Special Events....Good Times

We made it to Saturday!  What a week!

And our weekend......completely insane...but filled with good things.

I've been dying to blog about what we are doing today but I've had to hold back because it's a surprise for one of our closest friends.  (And she reads my posts!)

Our dear friend, Kim, is celebrating her 50th birthday next week and we are throwing her a surprise party.  The theme is Chocolate Bliss!

Sarah and I did lots of baking yesterday!  I couldn't have gotten so much done if it hadn't been for both of my girls...Sarah helped in the kitchen and Ellie helped a little in the kitchen and a lot with keeping Kate and Luke entertained!

We made 2 cheesecakes, several dozen chocolate and vanilla mini cupcakes, dozens of chocolate chip cookies, chocolate cherry brownies, and homemade chocolate cups that we will fill with mousse this morning....and my sister-in-law made chocolate covered strawberries and pretzels!  A lot of work but a lot of fun, too.

My mother-in-law and Sarah made chocolate lollipops to use as favors and 2 vases filled with flowers from her yard for the tables...so pretty!

So today will be filled with cleaning and set up and last minute details that will hopefully make tonight very special for a very special person.  It's something I've thought about doing for months and I'm so glad we were able to get it together.

Here's the birthday girl with her two beautiful daughters.(The oldest is our godchild:)

So that's today.

Tomorrow will be filled with all the packing I haven't done for our trip to Hershey, PA!  We leave Monday morning at 4am so it's crunch time!  Planning and prepping for the party has taken up lots of time so, other than a master list that I keep adding to and Hershey Park tickets that I bought through AAA on Thursday, I've got a ton to do!

And, two of my sons agreed to compete in a triathlon leg on Sunday morning with my sister's friends daughter, at the suggestion of my sister, without discussing it with me!  Ugh....so now some people have to go the Mass tonight at 4(prime party prep time!). Plus, my last experience at a race(read here) was less than pleasant and that is stressing me out a little, too.  Especially since Mike is doing the swimming leg and he has no experience swimming in a race!

So they will be gone most of tomorrow morning!  Andrew's response..."Mom, it takes me like 5 minutes to pack."  Yeah, good for him!  Between making food for Peter, supervising the older kids' packing, packing for the little kids, doing all the laundry, looking up all the last minute details, nursing Kate, etc., etc....it will be a full day of packing for me!

We are excited for our trip.  I can't believe it's here.  We've wanted to go on a family vacation for a while but didn't think it would happen again this year for financial reasons.  A few months ago, a friend gave us an incredible gift...so here we are planning a special getaway!  We are looking forward to making some special family memories.  Our expectations are still low because a 7 hour car ride + 10 people in a van + 10 people in 2 hotel rooms + 2 children that wake up in the night= a whole lot of opportunities for crabbiness and frustration  practicing patience!

So we will set our eyes on our focal point....Hershey's INCREDIBLE chocolate milk shakes!

A New Path

Peter did a slightly less than half day at camp yesterday and had no behavioral issues(hooray!).  Originally, the plan had been to do another half day today, but my heart was telling me to end on a good note.  So we did.

As hard as this week has been with him, I feel like God has been opening my eyes to view Peter in a different way...in a more complete way.  I've barely started to wrap my head around it yet, but I do want to share what I'm thinking so far.(So please bear with me if it's somewhat discombobulated!)

Other than the obvious reason that, as a mom, I would be upset and discouraged that my child has bitten or slapped another child or his aide (insert painful groan!)........I am struggling with the "why" to Peter's behaviors lately?  Besides absorbing this week as a failure as a mother to consider something that I thought Peter would find "fun" to be so completely overwhelming to him, I find myself questioning my connection to him and his feelings and his needs.

Over the course of this difficult week, I have spent some time asking God to help me understand why Peter is acting this way and what to do to help make it better.  Peter can be such a contradiction....too much structure and he rebels.  Too little structure and he can't seem to regulate himself.  I think that's why summer camp always tended to be a more positive experience....it had some structure but the demands were fairly low and there was a lot of leeway to be flexible and spend extra time doing favorite activities(read: pool time!)  if he was struggling with some of the other activities.

This week, nothing worked.  Peter was just overwhelmed.  Even today, Jeff told me that as they were heading to the pool a group of campers was walking towards them.  Peter's grasp on Jeff's arm tightened and he became visibly stressed.  Peter actually stopped and turned his back to the group until they passed.  That made me so sad....he's never done that before.

Yesterday, Jay's uncle sent him a link to a video about an autistic teen who, until age 11, had no verbal communication.  Then, one day when she was 11, Carly started typing.  And now, she shares so much of how she is feeling and what she is thinking....all through typing.  The way she feels and thinks was trapped inside of her for 11 years.  Everyone thought she was simply autistic and mildly mentally retarded...but she was so much more.

How much of who Peter truly is....is simply trapped inside of him?  For most of his life we have worked so hard at keeping him safe(not an easy task for the "bolter" he was for many years), and trying to regulate his diet so he would actually sleep, and give him structure so he would not just walk around aimlessly rarely connecting with anything all day long.

For so many years, his need of constant supervision(and I mean constant!!!) and his lack of sleep, and his constant movement just completely exhausted us and burned us out.  When Peter was home...we had to be "on" all.the.time.  No matter what I was doing, one ear was listening to where he was walking.  Two minutes of quiet sent us looking to see where he was....always poised to deal with a possible escape.

Going outside in the yard meant dozens of promptings to "stay in the yard" and you could NEVER take your eye off of him.  Trips out in public meant Peter strapped in the carriage, or, once he outgrew it, holding someones hand at.all.times...no exceptions.

It's hard to enjoy someone that requires the supervision of a toddler at their most difficult developmental stage when that stage lasts for YEARS!  Peter exhausts us.

I'm sorry if that sounds terrible.

Despite the fact that he was so difficult, we almost always try to include him in what we're doing as a family.  Our friends and family are very accepting of Peter....but I know we overwhelm people just in the sheer size of our family and topped off with a child that just never stops moving or getting into things.

Over the past two years, Peter has gotten a little easier.  He generally stays in the yard without reminders.  He mostly sleeps through the night  as long as he hasn't gotten into things he shouldn't be eating.  (I know for some kids diet doesn't make a difference, but it makes a big difference for Peter!)  We don't have to have keyed locks on all the windows so Peter doesn't escape.(Yeah, that was a great phase!insert eye roll here)  It doesn't take me weeks to "get over" the burnout when Peter is home for a vacation week.

All positive things.  But this week has brought his needs as an independent, growing and changing person more into focus.  Seeing the video of Carly and the interview with her parents has got Jay and me thinking...are we missing something?

We've spent so long just trying to survive each day that maybe we let our exhaustion, and our disappointment, and sadness, and grief over Peter's diagnosis and all his challenges keep us from seeing who Peter really is.  And, more importantly, maybe we forgot to hold onto hope for who he can become.

How do you know someone who can't let you in?

How do you keep trying to break through to something that may or may not be there?

And, more importantly, have I given up thinking there is more to Peter than what his disability shows me on the surface?

Like I said before, I don't have it figured out at all.  But maybe there is a greater good that will come out of this rough week.  It sometimes seems like the best changes in life come in the wake of difficult moments.

Sometimes I'm so busy just trudging forward trying to get through daily life, I forget to look up and see that God opened another path for me.  He uses those challenging moments to get me to look around at where I am and what I'm doing.  Though I don't appreciate it at the time, the new path always ends up being better than the one I'm on.

It just takes me a while to acclimate to the change in scenery!

A Little Consolation

Peter's camp week saga continued yesterday.  I am resigned to his time at camp being a wash:(  His aide and I discussed it and we will try half days for today and tomorrow that mostly include swimming and lunch.  If it doesn't go well today I think I will just ax tomorrow.  I'm hoping to end the week on a good note...but if it isn't possible then I'm just crying "uncle".

Peter was supposed to go to camp for one final session the week after next.  Next week we are driving to Hershey, PA.  I'm thinking that another transition from vaca back to camp will not be pretty, so I withdrew him.  I don't want another repeat week...why bang your head against the wall on purpose, right?

I think Peter just needs a break.  I think?....hopefully?!?  So frustrating not knowing how to make it all better!

The stress of Peter's camp behaviors is getting to me.  My stomach hurts with knots of dread on the way to drop him off each morning...and then, again, on the way to pick him up.

I think my anxiety and stress over it was greatest yesterday morning.  While driving to camp, I was catching a visual glimpse into my inner emotional state.  I always visualize my emotional life as a beautiful crystal vase....it's been shattered often, sometimes fixed so it looks brand new again, sometimes in pieces held together with duct tape.  Well, yesterday morning, I saw that the vase was just a pile of sand running through my fingers.

And I thought, "Oh, crap, what do I do with that?"

Obviously, it was way beyond duct tape or super glue!  I know I need the Potter to put this vase back together.  That prayer was deep inside of me where I know only God can hear it.

I turned on the radio looking for music to be a balm to my soul....wrap it in a melody and comfort it with words of encouragement.

Dierks Bentley's song "Home" was on...and the chorus resonated with me:

It’s been a long hard ride,

Got a ways to go

But this is still the place

That we all call home.

It’s been a long hard ride,

And I won’t lose hope

This is still the place

That we all call home.

Then, I listened to Trust in You by Jeremy Camp.  It's a great song with a great beat and it's words are always consoling to me!

I definitely needed that!  

Just trying to take it one step at a time...and trying to plan for a party...and a road trip...but more on that later!

Stab, Stab Goes the Dagger in My Heart

Peter has been having a really tough week at summer camp.  He has been aggressive a few times...mostly towards his aide but once towards another camper.  I picked him up really early on Monday..around 12 when camp is supposed to go until 4.  Peter just couldn't get himself together.

Yesterday we tried again.  I started to relax as noon came and went without a phone call.  When my cell phone rang just before one and I saw the number my heart sank.  Peter had started bawling at lunch for no apparent reason.  It was the first time Jeff saw Peter cry...there were no tears during the 2 other weeks Peter was at camp earlier in the summer.(And much smoother days, too)  Jeff tried to get language out of him to figure out how to help him.  Peter finally said "hot".  So Jeff took him to the air conditioned nurse's office to give him a break and see if he could pull himself together.  It seemed he was relaxing...and then out of no where he bit Jeff's knee.  Ugh:(

Jeff tried to re-integrate him with the other campers to go swimming in the pool, but Peter was too all over the place and Jeff and the head of the camp were concerned he would be aggressive with the other campers again.  So, I went to pick him up early...again.

I also found out that at the beginning of the day Peter hi-jacked a golf cart.  It seems that a young maintenance man left the keys in the on position in the unattended golf cart.  Jeff had turned his back to Peter for 30 seconds to put down his back pack and, when he turned around, Peter was sprinting to the golf cart.(Peter is quick!)  Peter jumped on the golf cart and put his foot on the gas and it went.  Jeff said that riding in a golf cart seems so slow but when you're trying to catch it....not so much.  Peter of course was having the time of his life!  I can just imagine the wild look of pleasure in his eyes, the giant grin that covered his face, the maniacal belly giggles....all as poor Jeff is chasing him.  (Which made the ride even more exciting for Peter!)  Thankfully, Jeff is young and was able to overtake the golf cart since Peter was heading for the woods and doesn't know how to step on the brake!

I honestly didn't know whether to bust out laughing or start crying....so I ended up laughing until I cried!  Mostly because I could just picture Peter's face and see his complete joy at such an adventure.  Thank God no one got hurt...including Peter!  And, yes, I have addressed it with the camp because that was extremely dangerous leaving a working golf cart in an area of 75+ kids...any of them could have gone rogue to sit on the golf cart and accidentally get a joy ride out of it.

Of course, it had to be my kid that did it...Ugh, again!

So by 2:30 yesterday, I had brought Peter to camp, worked for a couple of hours, come home briefly to get my children and scarf down lunch, drive 20 minutes to pick up Andrew's girlfriend who was spending the afternoon/early evening with us, and then pick up Peter at camp.

Since it was Luke's birthday, our families were coming over for a party.  The house was cluttered and in need of  "mom cleaning", the baby was clingy and crabby, I was feeling really awful and discouraged about Peter and not knowing why he is acting up at a place he has always had fun at or how/if we can make it better, and the birthday boy was melting down and throwing temper tantrums because he wanted a particular  truck to go on top of another particular truck and it kept falling off.  Ugh x 3!!!

Yeah...where's that mother of the year award!(Insert sarcasm here)

So, today we will try again.  Jeff was calling Peter's home therapy coordinator to try and get some ideas to help Peter.  He will try a visual schedule and a timer today.  I'm going to suggest swimming first thing...hopefully before other kids are in the pool and to get Peter cool and hopefully get his sensory needs met to make today a better day.  I'm going to see if Peter can swim at lunch time, too, and just have his lunch a little early or a little later.  For some reason, Peter isn't doing well around crowds of kids this time at camp. This wasn't a problem when he was there earlier in the summer.

Maybe he's just burned out and needs to be home?  Maybe it was too much going from his 5 week half-day summer program to a week of camp?  Maybe it is just too many transitions?  Maybe it's just too hot outside and it's making him unable to deal with the crowds this time around?

It would be so much easier if he could just freaking tell me what is going on in his head!!!!

It's so frustrating not knowing how to help him.  It's so embarrassing that it's my kid that's biting.  I just want him to enjoy camp.  I want him to be good.  I want him to learn and play and have fun.  I want him to be as "normal" as he can.  At times like this, it's so glaringly obvious, and painful, that Peter is so.not.normal.

Stab, stab goes the dagger in my heart....

All About Luke!

Today is Luke's 3rd birthday!  I cannot believe that it's been three years since we met the little man who has brought so much joy to our family!  He was a new little life given to us at a time when we thought we were moving on to the next stage in our lives....but God had other plans.(And His plan was really good :)

I will never forget the look of joy on Jay's face when I told him I thought I might be pregnant.  I will never forget the cheers from the kids when we told them I was pregnant.  I will never forget the tears in Jay's eyes as we met Luke for the first time and the gentle words of the doctor who delivered him...."No matter how many times you see it, every birth is very special."

I won't forget how the teenagers fought over time to hold Luke as a baby....and how they taught him how to play baseball and dribble a basketball when he could barely even walk!  I love the way they want to do the things we did with them when they were young so that Luke gets to experience it....anything from going to the zoo to only buying primary color play-do so that he can have the fun of mixing and "creating" colors himself!  And no one else but Luke can get away with waking any of them up in the morning without getting a grumpy response!

Luke is a joy!  The way he thinks and talks is so cute...his imagination is incredible....and he is constantly amazing us and making us laugh!  (He also has a stubborn streak that can push any of us to the limits of our patience!)

Luke's birth and development have brought a lot of healing to all of our family.  For the older boys, they were old enough to teach and play with and enjoy a little brother who had the ability to learn and play in a normal way.  For me, going through Luke's pregnancy without the depression I had struggled with during Peter and Ellie's pregnancies, felt like it was a do-over...and, for the most part, I was able to enjoy being pregnant.  Being given the gift of a new life that we weren't expecting gave me an even greater appreciation of Luke growing inside of me.  Luke is a blessing!

His big brown eyes...... 

And infectious giggle....

His silly faces......

His sweet little grin.....

His desire to be a part of eveything.....

His LOVE of trucks....

Becoming a big brother....

Loving his little sister....

Happy 3rd Birthday to our special Little Bear!

Just a Little Godincidence

I was able to get some quiet time last night(thanks, honey:) and a slightly better night's sleep(thank-you, Luke) so today was feeling a little brighter.

I got to spend an hour doing adoration at church last night.  I enjoyed the silence immensely.  I didn't bring my own book with me, so I picked one off the book shelf.  It was the Life of  Faustina Kowalska written by Sister Sophia Michalenko.(One of my all time favorites.)

St. Faustina(she was canonized by Pope John Paul II on April 30, 2000) lived in the early 1900's in Poland.  She received incredible visions that led to the The Divine Mercy devotion.

Several other people in our parish that do adoration at different times are reading the book as well.  There were multiple makeshift bookmarks holding spots where they left off.

I decided to randomly open the book, searching for some tidbit of inspiration to refocus my heart and mind away from the tired, mildly depressed funk I've been stuck in lately.  I ended up opening to one of the makeshift bookmarks that someone had labeled "Michelle's page".  I have to admit I was a bit surprised.  I think I know who the Michelle is that is reading the book, but it felt a little like a "Godincidence"....a God inspired coincidence.  I mean, really, what are the chances?!?

So I read "my page"(lol) and it felt right.  What I got out of it was that this is a time of introspection for me...and despite what's going on in the outside world, I need to stay close to God in my inside world.  I'm being worked on and it will take a little time.(And believe me, there's a LOT to work on!  I am an over budget, overtime job for sure!)

This morning when I was thinking about it, these types of pictures popped into my head(just add a little caution tape!)

    

That's me....a constant work in progress.  I'm just glad to be heading in the right direction!(At least for today:)

Something Needed..Just Not Sure What!

Do you ever have those days when your life feels like a 500 piece puzzle....all jumbled and scattered all over the floor with no picture to use as a guide?  And no matter how much you try to work on it, you just can't get it to come together.  You have a corner together on one side, random clumps together here or there that you have no idea where they truly fit.  But no cohesion, no plan, and trying to find that special piece that will help to tie it all together.

That's how I feel right now.

And I'm just so tired.

Luke is on the verge of 3 and still waking up during the night.  When he wakes up he's really still half asleep and talking through his dream.  Last night he was babbling about seeing the excavators.  But he cries too, and because he's only half awake he doesn't even know what he needs.  And this night waking happens 2 or more times a night.  Last night I think it was 3 times...might have been 4.

Kate, who had been doing such a great job sleeping, is now waking multiple times a night, too.  I don't know if it's because of teething(those top two teeth have been looking like they are getting ready to arrive soon), or  if it's because she is in a very clingy stage and just feels insecure, or if she is developing crappy sleeping habits just like her siblings.

Being woken up 6 to 8 times each night is starting to take its toll.

I know it will get better....of course, I've been saying that for almost three years now.  But, really, they have to sleep through the night someday!

I guess I'm just feeling burned out and tired....and not sure how to make it better.

Plus, when I'm tired, all my negative feelings just seem to get magnified.  I now it's a choice to focus on all the blessings in my life....it's just not so easy to do that right now.

Trying to just take everything one moment at a time!

So, in the words of Dory....."Just keep swimming, just keep swimming, just keep swimming, swimming, swimming......"