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Posts Tagged ‘Cystic Fibrosis’

This time of year is always tough. Keegan was due on Valentine’s Day. He was born on Leap Day (yes, really Leap Day), which fit his personality *so* much better. This year he gets a *real* birthday. It is bittersweet.

“Mid-February shouldn’t be so scary. … I think of you and I’m not afraid. Your favorite records make me feel better because you’d sing along … but you went away. How dare you? I miss you. They say I’ll be ok but I’m not gonna ever get over you.” Miranda Lambert

(I love you, Keegan. What would’ve been your 36th … or is it your 9th … birthday is coming up this month.)

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18 years ago today at 5:47 am

I miss you, Keegan. You’re forever 17.

❤️❤️❤️

#keegan #cysticfibrosis #cf #lungtransplant #brokenheart #love #imissyou #forever17

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Happy sort of Leap Day Birthday, Baby Boy!

I miss you, Keegan … every second of every day.

🎈🎂 🍦🍨🧁 🎁 🍰 🎊 🎉

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I know I don’t write as often as some do, but I write when it is good for me or when I need to get something out as it can be very cathartic. At least that’s the purpose of my blog … to help me and to hopefully help someone else who runs into the same types of issues.

With my children, I’ve had highs and lows, great successes and great losses. Sometimes certain occasions and occurrences can evoke those up-and-down feelings in me. Right now is one of those times.

Roy (Papa) and I (Oma) had the great joy of being blessed with our first grandchild (Harrison) on 12.21.18. It’s a humbling feeling, quite honestly to view the next generation.

I have a true sense of joy from this, but I cannot help but wish that my late son, Keegan, could be there as his baby sister, Kara, becomes a first-time mama to Harrison. I can’t help but cry over the loss of a beloved uncle that would have loved this baby boy to pieces, spoiled him rotten, and taken him on crazy adventures.

I know that I am truly blessed … and my heart is overflowing … as are my emotions. Harrison and Keegan are loved beyond words, and this Oma/Mama is honored to be a part of their lives.

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17 years

Amazing …

It’s been 17 long yet short years that my then 17 year old middle child died at dawn on May 30. He has been gone as long as he was alive.

People have come and gone, yet he lives on in the hearts, minds, and souls of many.

I will forever and always miss him. My heart will ache for 17 years times 17 years times infinity.

Keegan, your spirit lives on.

17 years

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When he was 16 years old, he received a double lung transplant at Stanford University Hospital.  Then, 16 years ago today, at the ripe old age of merely 17, at 547 am, he died.  

Keegan, forever and always, I will miss my #2 child … 

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Those of you that have read my blogposts throughout the past several years know that I write about a variety of topics.   I couldn’t limit myself to one thing if I tried.  I have entirely too many interests and ideas as well as a multitude of life experiences, being the age that I am.   

One of my common topics, however, is my children.  All of them are among the most important things in my life and have all made me the person I am today.  Through all of the ups-and-downs, all three of them have made an amazing impact on me. 

My middle child, Keegan, died when he was 17 years old, one year post double lung transplant.  He had an amazing old soul and touched more people in his short 17-year life than most people do in 80 or 90 years.   All of this I have discussed previously.  However, this morning, shortly after I arrived at work, it again became apparent how much impact he had.  I received a message from one of his high school buddies.   I can flat out say … I UGLY cried … which sounds terrible but it was a “truly-touched-my-soul-to-the-core cry” … and once again convinced me of what a truly remarkable being Keegan is/was.

 
Anyway, shortly after I arrived at work, I noticed a private message that had been sent to me via social media.  I checked and noted it was from a good friend that was one of Keegan’s really good buddies throughout school.  Her name is Ann and she has her own blog at:

 http://lostandfarm.wordpress.com 

 
Check her out. She is a wonderful friend, wife, and mother with a wealth of wisdom to share.

 
Anyway, I received the following message from her this morning:


 

 

 
 She then proceeded to state the following: “I don’t know if you remember Colleen ____ (she’s Colleen Houser now) but she asked if I know how to reach Keegan’s family still because she wanted to let them know that Keegan touched a lot of lives and will never be forgotten.  I told her I would pass the message on.”

 
I responded with: “You are more than welcome to give her my email and have her contact me through Facebook.  I’m sitting here sobbing at work.   He died the end of May.”

 
This is what I received in return from Ann: 
 

“I’m sure she’d love that. … she basically grew up with us and we all went to high school together. 🙂  She was often in on our shenanigans with Keegan.   LOL!  These are her books, by the way.”

 
There was more, but I’ll leave it at that.  Colleen contacted me through Facebook.   I remember her as part of the crowd that all were silly together in high school with Keegan and who he counted as friends.  I encourage you to go to her Amazon website and check her out.  It’ll be well worth it.  Her Amazon.com author page is:

 
https://www.amazon.com/Colleen-Houser/e/B00C5RHY00/ref=sr_tc_2_0?qid=1491593348&sr=1-2-ent 
 

I’ll end with this.

 

Even if your life is short, go out and do something big.  Affect the lives of those around you, however you can.   Uplift.  Share.  Enjoy.  Put yourself out there.  Don’t live small.  Live large and you will make a difference.

Carry on, all. 

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… dedicated to my baby boy, my late son, my Keegan … on his “fake” birthday since this isn’t a Leap Year and his “real” birthday … 

“Lucky I’m sane after all I’ve been through. (Everybody say I’m cool.) (He cool.) I can’t complain but sometimes I still do. Life’s been good to me so far.” Joe Walsh

#birthday #birthdaycelebration #keegan #leapdaybaby #love #cysticfibrosis #cf #justbreathe #cfsucks

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It’s funny. Well, it’s not “ha ha funny”. It’s a “this is uniquely weird” kind of funny. My middle child was born on Leap Day. He, as I’ve said before, had Cystic Fibrosis … and a double lung transplant … and a spirit & personality that was bigger than life. He was definitely what people would call an “old soul” and he touched more lives in his short 17 year life than most do in 80 – 90 years. I love him more than I can put into words, as I do all of my amazing children.

Anyway, he always had a way of making himself known and making someone to either be irate or laugh till they cried. The other day was apparently “National Wear Two Different Shoes Day”. I swear they did this in his memory because he used to do that just to see who would notice (amazingly very few did). Yesterday was “May the Fourth Be With You Day”. He’d have been all over that and probably would have showed up at work as a Storm Trooper. Today is Cinco De Mayo … and he’d have been eating chips and salsa, drinking beer, and making all the jokes about it. 


He dearly loved his kitty cats too. 

What’s ironic … he was diagnosed with Cystic Fibrosis at 2 months of age 32 years ago TODAY … on Cinco De Mayo.  He always had a knack for hitting odd holidays, being born on Leap Day, being called for transplant on St Patrick’s Day … among MANY other similar incidences.
I guess it shouldn’t surprise me that there was a CF fundraiser last night in our hometown on “May the Fourth Be With You Day” … complete with Storm Troopers in attendance.

There are no coincidences in my not-so-humble opinion. 

Damn, I miss you, Keegan. 

*~*~*

“Tears In Heaven”

Eric Clapton

Would you know my name

If I saw you in heaven?

Would it be the same

If I saw you in heaven?

I must be strong

And carry on,

‘Cause I know I don’t belong

Here in heaven.

Would you hold my hand

If I saw you in heaven?

Would you help me stand

If I saw you in heaven?

I’ll find my way

Through night and day,

‘Cause I know I just can’t stay

Here in heaven.

Time can bring you down,

Time can bend your knees.

Time can break your heart,

Have you begging please, begging please.

Beyond the door,

There’s peace, I’m sure,

And I know there’ll be no more

Tears in heaven.

Would you know my name

If I saw you in heaven?

Would it be the same

If I saw you in heaven?

I must be strong

And carry on,

‘Cause I know I don’t belong

Here in heaven.

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My middle child was born on February 29, 1984 (yes, Leap Day).  I know I’ve stated that in prior blogposts, but this year it’s particularly of import to me anyway, because he’d actually have a “real” birthday.  He was one of the select few with that special day as his birthday.  I remember it well also.  He was born by emergency C-section, but he was a beautiful full-term baby.  We didn’t know what awaited us though with his health.  As I’ve stated before, he died on May 30, 2001 from complications of Cystic Fibrosis (CF) a year after a successful double lung transplant at Stanford University in Palo Alto, CA.  The fact that he had CF was a 1 in 4 chance for each child his father and I conceived.  We didn’t know that we carried that gene at the time, because it couldn’t be tested in advance then and it had never appeared in our family.  However, our beautiful 1 in 4 child was born on a day that happens only every 1 in 4 years.  Anyway, he had Cystic Fibrosis, something children that can’t pronounce it have called “65 Roses” over the years.

*~*~*

 

February 2001

 

 

*~*~*

 

 

65 Roses

The Wolverines

When I was just a small child, mama and daddy came to me.

They sat me down and told me of the flowers my sister received,

65 roses in yellow and red, made her so tired she had to stay in bed.

I just couldn’t believe the flowers my sister received

Made it so hard for her to breathe.

Why does she have 65 roses,

Must be her birthday today?

She must have been good to get 65 roses!

Why can’t she come out to play?

65 roses of yellow and red made her so tired she had to stay in bed.

I looked all around, but I couldn’t find

The 65 roses were on my mind.

When I’d grown up, I see that the only one thinking of roses was me,

And the reason that the 65 roses came

Was because I was too young to understand the name.

65 roses!

Cystic Fibrosis made her so tired she had to stay in bed.

65 roses!

Cystic Fibrosis!

I wish she had roses instead.

65 roses!

Cystic Fibrosis!

I wish that she could come out to play.

Life, one supposes, is no bed of roses.

I wish she had roses instead.

I wish she had roses instead.

65 roses.

Cystic Fibrosis.

 

 

*~*~*

 

 

August 1993

 

 

*~*~*

 

 

This post isn’t about all of that though.  I had to mention it however, because I found the song so amazing.  Also, Cystic Fibrosis (65 roses) was part of his life.

This post, however, is mainly about how he lived his life, albeit a short one.  He experienced more and touched more than most people do by the time they die at 80, 90, or 100 years of age.  He endured more pain than most anyone I know, but he enjoyed life to the absolute fullest.  He used to tell me that he didn’t want people to forget him and that he didn’t want them to think he just existed in life but that he truly lived life.  He absolutely abhorred the term “passed away” when referring to someone that has died.

“Mom!  That’s so demeaning.  It doesn’t even sound like they really lived.  They merely existed in life, and then they passed away and through.  Maybe some people live life that way, but when I’m gone, I want people to remember that I lived and that I then died.  I didn’t just exist.  I LIVED!”

This is why this song by OneRepublic is so appropriate to dedicate to him, not only because they have it dedicated to a fan of theirs that has Cystic Fibrosis, but also because, in his own words …

 

 

I LIVED

OneRepublic

Hope when you take that jump, you don’t fear the fall.

Hope when the water rises, you built a wall.

Hope when the crowd screams out, they’re screaming your name.

Hope if everybody runs, you choose to stay.

Hope that you fall in love, and it hurts so bad.

The only way you can know is give it all you have,

And I hope that you don’t suffer but take the pain.

Hope when the moment comes, you’ll say …

I did it all!

I did it all!

I owned every second that this world could give!

I saw so many places, the things that I did!

With every broken bone, I swear I lived!

Hope that you spend your days, but they all add up,

And when that sun goes down, hope you raise your cup!

Oh, I wish that I could witness all your joy and all your pain,

But until my moment comes, I’ll say:

I did it all!

I did it all!

I owned every second that this world could give!

I saw so many places, the things that I did!

With every broken bone, I swear I lived!

Oh with every broken bone, I swear I lived.

With every broken bone, I swear …

I did it all!

I did it all!

I owned every second that this world could give!

I saw so many places, the things that I did!

With every broken bone, I swear I lived life!

Oh I swear I lived!

 

 

 

*~*~*

 

 

 

February 2001

 

 

*~*~*

 

 

Ask his friends how he lived.  He lived it to the fullest.  Even at a camp held especially for transplant patients, he was all into the camp … and ended up with a broken bone in his ankle … but he lived … and he did it all.  He endured broken bones and a broken heart.  He experienced travelling to visit new places.  He never feared failing.  He owned every single solitary second that his God gave him, be it good or bad.  For that, he will forever be a role model and a hero to me.  If I could just be half as brave and daring as he was, I’ll know that I did life proud.

So on what would be his 8th “real birthday” … or the 32nd year since he was born … I’ll also offer this from one of Celine Dion’s hits … one of the ones that make me remember him so dearly, as he had said once that this made him think of me, how I worked to get the health care he deserved, and how he wanted to dedicate it to me.  That made me cry, because, in my mind, it better describes what he and both of his siblings did (and continue to do) for me.  I am now who I am … because all 3 of my children loved me.

 
  

 

Because You Loved Me

​​​​-as written by Diane Warren

​​​​-as sung by Celine Dion

For all those times you stood by me,

For all the truth that you made me see,

For all the joy you brought to my life,

For all the wrong that you made right,

For every dream you made come true,

For all the love I found in you,

I’ll be forever thankful, baby.

You’re the one who held me up,

Never let me fall.

You’re the one who saw me through it all.

You were my strength when I was weak.

You were my voice when I couldn’t speak.

You were my eyes when I couldn’t see.

You saw the best there was in me,

Lifted me up when I couldn’t reach.

You gave me faith ‘cuz you believed.

I’m everything I am,

Because you loved me.

You gave me wings and made me fly.

You touched my hand. I could touch the sky.

I lost my faith. You gave it back to me.

You said no star was out of reach.

You stood by me and I stood tall.

I had your love.

I had it all.

I’m grateful for each day you gave me.

Maybe I don’t know that much,

But I know this much is true:

I was blessed, because I was loved by you

You were my strength when I was weak

You were my voice when I couldn’t speak

You were my eyes when I couldn’t see

You saw the best there was in me

Lifted me up when I couldn’t reach

You gave me faith ‘cuz you believed

I’m everything I am

Because you loved me

You were always there for me,

The tender wind that carried me,

A light in the dark, shining your love into my life.

You’ve been my inspiration.

Through the lies, you were the truth.

My world is a better place because of you.

You were my strength when I was weak.

You were my voice when I couldn’t speak.

You were my eyes when I couldn’t see.

You saw the best there was in me.

Lifted me up when I couldn’t reach,

You gave me faith ‘cuz you believed.

I’m everything I am,

Because you loved me.

I’m everything I am,

Because you loved me.

*~*~*

 

 

*~*~*

 

Happy birthday, Keegan!  I love you forever and always!

 

 

 

 

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