What do you say?

What do you say to someone whose heart has been ripped out?  When your own heart is breaking right along with them. "I'm sorry," seems so inadequate.  "I know how you feel" is just untrue.  "He's in a better place" may be true, but you know what?  Here wasn't so bad.  And he was loved, cherished and an integral part of their life.  "He's all better now" is also true, but they can't see him anymore.  He has left his earthly shell behind and moved on the the next world.  But they're left behind.  In a book I once read, Death referred to those who still lived as "the leftovers."  We get left behind while they move on to other things.

A beautiful, bright smile was stilled two days ago and I still can't figure out how to wrap my mind around it.  Little Caleb Adamyk, Mighty Mouse, has fought a good fight, has finished his course, and has kept the faith, but the rest of us still have to go on.  So what do you say to his mom, his dad, his older brother?  Words just can't convey meaning well enough.  Jeannette has been there in every way possible since we "met" over a year ago on facebook.  She's been there with funny things, good medical advice, and wonderful phone calls.  This is a woman whose faith in our Savior is immense, but right now, so is her grief.

Jeannette will have a lot more time now.  Way too much.  Our kids do take up an enormous amount of time and energy, but so what?  While sometimes (often) exhausting, what a blessing to be able to care for and love someone who gives back so much love unconditionally.  I LOVE Caleb's smile.  You can see the joy in his eyes, his love of life.  I ache as I think of how empty the hours will be now.

I don't want to be silent, because she needs to know I care.  But the words all sound so pithy to me.  So I cry, and as I do, I pray.  I pray that God will wrap his arms around her and her family like a blanket.  That He will grant them peace and comfort.  That somehow, my love will be conveyed to her.  And she will find the strength to keep breathing.

Alleluia, Alleluia!

What a wonderful day and wonderful week!  Aaron is doing so well.  He's enjoyed a lot of floor time lately, and that makes it so much easier to get in close and play.  The other night, Michael came in and wanted to take care of him.  They both ended up falling asleep on the floor.  Mini-slumber party anyone?

A couple days ago, Grampa Brown was playing with him on the floor.  Grampa would get Aaron's attention, and then tap his own hand against his own leg.  Aaron would watch and then copy!  This is huge!  To have conscious copying of gross motor skills is a big step.  We've thought on several occasions that he might be copying facial features, and even sometimes head shaking, but we've never been sure.  This was so fun to watch.

Mary moved out this week.  We all really miss her.  I tried to get some pictures of she and Aaron before she left, but he'd stayed up too late partying the night before -- 4 a.m.!  So waking up was just not on his agenda.  Mary has been so wonderful to play with and help with Aaron.  He can't really express it, but I know he misses her, too.

Then there was today.  It was a fantastic day.  Today was Stake Conference.  For those who are not Mormon, every six months we have a larger gathering of about 6-8 local units.  The local units are called wards and the larger group is a stake.  We receive counsel from our leaders, and sometimes, we have special visitors from the general authorities over the church.  Every once in a while, one of the apostles will visit.  Our church is led by a prophet and twelve apostles, just like the ancient church when Christ was here.  Today, Elder Richard G. Scott, one of the twelve apostles came.  It was so wonderful to hear him speak and feel his love.  Afterwards, he came over to where the family had been sitting and greeted Aaron and the other boys.  (Deborah had gone with a friend to a farewell, and Mary had to leave as soon as the meeting was over, so they didn't get to meet him.)  I am so grateful he took the time to come see Aaron.



In addition to this wonderful experience, I was privileged to sing in the choir.  I love singing and have really missed it over the last two years.  Because we didn't decide that we could make it work before last week, I only had one week of practice and today's warm-up.  I enjoyed the music, but didn't have time to really get comfortable with it.  So much of it was feeling forced.  But then, on the last chorus of the closing song, it all changed.  The hymn was "On This Day of Joy and Gladness."  As we sang,

Alleluia, Alleluia,

Bright and clear our voices ring,

Singing songs of exultation

To our Maker, Lord, and King!

I could feel it, really feel it!  Alleluia means Praise ye the Lord and I did.  I did with my whole heart and soul.  It was the most marvelous feeling to be part of a chorus singing those praises to God.  

I am so blessed, so very blessed.  Alleluia, indeed.

First Day of School (for most!)

Okay, so it's the first day of school for just over half my kids.  How weird is that?  Deborah is looking for a job, Mary moves out tomorrow, Michael's kindergarten doesn't start until next week, and I get to keep Aaron at home with me. So only five out of the nine actually started school today.



Anyway, it's still that First Day of School!  And we're off to a roaring start.  Another blessing of studying scriptures first thing in the morning, one that I haven't heard mentioned by the prophets, is that when the alarm clock doesn't go off right, or when you turn it off and go back to sleep (Mom!), there's still plenty of others to wake you.  And then we're still, basically, on time.  Yeah, only four of the ten of us managed to get up on our own.  I think we need to work on that.


Again yesterday, I realized how different our "normal" has become.  We were at "Back-to-School" night and I was talking with the boys' teachers.  My concern, especially with the younger ones,
was that if they came to school talking about Aaron, that the teachers not think they were telling "stories."  If (NOT going to happen this year) they came and said a helicopter came to our house, it was probably the truth.  If they talked about Aaron having two bellybuttons, that was how we explained the g-tube to them.  The teachers were great about that, but were so very concerned about how difficult this was for all of us.  I tried to explain that the boys really do just roll with it.  We were admitted so many times last year that it was no longer unexpected.  Their biggest worry, even when it had been bad, was how long before Mom's back, and can we play in the playroom when we go up to visit. 

Last year I really had to fight to put a family password on my kids' check-out accounts.  We have it just in case Aaron takes a bad turn really fast.  Then I don't have to try to remember who has permission to check the kids out.  I can give anyone the family password and they can get them and bring them to the hospital.  This year, all the attendence people remembered me and were just fine with it. 

I think the only base left to cover is the mass e-mail.  I still need to let my older kids' teachers know about Aaron.  Because even though the younger kids roll with just about everything, the older ones still stress a bit more.  The youngers have almost come to expect us to be gone frequently.  The olders know that the ambulance only comes when it's life-threatening.  So even though they also are familiar with it, if Aaron is not doing as well, they worry more.  Because the middle school and high school teachers are so used to hearing all sorts of excuses, I feel like I owe it to them and to my kids to give them a heads-up that they are also not telling "stories." 

Our school district here only makes me fill out one emergency form per school instead of one per child like San Diego did.  I also no longer fill out any disclosure documents.  I figure by the time my kids are getting those, they know my name, address, telephone number and e-mail.  I make them fill out their paperwork and then I'll sign it.  But with all this other stuff, I still think I have more homework than they do that first week of school.  Wish me luck in getting this e-mail composed...

Good Times and Hard Times

Please bear with me as I'm not sure where this one is going.  Aaron is doing really, really well.  In fact, so well, that sometimes he gets a little silly.  We went in a week ago to have his casts removed and look at his feet.  Initially, at least, it looks like his feet may be changing.  So we also put new casts on.  Next Monday when we go back, he'll also have x-rays done to see if the bones have shifted at all.  If they have then we'll continue casting.  If not, well, that experiment will be done, and at least we'll have his feet back for sensors.

'Cause this little monkey, he's been having lots of fun with his oxygen sensor.  Me, not so much.  Because we don't have access to feet, we have to put it on his hand.  Use your imagination and you can probably figure out how that's working.  He wiggles and waves his hands a lot.  He likes to pull it off completely.  And, perhaps his favorite, he likes to chew on it.  The sensor works fine when he chews on it.  At least it's holding still and attached, but when it gets wet, it's all over.  No pick-up at all.  So this past week there have been alarms galore going off.  I finally asked Deborah to sit in there with him, because most of the time, they are false alarms, but you can't tell if your in another room.

This week Michael and Andrew chose dinosaur stickers for Aaron's casts.  Daddy also painted messages like "I love Aaron" and "Wonderful little friend" on them.  We even put a turtle on for one of his doctors.  She's really partial to turtles.  Aaron wasn't so sure about taking those casts off.  His eyes were big and scared with the noise and vibrations from the saw.  I just kept talking and smiling at him, and it was almost like, "I'm really, really not sure about this, but you look like things are okay, so I'll hang in there for now.  But you better be sure about this, Mom!"  On his toes are stickers that say "Lengthen Your Stride."  Inspiration more for me than I think for him.  His stride is already pretty impressive.

So really, Aaron has been having a very good time.  As my doctor said last week, "This is obviously NOT failure to thrive."  But several of his little friends, and their families, are really struggling.  Sometimes I have a hard time with the juxtaposition of a seemingly healthy, happy baby, and the knowledge that it can change in an instant.  This past week, one of Aaron's little T18 friends, Peter, grew his angel wings.  Peter's mom founded Prenatal Partners for Life after Peter was born.  She sent Aaron a lamb with "Child of God" printed on it.  This lamb has been to almost every one of Aaron's hospital admits.  It is in his bed here at home.  He loves to grab at it.  Mary has been so helpful to so many of us as we've traveled this road.  

Peter

Another special baby, Caleb, is 29 months.  Caleb's mom, Jeannette, has been right there with me since Aaron's birth.  She has been wonderful to provide advice and a listening ear.  She is a woman with a profound faith in our Savior.  Last Thursday, Caleb went in for an adnoidectomy because his were so large they were making it hard to breathe.  After surgery, he had a heart attack.  Today, he had another.  My heart aches for them.  Please, if you will take a minute, please pray for these families.  They need the strength and peace that comes from prayers offered.  They need it now, and will for quite some time in the future.  I long to uphold them as they have held me.  I wish I was close enough to put my arms around them. 

Caleb 

So as I count my blessings, and I have so many of them, I also plead for understanding from my Father.  Because, most of the time, I don't understand, or maybe I don't want to have to understand.  We love our little ones so much.  It hurts so bad to watch them suffer, but even more to lose them.  If not for the knowledge that this life is a school and not the end of everything, I think I would truly lose my mind.  It is only with my faith in my Savior and my Heavenly Father that I can find the strength to not only go forward, but enjoy the journey.  I am so glad he has entrusted us with one of his special angels.  I once read (and haven't been able to find the source again!) about a family similarly blessed.  A neighbor remarked to the father that "We have heard of the ministering of angels.  It would be interesting to know why your family has been chosen to minister to one of them."  These babies truly are special angels and, as hard as it is to watch them suffer, those who are allowed to love and care for them are among the most blessed I know.

Aaron's Hill

Aaron's Hill

I recently started running, or at least something like running.  See, all my life I was blessed with skinny genes.  When I carried my older kids, I was all baby and almost nothing else.  Now, I'm no baby and a lot of something else.  Anyway, after Aaron's first birthday, I actually started looking towards the future.  It's like I finally gave myself permission to look past the next week or two.  And I realized this could get interesting.

See, Aaron, in his stroller, and with all his equipment weighs somewhere between 125 and 130 pounds.  I know he's only about 15 of that, but he is getting bigger.  Then there's me, on the "other side" of 40 where I'm told I lose muscle mass.  So I decided that something had to change.

I found a program called "Couch Potato to 5K."  I looked at the first week and thought, actually this is really easy.  I bet I could just skip it.  But, since I'm trying to be a good girl, I thought I'd at least do the first run before I decided to skip to week two.  Weeeeell, um, yeah.  This couch potato has not only spouted roots, she's put them down deep.  There will be no skipping of steps on this one.  In fact, sometimes I hang onto a week for a few more runs before moving on.

Which brings me to this post.  Aaron is my inspiration for running.  Whenever I think I can't make it one more step, I think of him.  He's running a much harder race than I ever will and he doesn't get to stop after 20 or 30 minutes.  And he doesn't complain, ever.  He just keeps on keeping on, smiling almost all the time.  He's my hero.

On the way back, there's a pretty steep hill.  In my training plan, I now run up the hill.  It's not much of a run, but I keep doing it.  And as I do, I think of Aaron.  I've dubbed it Aaron's hill.  It's a narrow path through the trees, but at the top you can see the sky.  Depending on what time I go, it's been either baby blue, or like this morning, rosy pink.  It's darker down at the bottom, in the shade, but I can see the bright goal ahead of me.  And as I climb, I remember Aaron and all the others who inspire me.  They don't give up and neither will I.

Today there were several children weighing on my mind.  As I ran, their names went through my mind over and over:  Aaron, Caleb, Peter, Emily, Brigid, Lane.  Aaron, Caleb, Peter, Emily, Brigid, Lane.  Somehow, it wasn't as hard as I thought it would be.  It was a better run than I've had in a long time.  Still hard?  Oh yeah.  But compared to what these kids are doing, not so much at all.  'Cause, I can do hard things.

Aaron's Middle Name

Aaron's middle name comes from my grandfather, my Papa.  He passed away just after we were married.  I still remember coming home to our little apartment after dropping someone off at the airport and seeing the light blinking on our answering machine.  I knew immediately that Papa was gone. 

On Wednesday, his sweetheart, my Nana, joined him.  She has been battling cancer for so long and is now at rest.  I remember her making grilled cheese sandwiches for us in Texas as we'd sit on the patio, taking a break from swimming in their pool.  I remember her love of reading.  She was always reading.  I remember, I must have only been two or three, one time she and Papa came to visit.  They were in an RV (at least that's the way I remember it.)  I remember Maurie and I running across a HUGE field to hug them.  We were so excited to see them.

I remember living in their home in Pennsylvania and picking wild blackberries when Mom was pregnant with Michelle and Dad was TDY.  I remember her Madam Alexander dolls, especially her "Little Women" dolls.  I was facinated by Meg, Jo, Beth, Amy and Marmee.  I loved just looking at them.  Mostly, I remember her love.   I remember the love she and Papa shared.  Every evening, they would have a glass of wine before dinner and toast each other with, "I love you."  And NOBODY ever said ANYTHING that might possibly be derrogatory of her in front of Papa.  You just did not say anything that wasn't nice about anything about his wife, not her cooking, not anything. 

They were strong people, raised in a different era.  They waited 7 days after they met to get married, because they were waiting for Papa's birthday.  And then she sent him off to war.  This was the second time she sent her husband to war.  I can't imagine the fortitude that took.  Papa was a career military officer.  He retired as a Colonel in the United States Air Force and she followed him and made a home for their family all over the US and overseas as well. 

She told me that when they got married, they decided they'd never go to sleep mad at each other.  I remember her telling me (and this was after Papa passed on) that they never did.  But there were a lot of nights they both sat up awake all night too angry to make up and go to sleep!

Nana was a very strong woman.  I admire her so much.  Her life wasn't easy, but I never realized it as a child.  She married young and sent her first husband off to war.  While he was gone, she gave birth to a baby boy, too early to survive.  The nuns wanted to take him and leave him in another room to die.  She refused.  She held her little baby while he lived and while he died.  And then she sat up all night holding that little body, not sleeping, until her mother could get to the hospital and take him.  She refused to give him up to nurses that did not value his life.  How very much I have learned from her.  She of all people in my family understood the pain and fear I have gone through these last two and a half years.

She became pregnant again, this time with twins.  Some time after that, her husband was declared MIA in the Pacific Theater.  She gave birth just a few weeks later, and then shortly thereafter, was informed that he had been killed.  After she and Papa married, they raised those twins, my mother, and her brother.  They raised them to love country and family.  They raised them to be strong and supportive.  I think the fact that she was able to stay in her home, being cared for by them until the end, shows just how strong those bonds are.  They are a family in every sense of the word. 

I hope I can raise my children as well as they have.  Nana never got to meet Aaron.  By the time he was born, she was too ill to travel, and he couldn't make the trip to Florida.  But Aaron bears Papa's middle name, Noland.  We hoped that in giving him his name, he would demonstrate the same strength as Papa.  And, I believe, Papa takes a special interest in him from the other side.  I couldn't think of a better guardian angel to stand by my baby than my Papa.  I miss you, Nana and Papa.  Enjoy heaven. 

14 Months, 486 Days!

Aaron has had a good week.  Today marks his 14 month birthday, that's 486 more days than we were told we would get.  Our little miracle lives on.  This week he was actually trying to roll over.  He just kept getting stuck on his shoulder.  He still can't quite pull his head up enough to get over that shoulder.  The casts help him because they help anchor his legs in the right position so he can keep working on those upper trunk muscles.

Because he's trying to roll over and move more, he's starting to have a physical therapist as well.  So now, he has physical therapy twice a month, occupational therapy twice a month, and hearing therapy once or twice a month.  The best part is, they all come to our house!  Yea for not having to haul him out of the house that much more!

He also got his cool, new sunglasses this week.  We tried them out for the first time at the pool (you can see it reflected in the glasses above).  Amazing success!  Usually, when we go out mid-day, it's really hard on him.  He coughs and sneezes and desats and is generally miserable.  This time, he looked around and went to sleep.  No increased oxygen, no suctioning, no venting.  Much happier boy.  And looking so cool!

Grandpa came to visit for a few days this week and brought an amazing present from China.  The artist captured Aaron's smile and spirit perfectly. 

Yesterday on our way home, Aaron & I stopped to see my perinatologist.  Dr. F has been so amazing.  She gave us the gift of being in the driver's seat with Aaron's pregnancy.  She used her expertise to help and advise us, but left any decision that she could up to us.  More and more I'm discovering what a rare gift that is. 

Here, Aaron is playing with his pinwheel.  He has so much fun grasping it and waving it back and forth.  Mary got lots of smiles for helping him do this.

And then, yesterday, we went to get hearing aids.  Normal hearing registeres at 25 or lower.  Profound hearing loss is 90 or higher.  Aaron's registers between 70 and 90.  His audiologist wants to be gentle with him, and we really can't know how much he truely hears, so they are set at 50.  We tried really hard to get him to react at the hospital to see if he was hearing or not, but he was just too tired.  It was like, leave me alone already.  It's naptime. 

So then, when we got home, I put them in and turned them on after his music was already going.  It was amazing to watch as they registered the sound.  His eyes got so big as he heard the music!   Although he's always been responsive, he has been much more so since yesterday afternoon, .

Alpine Days Parade 2011

Today we went to the Alpine Days Parade.  It was much smaller than previous years, but Aaron was still there!  And unlike the parade, he's much bigger!!

Alpine Days Parade 2010

We found some friends of ours to sit with.  Here's Michael, Joseph, Andrew, and a special fan, Tonya with Aaron while we're waiting for the parade to begin.  Tonight the plan is to take him to the fireworks, his first.  What a way to celebrate 14 months.  A parade and fireworks, and I'm hoping he thinks they're all for him.