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

Vacation

We took our first family vacation last week.  We left on March 8, Josh's birthday, and made a quick stop in Orlando.  My parents saved passes they received from Disney when we were kids and we used them to give Samantha a trip to the Magic Kingdom, on our way to Miami.  She loves the traditional Disney characters and we knew that was a phase that would not last long.  She has begged to go to "The Clubhouse" for months.  Given all that she endured over the past year we felt that we wanted to be able to take her to meet her Clubhouse "friends" in person.  Below are some photos of her first meetings…

We started the day with a character breakfast at the Contemporary Resort.  She was a little apprehensive at first.  But, Jason gave her some confidence, and when Minnie finally came over she was ready to give her a big hug!

We spent most of our time at the Magic Kingdom in Fantasyland.  Unbeknownst to me, Toon Town no longer exists.  I was slightly disappointed.  But, Samantha had a great time.  I was impressed with her somewhat fearless attitude regarding the rides.  She rode her first roller coaster, The Barnstormer, with Jason, me, and Grandpa Jay.  We took a spin on the teacups.  She rode on Dumbo and the carousel.  And, of course, we made a stop through It's a Small World.  What trip to Disney is complete without that?  Her one disappointment was not being able to meet Daisy Duck.  Luckily, before we left, I happened to notice an exhibit with Daisy and Minnie, and Samantha officially accomplished everything.  When you ask her, she will tell you her favorite part of the day was meeting Daisy and Minnie.

The next day we left Orlando for Miami.  We got everything settled in at Jason's parents and had a relaxing evening.  The next day, Samantha enjoyed an afternoon date with Linda and Jay, while Jason and I took Joshua up to meet Fr. Flanagan (the priest who married us) at Sawgrass Mills.  It was wonderful to see him.  We enjoyed having lunch and walking through the outlets.  In addition to our wedding, Fr. Flanagan baptized Samantha and also performed the first half of Alli's baptism.  So, it was a nice opportunity to connect with him about what had transpired since we last saw him and have him meet Joshua.

On Wednesday, Jason, Linda, and I took Samantha and Joshua to the zoo.  I think the highlights for Samantha were the camel ride and the sprinkler park…oh yes, and the ice cream ;) .  See photos below...

On Thursday we visited Linda at her school and met some of her teachers.  Samantha played on the playground with some children in the pre-K class.  Funny story about this visit.  For some reason every time we introduced Samantha to someone at Linda's school she would say hello and then curtsy in front of them.  It was hilarious!  After our visit at school we spent the afternoon at the Seaquarium with Grandpa Jay and saw the Dolphin shows.  That night we had a mini birthday party for Joshua with a couple of Linda's friends and then started the process of getting packed up to come home.

We left Miami on Friday and returned home late that evening.  It was a long drive, but we were happy to be back in our beds and thankful to have some time to get the kids back in to their routine before the school and work week started on Monday.

There were a few firsts for Joshua while we were gone.  He started pulling to stand.  He enjoyed his first bites of steak and ribs.  His second tooth is coming in.  He is getting so big!

Overall, it was a wonderful trip!  I'm so thankful we were able to take the time to get away and look forward to many future family vacations.

Happy Birthday, Joshua!

The long awaited happy birthday post…

We were traveling on Joshua's first birthday this year, therefore we had our official first birthday party celebration on March 1st.  My mom was in town for the week to help us celebrate.  She has been a part of each child's first birthday celebration.  Samantha and Alli both had parties in Detroit to celebrate their first birthday.  Since we are planning a trip to Detroit this summer, we were not able to make the trip this year to celebrate Josh's.

The party theme was Dr. Seuss.  Lucky for me Dr. Seuss day was March 2, therefore there was Dr. Seuss themed stuff everywhere!  I had hoped to make the big birthday cake, but this is what happened on my first attempt…caketastrophe!

Below is the result of my third attempt, which I was able to fashion in to a smash cake.

This is what we served everyone else for dessert.  FYI - Whole Foods makes fantastic desserts if you ever find yourself in a caketastrophe!

The decorations…

The birthday boy…(many thanks to my friend, Gabriela, for taking the photos below)

Suffice it to say, he had a wonderful birthday celebration, surrounded by many of our close friends, and of course, nanny.  I prepared the slideshow below with pictures of his first year.  It was a bittersweet project for me, as I reviewed the many bittersweet moments over the past year.  So many wonderful memories of him, mixed in with so many sad memories of Alli.

On Joshua's actual birthday we drove from Atlanta to Orlando for our first family mini Disney vacation.    More on the mini vacation in my next post.

So many thoughts on my little man's first year.  He came in to our lives at a time of great turmoil and he rolled with the punches from day one.  He has been at my side, pretty constantly, this first year.  He has brought us great joy amidst great suffering and sadness.  He is quite the charmer with a constant smile and his bright blue eyes.  He has been the perfect addition to our family and I look forward to what the future holds for him!

Four Months

Today marks 4 months since Alli passed away.  It dawned on me as I was driving Snickers to the vet this morning.  As I was driving the exact same route that we drove for months on end, the tears came out of nowhere.  The vet is about 1.5 miles from Egleston.  Not all days are like today.  There are plenty of good days and things to look forward to (like our upcoming vacation!).  Today just happened to be a little more challenging.

Now that Alli's permanent headstone is in place, I have been putting together bouquets each month to keep in the vase.  Below is the bouquet I made for February and the bouquet for March.  I made a quick visit this afternoon to place her March bouquet.  I enjoy putting the flowers together.  It makes me feel like I am still doing something for her, even though she isn't here and it gives me an excuse to visit the cemetery at least once a month.

I attended my second session at the grief support group.  They only meet once a month.  It felt like an eternity between meetings.  Though everyone's child's story is different, there are common threads in how the passing away of that child impacts the parents.  It is nice to be among other people who understand how I feel.  It seems like everyone has a 'thing.'  Something that sets them off, either makes them sad or angry, regarding the death of their child.  For me it is people's reference to Joshua as the 'second child.'  It usually comes up in the context of parenting discussions about his sleep, or feeding, or behavior, or who knows what, but inevitably, especially recently, people will say, "well…with the second child…"  It is like nails on a chalkboard for me.  I know people mean well.  It doesn't make me think differently about the person.  It just makes me sad.  It makes me feel like people have already started to forget about Alli.  Joshua isn't my second child.  Even though he will grow up from this point on like the second child, he is the third.

Speaking of Joshua - he is going to be 1on Saturday!  Unbelievable!  He will have his own 1st birthday post.  I don't want to taint it with sadness about Alli :)  Below is a picture of one of his early birthday gifts…  He loves it…well, more than his other early birthday gift…his second lower tooth.

Samantha is doing great.  The time together has been great for both of us.  She recently started attending school for the full day.  She is an "afternooner."  Tomorrow I am invited, with the other mothers in the class, to Mother's Tea.  It is an opportunity for the children to practice grace and courtesy.  I am looking forward to it!  Also, since my last post, she decided she wanted short hair.  Below is a pic with her new 'do.  She loves it!

Ok, I will update soon for Josh's 1st birthday.

Let it Snow!

Today was a special day in the Hakerem house.  Samantha's first official snow day!  For my northern family and friends, I realize this is no big deal.  However, in the south, the snow days are few and far between.  I would say that Samantha enjoyed every minute of it.  She built snowmen, made snow angels, and went sledding on a cookie sheet in our driveway.

She and Joshua also enjoyed watching Toy Story for the first time.  I found them like this when I came in to the living room…

For the record…the day before the great 'snopocalypse' looked like this…

Both Samantha and Joshua are doing well.  Samantha will start attending school for the full day next week.  Her day will start at 8:15 and end at 2:45.  I am excited for her and the work she will do with Ms. Cara.  I am sad that she won't be home with me in the afternoons.  In my head is the idyllic version of what happens here in the afternoons - pleasant lunch together, fun activities, lots of quality mommy and Samantha time.  What actually happens looks nothing like that most days.  So, I will waive the white flag and acknowledge that she is probably better off at school.

Joshua is starting to sign for more and is pulling to stand.  His favorite support is the opened door of the dishwasher, but he also enjoys his mini kitchen and play table.  He is speedy gonzalez around the house.  He adores his sister and I often find them trying to make each other laugh, especially at the dinner table.

We received the call shortly after New Year that Alli's headstone had been placed.  It was a generous gift from our grandmothers.  We are pleased with how it looks.  I made my first bouquet for the vase yesterday.  We will probably go this weekend to place it.

I had my first dream about Alli a couple of days ago.  It was in the morning right before I woke up.  I don't remember most of it, but I know I saw her.  She was sitting on the grass at her cemetery plot.  Sun was shining.  She looked great.  I attended a grief support group last Wednesday.  They meet the fourth Wednesday of the month.  I mostly listened.  The majority of the people in the group lost adult children.  I was the only one who had lost a young child.  Everyone was very supportive.  They say you should go 3 times before deciding whether or not the group is a good fit, so I will go a couple more times and see what happens.

New Year, New Beginnings?

Yesterday marked 2 months since Alli passed away.  In some ways it is just unbelievable to me that we had this little girl and all of these challenges and within the blink of an eye one day that little girl and all of the challenges she faced were gone.  I struggle with her legacy and my memories of her life, especially the last 11 months of it.  For a while I was almost angered by any suggestion to hold on to my good memories of Alli.  What good memories?  I spent the last 2 years of her life diagnosing various forms of seizures, keeping track of countless medications, refilling feeding bags, sleeping on hospital couches, making friends with doctors, nurses, and therapists, what seemed like a never ending cycle of hoping things would get better…and they just never did.

I am so grateful for our trip to Raleigh this past weekend.  It was a well intentioned opportunity to visit with Jason's brother and his family.  I looked forward to making the trip and spending time with them.  I knew Samantha would enjoy the time and attention from her cousins.  There was no reason not to go. I wasn't prepared for the flood of memories that would come upon our arrival.  Raleigh was the last place we took Alli before she got sick last winter.  We spent Thanksgiving with Jenn, Michael, the boys, and Jenn's parents.  It was a great trip.  I remember talking with them about taking Alli to Memphis and the great promise that would come from working with Dr. Wheless.  Alli was making strides developmentally.  There was so much hope for what her future held.  She stayed in the guest room with Jason and me.  She was tucked in a pack and play and we had her oxygen concentrator and feeding pump in there with us.  When I looked at the room this time it was hard to believe everything fit.  And so I found myself sad, but grateful, for this was a happy memory we shared with Alli.  I'm also grateful for the pictures we took while we were there.  When I look at the family photo from that visit, it is a reminder of that happy memory.  I know there will be others.

It is difficult to realize how mentally preoccupied I was.  I thought I had everything together, was relaxed, and all was well.  Now, as the dust settles, I realize how on edge and distracted I really was.  The time we spent relaxing at night was peppered with trips up and down to give medications, refill feedings, silence the oxygen monitor.  The same with my time with Samantha.  We could sit and read a book or play, but only until it was time to give another medicine, etc.  There is a small sense of relief in being able to relax at the end of the day and to have some uninterrupted time with Samantha, Josh, and Jason.

There is also relief in rediscovering joy and laughter.  Seems odd, right?  This past Christmas there was great joy in being with my siblings and niece.  Unencumbered.  My brother and sister are ridiculous.  Anyone who has ever met them knows that.  It was great to laugh with them (and at them).  It had been a long time since I felt like I could truly appreciate the lighter side of things.  I would shrug off phone calls with "funny stories."  It was hard to find the humor in things while we had so much going on with Alli.  I would go places and participate in events, but my mind and heart was always elsewhere.  I feel like I am more "in the moment" now and able to appreciate the people around me and the things going on in their lives.

Ok, I hope you all are doing well.  I have made some New Year's resolutions.  I already need a 'do over' on some of them…yikes!  It is only the 8th!  Happy new year!