DisneyWorld, Tinkerbell, and a green Lug bag

Who can say for certain

                                                                     Maybe you’re still here

I feel you all around me

Your memory’s so clear

Disneyworld - Tomorrow, we leave for Orlando for a short family get-together with Ben and family. My mom will get to meet Libby for the first time. This will be the first time that Ben has been able to see his grandmother and aunts since Jacob died. Wichita Falls, Texas is on the other side of the earth. Anyway, we are looking forward to being together. Be prepared for lots of cheesy pictures.

 

One of the things we are going to do is go to DisneyHell, oops, I meant DisneyWorld. I know, I know, it will be fun and all that, but it will be SO HOT!!!! If you have never been to Disney in the summer, then you know what I am talking about. Besides, I grew up in Orlando and was a teenager when Disney opened, so I get to complain. This was when it didn’t cost the price of your monthly house payment for a family to spend the day there…literally.

I have found myself getting very weepy about this trip. Part of the reason is that my mom is not in good health. A lot of emotions are swirling around here. Better not go there.

 

 

Thanksgiving 2008, with Grandmother and the Aunts.

Another reason for the tears is that DisneyWorld provided some wonderful memories for Jacob, not only as a child, but also as a college student. When he was in the hospital, after his second heart transplant, he asked his Aunt Carol if he could bring some friends down and stay at her house in Orlando. Don’t be fooled and think he was being sweet – he just wanted a free place for he and his friends to stay while they went to DisneyWorld. Of course, she said yes. He had such a good time, especially since he showed Disney proof that he had had a heart transplant, so he and his friends did not have to wait in line at all. And, they went in March so they did not have to experience DisneyHell. Here’s a picture of Jacob and his friends.

 

 Scott, Val, Sarah, Hannah, and Jacob at Disney. He does not have a dorky haircut - he is wearing his mouse ears. Sorry for the poor quality. I just took a picture of a picture that we had.

Deep in the stillness

I can hear you speak

You’re still an inspiration

Can it be

That you are my forever love

And are you watching over me

From up above

 

Tinkerbell - Jacob always loved to go to souvenir shops or gift shops. It didn’t matter where we would go; he had to check out the gift shop. When we were living in various hospitals, if he was able to get out of his room, then we would always have to visit the gift shop. It was the highlight of our day. Also, if anyone in our family ever got to go on a trip without the rest of the family, you better be bringing back some souvenirs for those of us left behind.

So, when Jacob made his Disney trip, he brought me back a souvenir. It is a little pin of Tinkerbelle. Jacob was in a community theater production of “Peter Pan” when he was younger, so this character was very special to us. I have kept this pin in my dresser drawer, not sure of what to do with it. I was packing and missing him very much this week. It still just doesn’t seem real to be going on a family vacation and one member of our family will not be there. I decided to put the pin on a straw hat that I am wearing to Disney. Ben and Katie are a little embarrassed that I am wearing it, but I have a good excuse….I do not need any more sun damage on my face. Did I tell you I grew up in Florida – for anyone other Floridians out there that are my age, you’ll remember the days of sunbathing on the roof of your house while soaking your skin with baby oil.

I keep getting distracted. Here’s a picture of the pin on my very stylish hat. I can’t wait to show pictures of me actually wearing it. I really can’t wait to embarrass my children wearing a hat. If you think it's fun embarrassing teen-agers, wait until you have adult children.

Fly me up to where you are

Beyond the distant star

I wish upon tonight

To see you smile

If only for a while to know you're there

A breath aways not far to where you are.

 

The green, Lug bag- I think I may have written about this before. On June 12, 2009, I was enjoying my first week of summer vacation. I met my friend, Gayle, and Katie for lunch. Afterwards, Gayle and I went shopping – something we do best. I am a really good shopper, if anyone ever needs any help. We went to this cute little place that had these great totes. Besides shoes and yarn, I also collect tote bags. I can always find an excuse to buy another tote bag – if nothing else but to carry my shoes and yarn in.

Anyway, I saw this great green overnight tote bag. It is a Lug bag and it has a zillion different pockets in it, plus it was just dadgum cute. I bought it. I came home and it was just a few hours later that Jacob came home and things went downhill from there. He died that Sunday.

That green bag took on some sort of ominous presence in my closet. Every time I looked at it, it reminded me of what life was life before Jacob died. It was sort of the dividing line – before and after Jake died. I stuck it in a closet in another bedroom and couldn’t use it for several years. I have tried a few times to use it, but I discovered I hated all those stupid pockets and why did I chose that nasty shade of green? It was just an irritant to me, but I couldn’t get rid of it.

So, you guessed it. I am taking the green Lug bag. I have carefully packed all the zillion pockets. I just hope I can remember what each of those pockets have in them. 

 

I didn't think anyone really wanted to see pictures of the zillion pockets inside. I'm hoping the company that makes Lug bags will see this and give me a check for my endorsement.

 

I know that my life will forever be defined by “before Jacob died" and "after Jacob died." It was an event that was and is just that traumatic. But, life does move on, whether you can handle it or not. That silly green bag wasn't to blame, nor was the fact that I let him go on a college yearbook retreat when deep down, I knew he wasn't feeling good. He kept telling me he was fine, but I knew something wasn't right. Even though the new transplant nurse told me that an extra dose of Lasix would help with the fluid, I knew I should have insisted on letting me talk to someone else.  I was trying so hard to not worry  every time he retained fluid. I really was trying to let him be independent. I was also so, so tired of just always being on hyper-alert. He was 21 and his doctors and nurses had kept telling me I needed to let him assume control of his health. Well, that didn't work so well.

I'll wrap this up. That green bag was something I would look at and think, "if only I hadn't gone shopping and enjoyed my day. I should have gone and brought him home from that retreat. I should have, I should have, I should have." I try not to let the "should haves" consume my thoughts, because I know that I did the best I could at that time; however, the thoughts are there and I just have to accept them and know that they will come out occasionally for me to deal with. It is what it is.

I'll close with one of my absolute favorite pictures of my three kids. I know I have written mostly about Jacob, but their time is coming, soon. They are going to hate me, but oh, how I love them.

Ben, Katie, and Jacob

Christmas 2008

Believe it or not, they were actually having fun together when this picture was taken.

 

Are you gently sleeping

Here inside my dream

And isn't faith believing

All power can't be seen

As my heart holds you

Just one beat away

I cherish all you gave me

Everyday

 

Cause you are mine

Forever love

Watching me from up above

And I believe that angels breathe

And that love will love on

And never leave

Fly me up to where you are

Beyond a distant star

I wish upon tonight

To see you smile

If only for awhile to know you're there

A breath aways not far to where you are

I know you're there
A breath away's not far to where you are

(Lyrics: "To Where You Are")

 



Jacob with Tucker. Oh, how he would have loved to have known Libby.

 

 

 



Things Change When a Phone Rings

by Richard Edfeldt

OK, the prodding, cajoling, needling, pushing, shoving, pleading, and encouraging have had its effect. I will TRY to become a regular contributor to this blog.  Until I get as creative as Karen I will recount some of Jacob’s Journey and its impact on me.

I won’t start at the beginning of his remarkable life.  I guess that will be for another time. But I want to recall the first time I remember taking a phone call that changed the trajectory of my day and my future. 

I was at Camp Cherokee in the backwoods eastern Tennessee for our church’s youth camp. I worked with the kitchen crew as a cook (I prefer that title over dishwasher), but my real job was to keep an eye on Jacob in case of an emergency.  He always enjoyed going to these camps. He felt ‘normal’. And I always enjoyed watching him be ‘normal’.

The only phone to the camp was in the kitchen and it was only to be used for important calls and emergencies. It was a Wednesday afternoon, when we were beginning to prepare dinner when the phone rang … and my life took another drastic turn.

It was Karen on the other end and, even through the static on the line and noise in the kitchen, I could tell something was terribly wrong. In a quivering voice, Karen shared that she had received a call from Jacob’s cardiac doctor with the results of some tests that were run on him the week before to determine why he had been gaining weight and been declining in his energy level. This had been a source of concern for over a year. The doctors, at first, attributed it to the typical adolescence transition of life. Then they began to ‘fuss’ at us for allowing him to eat too much junk food and not getting enough exercise. We countered by asserting that he didn’t eat like your typical teenager but ate more like a bird. Finally, the doctor decided to test for one more possibility …. and it was discovered he was suffering from Protein Losing Enteropathy (PLE).

 I won’t try to explain the complexities of this disease here. I will point you to another blog site that I created when this was discovered. I titled it, “Jacob’s Journey” and it was the beginning of my writing about our struggles and, well, journey, into the valley of shadows. I used that blog to explain what Jacob was facing until we discovered the Care Pages. You can read those entries if you want to be reminded of or familiarize yourself with our journey. Here’s the link:

http://jacobsjourney.blogspot.com/2004/12/entry-date-july-26-2004.html

After hanging up the phone, I was in a state of shock. I quickly excused myself from my duties and sought out a private and quiet place (which is very hard to find at a youth camp). 

It may seem strange but at that moment, really for the first time in Jacob’s life, I had a foreboding sense that we may lose him.  Obviously, in every one of his four major open heart surgeries I had a deep concern for their outcome. But I had approached each surgery as a competition, calling on my sports experiences of facing overwhelming odds in order to gain a victory. I know that may sound silly or downright stupid to you who read this. After all, it wasn’t me going under the knife in a life saving effort. I actually had no control over the outcome of each surgery. But there was a sense within me that I had done all I could prepare myself, Jacob, and my family for what was to come. The rest came to a childlike faith in God.  And we had ‘won’ every time.

But on that summer afternoon in the hills of Tennessee I had been totally blindsided. I was not prepared to consider that within six months we would be facing the ominous specter of a heart transplant. Those two words had shaken me and my confidence to the core.

As I returned to my duties, it must have been obvious that I was devastated. My colleagues asked what was wrong; was Karen OK; had Katie or Ben been hurt. I tried to explain and I tried to avoid seeing Jacob because I did not want him to see me in this broken condition. I had always tried to be the strong one for him; to be the steadying force when he needed reassurance. But at that moment, it had all disappeared. 

My colleagues rallied around me, offering prayers and words of encouragement. I remember distinctly going out on Glen Chappelear’s ski boat with the kitchen crew and explaining what I had learned that afternoon. They offered up a sweet time of prayer with the beauty of Lake Oconee as a backdrop.  It seems incongruous to say but I felt close to God and shut off from Him at the same time as we rocked gently in the boat.

The rest of the week was a blur. I vaguely remember Myra Woods and Mary Wishon bringing Karen to the camp. Honestly I don’t remember a word that was said between us. I don’t remember what she did when she saw Jacob and what she said to him. I do remember that we did not tell him the test results because we wanted him to enjoy the week. And, boy did he! He finished the week by receiving the Boys’ Camper of the Week award.

I’ll stop this blog edition for now. Sorry that it’s so long. My plan is to share some of the recollections from our journey through Jacob’s transplants. I will also share other assorted things that I have learned along the way. I don’t know how often I will enter a posting but I invite to join me in this new journey.

Yard Heroes

I have a complicated relationship with yard work. As a kid growing up in Florida, I hated doing it. It just seemed pointless. You mow, rake, weed and then the next weekend, you have to do it again. All of my friends spent their Saturdays at the beach, but the Blackburn kids did yard-duty and housework.

Every house that Richard and I have lived in has had a backyard that could substitute as a ball field. It was great for the kids to play in, but a killer to mow. It wasn't until the kids came along that I discovered that yard work had some redeeming qualities. Every Saturday, Richard would mow the yard while the kids and I raked and weeded. Of course, this meant that I chased after the kids and occasionally a weed might get pulled. One day, I suggested that I mow and I was hooked. I discovered that when you mowed, you got at least one hour to yourself! You couldn't be on kid-duty if you were operating the lawn mower.  After that, Richard and I would argue over who "got" to mow.

As the kids grew into able-mowing teenagers, they assumed this job. While I sort of missed it, I knew that they had to assume this chore. Trust me, they would have gladly let me mow for them, but I couldn't do this to them. None of them just loved it and to this day, yard work is not high on their list of fun things to do.

Since the kids took over the yard mowing, Richard and I had time to actually do something called gardening. As the years have passed by, we (mostly I) have discovered how enjoyable it is to plant something and watch it grow.





Lots of different kinds of annuals right outside our kitchen window.

I even discovered that I had a pale green thumb.  I have a lot to learn, but I do find it very therapeutic to be outside playing in the dirt. It is also one of the times that I don't feel quite so angry at God. I find contentment tending my flowers. I also love getting plants from my first graders and thinking of them when I am taking care of these gifts.



Hydrangeas - my favorite outdoor flower.

One of the things I love about hydrangeas is that you can change the shade and color by changing the acidity of the soil. I'm sure there is a life lesson here, but I'll save that for another time.

So, why did I call this post yard heroes? I'll quit posting flower pictures and explain.....

Yesterday, I had an unexpected visit from a sweet couple from my childhood.  He is 81 and has Alzheimer's. She is 80 and is now the caretaker in every facet of their life. As we were saying our goodbyes, she told me that she had just learned how to do something new. She said that the other day, for the first time ever in her life, she mowed the lawn! She had never had to worry about this before, but now, as their lives had irrevocably changed, she had to assume this responsibly.

My friend, Carolyn.....yard hero.

I could kick myself for not taking a picture of her, though she probably wouldn't have wanted me to post her picture.

The next yard hero is my son, Ben. He likes to do yard work about as much as his Uncle Ben. Give him a ballgame or a book, but please don't make him do yard work.

The few days after Jacob died were a blur of activities - funeral arrangements, picking out a casket, figuring out what clothes to take to the funeral home for Jacob to be buried in....... all those things that no mother should ever have to do. It was summertime, so the yard was in desperate need of mowing. It was the last thing we even thought of doing. We were at home, trying to get ready for family coming in. I heard a noise outside and looked out the window. There was my son, Ben, mowing the yard with his son, Tucker, "helping" him. It was a priceless moment and one I think of now when I mow. Here's a picture:



Ben and Tucker mowing the lawn - June 16th, 2009

My son, Ben, ....yard hero.

Two more to go.

Third yard hero - my mom and sisters. I have a lot to say about these amazing women who have influenced me more than anyone else in my life. I'll save that for later. All three of them love to garden and have beautiful yards. I am a novice compared to them.  My mom taught me how to grow and love African violets. I currently have ten different violets. I hate to sound arrogant, but I seem to have the touch. I have to believe there's a genetic component here.  I have to restrain myself from propagating more - don't you love that word? If you don't know what it means, look it up.

Instead of posting endless pictures of my African violets, I thought I would post, instead, my favorite picture of these yard heroes, or should it be, heroines?

Mother's Day, 2013

Kathy Blackburn, Mary Nan Carroll, Carol Blackburn

Last yard hero, for now........Richard Edfeldt.

 Richard sort of tolerates doing yard work, but does not just love it. I secretly fantasize about him being like the man on the Scott's Fertilizer commercial who knows everything there is about lawn and garden care. Every time I drag him to Pike's Nursery, I think he will catch that garden fever and just become obsessed with what perennials and annuals to plant. I keep waiting for him to get that same high I get every spring when it is time to start planning what flowers to plant. I have bought him lots of books and magazines on gardening, and funny, he was never very excited about getting them.

 I now get it. He takes care of our yard because it is part of our home, but he would much rather spend time  with his children, play with his grandchildren, play golf with friends, play on at least four fantasy baseball teams (this I don't get), and be with me, even if it does mean doing yard work.

 I used to wish he would be one of those husbands who determined his self-worth by the appearance of his yard, but wouldn't you know, he was, and is a lot deeper than that. So here is my last picture of the ultimate yard hero, Richard Edfeldt.

Richard is supposed to be spraying weeds around the hydrangea. The Round-Up has gone to his head.

He still makes me laugh everyday. 









A New Turn - and maybe new shoes

So, many people have asked when Richard and I (mainly Richard) are going to write a book. Richard does have a flair for writing, but sometimes he needs to be prodded a little bit. I have a serious shoe and yarn addiction and somewhere in my future, I see a vintage Airstream. I have decided it is time to start prodding and so, I am going change the focus of this little blog. When I started it, I was writing to help me deal with the death of my son. As I posted earlier, writing did not prove to be very helpful. There are so many painful memories of watching Jacob and our family deal with his illness. Some of these I am just not ready to share, yet. Perhaps one day. Instead, I decided to just start writing. I teach children to write and I tell them everyday.... "writer's write everyday." So that's what I am going to do - write. I also tell my students that writers write about what they know. I am going to follow my own words and do just that - write about me, my family and friends, my grief journey, my yarn and shoe addictions, my love for the North Carolina mountains, my somewhat complicated relationship with God, etc.

I have also decided to invite Richard to start writing on this blog. You see, for those of you who don't know Richard, he can be a perfectionist in anything related to technology. He will literally spend HOURS finding the right picture, font, anything related to the graphics of a piece before he will write. I, on the other hand, don't really care. I find worrying about that stuff is paralyzing to the creative process. So, in my effort to get him writing and publishing a book that will make LOTS of money, I am going to assume all responsibility for how unattractive this blog looks. I just want him to write.

In the days before Facebook, we had a Carepage site that we gave updates about Jacob's health on. Richard has some beautiful things written on there. He has also written some other things that he is saving for that book. I figured that in order for that book to happen, he needs to be prodded to get it out there.

So......to the few people that actually take time to read this little blog, I am asking you to leave a comment to Richard. You can beg, plead, cajole, bribe - ANYTHING to get him to start writing. I'll figure out how to get his words into a book. My mom has even said that she hopes he will write a book before she dies. Now, for those of you who don't know my mom, she is 83 years-old and is not in the best of health - (not to pressure you or anything, honey).

Also, if you are reading this and aren't signed in, puleeze consider signing in. I just want to see who is actually reading this stuff. I also want to see your picture on the side. I am so fortunate to have friends from the many places we have lived and I want to keep up with you all.

Okay, I have lots more to say, but the dogs are dragging their leashes around, so I guess I better go walk. There is no prettier place to walk than the mountains of North Carolina. As the t-shirts and coffee mugs say, "The mountains are calling, and I must go." It was actually John Muir, for you perfectionists out there.

 

This picture was taken of Richard and me on the bridge of Tallulah Gorge in Georgia. What you don't know is that I am not particularly fond of swinging bridges and I am faking a smile and hanging on to the rails for dear life.

This is my granddog "Elphie." She is spending the week with her Mimi in the mountains. Elphie is named after one of the main characters, Elphaba, from the play "Wicked."

Here I am again, facing another anniversary of Jacob's death. I haven't written on this blog in quite awhile, because frankly, it is just too hard. Writing is not therapeutic for me. When I start writing, I am taken back to some very difficult days that are just too hard to revisit. Tomorrow, we will spend the day with friends who were very close to Jacob. Katie will be coming up to spend the weekend with us. The grief is still just as deep and never leaves me. There are so many memories that will never be made. There are times that I have to isolate myself from others who will have the chance to make these memories with their children. It is very hard, almost impossible, to attend bridal showers, weddings, and baby showers of others. This seems to be a trigger for me and I have learned it is best to avoid them. So, as I said before, writing is not therapeutic. As I write now, the tears are flowing and I know from experience, they won't stop for a long time. It is time to go for a walk in the mountains and listen to some music from "Wicked" and "Les Mis" and other Broadway musicals. I'll sing along and know that Jacob is singing with me. I love you son and as always, your life will always be a handprint on my heart. Mom