Vicki. So on her visual schedule I put a pictures of my dad and Vicki hugging and the picture I use for Jesus when we pray. She went up to his casket, touched his hand and said in the clearest voice ever said:

Our Father, who art in Heaven,
Hallowed be thy name.
Thy kingdom come.
Thy will be done.
On earth as it is in heaven.
Give us this day our daily bread.
And forgive us our trespasses as we forgive those who trespess against us.
And lead us not into temptation.
But deliver us from evil. Amen.

And Vicki said goodbye. And I, I am still saying goodbye.And I am still struggling. And the Easter season has brought back all of it for me. And as I sat penning this post on 'Good Friday' in the kitchen I grew up in, I still felt my dad with me. And I still feel my dad with Vicki. And it will all be ok.

Day 7. Year 2.

Due to that fact that autism is beating the crap out of me today and the fact that I still am not at a computer with internet service... This is all I have tonight. I don't know what's been going on with Vicki. I don't understand. And I am very sad. I am crying for her. I just really hate this sometimes. Hopefully a good night's sleep, a prayer, and a bunny will be the recipe for a better tomorrow.

Day 6. Year 2.

Today was Good Friday. If you asked me 2 hours ago if it was a 'good' Friday, I would have said no. But by the light of my cell phone, which I am typing on (so please forgive the horrible typeing...which by the way is teaching me 4 things: 1. I'm getting old 2. My fingers are too fat for this touch screen, 3. I really am no good at using the swype function, and 4. my eyes do not like this small of a screen for long periods...) I think I would now have to say 'Yes. It was a good Friday indeed.' I could reflect on all the bad things that happened today... Like the fact that Vicki had another really rough day. She had alot of frustration and no words to explain how she was feeling. But I can, and I must admit... I need to do this on my computer... So I will post this now and type the rest of my blog on the computer and attach it tomorrow when I have an internet connection.... So until tomorrow... to be continued...

Day 5. Year 2.

Tonight I am not witty or creative. (Not that I usually am)... But usually I have an idea for a post. Tonight I am just tired; And I think I will finally start to listen to my body. So this post will be short.
Goodnight. :) 
Well, just kidding. I can't make it that short!

Vicki had a hard day. And that makes me so sad. Last year, I know I posted a lot about how Vicki's behaviors would cycle. You know, everyone has their good days and bad days. Only Vicki can't tell me why she feels good or why she feels bad, and when her mood changes sometimes it's so dramatic and quick that it catches me off guard. I used to be able to predict with fairly good accuracy how I thought Vicki would react in a situation. I really can't read her anymore at all. Times that I think she will be ok are the times when it all falls apart. And the times that I think will be difficult are a breeze. I feel like Vicki is living the Katy Perry lyrics:

You're hot then you're cold
You're yes then you're no
You're in then you're out
You're up then you're down

And I live for experiencing all of it with Vicki. The crying. The yelling. The laughing. The loving. The joy. The pain.  If I'm overloaded and overwhelmed and stressed and ready to take a break.... I can't imagine what she must feel. I can't imagine because she can't tell me. But she did tell me this morning when she saw Ally put on her long pink sparkly dress for school, 'Vicki purple dress. sparkles.' And she looked so lovely in her purple sparkly dress. Vicki loved looking like Ally. And Ally loved being looked at by Vicki. :) 

To make a long story short, I went back to the doctor tonight because I've been feeling odd the last day or 2 since I finished my antibiotic for my sinus infection. Today my face and cheeks starting swelling and getting painful.  And then, although I'm sure most of it was psychosomatic, I felt like I was having trouble swallowing. So, of course, I think it's some sort of allergic reaction. Well, I am now on 3 meds and I hope I can get this all figured out soon.  (Hence the short, rather uneventful post; I am trying to listen to my body telling me to go to bed...) It was odd though, tonight, how I felt as I said goodnight to each of the kids... It made me think in that very moment how very lucky I am. And I never want to take for granted how amazing life is... even when it throws you curve balls and roadblocks.



Day 4. Year 2.

I listened to my own advice this morning; Or rather, the advice of The Little River Band... 'Take time to make time, make time to be there.' Guess what time it was today? The hardest kind of time to make and justify for me. Yep. A little bit of me time. Rosezella time. That's the kind of time I always feel like I am wasting if I am using. I think it should be called guilt time instead. Why is it that I can spend countless hours getting things ready for my kids, or my husband, or the house, but the minute I spend a minute on myself, I am constantly checking the clock? And constantly feeling guilty about taking this time out for myself. 

Now, I really do believe in the importance of taking care of oneself so that you can better take care of others. But it is so very hard for me to put that into practice. There are seminars on 'Caring for the Caregiver' and countless websites. This quote is from the Family Caregiver Alliance, the National Center on Caregivers Fact Sheet, 'Taking care of YOU: Self Care for Family Caregivers" (www.caregiver.org)

"On an airplane, an oxygen mask descends in front of you. What do you do? As we all know, the first rule is to put on your own oxygen mask before you assist anyone else. Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important—and one of the most often forgotten—things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too."

I think that carving time out for oneself is difficult. But much, much needed. My me time today consisted of coloring my hair. Never underestimate what a great haircut or color can do for your mental well being. :) And if you sing the 'I'm gonna' wash that gray right out of my hair' song while rinsing out the color, well... that's just fun. Smiling just to smile. Smiling's my favorite. :) Laughing. Laughing is good too. The really deep belly kind of laugh. The kind that makes you short of breath; the kind that makes you almost have to pee. The kind of laugh... like when you get a baby to laugh. And laugh. And laugh. Baby laughs are the BEST!

The second thing that I did on my me day was have lunch with some wonderful girlfriends. I love great food and great conversations. I especially love great food and great conversations when the only person I have to worry about behaving at the table is me. I don't have to ask for the check as soon as I get my food so that I can make a mad dash for the door when meltdowns commence. I don't have to eat quickly or cut up anyone else's meal. I don't have to worry about whether someone else has to pee, only me. I don't have to make sure mac and cheese is on the menu. I just have to relax. Relax. Relax. Breathe. Talk slower. Don't rush. Don't stress. I actually find myself repeating that in my head sometimes. Because it's not natural to me. It's unnatural to be carefree anymore. I'm a mom. I always worry, I always rush. But it was so nice today to slowwwww down. I enjoyed conversation. I enjoyed a hot sandwich.  I enjoyed talking about nothing, I enjoyed talking about everything. I find it hard to allow myself to enjoy anything just for me. But today, I enjoyed my medium dark brown hair color, a turkey panini with raspberry sauce, and wonderful conversation.

You know what else I enjoyed? I enjoyed an extraordinary day filled with ordinary things. By making the ordinary extraordinary - I cared for myself. And in turn, I cared for my children and my husband. Because I recharged my battery, I was better able to pick up signals and transmit love. When you take a step back from the stress of living, you live. Geeze, I feel like I could make one-liner cliches all night. :)

The other day a friend of mine asked for some advice on things you do to lift your spirits if you are feeling down. It made me start to think, and I put together a list of some of my favorite things to do to recharge my battery. Just making this list should be on my list. Try it, see what you come up with! Here's mine: 

1.   Make some hot cocoa for YOURSELF- not the kiddos, spray it with the spray on whipped cream, take a big gulp, and don't wipe your mouth off. :)

2.   Look at some of your wedding pictures or an old, old, picture of you and your husband together. (Well, not too old! I'm not THAT old yet!)

3.   Play 'Simon' (I have the free app on my phone).

4.   Glitter something. That always makes me happy.

5.   Watch a scene from a favorite movie that makes you smile... for me, I like Forgetting Sarah Marshall... if you've seen it, it's the part when he sings his Dracula song in a bar. If you haven't seen it, watch it. :) 

6.    Listen to fun songs and sing very loudly and off key (I like - My Sharona, Come on Eileen, or Brickhouse.)

7.    If you are lucky enough to have your parents or grandparents on this earth with you, call one of them just to say I love you.

8.    And, finally, say a prayer.

P.S. Remember yesterday when I said I didn't think anyone would remember the time I spent with them last night? Well, the first thing that Joey said to me this morning was, 'I really liked playing Tribond with you mom.' And then, after school, he said it again. 'I really liked playing Tribond with you mom.' And Ally came bounding down the stairs this morning, 'Let's read another Dr. Seuss book tonight mom. I like taking turns rhyming with you.' And Vicki. Sweet Vicki. We made time today to make some Easter Bunny cupcakes. Taking the time to allow Vicki to fill each of the 24 muffin tins, yes it would be much faster and much less messy to do it myself. (And so often I have to stop myself from doing it myself because it's easier... Guilty!) But, watching the excitement and pride in Vicki's face as I put the cupcakes she created in the oven... oh yeah, it's worth it! Children do know. Children do appreciate.

Thank goodness for the gift of each new day. No matter how difficult of a day you've had, the miracle is that, if we are lucky, we get to wake up and try it again. Every morning we get to see a new sunrise. It's our choice whether we squeeze our eyes shut to block out the light, or if we embrace it, take a picture of it, and soak up the warmth of it.