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 Keegan, I know that you always appreciated what you had, complained little, lived a lot, smiled enormously, and were thankful for the life you were given for as long as it was given to you.

It’s always tough month for me this time of year (May, that is). My heart splits open every May and tries to heal throughout the year. About the time I think I’m solid again, May rolls around, and my heart splits yet again. Each time it splits a different way, so the healing is haphazard and uneven and scarred, but it is a healing in its own way. However, I always do carry on and have an awesome life.

I’m sure some of my readers wonder what I am referring to, but those that know me already know where I’m going with this since they know that Keegan, my 2nd child, my child who died now 13 years ago, was born February 29, 1984 (yes, Leap Day). February is always a bittersweet month also. I’m thrilled to have had him the short time I did, but I hate that he isn’t still here. May is tough because he was diagnosed with Cystic Fibrosis on May 5, 1984, and he died on May 30, 2001.  This year it seems different though, perhaps because it’s been 13 years and he always felt 13 was his lucky number.

Having one child dead too young has already ripped up my heart. February and May are months particularly hard on me.  Keegan was a light to all that knew him. He was particularly a light to his brother and sister. We all lost a piece of our souls when he died.

His older brother has a different sort of temperament with an intelligence and intellectual light within him that is amazing at times. I have teased him and told him that he is my own personal Sheldon Cooper. Only those that have ever watched “The Big Bang Theory” will understand my reference.

His younger sister has a grace and a presence about her that draw people to her.  She has a love for people that is second to none and a drive to better herself more than most anyone else I know.

In any event, it would be a huge loss to the world should anything happen to either of them, as both have a sheer brilliance that can be mind-boggling at times. That coupled with their deep-seated loving and emotional natures are true gifts, but they both have their own challenges to face that often stymie me beyond belief.  As their mother, I wish I could make their lives easier, but I know that I can’t as we must all follow our own roads and paths and twists and turns that life provides us.  We are all accountable for what we ourselves do in life not only to ourselves but also to others.  It’s just part of the big picture.

In any event, because of all of that, I worry that another child of mine will die too young, and my heart will be ripped up even more.  I know that’s an irrational fear at times, but I fear the loss of their special light.  I dread the nightmares, the nightmares I still have from Keegan’s death, the nightmares that say … “what did you do wrong? what could you have done to stop it? why? how? what?” … even when I am well aware it isn’t my fault.

I guess no one other than another mother whose child has died can understand that grief and that pain and that heaviness and those nightmares. Even if I can’t control the life of my children like I could when they were little, and even if I don’t understand how they might feel about certain issues, I will always and forever love them and can’t fathom having another dead child. Even saying that term hurts me more than anyone can possibly imagine.

I know not everyone will understand this post, but perhaps this post is just for me.  That’s ok, as the main purpose of this blog is to help me and/or to help Roy, so if it does that in any particular post, that’s great.  Nevertheless … if it helps someone else along the way … that’s even better, as our goals in life include leaving the world a better place by helping at least one person better handle their own day-to-day issues.

You know what, though? I really and truly do want to make a difference in other people’s lives!  Therefore, it nearly destroys me inside to know that I can’t always help my own children, some of the people I most want to help. This is, of course, their own life to lead and I accept that.  I truly do.  I merely want them happy and fulfilled in life, doing what they find most rewarding.

Perhaps another person will realize with this that they cannot be everything to everybody ever and that some people must find their own way … even if they are like me … the type of person that wants to be in control of situations around them and to take away the hurt of those they love.  If even knowing that helps someone, then that’s a good thing.

I’d give my life for the people in my life I love the most … my spouse, my children, my family, my good friends

As a mother, though, I can feel ripped up inside, because I fear having another dead child. 

Today, on the 13th anniversary of Keegan’s death, I think I fear that more than I fear dying myself.   

 

 

 

 

 

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“God Shuffled His Feet”

                                   Crash Test Dummies

After seven days

He was quite tired so God said:

“Let there be a day

Just for picnics, with wine and bread”

He gathered up some people he had made

Created blankets and laid back in the shade

The people sipped their wine

And what with God there, they asked him questions

Like: do you have to eat

Or get your hair cut in heaven?

And if your eye got poked out in this life

Would it be waiting up in heaven with your wife?

God shuffled his feet and glanced around at them;

The people cleared their throats and stared right back at him

So he said:

“Once there was a boy

Who woke up with blue hair

To him it was a joy

Until he ran out into the warm air

He thought of how his friends would come to see;

And would they laugh, or had he got some strange disease?

God shuffled his feet and glanced around at them;

The people cleared their throats and stared right back at him

The people sat waiting

Out on their blankets in the garden

But God said nothing

So someone asked him:

“I beg your pardon:

I’m not quite clear about what you just spoke

Was that a parable, or a very subtle joke?”

God shuffled his feet and glanced around at them;

The people cleared their throats and stared right back at him

*~*~*

My second child loved to play with color, particularly with his hair.  He didn’t do it to rebel against society.  He did it because it was fun … and because he could … and because he loved to make others wonder what he was up to now.

 

This is dedicated to my “Boy With The Blue Hair”, Keegan Crowley Wahler, 2.29.1984 to 5.30.2001.

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We miss you, Keegan.

We will miss you forever and always.

We wish we could call you in heaven, to hear that deep guttural laugh and that gravelly voice.

We know you’ll be waiting for us there along with any eyes that were poked out.

 

🙂

 

 

 

 

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It’s funny. Ok maybe funny isn’t the word. It’s sad-funny.

For years and years I have held onto a wrong against my middle (now deceased) child perpetrated by someone who should have done nothing but build him up and better him. I have held onto a hatred that ate holes in my soul due to this.

Was this the perpetrator’s fault? No. That person can deal with the issue through their own conscience and their own God. However, while I believed in my mind that it wasn’t up to me to judge what others did, not wanting others to judge me, my hatred and my unforgiving nature was being very judgmental in this matter.

I have finally come to grips with it. I can be angry with the situation but I have no right to be judgmental and to let that hatred eat at me and everyone around me and the situation at hand. I just need to continue on but keep that individual in my prayers to find peace.

So. Even though said person doesn’t speak to me and doesn’t feel any wrongdoing was done to one of my babies, my forgiveness is offered up to not only that but also to myself for wallowing in it for so long.

Forgiveness sets me right with *my* God at least, even if forgetting isn’t possible. I still forgive. I am at peace with it. I have enough of my own personal issues to handle. I choose to move forward rather than wallow in it.

Forgiveness is the key.

“But I say to you, love your enemies and pray for those who persecute you so that you may also be sons and daughters of God who is in heaven.” Matthew 5:44,45

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On November 23, 2002, I received an email from a random person from Maine that had the wrong email address and was trying to get in touch with a buddy in Boston. Normally, I would have ignored it. However, I could tell he was trying to set up some time to visit, so I sent a quick email back telling him he had the wrong email address. That spawned an online friendship. Five years to the day after that, we got married. It’s now been 11 years … and it’s our 6th anniversary.

We are probably the least likely couple you’d think of. He’s younger than me. He lived in Maine. I lived in California. We’d have had no reason in the world to have met unless it was supposed to happen. We both thought we were crazy. Anyone that knew us and heard about it thought we were crazy. I kept thinking that “this will never work”. So did Roy. However, we had to at least try … because … for both of us … we just knew!

“I’ve got you under my skin. I have got you deep in the heart of me, so deep in my heart that you’re really a part of me. I’ve got you under my skin. I’ve tried so not to give in and I said to myself, ‘this affair, it never will go so well’, but why should I try to resist, when, baby, I know so well that I’ve got you under my skin? I’d sacrifice anything, come what might, for the sake of having you near, in spite of a warning voice that comes in the night, it repeats, repeats in my ear. ‘Don’t you know, you fool? You never can win. Use your mentality. Wake up to reality.’, and each time that I do, just the thought of you makes me stop before I begin, cuz I’ve got you under my skin. I would sacrifice anything, come what might, for the sake of having you near in spite of warning voice that comes in night, it repeats how it yells in my ear. ‘Don’t you know, you fool; there ain’t no chance to win? Why not use your mentality? Wake up! Step up to reality!’ And each time I do, just the thought of you makes me stop just before I begin, because I’ve got you under my skin. Yeah, you grabbed me under my skin.” Frank Sinatra

We don’t believe in coincidence. I’ve mentioned this before. When people tell us what a “coincidence it is” that we met … or how “lucky” we are … we just laugh. It’s neither a coincidence nor luck.

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… and more often than not, we look up and smile and know it was God …

So … God … we both thank you for bringing the joy that we have found after everything that we’ve endured over the years.

Life is good now … and while we’ve been through some MAJOR challenges over the years, this seems to be our general feeling of late:

“Still it’s a real good bet the best is yet to come. The best is yet to come, and, babe, won’t that be fine? You think you’ve seen the sun, but you ain’t seen it shine. Wait till the warm up’s under way … wait till you see that sunshine day. You ain’t seen nothin’ yet.” Frank Sinatra

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“… You used to captivate me by your resonating light.

Now, I’m bound by the life you left behind.

Your face, it haunts my once pleasant dreams.

Your voice, it chased away all the sanity in me.

These wounds won’t seem to heal.

This pain is just too real.

There’s just too much that time cannot erase.

When you cried, I’d wipe away all of your tears.

When you’d scream, I’d fight away all of your fears,

And I held your hand through all of these years …

I’ve tried so hard to tell myself that you’re gone,

But though you’re still with me,

I’ve been alone all along.

When you cried, I’d wipe away all of your tears.

When you’d scream, I’d fight away all of your fears,

And I held your hand through all of these years …”

MY IMMORTAL

Evanescence

 

This is probably one of the harder things I have written. It’s not because I don’t remember or I am unwilling to share. It’s not because I have difficulty writing, because writing is what I do. It’s not because I can’t put it into feelings and words. I can do all of that. It’s just that it’s difficult on me emotionally, mentally, psychologically, intellectually, spiritually, and any other way you might be able to imagine.

Anyone that has read my blog has read about my second son, Keegan, and my thoughts and memories of him. As painful as that can be at times, it helps me to think of him and to remember him, because he was such a wonderful human being. What is hard for me to think about, however, is the time leading up to when he died. Many people thought, because he was born with a genetic illness, that I’d be fine and I’d know and I’d be expecting it.

Guess what? It doesn’t matter. Losing a child, no matter what the reason, is one of the worst things a parent can ever endure. If it’s sudden, the parent tries to second guess and figure out what they could have done differently to stop it. If it’s not sudden, well, the parent tries to second guess and figure out what they could have done differently to stop it. It doesn’t matter. It’s a shock to the psyche. Most parents are wired to want to “fix” whatever caused the problem. Parents are “wired”, if you will, to expect to die before their children. It is just unnatural in most people’s minds to do otherwise.

“… Sunrise, sunset, swiftly fly the years,

One season following another,

Laden with happiness and tears …”

SUNRISE SUNSET

Fiddler on the Roof

 

Let me tell you this … if I could have traded places with my son and died in his place so that he could live, I would have without a second thought. With my Christian faith, in my mind, that must be what God felt when sending a part of Him to die for us, His children. Do I understand it all? No. In fact, for a very long time, I was quite angry with God and I wouldn’t acknowledge much of anything. I guess I had to go through my own dark tunnel to the other side. Do I understand it better? No. I just know that I don’t have to make sense of it to have belief in a power higher than me and I don’t have to like it to have belief in a power higher than me.

“Here’s a riddle for you.

Find the answer.

‘There’s a reason for the world:

You and I’.”

THE RIDDLE

Five for Fighting

 

Anyway, I digress. Normally I’d probably try to find some funny way to handle this topic, but there really is no way. I’m doing this for my own well-being as part of a support group of mothers who have children that have died. I like going to these meetings. While I have mostly (… somewhat … sort of … kind of … possibly … maybe …) handled my own grief over the past 12½ years since Keegan died, it’s nice to be around other mothers that understand. The death of our children may be for vastly different reasons and at vastly different times in their lives, but we still understand one another. It doesn’t matter. The death of a child, no matter how old the child or how old the mother, is devastating. Also, the pain of that death never goes away and the mother never truly “gets over it” and never ever has that “closure” that so many think that they’ll get over time. (The term, “closure”, is one of my pet peeves. There is no closure. Period. End of subject.)

as a mother

Before I get started though, I want to make one point. My son died. He didn’t “pass away”. He hated that term, as do I. In my maybe not-so-humble opinion, it’s sort of a temporal, not-really-there space to feel like someone “passes away”. He wanted to be remembered as a living, breathing human being. He lived. He died. He didn’t just silently pass through and then pass away from this world. That’s one of my pet peeves with the various deaths that I’ve handled. His is the most major … but my own father’s was the same. They lived. They died. They were living breathing human beings with wonderful spirits and souls. Their bodies may have died; however, their spirits and souls live on and didn’t just silently pass through and pass away from this world.

There. I’m done with that particular rant, anyway.

🙂

So what is it about autumn … and September in particular … that makes me a bit nostalgic and makes me think through my life, my choices, my dreams, my goals, my hopes, my ups-and-downs, my highs, and my lows? It can really give me pause to reflect … and I suppose this year is no different, and it gets more so as I get older. All three of my children are 3 of my best friends in the world. I have a spiritual connection with them that just cannot be broken over time, space, death, illness, whatever. It’s now been 12½ years since Keegan died. It still feels like I haven’t woken up from a bad dream. I will never forget what I lost … what the entire world lost … when Keegan died.

Summer has come and passed.

The innocent can never last.

Wake me up when September ends.

Like my father’s come to pass,

Seven years has gone so fast.

Wake me up when September ends.

Here comes the rain again

Falling from the stars,

Drenched in my pain again,

Becoming who we are.

As my memory rests

But never forgets what I lost,

Wake me up when September ends.

Summer has come and passed.

The innocent can never last.

Wake me up when September ends.

Ring out the bells again,

Like we did when spring began.

Wake me up when September ends.

Here comes the rain again,

Falling from the stars,

Drenched in my pain again,

Becoming who we are.

As my memory rests

But never forgets what I lost,

Wake me up when September ends.

Summer has come and passed.

The innocent can never last.

Wake me up when September ends.

Like my father’s come to pass,

Twenty years has gone so fast.

Wake me up when September ends.

Wake me up when September ends.

Wake me up when September ends.

WAKE ME UP WHEN SEPTEMBER ENDS

Green Day

 

In past messages and blog posts, I have described Keegan’s personal journey through this world. I have described much of what his spiritual force meant and continues to mean to me and those that knew him. I have not, however, described the feelings that I personally experienced and what my memories are of that short 17 year time period that was his life and that final time period before he died. Some of it, I truly don’t remember. I have blocked it from memory. Some of it is coming back to me little by little. Some of it, I “re-experience”, if you will, at night when I’m asleep during visits from Keegan in dreams and nightmares. Some of it, I face on a day-to-day basis when coming across items that belonged to him, when talking to his old friends, and/or when being somewhere or doing something that reminds me strongly of him. He has a very strong spirit that remains with me still.

“I’m 15 for a moment

Caught in-between 10 and 20

And I’m just dreaming,

Counting the ways to where you are …

15 there’s still time for you

Time to bide and time to lose

15 there’s never a wish

There’s never a wish better than this,

When you’ve only got 100 years to live.

… And I’m just dreaming

Counting the ways to where you are …”

100 YEARS

Five for Fighting

 

Like most of you know that have read my blog or that know me and my overall story, my second son, Keegan, was born with Cystic Fibrosis (CF). It’s a genetic illness that his father and I did not know that we carried. Since that time, they have mapped it out on Chromosome 7, and for Keegan to have inherited it, he had to get it from both his father and me, which essentially gave any of my children a 1 in 4 chance when conceived to have CF. Only 1 of my 3 children had it. One of them carries the gene and one of them doesn’t, so I guess we hit the odds. Anyway, to just carry the CF gene (like Keegan’s father, like me, and like one of my children do) doesn’t cause any medical trauma, but to have 2 genes on each of the matching chromosomes leaves the individual with the illness. I won’t spend my time in this writing to explain CF. I’ve done that before and that’s not the purpose of this blogpost. I’m just stating this, because, when Keegan was born and was diagnosed with CF, I knew the statistics. I knew the odds. I knew what could and might and probably would happen. I also have a general tendency to want to be in control of any situation and to want to fight whatever might be dragging at me or at anyone I love. I don’t take “no” easily and I don’t back down from a fight if it’s warranted. I was going to fight with every ounce of fight I had in me to help him live a long life.

When it comes to my children, I’ve been likened to a mother bear when anyone tries to get between me and them or tries to hurt them. Like a mother bear, I’m also the first to give them a much-needed whack with my paw (metaphorically speaking, of course) when they are in need of it, well before anyone needs to tell me that they screwed up. I know their strengths and their weaknesses, but I love them unconditionally.

I am prefacing my main purpose for this blog with all of the above, because it will illustrate why I felt so helpless and why I was so angry. I want to fix what’s wrong when it comes to my children and those I love. I want to “kiss it and make it better” if you will. When it comes to my life’s work, I want to feel like I was able to get in there and take care of any issue that comes up. God, however, wants me to learn patience, I guess, and He wants me to learn how to “let loose and let God”. That’s hard to do, however, when it comes to watching my son suffer with major medical issues and when it comes to watching him die.

Do I understand any of the whys? No. I think I’ve finally figured out, though, that I don’t need to. However, let me say this: one of the first questions I want to ask God when I am finally allowed to face Him and to again see Keegan and other loved ones that have gone ahead of me is: why, when Keegan had so much life that he could have enjoyed, did he suffer so long and so much and so young? Why is this sort of suffering allowed to a helpless and innocent child? I’m no longer angry about it. I just want to know why. I can understand enough to believe that there has to be a reason, albeit one I may not understand currently or one I may not ever be able to fully understand, even after God explains it to me.

ANYWHO!!! This is a long and convoluted “preface”, but, for those that don’t want to wade through this, feel free to stop reading at any time. I more than likely won’t even know, but even if I do, I won’t care. I write because it helps me and is cathartic to the hurts as well as the joys within me. If I can help anyone in the meantime with any of this, I am glad.

Keegan was put on the adult transplant list at the young age of 13½. This was a rare thing for children and I knew it was because of the very hard work he and I put in as well as the support and work of his father, his brother, and his sister. Being the kind of person I am, I made sure I kept tight reins on the situation so that he could get every consideration possible, because I knew without it, he’d surely die, and I wasn’t willing to go down without a fight.  For that matter, neither was he.

Now also know that I worked hard to make sure my other two children didn’t feel like they were pushed to the side and forgotten in lieu of the “special child”. I wanted them all to know that, no matter what, I loved them all equally and the same in the way they needed and wanted. So what happened in all of that is that I forgot about myself. My husband at the time forgot about himself. We both forgot about each other. We focused on getting our children what they needed and wanted. It’s a parent’s nature to do that, I think. At least it’s in my nature. I can’t speak for or to anyone else about that. I can only say that’s what it was and is for me.

I’m wired to help those that need my help if I care for them. I’m not wired to take care of myself. The problem with that is … like my children’s pediatrician told me just about every time I saw him when bringing them in … make sure while taking care of them, you take care of you first and foremost, because if something goes wrong with you, there will be no one able to help them any longer.

I tried to take what he said into account and I made sure I took care of me in general, but some forces are beyond our control, much as I hate that, being the person that wants to be in control. I respond to catastrophe in one way (go in head first and fight my way through) and my ex-husband (my husband at the time) reacts differently. Unfortunately for us, that, along with other surrounding issues in our lives, didn’t bode well for our relationship, but that’s a whole different story and not one I’m willing to share. We’re both at fault. I’ll just leave it there. It doesn’t matter other than that. It’s between him and me.

Keegan was on the transplant list for 2½ very long years. It got very tiring and very wearing on him, on me, on his father, on his brother, and on his sister. Much of my own method in releasing the anger and frustration of not being able to control the situation was released in my mountain biking, with handling my at-home business, and through talking to other families with CF online, as they understood at least the massive medical issues being faced, which, much as my extended friends and family tried, they couldn’t understand because they didn’t deal with it 24 hours a day, 7 days a week, 52 weeks out of the year, with no realistic end in sight, other than the hope of that elusive transplant or that elusive miracle medicine that would “fix” the problem … or the fear of the real and present danger of death.

The entire situation made me angry. I wasn’t angry with Keegan. I was just angry at life in general, because it wasn’t in a neat little package, all tied up in a bow, pretty and nice. It sucked big time while we waited. I worked my heart and soul out to keep Keegan as healthy as possible (both physically and mentally), while watching his lung capacity go from 40% to only about 15% in the 2½ years we waited. We endured watching him able to go to school with his friends to staying home 24/7 with at-home tutors and having massive amounts of oxygen and medications (oral and IV) delivered to the house so that he could be monitored 100% of the time. I gave up doing almost anything else to care for him, because I knew that no one else could give the love and care to one of my children that their mother could. I did it because I wanted to … because it was right … because I wouldn’t have it any other way … but I was still angry. I was angry at God … at life … at whatever was causing one of my babies to suffer so much and was causing my other two babies to have to witness and suffer along with their brother. I couldn’t understand why we got hit so hard with a situation that most people will never have to endure or witness in 100 years of life and he was enduring as a child. It wasn’t right. I won’t say it wasn’t “fair”, because my mommy and daddy raised me to know that life isn’t fair, but you deal with what comes your way and carry on.

“Play the cards you’re dealt in life, Jill. Enjoy the game while you’re in it and never ever EVER fold.”

“When you get knocked down in life, Jill, get back up NO MATTER WHAT. Fight, even when you feel like giving up. Fight all the way to the end.”

I believe all of that. No one should ever give up and give in. I’ve taught my children that. It’s the only way to get through life sometimes when bad stuff comes your way. It’s the only way to get to the other side where the good stuff lies.

So I played those cards.

Keegan played those cards.

We all played those cards.

I got back up when knocked down.

Keegan got back up when knocked down.

We all got back up when knocked down.

Many times, we felt like giving up. We still fought … all the way through.

Then it happened. On March 17, 2000, Keegan was called for a double lung transplant. He sailed through it. Why wouldn’t he? In my mind, he was getting his transplant at Stanford University Hospital, led by a team of doctors that helped pioneer organ transplantation in the 1960s. They knew what they were doing. Keegan had fought to get that far. He fully expected to make it through. He followed the rules. He did what he was told to do medically. I fully expected he’d make it through. Hell, that’s part of what “being in control” is all about. You expect to win when the plan comes to fruition. He got his transplant. He won. He lived. He went on.

Ring out the bells again,

Like we did when spring began

Wake me up when September ends.

 

Then, five weeks after his transplant (early May), his father had to travel out of state for his job, which would require him to be gone for several weeks/months. I was still at Stanford, staying in a “transplant apartment” with Keegan. Keegan was sleeping in the bedroom. I was sleeping on the couch. Keegan was out of the hospital, but he was confined to living within a certain radius of the hospital for a while after the transplant so that he could be easily monitored by the doctors. They were still giving him a lot of care and a lot of meds. However, I had 2 other children … both still in school … at home … that were also just as important to me. So I had to take Keegan out of that apartment and bring him home … “AMA” … “Against Medical Advice”.

You do what you gotta do.

You don’t give up.

You play the cards you’re dealt.

You get back up.

You keep fighting.

I brought him to Stanford just about daily, which was approximately an hour away … *IF* the traffic was flowing easily … which rarely happened. Generally it was at least a 2 hour drive each way. We did it … because, as I was taught growing up, “you do what you gotta do” … “you don’t give up” … “you play the cards you’re dealt” … “you get back up” … “you keep fighting”.

He did well, in spite of it all, and Stanford doctors allowed us later to go to 1 day per week. Keegan was still on home schooling. We celebrated! He’d gotten through the worst … and was on the upswing. We were back in control.

Ring out the bells again,

Like we did when spring began.

Wake me up when September ends.

 

Then … in late spring … he was diagnosed with transplant-related cancer on his new lungs … and he started to go through chemotherapy. We went back to visits at Stanford 2 – 4 times per week.

You do what you gotta do. You fight. Don’t give up. Don’t show your weakness. Don’t cry. Don’t air your dirty laundry. Be strong. Be confident. Don’t let anyone know that you feel like you are melting inside.

The cancer was brought under control.

Celebrate!

Ring out the bells again,

Like we did when spring began.

Wake me up when September ends.

 

They let him go to a camp in August designed specifically for transplant kids. He was gone for several days, finally able to enjoy a summer camp like “normal” kids. (What is normal, anyway?)

His father was still out of town.

While Keegan was at camp, he finally also had a medical issue that a “normal” kid has … he fell and broke his ankle.

You do what you gotta do. You fight. Don’t give up.

He had it set and his ankle was put in a cast. He was actually able to go back to school as a junior after being home-schooled for his entire sophomore year. He was ecstatic. He may have gone back with a cast on his ankle and foot … but he was able to go back and see friends that were too frightened by his tenuous health to visit him during it all. A few still saw him while he was out.  A few visited … but it was a precious few. They know who they are.

All seemed to be going well. Make-A-Wish contacted him and offered to set up a wish for him. His desire was a cruise on the Disney Cruise Lines to the Bahamas. We all were included and we went in late February 2001 during his birthday week. The cruise was awesome and I was sure we’d finally licked this nasty problem of him dying so young. He did what he was supposed to do according to the doctors. He was regularly checked. All was well.

There was this one nagging problem though. It kept poking at me. While on the cruise, he developed a terrible cough and cold. We did what was expected … but it just was nagging at me. He didn’t look the same. He was sluggish. He was lethargic. He stated he was fine … but to me, it didn’t seem fine. He was, however, 17 years old, and I couldn’t put my finger on it like I could when he was a baby. Something was *NOT* right.

We came back from the trip in early March. I had a business meeting for my at-home business in Portland, Oregon the weekend of March 23 – 25, 2001. I left on the 22nd because I had a fairly early meeting that next day. He was going on a field trip with a competition robotics club at his high school that his brother had founded. He was angry with me about something. I can’t for the life of me remember what it was, but I know he told me he was glad I was leaving and he “never wanted to speak to me again”, upon which he stormed out the door. That wasn’t unusual in and of itself. Kids always yell things at parents when they aren’t getting their way. Our job as parents is to make sure that we do what is proper and right, even if the child in question doesn’t like it. His father had returned to the area and was off that job assignment out of state, so I could leave for the meeting without finding someone to stay with them while I was gone in Portland. I left for the airport.

Friday.

We had our meeting and then we had a “fun day” planned before the convention I was working at and attending. We went “go-karting”. I had never go-karted before, but I had an awesome time … even though I severely burned my left forearm on the exhaust, probably should have gone to the doctor, but didn’t tell anyone there. It didn’t matter. I’d heard from my children’s father, and he had said they were all fine … and that he was going to bring them to the robotics competition on Saturday also, since they had qualified to continue.

I went to sleep.

Saturday morning.

It was the beginning of spring break for many. I got a phone call on my cell phone at 6:30 in the morning. At that time, cell phones were not very common and I only had mine for absolute emergencies. It was my husband, the children’s father. Why was he calling my cell? He never called my cell. He had the hotel phone number and my room number.

“Hi, what’s up?”

I just took Keegan to ValleyCare (the local town hospital). He’s being life-flighted to Stanford. You might want to come home. He may not make it.

“WHAT???? WHAT IN GOD’S NAME IS GOING ON THERE? WHAT THE HELL HAPPENED?”

We don’t know. He’s sleeping and not responding. He’s struggling to breathe. I know you’re supposed to be working … but this is kind of important.

Well, yeah, it most sure as hell is … so I called the main people in charge, checked out of the hotel, and caught a taxi to the airport.

“No, ma’am, we have no flights available. It’s the beginning of Easter Break. You can’t change your flight.”

I heard this over and over … until I began to yell … quite loudly … that I didn’t care if it was spring break or if the emperor was coming through … I had to catch an airplane due to a family medical emergency. (This was before the September 11 attacks and all the massive security, so thankfully, I didn’t get yanked out of there by my teeth.)

They agreed I could be on standby. I wandered the airport. I waited. I begged the airline agents.

I wish I knew who the nice person was that went up to the counter anonymously and went on standby to give me their seat. I found out about it later. I owe a lot to that person, and I will pay it forward for sure. They put me in First Class.

When I got to the Oakland Airport, I was told I’d “have to wait” because they had lost my luggage.

No. I wasn’t waiting. They could deliver it to me when they found it. I was going to Stanford.

Part way there … if you can imagine … my cell phone rang again. It was raining big time. It was cold. It was slippery. Traffic was horrendous. I was on my way to the San Mateo Bridge in the San Francisco Bay Area out of the Oakland Airport on I-880. Fine … I’ll pick it up … I don’t care what anyone says right now about not talking on the phone. I’m answering it.  It probably has to do with Keegan.

“Hi, Jill, this is ___ (some random nurse) at Stanford. You better get here fast because he’s going to die.”

Now … I’d just told her I was driving in traffic in the rain and was on 880 … better known as the “Nasty Nimitz” to Bay Area residents because of its horrific traffic. I’m surprised I didn’t get into an accident myself. What was that dimwit thinking to say that when I’d told her I was in traffic?

Play those cards. Don’t give up. Keep fighting. Keep your face up. Put your shoulder into it. Don’t show weakness. Build up that wall so you can’t feel pain. Get back up when you’re knocked down.

The sun came out … the clouds cleared … as I was crossing the San Mateo Bridge on my way there. This was surely my sign. All was good. He’d be fine.

I don’t remember much more than that right now, but he hadn’t died when I got there. They said he was “non-responsive”, and, for the most part, he was, as he was going into some sort of medical shock. They said his blood pressure was dropping, his heart was slowing, he was going into renal failure, and his lungs weren’t pulling in enough air.

Play those cards. Don’t give up. Keep fighting. Keep your face up. Put your shoulder into it. Don’t show weakness. Keep your wall impenetrable so that you can’t feel the pain. Get back up, because you’ve only been knocked down.

They brought me to Keegan’s bedside. I started to talk to him. That’s when they were amazed. He responded. He turned his head toward me, even though his eyes didn’t open up. He grasped my finger with deathly white fingers. His breathing wasn’t so labored, and it started to go deeper. His heart started beating regularly. His blood pressure stabilized.

Come on, Keegan. Play those cards. Don’t give up, Keegan. Keep fighting, Keegan. Mama’s here to help as best she can, and she won’t leave the hospital without you.

I talked to myself. I told myself to keep my wall sturdy and strong. I talked to him. I talked to whoever would listen to me.

His health went up and down over the next few months … 2 months to be exact … while I slept on the couch in the waiting room and stayed by his bedside until I couldn’t stay awake … and then I slept some more on the couch. I snuck into the nurse’s changing area where a nice nurse had shown me how to run in and take a shower in the middle of the night. My daughter came and slept in the waiting room with me on occasion. Her bright face helped both Keegan and me. Logan was a senior in high school. He was busy. He came to visit as he could. His father was working. He came to visit as he could.

Over the next 2 months, I watched them put a Foley catheter into him. I watched them put chest tubes into him. I watched them begin to drain fluid from around his lungs. I watched them access the port-a-cath he had implanted in his chest. I watched them intubate him. I watched them put him into a medically-induced coma. I watched them stop a medication that was causing him to become massively constipated. I watched it finally clear out … all over the place … all over me. I helped wash him. I combed his hair. I brought in some of his beloved articles from home, so that he could feel things that to him meant “home” and meant “life”. I watched them change urinary catheters. I watched him throw up around the tube feeding oxygen into his lungs as they pumped food through a gastrointestinal tube into his stomach. I helped suction phlegm out of his lungs. I helped empty urinary and rectal catheters and bags. I helped change IV bags and IV needles. I watched them give him a tracheotomy. I talked to the Life Flight paramedics and nurses that brought him in. I helped keep him calm while he and I fought.

At the end of May, however, I saw a change. I saw his will start to falter. He was tired. He wanted to “go home” if you will. He was ready to die … but he was fighting because he was worried about us. I told him while he was in his coma … “It’s ok, Keegan … go if you’re ready … we’ll be ok … I will make sure of it. I’ll make sure your brother and sister are ok. Don’t worry. We’ll be ok. You go home. I’ll make sure everyone is ok. I’ll be ok too.” He nodded. I know he nodded, even though doctors told me he couldn’t have, because he was in a medically-induced coma. A mother knows. He nodded. Period. I saw him settle down. I watched his vitals start to drop.

Stay strong, Jill. Don’t show weakness. Keep your wall up. Don’t let anyone know that a part of you is dying right along with Keegan. He’s going home to his God. He’s going home to see his two Grampas. He’s going home to not hurt any more. He fought the good fight, but he’s off to somewhere better.

Stay strong, Jill. You have to call other people, Jill. Don’t give up. Don’t give in. Don’t show weakness. Keep up your own fight. His card game is done. Yours is not.

I called his older brother. “Go get your sister at cheerleading practice. Come to the hospital. ***NOW***”

He didn’t ask questions. He just did it.

I called his father.

“Should I come? I’m at work. It’ll take me a couple of hours to get there.”

Your son WANTS you here. COME.

“Ok, no problem, I’m on my way.”

I sat by his side. I wiped his sweaty face. I hugged him. I kissed him. I talked to him and kept up a rolling banter.

The nurse came in and said that he’d stay with Keegan, that I should take a walk, that I should get some fresh air, that I should eat something. Nope. I wasn’t leaving. I’d always promised him that if he was dying, and it was in my power, I would remain by his side, and I’d make sure that he was comfortable. I stayed. I couldn’t eat anyway. I’d have thrown up if I’d tried to eat.

The nurse wanted to change his sheets and his catheters.

“Go out while I do this.”

No. I’ve helped with this before. I’m staying.

“Are you sure?”

Yes. I’m quite sure. I’ve helped with that before. I’m going to help now too. I’m not leaving Keegan’s side.

… and that’s when I knew …

That’s when I saw it.

Keegan was hemorrhaging. I saw deep dark red blood coming from his rectum. I saw deep dark red blood in his urinary catheter. I saw blood coming from his mouth. I saw blood coming around his tracheotomy tube.  I saw blood coming from his nose.

The nurse tried to push me away, so I wouldn’t see. I wouldn’t go. Keegan was clinging to my hand.

It’s ok, Keegan. Mama won’t leave.

Right then, Keegan’s dad arrived. His brother and sister were already there and were waiting in the outside room to be brought bedside. His father didn’t know and was bringing our then 12-year-old daughter in to see her brother and to sit by his side.

I screamed.

***NO***!!!

Do *NOT* bring her in here. Do *NOT* come in here.

They never knew. I never told them. If they read this now, they’ll know.

I kept up my wall. I kept up my “show no fear”. I kept up my good face. I couldn’t let anyone else deal with what I was witnessing. I’m the mother. I have to protect all of my children. I had to protect Keegan from being seen. I had to protect his sister from seeing it. I couldn’t let his father see it. I couldn’t let anyone see what I was witnessing. I’d rather it be just one of us than all of us. I’d rather handle this on my own. I’d rather be in control.

The nurse was able to take care of the problem so they never knew. They’ll only know when they read this.

Keegan died at dawn the next morning, a very hot May 30 in the Bay Area, at Stanford Hospital in Palo Alto, CA. I was at his side. His father was at his side. His brother was at his side. His sister was at his side.

My daughter said in a very quiet voice, “I know what Keegan is going to do today. He’s going fishing with Grampa Glenn.”

My oldest son turned and looked at me and said, “I just lost my best friend.”

Remember above where I stated Keegan had yelled “I never want to speak to you again”? That ran through my head. It made me laugh … and cry … at the same time. I know he didn’t mean it, because he clung to me, and he turned to me throughout the entire time he was in the hospital … but it is kind of ironic what you remember when going through this sort of thing.

Stay strong. Don’t show weakness. Don’t show that you are dying inside. Be there for everyone. Don’t cry. Hold up. Keep that wall strong.

My daughter stayed by my side. I had to go sign the death certificate for the coroner. I had to go call my mother and my mother-in-law. I told them to call the rest of the families. They all came, and I remained strong for them. I had no choice. My other 2 children needed me to be strong for them. They had both sat with their brother while he died. I held it together. I remember calling the school and forcing my way through the school secretary to talk to the principal with my daughter clinging to my side.

Hold it together, Jill. You’ll be fine. You can do this.

I remember driving my daughter home from the hospital. I probably shouldn’t have been driving.

Hold it together, Jill. You’ll be fine. You can do this.

I remember getting home and cleaning the house, because I knew that people would be coming to visit.

Hold it together, Jill. You’ll be fine. You can do this.

I remember planning his Celebration of Life service to be in our home a month after he died, exactly the way he wanted it. I remember driving to the funeral home with my family to advise them of his cremation wishes. His older brother’s Senior Prom was 3 days after he died. I went and took pictures of him leaving for Prom. His older brother graduated from high school 2½ weeks after he died. I held it together at graduation. Then 3½ weeks after he died, I needed massive dental surgery due to a root canal challenge. I fell apart at the dentist, because they were the same ones that handled Keegan’s braces. I pulled it back together. My oldest son brought me to the oral surgeon. I vaguely remember going to the funeral home a few days later presumably to pick up his death certificate and being handed the urn with his ashes. I was alone. I cried the entire way home. I shouldn’t have been driving.

Hold it together, Jill. You’ll be fine. You can do this.

I held my head up and went through the motions for that entire month. I am forever grateful to my many friends that brought food, or my family would have starved. I couldn’t get to the grocery store or cook. I got up and was like a robot all day, but I kept moving. I was the consummate hostess at his Celebration. I made sure everyone was ok.

Hold it together, Jill. You’ll be fine. You can do this.

Three days after the Celebration, I got what was thought to be the flu. It lasted for 2½ weeks. I don’t think it was the flu. I think my body was saying “ENOUGH!!!! YOU NEED SLEEP.”

“It all keeps adding up.

I think I’m cracking up.

Am I just paranoid?

Grasping to control,

So I better hold on.

Sometimes I give myself the creeps.

Sometimes my mind plays tricks on me.

It all keeps adding up.

I think I’m cracking up.”

BASKET CASE

Green Day

 

This has not been an easy thing for me to write. I haven’t even written all of it. Some of it will come out over time. I think my own personal “grief journey” has been to try to cover it … to make people think I’m doing ok when oftentimes I feel like I am dying inside. It’s come out over the past 12½ years because of the help of others that have been through the same thing. There are many, many reasons for the path I’ve chosen to take. One of the main ones is the same reason I could only talk to CF parents and patients about Keegan’s health issues when he was alive. No one could understand it unless they were going through it. I couldn’t talk to a “counselor” per se, because, unless they’ve been directly through major health issues with a child and/or the death of a child personally, they do not understand, no matter how hard they may want to understand. Book training will not give anyone the empathy for it, no matter what anyone thinks.

Roy’s grandmother understood me. Her son died, even if not as young as Keegan. A mother still understands. Other women who have gone through it and continue to go through it understand. We can better counsel each other than anyone else can, particularly with the help of “self-help” manuals and the Bible.

It’s like losing an arm or a leg. Surely you get over it and learn to function, but that scar is always there, and you always wish you weren’t so different from everyone else that doesn’t have that scar.  You will always wish that arm or leg were back.

We’re all part of “That Club”. We’ve all been elected to and inducted into “That Club”. We don’t want to be in “That Club”, but we are in “That Club”, no matter what anyone wants. It’s “That Club” no one wants to be in, but once you are in it, you cannot get out. It’s “That Club” parents who have had a child die belong to. It’s not “That Club” that anyone wants to join, believe me.

So … as a final light-hearted attempt to keep that same marvelous sense of humor my son had, I’ll end with this:

bad$$

 

 

Wake me up when September ends.

 

 

 

 

 

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images
 
 
 
Brilliant left wing strategy:
 
 
Divide and conquer.
 
 
The folks who are getting the free stuff don’t like the folks who are paying for the free stuff, because the folks who are paying for the free stuff can no longer afford to pay for both the free stuff and their own stuff.  Then the folks who are paying for the free stuff want the free stuff to stop but the folks who are getting the free stuff want even more free stuff on top of the free stuff they are already getting!
 
Now … the people who are forcing the people who pay for the free stuff have told the people who are RECEIVING the free stuff that the people who are PAYING for the free stuff are being mean, prejudiced, and racist.
 
So … the people who are GETTING the free stuff have been convinced they need to hate the people who are paying for the free stuff by the people who are forcing some people to pay for their free stuff and giving them the free stuff in the first place.
 
We have let the free stuff giving go on for so long that there are now more people getting free stuff than paying for the free stuff.
 
Now understand this:  All great democracies have committed financial suicide somewhere between 200 and 250 years after being founded. The reason?  The voters figured out they could vote themselves money from the treasury by electing people who promised to give them money from the treasury in exchange for electing them.
 
The United States officially became a Republic in 1776, 236 years ago. The number of people now getting free stuff outnumbers the people paying for the free stuff.  Failure to change that spells the end of the United States as we know it.
 
 
 
For all of our sakes … please … TAKE A STAND!!!
 
Borders:  Closed!
 
Language:  English only
 
Culture:  God, Constitution, and the Bill of Rights!
 
Drug Free:  Mandatory Drug Screening before Welfare!
 
***ABSOLUTELY*** no “freebies” to Non-Citizens!
 
 
 
 
 
 

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This picture attachment may have been originally intended as just a FaceBook post, but Roy and I felt it appropriate to share here. As we have said before, we are not and will not ever be among the “politically correct” sheeple … PERIOD.

So … with that … we hereby state that God and Jesus Christ are and always will be welcome in our home, in our non-politically correct spoken or written comments, on our FaceBook pages, and in our blogposts.

MERRY CHRISTMAS, everyone, and GOODWILL TO ALL!

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