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Posts Tagged ‘Make-A-Wish’

Fifteen years ago this week, my 2nd son was granted a Make-A-Wish trip due to his on-going battle with Cystic Fibrosis, a little less than a year post-double-lung-transplant at Stanford University Hospital. He was doing well at the time and his 17th birthday occurred while we were on the trip. It’s bittersweet remembering those great times we had on the Disney Cruise, looking at pictures such as this, and then knowing that he was in the hospital fighting for his life only one month later. He died just three months after this trip. I choose to remember him like this … happy, healthy, and thrilled to be on a life-long bucket list dream of his … a cruise in the Bahamas.

I miss you, Keegan, but, without a doubt, the 17 very short years you were with us were worth the joy, the grief, the pain, the loss, the love, the ups, the downs. Until we meet again … just remember this:

FISHY FISHY!!!

(a story for a different time in a different blogpost in a different galaxy)

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Keegan, my middle child, died 14 years ago today at dawn … at 5:47 am to be exact. It’s still unreal to me that one of my babies died. It just doesn’t seem possible that a child of mine would have died at the age of 17 from complications of Cystic Fibrosis a little over a year post-double-lung transplant. It still amazes me how much he accomplished in his very short life.

You know what astounds me though? People that think I should have “gotten over it” by now. Just because a certain amount of time has passed doesn’t mean the grief ends. As a parent, I’ve lost a piece of my heart. His sister and brother have lost a part of who they are. His friends have lost a piece of their childhood. His grandparents have lost a piece of their legacy.

Let me put it this way. If you lose an arm, is there a time limit that you have to “forget about it” and “get over it”? No. You learn to deal with it, but you will always and forever miss that and wish it were still a part of you. There are other illustrations I could give, but essentially it boils down to this. When someone who is greatly loved dies, you lose a piece of your heart.

  

 

 

Those that think and say that sort of thing are positively clueless … or heartless … or both.

So anyway, on this anniversary of his death, even though it’s not something I tend to “celebrate” like I still, as his mother, celebrate, for example, his birthday, I send this out to him and to all that knew him, knowing that this is the way he’d want them to remember him.

*~*~*

“I’M NOT THERE”

anonymous

Don’t stand by my grave and weep,

For I’m not there. I do not sleep.

I am a thousand winds that blow.

I am the diamond’s glint on snow.

I am the sunlight on ripened grain.

I am the gentle autumn rain.

When you awaken in the morning’s hush,

I am the swift uplifting rush

Of quiet birds in circle flight.

I am the soft stars that shine at night.

Do not stand at my grave and cry.

I am not there.

I did not die.

*~*~*

Keegan Crowley Wahler

2.29.1984 (2:30 pm) – 5.30.2001 (5:47 am)

  
This is Keegan on his Disney Make-A-Wish Cruise in February, 2001, just 3 months, almost to the day, before he died. 

*~*~*

I miss you still, baby boy. 

I always will. 

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                It’s a bizarre feeling, really.  Today would be, nominally, the birthday of my 2nd son, Keegan (at least legally).  He was born on February 29, 1984, Leap Day.  I was 29 years old and turned 30 the following July.  Keegan died in 2001 at the age of 17, almost 13 years ago.  Today would be his 30th birthday.  It seems odd to me.  I was almost 30 when he was born.  He would be 30 now, but in my brain, he is forever 17, since that is how old he was when he died.  I only had him with me for 17 years, but he stamped a major impression on my heart from the get-go, and it won’t ever fade.

*~*~*

                Keegan, I miss you.  Everyone who knew you or has heard of you misses you.  I know your spirit is around, but I miss talking with you, laughing with you, seeing you, hugging you, hearing you.  I continue to celebrate your life as you wished.  Tonight Roy and I went out to dinner for your February 28th birthday.  At midnight, we will release balloons to you, since that is the instant of your birthday.  On your March 1st birthday, I’m scheduled to be in Tahoe with your sister, Kara; your soon-to-be brother-in-law, Alex; your sister’s best friend and Maid-of-Honor-To-Be, Katrina; and your step-father, Roy.  Two of them never met you in this life … but they know you.  We have made sure of it, just as you have.  Hopefully, we will all be cake-tasting for Kara and Alex’s upcoming 4th of July wedding, knowing how much you’d have loved doing the same thing.  We’ll be going out to dinner after while up in Tahoe.  We’ll drink a toast to you and laugh and miss you still.  This is all assuming the weather holds and it’s not snowing over Echo Summit of course.  Be nice to us, Baby Boy … we want good weather!  LOL

                Happy birthday, 2nd Baby Boy and my most favorite middle child!

*~*~*

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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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easter2

 

I’m setting this up to post to my blog in advance so that while I am on my cruise, it will post on May 3, 2013 … right on schedule. 

What’s ironic about the day is … I am scheduled to be in Maui then, snorkeling.  My 2nd son (my deceased son), Keegan, loved to swim.  Keegan loved to snorkel.  We did that on his Make-A-Wish trip with Disney Cruises in 2001.  Additionally, whenever he used to order fish at a restaurant, he would loudly say “fishy fishy” (you had to be there to get it, I suppose).  It all started because once when he was quite young, he had stated that’s what he wanted for dinner and it came out louder than he’d intended, causing the entire restaurant to laugh.  So he kept it up.  That means that now … whenever Roy and I snorkel … when we see our first fish … we have to bob up, look at the other, and yell “fishy fishy” over the waves to the other.  Like I said … you had to be there to get it.  It makes us laugh anyway.

In any event, I’m posting this on May 3, 2013.  Keegan was diagnosed with Cystic Fibrosis on May 3, 1984, 29 years ago, when he was just barely 2 months old.  I originally wrote this in 2001, right after my second child, Keegan, died, but it’s appropriate to me to post it now, at least in my not-so-humble opinion, as it gives a bit more of my history, my story, my background, and the challenges my family and I have encountered over the years.

I only wish that Roy could have met Keegan face-to-face in person.  He knows him spiritually … but he never got to meet him in real life.  I am forever grateful, however, that Roy honors the memory of my son with me and allows me to continue to grieve his loss or celebrate his life/spirit whenever I need to do so.  In my opinion, that shows a true partner, a true soul-mate, and a true man.

Keegan … we miss you still and always will.

So … with that … carry on …

*~*~*

2001

“The nurses at Stanford University Medical Center see a lot of transplant patients, but they will never forget the kid with the green hair.”  Dolores Fox Ciardelli in an article that was written for a small local weekly newspaper called the “Pleasanton Pathways” wrote this.  When Keegan was born 17 years ago on February 29, 1984 (yes, Leap Day), I never ever thought this would be something closely associated to my family.  At the time he was born, I didn’t even know what Cystic Fibrosis was, let alone worry about transplant.  Transplants were those things they tried and experimented with but were only for those “other people” that had illness in their family.  I didn’t have that.  My family had always been healthy.  And green hair?  My family wasn’t into odd colored hair.

It was a long time before I had to worry about any of this.  People think now that just because Keegan received a double lung transplant at the ripe old age of 16 means that his health had been crummy since he was a baby.  He had a rough start to his life, but once he was diagnosed, things were great since we knew the problem, and the main reason that he had been diagnosed with CF very young was due to the perceptiveness of a young and competent pediatrician just out of training that had done rotation with a CF team as an intern and resident.  Let me back up though.

Keegan was born on 02-29-84.  It was an emergency cesarean because of the size of his head to my pelvis.  He was a big and well-formed baby with good weight (8-lbs. 11 oz). I have another son (Logan) that is 15½ months older than him, so I had quit work for a while to stay home with my two babies.  I was 29, almost 30.  Things were great.  The c-section, although to me seemingly awful, really was flawless. He had huge brown eyes and lots of straight blonde hair.  He was angry from the minute they pulled him out, especially since they had to suction his lungs, since he’d sucked in amniotic fluid, which is common, apparently, with c-sections.  He had minor issues at birth and went home seemingly healthy to the doctors. 

However, to me, something seemed “wrong”.  I couldn’t put my finger on it, but Keegan didn’t seem to eat properly.  Logan had always eaten like a horse and had gained weight magnificently on my breast milk.  Keegan, on the other hand, would suck a very short time and then scream and scrunch up.  His bowels seemed ok but a bit sticky.  Oh well.  It cleared, and then it seemed like any newborn on breast milk … but something still seemed wrong to me.  He didn’t eat right.  I was told that I was just being a nervous mother and not remembering how newborns could be.  This didn’t seem right to me.  Logan is only 15½ months older than he is.  I remembered too well how much Logan ate and how he had thrived on my milk.  Keegan did not.  Oh well.  He’s a different individual.  Perhaps I just need to learn his body needs and personality.

Things seemed ok when we got home, but he still didn’t eat right.  His diapers got runnier and runnier and looked like milk was just on a direct pipe from his mouth to his diaper.  I went to his 2-week-old check-up.  He’d gained no weight.  The doctor looked a bit concerned but told me that this happened on occasion and that perhaps my milk wasn’t good enough.  I listened, but this didn’t seem right to me either.  Logan was 9½ lbs. at birth.  He was 30 lbs. at 1 year.  This was on my breast milk.  How could it be that much different?   He wrote down “failure to thrive”.  Go home and try to feed him more often.  I fed.  He vomited it back up. Ok, well, we’ll try to see how much milk he takes in.  They measured.  It was a lot.  Go home.  Feed him slower but often.  He wouldn’t eat, or he’d throw up.  Ok, then, we’ll see if it seems rich enough.  It did.  Maybe it’s too rich.  It wasn’t.  Ok, then, we’ll try additives and formula.  No good.  “Failure to thrive.”

About two days before Easter, he came down with a really awful cold that his father, his brother, and I all had gotten.  We were all coughing.  So was Keegan.  No big deal.  This was a respiratory thing.  It’ll go away.  Easter.  He was feverish and sick.  I called the doctor.  I met him at his office.  They prescribed some oral antibiotics.  Easter Sunday.

We were giving him the antibiotics.  The rest of us were improving.  He wasn’t.  He was getting worse.  May 3, 1984.  I brought him to the doctor.  He sent us to the hospital for tests.  “Don’t worry.  It’ll be ok.  We just need to see what’s going on.”

May 3, 1984.  His dad came to the hospital after work.  I had gone there from the doctor’s office.  My mother was home babysitting Logan while I went to the doctor with Keegan.  Logan was sick.  My sister came to help out, and my mom came to see what was going on at the hospital.  The pediatrician was there telling me that they would be running routine tests in the morning.  It was a hot day – unseasonably hot for May.  We were at John Muir Memorial Hospital in Walnut Creek, CA.  Keegan’s dad, Mark, picked him up and gave him a kiss.  He said “God, you’re a sweaty boy.  You are really salty.”  I saw a look pass over the doctor’s face that I knew wasn’t good, but I didn’t know what it meant.  I’ve since learned not to like that look when I see it.

Anyway, he mentioned a bunch of tests they wanted to run.  I don’t recall what most of them were other than they were mundane, and I recognized them, and they didn’t seem like a big deal.  In the middle of all the things he mentioned, he also stated “cystic fibrosis”.  “What the heck is that???”  “Don’t worry about it.  It’s probably nothing.  We just want to rule everything out.  I wouldn’t bother checking medical journals.  They won’t tell you much.”

I spent the night in a chair in the hospital by my baby’s side.  His dad went home to take care of Logan and to call his other grandmother to come watch him, since I’d be at Muir with Keegan.  She came.  He went to work the next morning.  They had Keegan in a mist tent.  They had him hooked to oxygen.  They took blood.  They took stool and urine.  They did a strange little gauze test to collect sweat on his arm.  They told me to keep him in his room, because they didn’t want him to infect anyone else if he had something.  They discovered he had no bacteria growing.  That’s a good thing, they said.

The next morning (May 4, 1984) about 10AM, Tracy Trotter, our regular pediatrician, appeared in the doorway of the hospital room.  “Jill, I need to talk to you.”  Keegan was lying in a crib near me.  We were in a double room, but the little kid with the broken leg had left a bit earlier.  I was alone.  His dad was at work.  “We are very certain that Keegan has something called ‘cystic fibrosis’, but you need to take him to Children’s Hospital in Oakland.”  “What is that?”  Go there.  They’ll explain it.  “I don’t know where it is.”  They gave me directions.  Why didn’t they send him and me, since I was close to shock, in an ambulance?  I’ll never for the life of me figure that out.  I called his father, Mark, holding myself together to get through his secretary until he picked up the phone.  Tracy Trotter was standing there hanging onto me.  I was sobbing in the phone.  Mark dropped everything and said, “I’m catching BART.  Pick me up.”  I cried on Tracy Trotter’s shoulder while he attempted to console me.  I didn’t even know what CF was.  Why was I crying?  I didn’t know.  I just knew whatever it was, was a big nasty thing.  I knew that they were upset, so I knew that I should be.  I knew something big time was wrong.  Tracy told me that things would be fine.  I’d learn to be a good CF mother and Keegan would be fine.  I remember yelling … “BUT I DON’T WANT TO BE A CF MOTHER.  I REFUSE TO BE A CF MOTHER.”  (Isn’t denial great … especially when you don’t know what you are denying???)

I packed up Keegan and his stuff and walked out of the hospital.  I remember someone saying to me “oh how wonderful that you get to bring your baby home”.  I remember just staring through them.  I remember them asking if I was ok.  I wanted to scream yes and no and anything but my mouth didn’t work.  I just kept walking.

I drove to BART.  From the time I got Keegan into his car seat to when I got to BART, I have no recollection.  It’s at least a 20 – 30 minute drive.  There’s nothing.  So I parked at BART.  Mark got off at the opposite end of the station from where I parked.  I was 4 long city blocks away.  He heard me scream for him over the city traffic and the passing BART trains.    I remember watching him run from the stairway he came off of to the car in his suit and tie, carrying a briefcase.  He was at a dead run.

Now here is where it’s interesting.  I don’t recall driving to Children’s.  I don’t recall getting there.  I don’t recall parking.  I don’t recall going into the hospital.  I don’t recall checking in.  I don’t recall going up in the elevator to the 5th floor where they kept the CF children then.  I don’t recall going into the room.  I remember meeting a family that we were sharing the room with.  They had experience with CF.  (This is when they still roomed CF patients together before they realized they shouldn’t.)  But they had “experience”.  Their daughter was 7 months old.  Wow.  They’d teach me.  The other baby’s father was watching the Kentucky Derby preliminaries.  My mother and my sister were at the hospital when we arrived.  I do remember that.  I remember a doctor showing up in our room … Dr Nickerson was his name.  I didn’t like him from the word “go”, but then I wouldn’t have liked anyone at that point.  I remember him taking us to an empty conference room on the 2nd floor in the Pulmonary Department.  The Kentucky Derby preliminaries were on an overhead TV in the room.  He sat down and clinically explained CF to us.  I was a bit stunned and in shock.  I remember forcing myself to be with Keegan while they worked at getting IV’s in his arm.  It took several tries.  He screamed the whole time.  I sobbed.  They tried to drag me out.  I remember telling them … screaming at them was more the case … that this was my baby, and they weren’t going to take him anywhere without me.  It finally got in.  They told me that I didn’t have to force myself through all that.  My sister and my mother could hear the screaming baby down the hall with me yelling too.  I told them I had to force myself through it when he was an infant so that when he was older and needed his mommy as a toddler to sit there, I could do it and not fall apart or faint or whatever.  I made it.

The next day (Saturday, May 5, 1984), Dr Nickerson showed up again.  He talked to us in the room this time.  “Your baby is malnourished, dehydrated, and anemic.  Both lungs have collapsed.  We may have to do a blood transfusion.”  The Kentucky Derby was playing in the background.  “He may die.  He’s not at all well.  Why haven’t you brought him into any doctor before now?”  I nearly fell apart with that accusation.  We’d been in and out of doctors’ offices since he was born … but … I held together.  He had my child’s life in his hands.  I needed to keep it together.  I remember telling him to not do a transfusion and to only do one from someone I picked if they really had to.  This was when blood supplies could still be tainted with AIDS, because they were still figuring that out.  That’s all I’d need. 

I still can’t fathom how I got from Muir to Children’s on my own.

On Monday morning, May 7, 1984, John McQuitty took up ward duties in the hospital.  He came in and asked how I was.  He asked how Keegan was.  He asked how Logan and Mark were.  He asked if I was sleeping yet.  He told me it was ok to cry.  He told me that he wanted my input on Keegan’s well-being, because, while I might not understand CF yet, I lived with Keegan 24 hours a day and would know him as an individual better than any doctor would.  He listened to me answer questions.  He could tell I was holding myself together.  He could tell I was “staying strong”, because that’s the way I was taught to handle any challenge in life.  “Don’t show your weaknesses.  Don’t cry.  Don’t show your dirty laundry.”  He told me it was ok to cry.  He listened to me.  John McQuitty saved my sanity.

The Kentucky Derby.  Easter.  They still make my stomach and my head do weird flips.  Just the topic can make my stomach clutch up.  Only a CF parent or those that have been through hearing that they themselves or a loved one have CF (or any other major life-changing, life-threatening illness) will understand that certain days and certain events will always remind them of when they heard.  The Kentucky Derby.  Easter.  It’s odd that good days like those can make my stomach clutch and turn inside out.

 

 

 

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