We'll pick up where we left off...

I think this appropriately sums up our trip to Michigan this summer, as well as our return to Georgia.  Seems like an obvious title and statement, but it actually comes from one of my new favorite songs (shameless plug time).  The song is appropriately titled 'We'll Pick Up Where We Left Off."  It is by O.A.R.  The lyrics go...

Somewhere in the party lies
We're hiding all our tears tonight
It's more than us just hanging out
We're making every second count

Nobody's good at letting go
And I don't mean to let it show
I was fine until I saw
Your suitcase by the door

Hey, don't say goodbye, just say goodnight
And we'll pick up where we left off
We'll say hello and welcome home
And we'll pick up where we left off

Light me up and fill my glass
Dancing while the cameras flash
Like tomorrow's just another day
And you never have to go away

In between those red balloons
Broken stars and yellow moon
Someone turned that music loud
Sing along and let it out

Hey, don't say goodbye, just say goodnight
And we'll pick up where we left off
We'll say hello and welcome home
And we'll pick up where we left off

Telling stories, making toasts
You know I'm gonna miss you most
Time will bring you back to me
Like we never skipped, skipped a beat

Singing, hey, don't say goodbye, just say goodnight
And we'll pick up where we left off
We'll say hello and welcome home
And we'll pick up where we left off

Hey, don't say goodbye, just say goodnight
And we'll pick up where we left off
We'll say hello and welcome home
And we'll pick up where we left off

It is a great song and pretty well describes what it is like to leave home.  Since moving away I have always known that I need to take full advantage of the time I have with people when I am there.  It had been two years since our last trip to Michigan.  In that time, my grandfather, Alli, and my uncle passed away.  We had a lot of catching up to do with family and friends and we did just that.  Below are some photo highlights from our trip.  

We made a quick pit stop in Dayton on our way up and had dinner at Milano's.  Life came full circle when I used a paper towel to open the bathroom door and had an immediate flashback to Thursday night Tim's sludge.  My, how times change :)

Samantha visited the East Side favorite, Emily's, Home of the Meat Pie, her self proclaimed favorite food!

We had a rainy day trip to Harbor Lanes...

Samantha took her first tap lessons at Dancer's Workshop and met Ms. Mary Lou, the woman responsible for my own dance lessons.  It was so fun to take her back to the same studio where I took dance for so many years.  Many of the familiar faces have moved on, but we love Mary Lou and it was so nice to see her!

 Samantha took her first motorcycle ride...

 not really...she looks pretty believable in that helmet though, right?!

We spent some time at the Edsel Ford House in Grosse Pointe.  They had a Peter Pan exhibit.  We stopped in for some photos with Tinkerbell and Wendy.  We also explored the cottage where they had the original artwork by Mary Blair and information about how Peter Pan evolved from J.M. Barrie.

 My mom and I took Samantha to Greenfield Village one day.  This is a photo of us on the carousel.  Samantha also enjoyed the train ride.  I can't wait to take her back here again!

We celebrated Aunt JoAnne's birthday and enjoyed a surprise visit from cousin, Terry!

 The kids fed the giraffes at the Detroit Zoo!

 We visited Aunt Carrie, Uncle Luke, and Millie in Chicago.  If you're wondering why I am covered from head to toe, it is because I was covered, for the majority of our trip up north, in poison ivy.  After two rounds of prednisone and one round of antibiotics, I think it is finally clearing out of my system.  No more weed pulling for me!

On our last weekend home we took a driving tour through Detroit.  During our trip we stopped in Belle Isle at the Scott Fountain.  Belle Isle has come a long way since my last trip there, which was probably in high school.

Samantha snuggling in with Gigi

 We also made it up to Lexington, Mi, which is in the thumb, on Lake Huron.  Our good friends, Mary Claire and Steve Elmer have a house up there.  So we spent a couple of days with them.

 Some other non-photographed memorable times were spent in Grand Rapids with my friend, Adrianne, and her family.  I also enjoyed a memorable night out with the infamous Yia Yia's, my mom's good friends from work.  I was able to enjoy a couple of 'girls nights out' with my friend, Mary Claire.  We talked a big game about revisiting some of our favorite haunts, but settled for the more age appropriate Mike's on the Water, Telly's, and Andiamo Trattoria.  Some things are better left in the past.  We met up with my friend Corey and her family in Chicago and my friend Lauren and her family.  I was also able to connect with my good friends from college, Sarah and Emily.  The only people we missed were my friend Kate and her family in South Bend due to a random flu :(  We were disappointed to miss seeing them, but hopefully will be able to catch up with them soon!  All in all, lots of time spent with friends and family and the beginning of many wonderful memories that will hopefully continue to be made year after year.

It was sad for me to leave Michigan and return to Georgia.  I love my childhood home and being with my family and friends.  I enjoy my life in Georgia with my family, but there is truly no place like home, for me.

We were welcomed with hugs, kisses, and much excitement by Jason's parents when we arrived home.  They have been with us for a month now and are settling in to their new digs.  We love having them with us!   Samantha started school on Wednesday.  Below is the photo from the car as we drove her to her first day.  She fell right back in to her routine and was happy to see her teacher and friends. Each year they ask the families to send in a photograph.  It tugged on my heart a little to send in the picture of the four of us.  Just one of many signs that time is marching on.  We talk about and think about Alli often, but it was sad to send in the picture without her in it.

On our way home, Jason and I stopped at Scottish Rite to drop off the money raised by Deloitte during July's Casual for A Cause.  Over the course of the month they raised $2,000, which was donated to the Palliative Care Program at CHOA.  No photo of the hand off, but we received a tour of the newly opened PICU.  They added about 25 beds (which were definitely needed!).  It is amazing.  The rooms will be so much more comfortable for patients and families who need to stay there.

Samantha had her first tee ball game today.  They made it through just over half an inning before the sirens went off due to thunder and lightening.  She is playing on the Clemson Tigers.  We were so proud of her first efforts!  I can't wait to see the difference between the first and last game.  Pictures to come!

Joshua is doing great.  He is starting to talk and finally has some more teeth popping through his gums.  He loves to get in to whatever Samantha is doing.

We have a quick trip to Hilton Head coming up, as well as Jason's birthday this weekend.  Lots to look forward to!

Family Update

I am going to have to start keeping a list of blog topics.  I have had many random thoughts and subjects cross my mind over the past 2 months, but not enough time to get an entry going.

We have had a wonderful start to our summer.  We spent Memorial Day weekend in Raleigh with Jason's brother and his family.  It was nice to be there to celebrate my nephew, Brayden's, birthday.  The boys (Chase, Brayden, and Walker) are so great with Samantha and Josh.  While we were there we found a strawberry patch.  Below are some photos of the kids picking strawberries...

 School ended for Samantha the Thursday following Memorial Day weekend.  She started her summer with her first set of swim lessons at the YMCA.  She enjoyed her lessons and her teacher, Miss Imogen.  She loves the water and we look forward to signing her up for another session.  The lessons were huge for Samantha.  Prior to starting her lessons, she would cling to Jason or me in the pool, wouldn't leave the side, wouldn't put her face in the water, and did not want to float independently.  Her lessons gave her the confidence to float on her own, put her face in the water, and start to learn some basic strokes.  By the end she could "swim" from one end of the pool to the other with her noodle wrapped around her.  In addition to her swim lessons we have made trips to the library, spent time at the park, enjoyed visits with our friends, Grace and Ella, Grandpa Jay and his friend, Gary, and Grandpa John, prepared for Grammie and Grandpa Jay to move in to our house, and packed for our big trip up north.  It has been a busy summer!

Joshua continues to grow like a weed!  He started walking right before Memorial Day and I have had a hard time keeping up with him since then.  He is in to anything and everything he can get his hands on.  Below are some photos of him helping me to unload the dishwasher...

Josh loves being read to and playing outside, especially being pulled in his blue roadster, and going in the pool.  He is still a great little eater and eats just about anything I put in front of him.  While he enjoys the independence of walking, he still from time to time comes over asks to be picked up, pats me on the back, and then lets me know it is ok to put him down again.  He is so sweet.  I love those little moments.

As I'm sure some of you know, we recently celebrated Alli's birthday.  We have been working on a project at home, in addition to the monthly floral arrangements, for her.  One of the women in the grief support group I attend talked in one of our sessions about some beautifully painted rocks that she admired on a neighboring headstone (I know - it is morbid).  Anyway, it is a Jewish tradition to leave a rock at the gravesite to let others know that the deceased has not been forgotten (an abbreviated explanation).  So, I thought it might be a fun(?) art project for Samantha and me to paint rocks that we could occasionally leave at Alli's headstone.  If you know me at all, you know that art is not one of my strong suits, but it was a fun project for Samantha and me to work on together.  I did the research online (thank God for pinterest!), picked up some art supplies from Hobby Lobby (love them!), and painted to our hearts content.  Below are some photos...

On Alli's birthday we celebrated with a few friends by having dessert and releasing a few balloons and a paper lantern with messages to our sweet girl.  We had visited the cemetery the night before and brought her July flowers.  All in all it was a special time of remembrance and something I hope we can repeat each year.  Below are a few photos...

 It is hard to put in to words what that day was like.  I can't think too much about it.  Her actual birth day was filled with such great hope and promise of what the future would hold.  Much like it is for any child.  It is still difficult for me to piece together what actually happened and how things went the direction they did.  I know there was a much greater plan for her and our family and that gives me great comfort and consolation.  I just hate that it came at such a great price.

On Wednesday, after Samantha's last swim lesson, we packed up and headed to Michigan.  Samantha and Joshua were troopers, as we drove straight through without stopping overnight.  Both kids are excellent travelers.  They enjoy their movies, books, naps, and other activities in the car.  The highlight of the journey for me, aside from arriving back home, was a stop in Dayton for dinner.  Those of you who know me well know that the University of Dayton is one of my favorite things.  I loved my time there and have such fond memories and made some wonderful friends.  It was great to drive Samantha around campus and show her where I lived.  I am starting the brainwashing at an early age :)

We are planning to be up north until the end of July.  We are going to spend a lot of time with family and friends.  Jason will join us in Chicago toward the middle of the month after he helps his parents get settled in our house.  It has been two years since I have been home and it is wonderful to be here with the kids!

As a side note - we have set up a page on the Children's Healthcare of Atlanta website.  The donations made on this page will support the Palliative Care program at Children's.  We started the page to help facilitate donations that will be made by Deloitte employees during the month of July as a part of their "Casual for a Cause" program.  However, anyone can make a donation through this link.  As you may have read in an earlier post, the Palliative Care Team (PACT) was invaluable to our family.  We have come to learn more about them over the past few months, most importantly that they receive a very low rate of reimbursement from insurance for their services - close to $.25 for every dollar of cost incurred.  Therefore, their service is largely funded by private donations and the hospital.  The donations do not have an administrative fee taken out of them, therefore, every dollar donated directly benefits the needs of this team.  They are currently working to develop relationships with outpatient hospice programs to help facilitate pediatric hospice care, as well as to broaden their service within the hospital.  The only way they can do this is by adding additional staff.  They also have a fellowship program that helps to train future practitioners.  Any money raised directly helps them to accomplish these goals.  Many of you made donations to the hospital already.  We have asked that those donations be directed to the Palliative Care program and the foundation is working on making that happen for us.  Below is a link to the webpage.  It is also on the right side of the blog.

http://click4kids.kintera.org/allisonclairehakerem 

Also, here is a link to the Palliative Care Team at CHOA, if you want more information about them :)  They are amazing people!

http://www.choa.org/Childrens-Hospital-Services/Palliative-Care

The Importance of Palliative Care

When I look back on all of Alli's specialists, starting with the maternal fetal medicine specialist, Dr. Mann, I often wonder why the notion of palliative care wasn't raised sooner.  I know the answer to that question.  Palliative care assumes an adult or child has a terminal illness or disease.  No parent wants to fully consider the possibility of their child's death when they are faced with addressing the medical decisions to "save" their child's life.  However, palliative care is not about death.  It is about life.  The life of your child and the life of your family.

I don't think palliative care is appropriate for every cold, flu, asthma, and ear tube diagnosis, but I do think that we should have talked with palliative care at the time we learned that Alli had complicated heart defects associated with her, at the time potential, down syndrome diagnosis.  We spent 2 years, from the time of my first suspicious ultrasound, trying to find ways to cure Alli so that she could go on to have a 'normal' life.  We pumped her full of toxic medication to control seizures.  We shoved tubes down her throat multiple times to help her breathe.  We subjected her to traumatic surgeries and procedures.  Maybe we still would have done all of those things, but the addition of the palliative care team helped us to stop assuming that we would continue to pursue every possible medical treatment and start considering what was really in the best interest of Alli and her already fragile life.  That should have been our goal from the beginning.    

The palliative care team did not make decisions for us.  What they did do was ensure that Jason and I were having more meaningful conversations about how to move forward with Alli's medical decisions taking her current life in to account.  Doctors and nurses will let you do terrible things to your child in the name of "saving" his or her life.  Medicine has advanced to a point where doctors can take fairly extreme measures to keep a child alive and if you aren't paying attention, or having a broader conversation about the bigger picture of what this means for your child, you can find yourself in a precarious position.

I think the addition of the palliative care team helped to ensure that Jason and I were on the same page about medical decisions.  It took a long time for us to get to that point.  While we were often on the same page about Alli's overall condition, we were not always on the same page about what that meant from a treatment perspective.  Discussions around palliative care helped us to bridge that gap.  It brought Alli's quality of life, both current and potential, to the forefront when we were making decisions.  Their care was as much about Alli as it was our whole family.  Certainly managing her quality of life was the focal point, but I believe the way their process works helps to ensure the quality of life of the family continues during and beyond the child's illness.  Because their team applies a multidisciplinary approach there is a counseling aspect to it that encourages healthy communication between parents, siblings, and the extended family.  I believe in some ways, regardless of whether this is overtly stated in their mission, they help to ensure that the family doesn't die with the child.

The palliative care team helped us to remove the blinders.  They took away the automatic medical decisions and helped us consider the broader context of our decisions.  That is why I believe they are the most important part of a medically fragile child's team of specialists.  Ultimately they want your child to live and they want your family to thrive beyond your child's illness or possible death.  We are so grateful for everything they did for Alli and our family.

One way that we are showing our gratitude to the palliative care team is by setting up a page on the Children's Healthcare of Atlanta website in Alli's memory.  100% of donations made through this page will support the efforts of the palliative care team.  No portion of the donation is allocated to administrative costs, as we have specifically identified the PACT team to be the beneficiary.  The link to the page is:

http://click4kids.kintera.org/allisonclairehakerem 

We have also included the link on the menu bar in the blog.

How Great Thou Art..

Gosh, it just seems like Alli is everywhere.  I feel like I see butterflies and a cardinal almost daily, lately.  It is Spring and rebirth is everywhere, so maybe that is to be expected.  Who knows.  There has been something almost every day.

On Sunday it was the gospel reading from John..."As he passed by he saw a man blind from birth. His disciples asked him, Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "Neither he nor his parents sinned; it is so that the works of God might be made visible through him. We have to do the works of the one who sent me while it is day. Night is coming when no one can work. While I am in the world, I am the light of the world." (John 9:1) You can imagine, having gone through what we have endured with Alli, that at times I was concerned as to whether or not certain circumstances along the way were an atonement for sins previously committed. Sunday's gospel was an answer to a question that had been in my heart for a long time. I think for most it might be hard to say, "oh, ok, I am doing the Lord's work. That makes this terrible thing (whatever the situation might be) ok." It is hard work. But, it is rewarding work. And, it was hard to say, ok, Lord, I will trust that all will be ok and let you use my precious daughter for your work. At times it is still incomprehensible, and still, at other times there is comfort in knowing and believing that there was a much greater purpose to all of this and that Alli's suffering was not in vain.

On Monday Joshua and I went to pick out the flowers for Alli's grave site. Tuesday, he and Samantha went with me to place the flowers after we picked Samantha up from school. The weather was warm and beautiful and we had a short visit. Picture below...

Then, Tuesday night, or early Wednesday morning, I had my second dream about Alli.  It is a little fuzzy, but I know I was angry at whomever woke me up :)  I love getting glimpses of her in my dreams.  It does make me hate waking up, but I am hopeful there will be more.  It is such a treat!

Lately I have been listening to a song from the Wicked soundtrack.  I think it is a song that my mom mentioned to me a long time ago, but for whatever reason, recently the words have really struck me...

The Song is For Good...

I'm limited
Just look at me
I'm limited
And just look at you you can do all I couldn't do

So now it's up to you
For both of us
Now it's up to you

I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you...
Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better?
But because I knew you
I have been changed for good

It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend...
Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I've been changed for the better?
But because I knew you

Because I knew you

I have been changed for good

And just to clear the air
I ask forgiveness
For the things I've done you blame me for

But then, I guess we know
There's blame to share

And none of it seems to matter anymore

Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood

Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a bird in the wood

Who can say if I've been
Changed for the better?
I do believe I have been
Changed for the better

And because I knew you...

Because I knew you...

Because I knew you...
I have been changed for good...

Every time I hear this, I think of Alli.
Yesterday, Josh and I went for a long walk.  I have been trying to get out and walk in our neighborhood a couple of times a week.  Yesterday, we walked over to drop off the dry cleaning and pick up a few groceries.  It was nice to have the time to be able to walk and enjoy the beautiful weather.  As we were walking I had my music playing on shuffle from a playlist I put together.  The playlist is quite random.  It has everything from Robin Thicke (I know - I'm a sucker for sometimes crappy music.), to music from Wicked, the Beatles, and some church music mixed in.  As we were walking back to the house yesterday the last song that played was How Great Thou Art.  I found myself thinking, truly, "what a gift."  For me, it was a sign that the time I spent with Josh enjoying our walk was truly blessed time.

Spring

Today has been an Alli day.  When I came downstairs this morning this was the first thing I noticed…

Likely it is a moth and not a butterfly, but to me it felt like she was peeking in on us.  Then, a little while ago I saw a cardinal outside our window.  Some believe that cardinals are our deceased loved ones paying us a visit.  I have never noticed them outside our home before, but now I notice them from time to time in our backyard, right outside the kitchen window where I sit to have breakfast with Joshua in the morning.  I find my thoughts lingering on her more than usual today.

Occasionally before I write my blog posts I go back to the same time period in the previous year to see what I was writing about at that time.  At this time last year, we were awaiting the arrival of my grandmother to celebrate Easter with us and looking forward to nicer weather.  Ironically, as I was gathering my thoughts to write today, I was thinking about how much I enjoyed the nicer weather yesterday.

Yesterday after school Joshua, Samantha, and I walked to the park near our home.  It was the first time we had walked to the park, as opposed to drive, since we have lived in this house.  Embarrassingly enough, the park is less than a mile from our house.  Anyway, we had a leisurely walk to the park and then enjoyed some time on the swings, playscape, and a small snack.  On the way, Samantha commented about how nice it was to be able to walk to the park together.  I think my heart literally leapt in my chest.  There was no rush to any part of the outing.  It was so nice and relaxed and I felt like I was able to enjoy this time in such a different way than I might have in the past.  I think her comment validates her own sense of relief that our lives have calmed down over the past few months.  I'm happy that she enjoys spending time together.  Below are some pictures…

Last night Jason and I went out to watch the Dayton Flyers basketball game.  We had intentions of staying to watch the Gator game, but it had gotten so late we decided to watch his game from home.  It was nice to be able to spend time together on a whim.  A couple of years ago I had been more actively involved in my alumni association.  It was nice to be able to join them last night to watch the game.  These seemingly simple events garner such strong emotions.  Even as I sat there I could feel the tears coming.  There are very few things in life that I am exuberantly passionate about, but the University of Dayton is one of them.  I could write an entire blog just on my experience there.  I loved it so much.  Anyway, it was wonderful to be able to participate once again.  I hadn't realized how much I missed being there.

We are now a house divided!  Hopefully we'll both still be smiling after Saturday's game!

Tonight I look forward to taking the kids to the fish fry.  It has become a lenten tradition for me and Samantha (and now Josh).  This Lent has been unlike any other.  I have made a real effort this year to focus on unnecessary eating - for many reasons, the least of which is actually my health.  I had and still have a nervous habit of eating.  So, I wanted to try to focus on breaking that habit, which half way through has gone pretty well.  I have stopped eating after dinner, cut back on wine during the week, fast one day each week, and have started to decrease my portion size and stick to only one plate of food.  It is mentally exhausting (unfortunately) trying to break the cycle of nervous eating, but I have made drastic improvement.  It hasn't been a hard and fast (no pun intended) giving up of one thing.  It has been an effort to change my thinking where food is concerned to try to make it more simple and functional.  I have also been following the daily reflections sent out by Fr. Robert Barron.  Many of them have been right on point for me and have been a great source of reflection over the past few weeks.  If you happen to be looking for a jump start during Lent, I highly recommend them.  They are short, sweet, and to the point.  

http://www.wordonfire.org/WoF-Blog/WoF-Blog/February-2014/Free-Daily-Lent-Reflections-from-Fr-Robert-Barron.aspx