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.

Answered Prayer

Today I had a very interesting experience.  It was Fast and Testimony meeting.  For those not familiar with this practice, in the LDS church, on the first Sunday of each month, it is customary to go without two meals, or fast.  The money that would have been spent on the food is then donated to help the less fortunate.  This is coupled with Testimony meeting.  In it, members who feel so moved, bear testimony of the gospel and the love of Jesus Christ.  This is often accompanied by personal examples or stories.

Shortly after the testimony portion began, I was holding Aaron and looking at him.  I began to wonder if he was still touching and helping others now that he is doing so well and, at least now, is so stable.  I mean, he really is very healthy and happy.  I began to pray that if so, someone would maybe mention him.  Then, almost immediately, I felt a little foolish.  I shouldn't need a sign from heaven to validate my feelings.  I know he's still helping me improve.  That should be enough.

Later, just before all the meetings were over, I was watching a couple other babies who have been born since he was and realized something.  EVERYONE at church knows Aaron.  Everyone, including the men, greet and address him by name.  I know I don't know all the small childrens' names, and I suspect that among the men there is even fewer who know them.  But they all know and take interest in Aaron.  I thought my prayer had been answered, and, in a way, it was.

But the most interesting part came as I was putting Aaron in the car, always a lengthy process.  A neighbor came up and asked how he was doing and mentioned how much he blessed her life.  She then went on to say that she had almost said something about that as she bore her testimony, but there was just too much to say and she didn't want to take too much time.  What a blessing it was for her to take those minutes and share that with me.  I am so grateful she did.  It may have been a silly prayer, but my Heavenly Father knew it was important to me.  I am so grateful He inspired her to say just what I needed to hear, and grateful she listened to that prompting.  I've been smiling about it all day.

Be thou ^ahumble; and the Lord thy God shall ^blead thee by the hand, and give thee answer to thy prayers. 

Doctrine & Covenants 112:10

Cardiology plus a New Cousin!

When we were in for Aaron's last  surgery, we heard a new sound in his heart.  I had heard it earlier in the week, but I really don't listen to his heart that often, so I wasn't sure how long it really had been there.  (It's hard to hear his heart over his lungs and the ventilator.  I really have to just focus on it to hear it.)  He also has a murmur, because of his VSD, that I've never been able to pick out.  But after surgery, the attending on the floor also heard it. 

Turns out it's something called a "split S1"  The S1 is the "lub" in the "lub-dub" you hear when you listen to a heart.  On Aaron, you could hear the first sound clearly, but immediately after, and before the second sound (S2), there was almost a faint echo.  It appears that this is no big deal for our hero, but it did earn him a quicker follow-up with his cardiologist, Dr. Menon.  The plan had been to return in December, but with this new development, we were asked to see him this last week.

In the above picture, he's having an echo.  It uses the same technique and everything as a prenatal ultrasound, but focusses entirely on the heart/lungs.  He wasn't real thrilled with holding still and really wanted to help the tech with her wand.  His results were very good.  The right side of his heart continues to be less thick (unthick?) and his pressures continue to decrease.  The thickening was the result of his bout with heart failure a year ago, so the decrease in thickness is a very, very good sign.  He also still has his PDA. 

The ductus arteriosus is open, or patent, in an unborn child.  It allows the baby's blood to bypass the lungs, since it doesn't need to pick up oxygen there before it's born.  After the baby is born, it closes so the blood is all routed through the lungs.  Some children, usually preemies or other compromised infants, don't close on their own.  Sometimes it has looked like Aaron's was closed, but when he's upset, or very active, during an echo, we can tell for certain.  And yep, his is still open.  It's very tiny, and unless he was having something else done, we wouldn't close it.  But if we do end up closing his VSD in the future, we'll have that closed as well.  But that's all a long time away. 

In his second picture, he's having an EKG done.  Yep, that's 13 electrodes on that little body.  Somehow, it doesn't seem like as many as last December, but his body is a lot bigger now, too.  That also came out with very good results.  So it looks like the split S1 is just Aaron being Aaron and keeping us on our toes.

Speaking of tiny bodies, after our cardio appointment, Aaron and I stopped by my sister's home and got to meet my newest nephew.  Little Jacob seems so little!  I think he's got about 3 pounds on where Aaron was when he came home, but that's really hard to imagine.  I couldn't believe how small he was, but he's SO CUTE!  Our family's been blessed with three new little spirits in the past month:  William's brother's wife had a little boy in mid-July, then my sister, Liz, had her son towards the end, and Mara's Jacob was the last one. 

Aaron was pretty interested in little Jacob, but when he started to cry, Aaron looked really confused.  What was that he was doing?  It's not a sound he remembers hearing.  Poor kid was just not into the picture taking thing.

There's a new group on facebook these days called LDS Disabilities.  I really find I like it a lot.  One (or several?) of the moms are also part of a group called M.O.S.S., or Moms of Special Spirits.  There's a get together next weekend, and I'm really excited to try to go.  It's kind of like when I went to school back east, and then came out to BYU.  I had (and have!) some great friends from NJ.  We had a lot of fun together hanging out, talking, working and so on.  But when I came to BYU, where so very many share the same beliefs that I do, it was really like putting a fish into water.  I didn't even realize what I had been missing.  It was just so easy to not have to explain myself.

My facebook account is like that, too.  I wouldn't trade, for the world, the friendships that I have made with other moms on this journey.  They have saved my sanity, and probably Aaron's life, with their insights and humor.  And they are WONDERFUL advocates for our children.  They have a let's-get-to-work mentality and see what we can do to improve not only our own child's life, but others as well.  As parents of medically fragile children (which is different from special needs in a crucial way), we understand all too well the precariousness of this life.  We know that so many will grow their angel wings too soon for us.  But that doesn't mean that we just give up and sit in a corner and weep.  Yes, we weep, yell, scream, cry, but we also go on trying to help others.  One of the best, most wonderful women I know advocates in large part because her baby, Annie, wasn't given a chance.  She died at 80 days under very suspicious circumstances.  But she has been right there with me, every step of the way, helping and checking in.

That said, I really have enjoyed connecting with other moms who get the alphabet soup we use as Mormons.  They understand the sacredness of sacrament meeting even when, or especially when it's juxtaposed with all the challenges of special needs.  And I can't wait to meet in person some of these other moms.  Last week when I got to meet Jennifer, Elanor's mom, it was such a pick-me-up.  I had been sliding down emotionally for a little while, and was not a happy camper.  Meeting her was such a great experience.  There's something about seeing someone face-to-face that is so theraputic.  So, yeah, I'm really looking forward to next weekend and hoping I can make the get together. 

Casts and The End of the Pity Party

Okay, the pity party is over.  I wrote a big, long, whiny post yesterday, but then decided not to post it.  Yeah, it was really whiny.  Amazing what a back rub, a book read just because, an old friend stopping by, and meeting with a new friend can do for the blues.  See, I really try to stay positive, and most of the time, it works.  But sometimes, it is just hard, really hard.  But that's okay, 'cause I can do hard things.

Most kids Aaron's age are starting to walk and talk.  They may stagger, but that's why we call them toddlers.  And most of the time, I love to watch them and interact with them.  But sometimes, it grabs me that my baby won't do that, at least not in this life.  And frankly, lugging his equipment around all the time, well, it takes TIME.  Like today, I timed putting him in the car at the hospital.  13 minutes!  And that's from when I unlocked the car until I went around to get in the driver's seat.  Anyone who knows me, knows that it's a struggle to be slow.  I don't like slow.  So yesterday, well, it was tough.  And I had a pity party.  Reasonable?  Probably not.  Did it anyway?  Yep.

Today, however, was a new day.  You know the song from "Annie?"  "The Sun'll Come Out Tomorrow?"  Well, there wasn't much in the way of sunshine around here today, not literally.  In fact, this morning the radio was referring to the weather as a typical summer day, in Seattle.  But in my mind, it was much better.

This morning I went out for a run with Jonathan.  Now, my runs aren't much in the way of workouts for him.  But he's willing to go with me just to keep me company.  I'm looking forward to when I can run well enough that we can also talk at the same time.  He's really taking on quite the service project in being my running partner, and I appreciate it.

After that, I loaded up Aaron and we went up to Shriners Hospital to get his feet cast.  This time there was no trouble with it.  And it actually went quite quickly.  Now the little monkey has his pulse/ox probe on his hands instead of his feet.  I think he's enjoying it there, and he makes the monitor beep quite a bit because he's always waving his hands around.  Aaron is such a peaceful, patient soul.  His casts go all the way from his toes up to the top of his thighs.  And since the purpose of them is to reposition his feet, they aren't in his usual position.  I really don't think I would be very comfortable with that at all.  But Aaron, true to his nature, is just taking it all in stride.

After Shriners, we went over to Primary's.  There is an 11-year-old girl with T18 who was having surgery today.  Her mom and I have been facebook friends for about a year now, and she was one who really helped me when Aaron was getting his trach.  It was so fun to meet them and to talk with Jennifer.  Elanor is going into 6th grade and is in a regular public school.  She even goes in with  the mainstream classes for part of the day.  Jennifer says she really enjoys interacting with the other kids.  I didn't even dream this might be possible, but maybe Aaron can do that, too.  I am so grateful for all these other moms who walk this way with me.

And then, as if things weren't going well enough, a dear friend stopped by to see how I was doing.  She brought flowers and peanut butter M&Ms to cheer me up.  Nothing says love like chocolate!  She did warn me about overdosing on them.   Oops....

William and the three oldest boys are at a scout camp all week, so tonight we had a small group for Family Home Evening.  The girls helped the younger boys make cookies and then we decorated Aaron's casts.  Plaster is much more moldable than fiberglass, so they are the plain white, old-fashioned, don't-get-wet casts.  Well, not anymore.  He's wearing a "Born to Build" outfit, so we took tool stickers and paint and decorated them all up.  I have to say, they're pretty colorful now.

So, all in all, today has been a much brighter day than the past couple.  Even if the sun had a hard time shining, it was shining in my heart.