A Funny Thing Happened on the Way to Starbucks

I am a Starbucks addict.  I don't drink alcohol, I've never smoked and I've never done drugs.  I do Starbucks.  Yes, I know it's not something to be proud of.  Don't be silly!  The funny thing is, I can't stand coffee (although I do love the smell), but you should be careful if you sit down with me intending to drink your own venti non-fat, no-water, chai with whip.    You better hope you have cat-like reflexes if you put it on the table in front of me.

If you aren't from New England, then you don't know that you can't find a Starbucks A-N-Y-W-H-E-R-E.  You can't walk three feet without walking smack into a Dunkin' Donuts, but Starbucks is just about unheard of.  In fact, they make an effort to talk badly about Starbucks up there.  For me, Dunkin's chai just doesn't measure up.

We hit one of the very last Starbucks on our northern travels about 5 minutes after they closed.  I am not arrogant, rude or inconsiderate enough (desperate, yes) to bang on the door and demand (beg, yes) they open long enough to make my overpriced latte for me.  Instead, I did what every normal, desperate person would do:  I cried (remember our traveling circumstances; you would have cried over missing out on your latte, too!).  Anyway, those two weeks in Maine without my caffeine crutch were LONG.  My dear husband did the best he could with what he found in the grocery store (I love him), but it just wasn't the same.

So, on our way home, when we hit one of those tourist service centers, one of those places that have several different types of eateries and gas stations in a one-stop type center, I spied a STARBUCKS, and life was back on track!  WOO HOO!!!!  I crawled up to the cash register as one would to an oasis in a desert and blurted out, "I haven't seen you in two weeks!  I need a----" and my poor, exhausted brain conked out on me.  In all of my excitement, I'd completely forgotten what I always order!  Fortunately, my trusty backseat driver was with me!  Noah started jumping up and down, shouting, "I KNOW THIS!  I KNOW THIS!  She needs a venti non-fat, no-water chai with whip!  Yes!  All those years of sitting in the backseat have FINALLY paid off!"  We "woo-hoo"'ed, high-fived and did a little dance, probably looking like a couple of idiots--but we did it in true mom-son fashion!  Fortunately, the cashier, a very nice lady my mother's age, laughed with us (she was laughing with us, not at us, right???) and made the perfect latte to end my two week break.

The really funny thing?  When she asked where I'd been for two weeks, I learned that I actually live about 30 mins from her son in my state (and she lives about two hours from my mom in their state).   Small world!  Even funnier, her son tells her not to pronounce the name of my southern county with her New England accent because it sounds like she's being rude (y'all know what I'm talking about, don't you?!)!  HA!

Wearing the Other Shoes

I have the privilege of volunteering for a local Christian non-profit that is "devoted to providing support, education, training and a Biblical perspective for adults, teens, and children who are dying, dealing with illness, pain, bereavement and other difficult issues, and for those who journey with them." 
*taken directly from our mission statement


I first joined this group over six years ago when I was at my worst physically, emotionally and spiritually.  I've been raised up, and now gratefully, I am able to give back.  I go every week and give back the best way I can.  Coffee and Conversation (formerly the Care Cafe), has been my small ministry within this larger ministry for close to three years.  It's one I take great pride in.  I love feeding people and helping out.   Best of all, I love taking care of my visitors and introducing newcomers to our ministry.  Noah has begun helping me (he calls himself my apprentice, I love it!) now that we are homeschooling.  He has also been staying for Prayer Hour on his own while I pick Avery up from daycare. What my co-workers are able tell me about his prayers is just amazing, God-given!  For everything that has been given to my family, I'm happy to be giving back.  Being a part of this center is as natural to me as air, water and yes, God!


Over the years, thanks to this center and a Christian disaster response group, I've had some classes and training in grief and disaster response (that probably surprises you because I'm usually the first one to scream, "RUN FOR YOUR LIVES," but if you bring me in after the fact and give me as many facts as possible, I'm actually kind of good!  I really can keep my head on pretty straight if the crisis isn't mine!).  I'm used to wearing these shoes. They were inexpensive and I've had them for years.  They are comfortable, they are broken in, they fit well and I know what to expect (as much as one can know what to expect in crisis/disaster response).   I'm also REALLY experienced in dealing with chronic illness, so I have my PhD in that counseling as well (oddly enough, no one will give me the piece of paper to go with it, though.  Hmmm).  I've been able to share my experiences concerning chronic illness and help our fearless leader teach a few classes about helping those who suffer from chronic illness, as well.  It's all part of the privilege of working for this center.  It's all part of something I take very seriously and personally.  It's all part of something bigger.


So, to be on the other side this past week, wearing the other shoes, has been a twist for me.  As you know from my previous posts, my beloved grandfather died last Wednesday.  Even though I know all the steps to grieving (and therefore "should" know what to expect), each day has brought new surprises for me.  These new shoes aren't comfortable, they don't fit properly, they have left blisters, and are awkward.  They were expensive, too: the cost of my grandfather's life and my health.  I'm used to taking care of everyone else, not the one being taken care of.  One day I'm fine, the next day I can't get off the couch.  While I know this is normal, it doesn't feel normal.  It's not my normal.  It's not me.  These aren't my shoes.  With the grief has come an explosion of pain inside my body, a reaction to the stress.  You know it's bad when I bother my specialists for prednisone on a weekend (especially for prednisone, especially on a weekend).  Between the grief and the pain, not only can I not function, I don't want to function.  I know this is normal.  It's my new normal.  But I don't like wearing these shoes.  They belong to someone else. . .   Don't they?


Denny died on a Wednesday, I go into 'work' on Thursdays.  There was no question that I was going to go into work.  Where else was I going to go?  What else was I supposed to do?  I kept myself baking and cooking everything I could get my hands on in the kitchen all day Wednesday (I wanted to make sure I had plenty of food to serve on Thursday, but considering I had enough food for three armies and several small, third world countries, plus my own family, I don't think that was going to be a problem).  At midnight, completely baked-out, I looked around thinking, "What now?  Oh, I should go to bed now so I can be fresh in the morning for work, right?  Right."  Of course I didn't sleep.  And of course I ran late that morning.  I like to be at work by 9:15 to be ready when my little cafe opens at 10, but it was almost 10 before I even pulled out of my own driveway for the 25 minute drive.  I found out along the way that Avery's daycare was closed due to the public schools having only a half day.  Great, so now I was going to have both kids with me.  This would be interesting!  While setting up my food, the rest of the staff came down for our morning hugs (if you don't start your work day like this, you're missing out) and to express their condolences.  Several of them said they were surprised to see me.  Where else was I going to go?  What else was I supposed to do?  This is where I belonged, this is where I needed to be.  This is where MY healing has always begun and where I knew it would again this time.


Wearing the other shoe isn't so bad.   My toes are a bit pinched.  I have slipped and fallen a few times.  I know I will again before all is said and done.  But, now that I've read the shoebox and had the training, I know a little bit about what to expect.   I'm also in the care of great, loving people who know what to expect and how to guide me while I wear these shoes.  Denny will always be dear to us, so I don't think I will ever be fully finished with these shoes.  I just hope to have a few good days in between where I can wear my old ones.


The best part?  I survived having both kids with me at work.  :)


*Please note that for the privacy of my family I did not include the name of the non-profit I work for. If you think you could be helped by this group or would just like more information about this group or the disaster response group, please feel free to contact me.  Thanks!*

In Honor of Sunday School Teachers Everywhere

Making the decision to leave Avery, our second miracle baby, with the church nursery was difficult.  Actually, making the decision to leave him anywhere but in our care was difficult!!  Common sense told us he'd be safe, but let's be honest, when it comes to our children, we don't always listen to common sense, do we?

Avery has been in the church nursery for almost a year now.  Even though we've known all along that we made the right decision, today that fact was cemented for us.  We decided to go out for a nice lunch after church.  Halfway through our meal, Avery's Sunday school teacher walked in with her family (hoping to enjoy their lunch, I'm sure!).  Avery spied her and flipped out.  Trying to stand up in his highchair, he started yelling, "HI!  HI!  HI!"and waving to her.  He was a little upset that she wasn't seated directly next to us and even more upset that she didn't hear him.  I promised him that when he finished his lunch we'd take a quick walk over to say hi to his beloved teacher.  We did, she waved to him and said hi, he squealed with delight and everyone was happy!  

We knew it before, but now we KNOW Avery is in good hands, well loved, well cared for and the best part, happy.

And Noah's teachers?  Some other parents with kids "like Noah" in our church have paved the way ahead of us.  Due in part to their education and training, and the love and understanding with which the teachers lead the children, Noah is allowed to be himself.  

Thank you, to all Sunday school teachers, past, present and future, for all the influences you have already had and will have on my children.  May God bless all of you.

In Memory of a Dennis A. Pires

My grandfather's suffering came to an end yesterday.  I am deeply saddened and filled with mixed feelings.  I know he is in heaven, and now happy, healthy and whole, but selfishly, those of us who loved Denny have been left behind.  Even though we know he was in pain, some of us still aren't quite ready to let go.  His death was not unexpected, but no death is ever well timed or welcome.  God has promised to turn my mourning into dancing, but for now, it is difficult to not be sad. I am glad to have had the 2 weeks I had with him while he was of sound mind and I'm grateful for the conversations we were able to have.  Noah decided that he must already be eating his favorite foods again (his favorite activity!), maybe served by another 34 year old named Amy or maybe the food is just magically appearing in front of him.  Kids are great, aren't they?  We think that he's probably boogying up a storm because he'd been confined to a wheelchair in the past weeks after his legs gave out, and he certainly must also be enjoying some time on the water, as he hasn't been out on a boat in quite a while, either.  It was supposed to rain and storm all day yesterday, but right after we got the phone call from Mom, the sun peeked out from all the storm clouds.  We think that was Denny letting us know he's okay and that he wants us to be okay, too.  I can still see him trying to salvage my grandmother's old porch chairs with his macrame, I can hear him say "Hellll-O beautiful!" when I walk into the room and I can feel him holding my hand, then kissing it.  I am grateful for the 26 years we had Denny.  


Please look up Denny's obituary here:


http://knox.villagesoup.com/people/announcement/obituaries/dennis-pires/388333?cid=95078

I would like to thank Denny's family for including my grandmother as one of his survivors.  Many thanks to them also for taking her sense of propriety into consideration and listing her as Denny's "special friend," so people would not be confused and think they ever lived together (I love my grandmother, she cracks me up!).

Matinicus Rock

Meeting Noah for the first time

Playing with Noah

Denny and Noah

Great Nanny, Denny and Noah

Nanny and Denny

Nan and Den after he was admitted to
the nursing home

Denny, meet Dennis Avery!

Dancing with his namesake

Extended Family
Johnston-Pires-Furr

I miss you, Denny.  Thank you for the memories and all the love you've given us.

We won't forget you.

Mama Said There'd Be Days Like This

Some days I just can't handle it.  Some days I just want to be free of it.  Some days, like today, as I mourn the loss of my grandfather, I don't want my world to be black and white.  Some days, it's just too much.  Some days I think, "Not today, please, just not today.  Whatever Aspergerian curveballs and monkey wrenches life has in store for me, please, just not today."  Some days, like today, when my body hurts so much that I just want to lay in bed and not even try to move, I don't want to deal with it.

Some days, like today, I want to wake up and hear a voice say, "Congratulations!  Today, your world will be free of Asperger's and Sensory Perception Disorder.  Today is a free day.  Do with it what you wish and what you need."

It sounds like an awful thing to say as a mom.  I love my son more than life itself and I wouldn't change him--or anything that makes him who he is--but sometimes, I just need a break.  I just need one Asperger-free day.

That's all.  Thank you for listening.

If it's like this for me, what is it like for Noah?

Tidbits of Normal

Every now and then, God gives me little tidbits of normal: Those rare moments when, for a brief moment, Asperger's doesn't seem to exist, when I think maybe I might be able to survive this syndrome in its mildest form after all.  Maybe I can survive homeschooling and an adorable little monster toddler, too!

I've had several of these tidbits, which I latch onto with a tight fist. They give me hope and strength for the next day (and the weeks to come).  The morning I took Noah to school and heard both boys singing Chris Tomlin's "Our God" in the backseat as the sun rose is one of my favorites.  Noah anointing and praying over me and Shawn is another one I hold closely.  When I see Noah playing with Avery and doing big-brother type activities, when my heart isn't aching or breaking: those are little tidbits.  These are the times when there is no Asperger's, no Sensory Perception Disorder, no low self esteem, no meltdowns or anxiety attacks, no left field:  just a happy, normal kid.  Just a happy, normal family.

God gave me another tidbit of normal last night.  A friend of mine has two sons in need of better schooling and their best chance was with a lottery for a charter school.  She had asked me for prayer and good thoughts.  I told Shawn about it, explaining the needs of my friend's children, asking him to do the same.  As parents who have struggled with school issues ourselves, we were happy to help this friend.  I tend to forget that Noah has ears like a bat and eavesdrops more often than not.  Last night when Shawn got home, I told him the good news; my friend's middle son had gotten into the charter school and her oldest is third on the waiting list for third grade.  Noah said, "That's so great!"  I looked at him and said, "You don't even know what we're talking about!"  He said he did, so I asked him to explain it to me.  Sure enough, he repeated back to me exactly what I had told Shawn! Then he said, "I'm really glad your friend's kids got into the special school because I don't think it's fair when other kids have to suffer and struggle like I did."    


Sometimes I want to pull up one of his eyelids, peer inside his head, and say, "Asperger's?  Are you really in there?"  

*Story about my friend and her children told with her permission*

"Fremily"

FREMILY:  The friends God gives you as family to make up for the family you are born into (you won't find that in Webster's; I made it up).

I love my oldest son dearly, but occasionally (okay, more often than occasionally), he gets stuck on a subject (something in the Austism/Asperger world called 'perseverating.').  One of his favorite subjects is to ask me who my best friend is.  I tell him this question is unanswerable.  As an adult, I don't have just one best friend.  I have many friends who meet many different needs for me (and I hope I do the same for them!).   Some friends are church friends, some are homeschooling or playgroup friends.  I have friends I talk to when I need prayer or really good advice, I have other friends for good laughs and good times.   Some friends I've never met, others are really great friends I was introduced to by other friends I hardly ever see anymore. There are friends I turn to about Asperger's frustrations and toddler frustrations. Some friends just understand certain things better than others.  I have all kinds of friends.  I'm incredibly grateful for every single one of them and all that they bring to my life. 


Unfortunately, I've never really felt as though I had that one friend who accepted me through and through, that friend I could turn to for EVERYTHING.  Over the years, I've prayed and prayed for that friend.  I talked with God about it. I talked with my mentor about it and then we prayed.  She asked me what I would want in a friend like that.  "Well, a female Shawn would be good!"  My husband is my best friend, but ladies, let's be honest, there are times we don't want to be around our husbands and there are some things we just can't tell our husbands (or things they just don't/can't understand), right ?!  I wanted a female friend with my husband's personality, his outlook on life, his sense of humor; someone who could keep me grounded the way he does.

A few weeks after that conversation with my mentor, I realized the joke had been on me all along.  I had slowly been growing closer to a woman who is very active in Noah's life--a very Shawn-like woman--and I realized we were becoming good friends.  And she was already very good friends with another woman I was also becoming very close to.  When you sit back and take notice of the work God is doing in your life, it really is quite amazing!  Not only did God give me one friend, He sent TWO!  I had been eagerly praying for these two women (not knowing their names as I prayed)--and they'd been there all along!!!  Mandy and Sharon meet me where I'm at, and I do the same for them.  We give each other different perspectives without trying to change each other.  They know I'm good for prayer, accept me as I am and don't judge me when a bad word slips out of my mouth.  Again, I do the same for them.  We can rant to each other about our bad days, feel better and move on from there.  We encourage each other and love each other.  We have similar senses of humor and keep each other grounded.  I have trust issues from past friendships and relationships, but Mandy and Sharon are helping me through those (whether they realize it or not). They are teaching me not only how to be a friend, but how to accept friends(ships).  I am learning so much from them and I value every bit of it.  They love Noah as he is, which I think is the most important thing.  They completely understand living in left field (or try to, anyway!)!  Mandy and Sharon like my kids and get along easily with Shawn.  In accepting me as I am and where I'm at, they have helped me step out of my box in many ways too, which is another BIG thing.  I've told them things things about my past, present and future that I've never told anyone else. They know my secrets and they still like me.  They know I'm long winded (and they read my emails and blogs anyway!) and they still like me.  They really, really like me!

Much later, when I told Sharon about my prayer for a Shawn-like female friend and how she answered it, thank goodness she laughed, took it in stride, and even better, took it as a compliment!


Two weeks ago, Shawn and I were supposed to go to a weekend marriage seminar.  When I signed up for it, I emailed Sharon and Mandy, "Children, Free to a Good Home," then never had to give it another thought.  Instead, I was able to concentrate on my marriage.  It was humbling to be able to sit back and let them handle all the child care issues for our boys.  They are both single moms with five kids between the two of them, which means five different schedules.  The marriage seminar was local, so they didn't have to keep my kids overnight, but because it covered two days, they decided for us it would be easier if they did.  They were even going to take Noah all the way to his social skills class (a 45 minute drive).  Avery had never spent a night away from me and hates the pack 'n play, but I was promised I would not receive a 3 am phone call and all would be fine.  Somehow it was even decided that the dog was also going to spend the night!


The marriage seminar ended up being the same weekend we had to drive to Maine for my grandfather. Instead of watching our kids for a weekend, Sharon and Mandy watched our pets for two weeks.   When I let them know we had gotten the call about Denny, they both sprang into action, humbling me once again by dividing up the care of my four-legged children and telling me how it would work out.  Mandy had kitty care for two weeks and Sharon took over dog care for two weeks (which meant our dog moved in with her; not that Sharon, Gretta or Sharon's boys complained!).  I was able to relax and concentrate on my family up north, not worrying about the pets or mounting kennel expenses down south, thanks to my friends.  Even when Mandy texted me in a panic the night she couldn't find Jethro, I wasn't too concerned (okay, maybe a little!).


When we pulled into our driveway at 1:30 am Friday morning, road weary and exhausted, we found lights on in our house to greet us.  When we woke up for breakfast, we found fresh milk and a breakfast casserole ready for the oven in our cleaned-out fridge.


I am in awe of the gifts God has given me in these two amazing women.  I am deeply humbled by everything they have done for our family.  They have so much going on in their own lives (their own plates are brimming over), yet they still found time and energy to do for us, even when I did not ask.  They just did it because they knew I needed them to.  I was heading into crisis mode, they knew everything that needed to be done and took care of it.   I couldn't ask for more.  Well, wait, yes I could.  I could ask for this kind of friendship/fremily blessing for others.  


Maybe now I can give Noah a little more of a definitive answer next time he asks who my best friends are.

Until we're old and gray!!!

Haha!

When Life Finally Starts to Make Sense

I had one of those "Ooooohhhhh, noooowwwww I get it," moments yesterday.


For years I watched my mother leave Maine to head home for Virginia in tears.  As a child, I never understood it.  We'd see her family again next summer, what was the big deal?  I was a little sad too: to see the summer play come to an end, mainly!  I was sad to leave my family too, of course, but I was still a little bewildered at my mother's reactions as I settled into the backseat with my pillow and books.  When I grew older, into my teens years, I was a little more understanding.  I started missing my family more, my grandparents were getting older and I was worrying more about them.


This recent visit 'home' was more emotionally charged than others.  We weren't sure my grandfather was going to make it.  The extreme joy that we were leaving with him alive was enough emotion in itself, but to get the phone call that he wasn't feeling well enough to see us the morning we were leaving was another whole ballgame.  We debated staying one more day, but the car was packed and the kids were ready to go home.  My grandmother was not in a good way, obviously, with getting the phone call about Denny, and with us heading out on a 14 hour trip.  I knew she was worried and scared.  Seeing the look on her face crushed me even more.  I sat with her on the porch trying to hold in the tears, failing every few minutes, praying just as often.  She and my mother walked us out to the car, we said our goodbyes.  My mother and I actually got along this trip and it was hard to say goodbye to her.  I cried when I hugged her.  There are so many things I need from my mom right now, difficult to do 600-some miles away (I'm sure over the years of raising me and my sister there were many things she needed from her mom too, also difficult to do 600-some miles away).  I tried to be strong when I hugged my grandmother.  Now I'm glad my grandfather didn't have to see me this way.  And I'm glad I didn't have to see him when we said goodbye.  It would have been too much for both of us.


We buckled the kids into their seats, Shawn got behind the wheel, I got into my seat, rolled down the windows so we could wave and blow kisses as we pulled out of the driveway.  I cried pretty much the rest of the way out of Maine.


Goodbye everyone, until next year, when we do it all over it again.  I miss you tons and I love you more.


Ooooohhhh, nooooowwww I get it.

The Original Miracle Man: What it Takes to Be a Grandfather

I wrote this post several days ago and was putting off posting it because I wanted a good, current picture of the five of us to post at the end of this.  Unfortunately, my grandfather wasn't feeling well the day we left and asked us to not come by, so I'm using a picture from last year.  He didn't want us to see him that way.  I wanted to respect his wishes; when you reach the age of 90, sometimes all you have left is your dignity.  I didn't want to take that away from him.  It was upsetting to not get to say one more good-bye, but I did leave a note for him.  Please continue to keep him in your prayers.

Denny is my grandfather on my mother's side.  He is neither biological nor legal, but he is family just the same.  He was a gift from God to our family 25 years ago after my grandfather died.  We are so blessed by him.  He and my grandmother never married, have never lived under the same roof, have always had a very proper relationship, have always been very loving.  Denny accepted me as his granddaughter from the beginning, accepted Shawn as his grandson-in-law, and has loved our sons as his own great-grandsons.  He has mentored us and treated us with respect and love.   He's been good to us. I couldn't love this man or respect him more than I do.  He means the world to me.


A week and a half ago we got the call that Denny might not make it.  He had been sick for several weeks; I had been hoping and praying I wouldn't get this phone call.  We needed to head north to say our goodbyes.  Shawn helped me throw clothes and whatever else we could think of into suitcases, made arrangements for the pets, the house and his job, then made the 14 hour trip overnight.  When we hit the Maine state line, Mom told us to head straight to the hospital, that things were looking worse.  Our GPS said we had 2 hours until we reached our destination.  Worried we wouldn't make it in time, Shawn grabbed my hand, we said a quick prayer.   Shawn told me, "Don't worry, just hang on, I'll get you there in time."  The rest of the way I prayed silently:  "Peace and strength, peace and strength, peace and strength."  Barely over an hour later, we pulled into the hospital parking lot.  I don't know how many laws we broke to get there in that time or how we made it without anyone seeing us break those laws.  Hardly waiting for the car to stop, I raced into the hospital looking for room 42. When I couldn't find it, I collapsed into a panicked puddle where a nurse found me, put her arm around me, told me to take a deep breath, asked what room I needed, then gently guided me there.  I am so grateful for her kindness, for just knowing what I needed and making sure I got there.  When I saw Denny, I knew what my mom said must be true:  this was goodbye.  God gave me the strength I needed not to cry in front of my grandmother and grandfather.  All the way to Maine, I was angry at God for taking my grandfather from me.  Upon seeing my grandfather, I was angry at Him for allowing my grandfather to suffer the way he was.  I laid my hand on Denny and asked God to please release him from the suffering.  Denny opened his eyes, smiled at me and croaked, "Where'd you come from?"  I laughed and said, "Virginia!"  Shawn soon piled into the room with our boys and Denny's eyes lit up a little more when he saw them.  As awful as he looked and obviously felt, it was apparent he was glad to see us.  The rest of our extended family all filed into the hospital room, all of us worried this was the final goodbye, but trying not to show it.  Leaving the hospital that morning was one of the most difficult things I've done.  We went back to Mom's house and waited for 'the' phone call.  Gratefully, it did not come.  


The next day, we went back to visit again, taking our prayer oil with us.  Shawn and I had already decided that Shawn would anoint Denny because we knew I wouldn't have the strength to pray without breaking down.  As I pulled it out of my pocket, Noah grabbed it instead, anointed Denny and prayed.  I found the strength from my son to pray after him.  Over the next few days after that, we saw an improvement in Denny's health.  I like to think it wasn't an coincidence.  I know it wasn't.  I know it was God's hand.  Denny still has work left to do here on earth and God saw the love his family has for him.  We've visited him every day we've been up here and I've loved watching the improvements he's made.  I say daily prayers of thanksgiving for my dear grandfather's improving health and that his health will continue to improve.  I asked Shawn if it was too arrogant of us to think our presence and Noah's prayer could be the reason for Denny's improvement.   This past Friday, my grandfather's care was turned over to hospice.  There is really nothing else that can be done for him.  I'm trying to tell myself that I've found peace with that.  Monday, he was transferred back to his nursing home.  Sadly, he is unable to return to his own room at this time and must be in the rehab unit for now because of all the care he currently requires.  Happily, he looks great and his spirits are high!  He really is the original miracle man.


This unplanned trip to say goodbye to my grandfather has led to some good talks for me and Denny.  He has accepted the Lord and says when his time is up, he's made his peace and he's ready to go.  This was a concern for me and now a huge relief.  I wanted to know I will see Denny again and I was trying to figure out how to talk to him about it, but I didn't know how.  He was so sick and I didn't want to upset him.  Fortunately, my grandmother's minister and my aunt took care of it for me! This week he has insisted that I'm an angel, bringing my grandmother by daily to visit him and coming up on such short notice from Virginia to see him (I insist the halo is store-bought and held up by the horns, which it hides!).  I've brought him small servings of the food I've been cooking for my family at my mother's and he's happily gobbled it up!  He's always loved to eat and it's sad for me that I'm just finding my talents in the kitchen now that he's not able to enjoy it.   He looks at me, holding my hand, and smiles, tells me how much he loves me, tells me I'm beautiful.   


I've also been able to tell Denny what has made him my grandfather.  He never gave me extravagant gifts, money, trips or anything like that.  Instead, he gave me unconditional love and acceptance.  He made an effort to get to know me, even when I was a 9 year old brat, insisting he was trying to replace my grandfather.  He gave me memories and fun times.   He has done the same for my husband and my sons. He has always given of himself.

I love you, Denny.  I don't know how much longer we have you, but I'm glad you're sticking around a little while longer.  I'm not ready to give you up yet.  Thank you for fighting the good fight.  Thank you Jesus, for hearing our prayers.

"NIGHT NIGHT!"

I'll be honest.  I'm not a fan of co-sleeping.  Our house is very small, so it is necessary that our bedroom be our own little private sanctum.  I co-slept with Noah only because I was a lazy and exhausted breastfeeding mommy.  I realize now that I took a lot of scary chances with his safety.  Noah didn't sleep through the night until long after 12 months, and as a new mom, I didn't know how to enforce it. Avery was easier, colic-less and reflux-less, willing to sleep through the night from the very beginning, so putting him in his crib from the get-go was fine with me.  My bed is MY bed!

So, having Avery's crib in our room here at my mother's house is an adventure, to say the least!  Last year, he didn't like the pack 'n play at all.  We were still breastfeeding, he didn't like the disruption in his schedule and we spent most nights in the rocker in the room we slept in (to avoid co-sleeping!).  This year is going much better.  He goes to bed easily on his own, Shawn and I sneak in later, crawl into bed, not daring to move a muscle.

"NIGHT NIGHT!"  Up pops Avery from his crib, checking to make sure we're really still in the room and haven't abandoned him.

"Good night Avery, we love you!"

"YOU TOO!" he says through his pacifier, then nests back into his blankies, curls up and gets comfy again.  We go through this routine about four times before he finally falls asleep and blessedly, sleeps through the night, peacefully.

The 'Joys' of Cable TV Deprivation

My mother does not have cable tv......
    So Noah and Avery have had to find other ways of entertaining themselves (*GASP*): schoolwork, toys, actual conversation, annoying their parents and each other....  The horror!
        

Fortunately for us, the hospital does.

(Can you see the drool?!)

"Lady Jane," aka, My Grandmother

I have been trying for the last two days to finish this blog.  I've realized there is just no putting my grandmother into words, no matter how hard I try.  I can't fit 34 years worth of memories into one blog.  I can't use words to help you see the things I love so much about Nanny and help you understand the things I find so endearing.

We lovingly call my 87 year old grandmother Lady Jane.  Not because she rules the roost (which she unwittingly does!), not because she is pretentious or any reason along those lines.  Only because the name seems to fit.  She has become too old to drive (and many other things), so she is comfortably chauffeured everywhere she goes and seems to enjoy it.  She has always enjoyed life to its fullest, at least from where I've watched.  She has never gone hang gliding or jumped out of an airplane (I can hear her giggle and say, "Oh my goodness, no dear!" to that!), but now she is content to sit on her sunporch in the house she shares with my mom and watch the water, the wildlife, the sunrises and sunsets.   I've always admired my grandmother.  She is from a different generation and a different world.  She is a happy person and seems content with the life she has led and the one she is leading.  Hers is a slower pace of life and today, trying to 'herd' her and my two children (carrying balloons, a purse and a diaper bag, chasing an almost 2 year old, while minding a 10 year old with Asperger's who is pushing my grandmother in a wheelchair down a hospital corridor is NOT a one-man show, dear friends!) was a circus act in itself.  Out of all my cousins, I am the only SAHM; Shawn and I have frequently talked of moving up here to help my mom (who works full time) with my grandmother.  I think today I realized I wouldn't be of much use, at least as long as the kids are at home.  I would easily exhaust myself by 9 am!  Anyway, I enjoy my grandmother's pace.  She takes things slower and thinks that makes her a bother.  I think it means I get to see things I would otherwise miss out on.  I'd rather take the scenic route and be 'bothered' than not have my grandmother at all.  I remember when she was stronger and younger, when she didn't know how to slow down and "act her age."  I remember when I got sick and acted more her age than she did!  And now I'm watching as age is finally catching up to her and slowing her down.  It's difficult to watch.  The saying is true, reality bites.


We visited every summer growing up.  She always ran out her door with her arms extended, a hug ready for us when our car pulled into her driveway.  I can hear her yelling, "There's my girls!" as my mom, sister, myself and dad fell out of the car after the long drive.  My cousins, sister and I would play from sun up until long past sun down during our visits.  Those were the days when we could still run up and down the street (and around most of the town because my grandmother lived so close) unsupervised and barefoot.  We weren't allowed in the house until our feet were clean, so she kept towels and a bucket of soapy water at the back step so we could wash our feet before traipsing through the tiny house, just to run back outside and get filthy all over again.


My husband is such a gentleman and has been so good to Nanny, so patient with her.  With Mom at work, it's been up to us to get Nan to the hospital to visit Denny and look after her here at the house (I'm not going to say "take care of" because she doesn't need taking care of).  Mom and I traded cars because Nan can't get in and out of the Jeep--let's just say her Pathfinder and my Jeep ride a little differently!  And judging from my the "Oh my!"'s and "Oh dear!"'s coming from my grandmother, Shawn isn't used to driving them differently yet!  But he's good about driving Lady Jane and humoring her.  With me and the boys 'getting air' in the backseat with each pothole (potholes up here are very different than the ones back home and unlike in the Jeep, which is built for that kind of driving, we feel every single pothole!), with Avery throwing his hands up, laughing and yelling "WEEEE!  Daddy!", Shawn is up front with my grandmother (a friend has a theory that Nan secretly enjoys the air she might catching up in the front seat with each pot hole, too!), pointing out the green grass, as well as the ice and snow that still remain.  He's so patient, pointing out the sights, giving her an arm, helping her in and out of the car.  I see him doing things for my grandmother that I don't see him doing for his own (not because he's disrespectful, but because of how his family is).  He hurries around to her side of the car to help her in and out of the car, gives her an arm to steady her, carries her purse (cardinals really are a good look on him) and is just johnny-on-the-spot.


The other morning, my pill box fell off the top of the fridge and pills scattered everywhere.  Thankfully, I am on far fewer pills than I ever have been and was quickly able to count out what I was missing.  With Shawn and Noah crawling on their bellies (Avery buckled safely--yet unhappily--into his highchair) on the floor looking for all them, my grandmother chuckled, saying, "Oh, I drop my pills all the time, you'll probably find mine!"  Noah found a pill, asked if it was mine, Nan called out, "Nope!  That's mine!" We went through that routine six times before we finally found all of mine.  Had all of us laughing quite hard!


My grandmother has raved about my cooking since I got up here (my mother is thrilled that she hasn't had to operate the stove or oven since I arrived!).  We brought some of my rosemary-olive oil bread with us.  After her first bite, her eyes closed in ecstasy, she asked what bakery I bought it from.  Let me tell you, it thrills me to no end to know that my bread is good enough that my grandmother thinks I bought it!  Woo hoo, go me!  I made grilled cheese sandwiches with it, using sliced mozzarella and a blend of shredded asiago, romano and parmesan cheeses. She insisted on a half because "I can never eat more than a half a sandwich anymore."  After wolfing that down, she said she'd love to have another half, but didn't want to bother me with it.  Even as I was making her second sandwich, she continued to insist that she didn't want to bother me!  She cracks me up.  I've made my famous Mac and Cheese (cheddar, harvarti, provolone and swiss with asiago, romano and parmesan) for her, as well as our chicken, keilbasa and couscous meal (which my mother said sounded like too much work, then was excited to see how easy it was).  Nanny even ate black beans on taco night.  She said she hasn't not liked anything I've cooked yet, so I promised her tonight's dinner (leftovers) will be garbage! :)  My mother insists my grandmother eats like a bird, but I have yet to see my grandmother put down her fork (I think it's the difference between my cooking and my mother's!)!


Nanny watches me raise my boys with her eyes wide open and her eyebrows raised.  She raised three girls and told me once that she used to think she wanted a boy until she had grandsons.  She loves them, but is glad they are grandsons!  My boys say words like "fart," "butt" and "poop" and have inappropriate dinner conversations.  Thankfully, they will never wear pink or have ribbons in their hair!  They jump in puddles and get dirty.  My youngest tells me "NO!" and my oldest--well, he's Noah, enough said there!  We sing "There's a party in my tummy! So yummy!  So yummy!" at the dinner table and follow up with "There's a poopy in my diaper!  So stinky!  So Stinky!" after dinner.  She isn't quite sure what to think of that one.


With catching air while flying over potholes, eating my food, having inappropriate dinner conversations, and watching me raise boys, Nanny's life since the Furr Family of Four invaded has been anything but boring and mundane!


I love listening to her 'dottering' (a new word I made up to describe what she does)--I tease my husband that she has Elderly Asperger's because she gets 'stuck' on subjects the way Noah does.  Occasionally she looks lost and if you ask if she needs something, she says, "Oh, I'm just thinking!"  She never naps, just 'rests her eyes.'  Nanny constantly worries about Alzheimer's, but is constantly assured by her doctors that is the least of her worries! I see the way my mother has to be with her and realize the lives we lead aren't very different.  We are both raising children; the only difference is that my mother's child is 87 years old (and I don't mean that out of disrespect for my grandmother: I mean she requires the patience one would use with a child). We drive past a fire hydrant everyday and hear how it looks like a child from far away (Noah and I are tempted to sneak out in the night to dress it in a hat and coat just for fun!), we hear about the green grass, about the small church in a neighbor's yard that plays Christmas music ("And your mother and I have been meaning to stop and listen to it but for one reason or another haven't yet and I bet by now they probably aren't playing Christmas music in it anymore, which is a shame."), we have to observe the ice and the ice fishing shacks (and hear the rundown on how they really shouldn't be allowed out there)--there are so many things I could tell you that make me smile about Nan, but it would take me forever!  And there's just no putting Lady Jane into words.

Twenty-six years ago, Nanny buried her husband of 37 years.  Not long after that, she buried her best friend of many years.  Over the years since, she has buried many other friends.  Her boyfriend--my grandfather--Denny, has seen her through those times.  And now we wait with her, as we fear he will be next.  Even as he suffers, we're not ready to let him go, and on some level, I'm not sure he's ready to let go either.  I watch her day after day and I see her strength.  I see that she is stronger than I am (or better at pretending!).  My grandmother and Denny never married, have never lived under the same roof and have never shared a bed (one of my divorced friends declared Nan her hero, which cracked my grandmother up!).  Denny is not my biological grandfather, nor is he even my legal grandfather, but he is the one I have the emotional attachment to.  He has given me the love and the memories; for that, I will always be grateful.  I remember my grandfather and have fond memories of him, but Denny is the grandfather God has gifted me with for the majority of my life.  And he is the partner God has given Nan for the last 25 years. 


We wheel the hospital wheelchair right up to Denny's bed so Nan can lean over to kiss him and then they just sit and hold hands.  They don't speak much as Denny nods off occasionally.  It's beautiful.  I feel like an intruder, watching such a private moment, wiping away tears, but I love seeing the love between them and I want to watch it.  I can't make myself look away.  


Noah's prayer gave me hope that Nan will have Denny will have a little while longer, and each day Denny looks stronger to me.  I keep hoping and praying.  With God, there is always hope.  For that also, I am grateful.

Anyone can a Father, but it Takes a Real Man to be a Daddy

Shawn rushed Avery off for a diaper change tonight, singing, "There's a poopy in my diaper!  So stinky!  So stinky!"  I heard peels of laughter coming down the stairs and realized more than a diaper change was going on up there!  

I remember my own father, then I see the kind of daddy my husband is to our boys and I'm so glad they don't make fathers like they used to.  I'm so happy my boys have the newer, updated Daddy version.

The Warrior

We recently had to make an emergency trip north, traveling 13 hours through the night with a restless 10 year old and a screaming 20 month old.  My grandfather has been sick and we got the call that he had taken a turn for the worse.  We grabbed our prayer oil on the way out the door, agreeing on the way up here that Shawn would anoint my grandfather and pray over him when we got to our destination because I wasn't sure I had the strength.

In my last blog, I mentioned that Noah is my hero.  I'd like to reiterate that.  He gave me strength today.  I've heard my son pray before, but this was different.  Today, the Son shined through him.  As a mom, I think this was one of my proudest moments.

We went to visit my grandfather this morning and took our oil with us. We all gathered around Denny (my grandfather)--his son and daughter-in-law, my grandmother, Shawn and Avery, my mother, Noah and myself--preparing to anoint him and pray.  I asked Denny his permission to anoint him and pray, then gave everyone a rundown of what we were doing and invited them to pray with us.  As we prepared to anoint Denny and lay hands, Noah grabbed the oil, made the sign of the cross on Denny's forehead while reciting, "In the name of the Father, the Son and the Holy Spirit."  Then my son prayed the most beautiful prayer I've ever heard.  The words just flowed through him from the Holy Spirit. There wasn't a dry eye in the room.

Today, a Prayer Warrior was born.

My Son, My Hero

I was reminded (again) of a valuable lesson tonight.  I'm the one trying teach Noah these many lessons about getting through life with Asperger's, but HE'S the one who has to really do these things and put them into practice.  My son is a rock star.

He's my hero.

Day 3,346 of My Captivity

Some of you have called me a saint or an angel for not only raising a child with Asperger's, but also for homeschooling him.  I'm neither of those (trust me on that one!).  I'm simply a mom trying to do (limping along) what's best for her son.  You would be surprised to find out what you are made of too, if  your mettle were tested in the ways mine has been.  Don't cross the Mama Lion.  Roar.

These past three days however, this Mama Lion has seriously considered not just selling her son to the gypsies, but just giving him to them.  I've really thought Asperer's was (still is?) going to beat me.  Going over the highs and lows of the past week with Noah's OT last night (and there have been quite a few highs, thank goodness, or neither one of us would have survived), I kept going back to the past 3 days.  I just don't know what happened.  I repeatedly used the word 'ornery'  to describe to Noah's behavior.  It took him 4 hours to do 20 minutes of vocabulary work on Monday and the day went downhill from there.  It wasn't that he couldn't do the work, it was that he didn't want to.  He was being lazy about it.  He was sassy and nasty. He's been mean to his little brother and just a general poo-poo head (and that is putting things nicely, dear friends).  At some point we should have just called it a day and kicked Noah outside (a luxury of homeschooling, we could have just picked it up the next day), but at that point would he have 'won' and tried that behavior the next day (which he did anyway)?  (By the way, we're on Day 4 of this behavior, I can't scrap a whole week of school)  His OT reflected thoughtfully on all of this, then said, "Well, having been a 10 year old boy myself once..."(Oh dear, here it comes...) "I wonder if this isn't all Asperger's.  Some of it sounds it sounds like 10 year old boy."  Yes, I have been defeated not just by Asperger's, but by pre-adolescence.  Just when I think I have a handle on one thing, another curveball lands in left field.

Hmph.  Back to pacing my cage.

God is My Super Glue

I had this all nicely written out in my head, but now that I’ve actually sat down to write it, the words don’t seem to flow as well (of course!).  Writer’s block or something deeper?  Hmmmm.

Some people call God their co-pilot and have other euphemisms for Him, but I think about how He holds me together, so I prefer to think of Him as my superglue.  Every time something in my life drops me to my knees, it reminds me that I'm where I should have been all along and I'm now in the perfect position to pray.

I can’t remember a time in my life that I haven’t struggled with self-esteem/self image issues and depression (woe is me!).  I have theories, my therapists throughout the years have had theories, my friends have theories on where all my issues come from.  I won’t get into all of that because I’ll end up looking like a dog chasing her tail.  While it could be fun for you to watch, it won’t get me anywhere!  My issues evolved and grew when I got sick, evolved again when I became a parent and now, for whatever reason, seem to rearing their ugly head again.  I think each time it’s God telling me I’m not fully healed, no matter how much I like to tell myself I am.

I look back over the years at the many different versions of my broken selves and I see how each time I’ve fallen apart, God has picked up my pieces, wiped me clean and put me back together.  He knows how to soften the rough edges so they’ll fit back together just right.  He knows exactly how much ‘glue’ to affix here and there (a little dab will do!).   He knows which piece goes exactly where without any maneuvering or second-guessing.  Right now I’m in need of that superglue again.  Things are falling apart in my life.  My plate is overflowing and things are falling off.  I’ve never been one to ask for help (or know how to ask for help or accept it when offered).  I need a good cry, but I’m afraid the tears won’t stop if I start.  Some days I think I’m Super Mom and can do it all, other days I'm defeated before I even get out of bed.  Lately, I’ve wanted to request my own personal wailing wall, “Heavenly Father, hear my cries!”  And the thing is, my life really isn’t bad.  It’s quite wonderful, there’s just a lot to it.  It’s more than Noah, more than my marriage, more than my worries about neglecting Avery, more than the new medication they started me on, more than my sick grandfather, more than my daddy issues…. My heart aches for what my friends are going through, what some of my family members are going through and what members of our community are going through. There’s always going to be something else.

I won’t go into where I’d be right now if it weren’t for God trailing along beside me, picking up my pieces each time.  I look around at where I am because He has been busy doing that for me and I’m grateful I’m here instead of there.  I look at all God has gifted me with, at my husband and our boys, I see how God has renewed me with grace and strength to keep going when I haven’t wanted to, I see how He has never once given up on me, even when I've wanted to give up on Him.  All I have to say is, I’m so very glad He’s my superglue.

(I had to laugh when I noticed the middle bottle is actually Krazy Glue.  Please laugh at the irony with me!)