November 4, 2004

Today is Nolan's birthday.  He would have been eleven.  Instead, he will forever be 9 years old....

I miss him so much!  I know that he is well, happy, healthy and strong.  I know he is in heaven with Jesus and all those who love God.....I know he is meeting the children he became acquainted with here on earth and I'm sure he recognizes them. 
Most especially, I'm thinking of Cheyenne Fiveash, whose battle ended on Oct. 30.   While we can all rejoice for her, we're also missing that young woman so very much.  What a tremendous impact she and her family have had on so many people all over the world!
Nolan, Cheyenne, Maddie, Jake, Celeste, Julia, Zach, Tara, Isaac, Paulina, and all the children whose lives have been cut short by this disgusting beast of a pontine glioma.....you are in our hearts forever.

Continuing with this journal has been difficult over the past year.  It was born in an effort to keep our friends and family updated on Nolan's progress.  How much he loved getting the messages in the guestbook!  It was one of the first things he'd ask about (right after, "what's for breakfast?"  Decadron, you know....)

Thank you to all who have signed the book.....thank you for the outpouring of love, compassion, and especially, your prayers.  They've given me strength and courage when I've needed it most.

September 13, 2004

So many other children we've met through the internet have also had their lives cut short from this horrid beast of a tumor.  I don't understand how "they" can consider a pontine glioma to be rare when so many children have been stricken! 
Please pray for Cheyenne Fiveash; she was diagnosed last July and up until recently she was doing very well and living symptom-free, for the most part.   A few months ago the tumor became active and Miss Cheyenne has been bravely enduring chemotherapy treatments and just had surgery to relieve pressure in the brain.  Please pray that God will grant her a miraculous healing here on earth!  And please pray for the families that are grieving for their youngsters.  Links are found on the "Kids with BSG" page
I also hope you will stop by the Tumbleweed page and lend your support to this wonderful organization, which is in honor of precious Julia Levy.

Thank you and God bless!

August 24, 2004

A whole year has passed since I've last seen Nolan.  God continues to give me comfort, peace, and hope, and so many of you have been reaching out in love and support.  I am deeply thankful.
I just miss that little boy so very much!  I've been letting myself cry and grieve, because it's impossible NOT to.  But be assured that we are all "okay." 
Lisa and Tim are working and doing well with their jobs.  Tim will be all caught up with school by the end of the semester, and then he will graduate.
Kevin starts 8th grade next Monday.  He is determined to work hard this year.  He's also signed up for basketball and "fall ball," as well as rejoining the student leadership team at church.

No matter where I go, or what I do, my Nolan is always with me.  His sweet face, with those big green eyes and flashing dimples are always before me.  I KNOW I will be with him again one day. 

 Hey Nolie-Polie!  I love you so much, little boy!  I know you're happy and healthy and having a wonderful time with Jesus and with all our dear friends and family in heaven!  I can't wait to see you again.  But I know you are safe, and that makes me happy!

I love you little boy.  Forever and alway.  Mommy

 

July 28, 2004

More than 11 months have now passed since my little boy breathed his last.  Soon it will be a whole year....and that just doesn't seem possible!!
On the other hand, it seems forever since I've felt his arms wrapped around me in a hug....or kissed the top of his head....or looked into his big green eyes....or seen the flash of his dimples.
He lost those to the cushingoid features of the decadron.

I miss Nolan more than words can possibly say.  But I'm so glad his suffering has ended and that nothing can possibly hurt him again. 

Sadly, there have been a number of children who have also lost their lives to cancer this past year.  Most of the children on Nolan's page are now gone.  And Cheyenne and Celeste are both struggling with the disease.  Please keep them in your prayers, as well as the families whose children are no longer here.

In the meantime, life for the rest of us, moves on.  I am still waiting to be placed in an externship, but I'm rather glad of the delay because it enabled me to host a girl from China for an American homestay program.  Arabella has been quite entertaining for me and Kevin.  As a bonus, she shares the same birthday as Nolan - Nov. 4!  But not the same age; she is 14.  Anyway, Kevin and I are having fun getting to know her and her classmates.  Tomorrow we will go with them on their excursion to Marine World.
The group leaves on August 7, and the following week I hope to visit Haley (www.caringbridge.org/nv/haley) whose Mom and I became acquainted while both our kids were receiving Burzynski's antineoplaston treatments.  Happily, Haley's brain tumor was misdiagnosed, her tumor is classified as benign and slow growing!  Please stop by her site and leave a message in her guestbook.   It's always so encouraging to receive them.
I'm so grateful for family and friends who continue to reach out and offer love and support.   Nolan's school dedicated their yearbook to him and had his classmates and the office staff sign it.  You bet I treasure this!  Thank you, Miss Penny, for the loan of the DVD's as well.
God bless you all! 

 

June 24, 2004

The 10-month anniversary of Nolan's death is today....and so there is a tinge of sadness.  But my dear friend from Houston (the one who housed me and Nolan during his treatments) is here with her husband for his business trip and we get to spend the day together, which will definitely help. 

The classroom portion of my medical assistant course ended last night, and I was pleased to learn that I got an "A."   We had a great instructor; during her lectures she gave us great tips on ways to remember all the information...plus she'd always stay late after class to help us if we needed.  Without that, I doubt I would have fully understood the doseage calculation/conversion formulas!  And now I need to be placed into an externship in order to get the vital 'hands-on' training.

Kevin started summer school and he's not very happy with me for signing him up.  But as his report card reflected, he NEEDS the extra help in Algebra.  Hopefully he'll do much better when he starts 8th grade.

The older two are busy with their lives.  Lisa is working full time, and Tim is taking two computer classes at the junior college.  He's also job hunting and would love to find something computer related.

Hi Nolan....yesterday Alyssa found an old photo of you that she gave to me.  You were outside wearing your Mickey Mouse pajama top, with that quirky little smile on your face!  Thanks for all the wonderful memories you left for us...we sure do miss you, though, and look forward to seeing you again soon!!  I love you, baby boy.

May 24, 2004

Nine months have now passed since my precious son was called home.   Although I am adjusting to his absence, I miss him more than ever.  Lately I've been having painful flashbacks of the day he was diagnosed and the horror that came with it.   His last hours in the hospital are also a very painful memory that I shrink away from.  I much prefer to remember him as the healthy, mischevious, loving little boy he truly was.

In my medical assisting class we are now giving/getting injections.  As I drew the "medication" from the vial, it reminded me of the times I would fill the syringe with decadron for Nolan's IV push....and my eyes filled with tears.  But being in a class setting I had to swallow the lump in my throat and focus on the task at hand....and now it is routine.  Amazing what you can get used to, when you have no choice.

Tim and Kevin are finishing up their last few weeks of school, but they will both be attending summer school classes.  Kevin isn't too thrilled, but he definitely needs some extra help with algebra.  The boys are doing well, and looking forward to summer (despite the six weeks of classes!)
Last Friday I saw a little boy at the park who was around six years old.  He reminded me so much of Nolan at that age!!!  My heart was yearning to hug that little boy, but of course that couldn't happen.  I just hope his mama knows what a precious gift she has in her son. 
I'm sure that she does.
Thank you to all who continue to sign the guestbook and keep us in your prayers!  It means so much to me.

April 15, 2004

I hope you all had a very blessed Easter celebration!  Ours was nice....the children's Sunday School Easter program went very well.  Kevin hung out with me and helped with the kidlets.  We were anticipating a staggering crowd, but ended up with a managable number (21).  Afterward, we rushed home to get the ham in the oven and finish getting ready for our guests.  I was so glad my mother was able to come!  Last October she broke her shin bone in 3 places and it wasn't healing properly, so she had surgery just last week.  But she seems to be on the mend, and was able to enjoy the dinner.  My sister Tess was also able to come, and my other sister Peggy and her family visited just the day before.  Only my youngest sister Dagmar and her family were missing; but we held them in our thoughts as they celebrated in Arizona.

I am so blessed to have my best friend Lola living right across the street from me.  She and her husband and daughter (who is Kevin's very best friend) were able to join us for dinner also.  It was great to have both extensions in the table and all eight chairs occupied!  But since I ususally cook for 12 when we have holiday dinners here, we had a TON of leftovers.

The next morning we got up bright and early:  Disneyland!!  We went with Lola and Chelsea, and had a great mini vacation. 
The last time we were at Disneyland was for Nolan's 9th birthday, just a week before his diagnosis.  He had been having headaches for a while, and woke up with one every morning while we were there.  But I thought he was experiencing the same migraines his sister always had and wasn't alarmed....just gave him a tylenol and massaged his head until he felt better.

There were times during Disneyland when I really had to swallow the lumps in my throat as I remembered my boy.  Several times Kevin whispered to me, "I really miss Nolan."  I usually just hugged him and whispered back, "me too," but once I asked him if his heart was aching like mine was.  He said, "yeah...but I am trying not to think about it or I will start crying."

It's just really hard sometimes, you know?
~~~~~~~~~~~~~~~
I almost forgot:  my sister Tess asked me to post this again:

Please, don't ask me
Author: Rita Moran

Please, don't ask me if I'm over it yet
I'll never be over it
Please, don't tell me she's in a better place
She isn't with me
Please, don't say at least she isn't suffering
I haven't come to terms with why she had to suffer at all
Please, don't tell me you know how I feel
Unless you have lost a child
Please, don't ask me if I feel better
Bereavement isn't a condition that clears up
Please, don't tell me at least you had her for so many years
What year would you choose for your child to die?
Please, don't tell me God never gives us more than we can bear
Please, just tell me you are sorry
Please, just say you remember my child, if you do
Please, just let me talk about my child
Please, mention my child's name
Please, just let me cry.

Palm Sunday, April 4

Every day I tell myself to update this site, but I miss being able to write about what is going on with Nolan.  This time last year we were in Houston, Texas, undergoing those antineoplaston treatments.  Even though the treatments are not something I would choose again, I did receive the huge blessing of renewing a friendship with my wonderful friend Lauri Jasper and her beautiful daughters (and awesome husband).  They have been a continued source of support and encouragement to me this past year, and I know the bonds we share will carry through to eternity.

Our church had it's annual Palm Processional today, in which all the grade-schoolers marched through the sanctuary proudly waving their fronds.  Of course I was sad that Nolan wasn't among them.  But the tears in my eyes weren't just sadness; there is something so moving in watching the children.  I was very proud of my third-graders!
School is going well.  I found some unused medical supplies such as saline syringes and cannula caps that I was able to give to the instructor.  She said she can use them for her pharmacy classes.  We're currently on a two-week "Spring Break" but will be dealing with mid-terms as soon as we return.  I'm very interested in all we are learning, but it is frustrating to be rushed through so quickly!  We went from "Assisting with minor surgery" to "Electrical Conduction System of the Heart" in one week! 

I've been slowly packing up Nolan's things.  A lot of his toys and clothes I am passing on to my nephews, which takes some of the sting out of it.  Of course there are certain items that I will keep forever!  But they all fit into one box (which is good as my house has very little storage space!)  I had a yard sale yesterday, and the bunkbeds that Kevin and Nolan slept in were sold.  I thought I would feel a pang at seeing them being carted off, but actually it was more painful to see Nolan's bed and dresser so empty.  It makes me happier to think of other children using them now.
Nolan's siblings are all doing well.  Lisa and Tim are both working, and Tim is still finishing up with his high school doing independent study.  He was so far behind that he probably won't be done till December, but at least he is carrying a good GPA now.  Kevin is trying harder to improve his GPA and I think the effort is paying off.  He still has difficulty focusing at times, but both his dad and I are using different "motivational tactics" to encourage him.
So I guess that wraps it up for now...I still have moments of supreme sadness and an aching longing for my boy.  But that is too be expected, I suppose.  I am thankful for the love and friendships that I have been given along the way.  May God bless you all!

Saturday, March 13

More than six months have passed since my baby left this earth.  Soon it will be seven.  It truly takes my breath away.  But I see him where ever I go, every time I turn around.  My little boy.  I miss you so much, Nolie Polie.   I miss you so very much.

 

Thursday, Feb. 12

Although the weeks are flying by, each day seems very long in and of itself.  I started back to work at the day spa, very part time...only about 8 to 10 hours a week.  I also enrolled in a medical assistant course which started last week.  The course only lasts 12 weeks, but there is a 200-hour externship, so until I am placed in a clinic I won't know how long it will take to complete.  Hopefully I will be ready for employment by July.  Since I have learned so much through Nolan's ordeal, I feel confident about my ability to do well in this field.  However, there is a LOT of homework involved!!  Every week we are assigned two textbook/workbook chapters, which take hours and hours to complete.  I sure have a renewed respect for college students!

Emotionally, things have been difficult lately.  Not only do I miss my Nolan more and more with each passing day, but my oldest son unexpectedly decided to move in with his dad.  This has caused me great sadness and also financial difficulties, as my support money has been drastically reduced.  However, God is faithful and I KNOW he will provide a way for me to keep my house.

Kevin is missing his little brother, too.  We do talk about Nolan every day, and he reminisces about the good times they shared.  But his grief overwhelms him at times.  He struggles with schoolwork, and when his brother moved out, Kevin commented that it felt as though Tim had died (even though he will see his brother everytime he visits his dad.)  Also, he literally fell apart when he accidentally broke a little figurine I have.  It is the Willow Tree "brothers," and it does represent Kevin with Nolan.  But I glued it back together and you can't even see where the head came off anymore.

Thank you all for your continued e-mail and guestbook messages, and most especially, for your ongoing prayers!  Whenever I am at my lowest point, I can feel the power of those prayers lifting me back up.  I love you all!

Tuesday, January 20

Last Sunday, I shared Nolan's story with my third-grade Sunday School class.  The lesson was on the Good Samaritan, and I told the kids about the way Nolan's classmates treated him with kindness and respect, friendship and affection despite the drastic changes that were taking place in his appearance and abilities.   The way they reached out to Nolan made them all modern day, junior "Good Samaritans." 

I love children.  I always have, but since my little boy's death they have become even more dear to me.    The children on this websites "Kids with BSG" page are especially precious and beloved.  I haven't separately categorized the kids who are still fighting this battle with the ones who are now in heaven.  Each one of them holds such a special place in my heart!  I hope everyone who still reads this page visits those websites and joins me in praying.   Pray for the families of the kids in heaven, and pray for the miraculous earthly healing of those still fighting.   Each little life was wonderfully and beautifully formed by God, and those sweethearts add so much joy and love to the world! 
~~~~~~~~~

In 4 days it will be exactly 5 months since Nolan's death.  Sometimes it seems much longer.  And other times it doesn't seem to have truly registered.  I find myself waiting for him to come back.  I know that he wouldn't want to come back, even if he could.  But it sometimes seems as if he is staying at my sister's house, playing with his cousins, and that soon....soon....SOON he will be walking through the door and back into my arms.

I miss Nolan so very much.

Monday, January 12, 2004

My updates continue to be sporadic, but I so appreciate all the kind, encouraging notes being left in the guestbook!   If you are reading this, Sandy (mother of Lauren), please let me know how to contact you.  Thanks!

Kevin continues to see the grief counselor who is helping him find ways to improve his grades.  I have also started going to a GriefShare program at our church.  It is a small, closed group, and I think it will be beneficial.  I'm willing to give it a try, at least.

Last night as I was trying to fall asleep, I kept reminiscing about Nolan; in particular our last months together.  The way his nose would scrunch up when he and I shared a silly joke.  The way he'd call me his 'pretty-diddy Mommy.'   The way his eyes would lock onto mine as he would answer the questions of his visitors.  The plans we'd make for the future....

Hey Nolie Polie!  I miss you so much.  It helps me to stop being sad when I think of how happy and healthy you are now.  I know we will be together again someday soon, and I can't wait until I can give you a great big hug once more!  Thank you, sweet Nolan, for all the wonderful memories you have created for me.  I'll cherish them always and forever, and I love you more than words can ever say. 

Sunday, Dec 28

It's been a while since I updated the journal...sometimes the realization of Nolan's death hits me so hard that I can't even begin to formulate the words in my mind, let alone try to type them out.   I do have absolute peace, but it doesn't always lessen the pain of MISSING him so very much.

The grief counselor expressed surprise that I had put up the tree and decorated the house...but I know that I (and the boys) would have felt worse if no holiday decor were present.     My favorite decoration is the Nativity scene, of course, and this year I was given the Willow Tree set, which delights me every time I look at it. 

My parents and my sister Tess joined the boys' and me on Christmas Eve.  First we went to the special Christmas program at our church.  It was absolutely beautiful!  Then we all gathered at my house for a buffet supper and gift exchange.   I used the silver and gold theme, which is what Nolan had requested back in August, so it seemed that he really was a part of this year's celebration (of course he is always in our hearts and part of our every day lives, too). 

Please remember to pray for the children who are still struggling with this horrible beast of a braintumor, as well as for the families whose children have died.  Some days your prayers are the only thing that gets us through!
God bless you all.

Wednesday, Dec 3

Once again, I thank you all for the continued guestbook messages and e-mail.  I appreciate them all so much.
It was nice to get away for Thanksgiving.    Kevin got sick a few days before we left and had a fever and upset stomach all the way to Texas!   Fortunately our friends didn't mind the germs and wanted us to come anyway. I ended up taking Kevin to the emergency room thinking he might have strep, and they did perscribe amoxicillan. But since his fever and symptoms continued for more than 24 hours after the meds were started, I'm thinkin' it was the old-fashioned flu after all.

Anyway, he eventually recovered and was able to enjoy the feast.

Kevin saw the grief counselor again this week.  He's still dealing with the pain of the divorce and his dad's remarriage, which unfortunately co-incided with Nolan's illness.  Therefore the counselor wants to help him sort out those feelings before moving on to the loss of his brother.

 

As I expected, my heart was wrenched to see our friends' house, with it's memories of Nolan....but being with that family did a lot to distract me from the grief.  I'm still struggling with depression, which is probably why I haven't written in here sooner.  But I'm sure it will lift...this time of year is just espcially difficult.
Once again, thank you all!  You are truly helping me bear my burdens.

Tuesday, Nov. 18

When my children were first born, I counted their ages in days, then in weeks, before I began marking the months.  And I've done the same thing since August 24.  Every Sunday became the marker.   Today I found myself wondering, "has it been 13 or 14 weeks since that day?"   I don't know why that makes me sad, but it does.
Autumn has always been my favorite time of the year, with it's colorful foilage and crisp breezes.  My boys were all born in the fall, too....September, October, November, respectively.  (Lisa is my winter baby, born in January.)  Naturally there is an extra poignancy about this autumn.  It was just a year ago that Nolan was first diagnosed.  What a horrible memory!  And now Thanksgiving is fast approaching....last year didn't leave me feeling very thankful at all, I was still in that state of shock and fear.
I'm determined to count my blessings this year and not let the ugliness of legal issues cloud the holiday.  There is sadness, but there is also joy in memories.  I am very thankful that Nolan is no longer suffering.  I am also very thankful that we have something to look forward to this year:  Happily, the boys and I are headed to Houston on Saturday where we will stay with our good friends for the whole week.  I am looking forward to that more than I can express!

Hi, Nolie Polie!  Do the trees in heaven turn colors?  I know it's very beautiful there and that you are running and playing and singing, dancing, and laughing!  I miss you so much angel boy....but I know that time is much different in heaven and it won't seem but a moment to you until we are reunited.  I know Jesus is with you close and that you are holding Grandad's hand as you stroll on those streets of gold! 

Sunday, Nov. 9

It's been an emotional week.  Nolan's birthday came and went, and the boys and I had the little cake & movie celebration.   My friends took me out earlier that day, which was nice.  I think I was numb most of the day....

On Saturday I went to a 'grieving mothers' group luncheon.  The tears were pressing hot against my eyelids on the drive over there.  My heart was pounding as I rang the doorbell, and as soon as I was in the house I couldn't hold them back any longer.   But it was a good and 'safe' place to be.   Mine was the most recent loss, but every mom there cried as she shared pictures and stories about her child.  Interestingly, we all lost sons.....
The mothers who were further along in their journey shared ways to cope during the holidays.  They also talked about the 'side effects' of grief, which were both surprising and reassuring.
I found myself thinking of Judy, Yvonne, Misti, Kim, Shari, and all the other moms I have come to know whose kids also suffered from brainstem gliomas.  I have such an attachment to them AND their children...how I wish we could have a get together someday.

Today was church and Sunday School.  The 3rd graders heard the story of Daniel in the Lion's Den.  They had a lot of energy today, which I wish I could bottle!!
This afternoon I attended a baby shower for my friend Melissa.  She is going to have a little boy in January, and I can't wait to see her baby!

And now it's late, and I'm tired and sad.  It's okay to be sad....it's normal to be sad.
Good night...

Monday, Nov. 3

The weekend was a good one.  Kevin and I went with his friend Eric and Eric's mom (also a single mom) to the church harvest carnival.  We had signed up to run a game booth for an hour, and it was so fun to see all those kids dressed up in their costumes!!  I recognized some of my 3rd-grade Sunday Schoolers, and that was the most fun of all.
Afterward we took the boys to eat at the Olive Garden and then to a movie.  We saw "School of Rock," which was very much to the boys' liking.
On Saturday Kevin went with his dad for the remainder of the weekend and I attended a "Women of Faith" sattelite conference at our church.  It was SO GOOD!!  John Tesh played piano, and even though it was just on a screen, it was live...and it was good!  The speakers were amazing and the messages touched me deeply and even though I cried so much my eyes were swollen, they were healing and cleansing tears.  When I returned home to my empty house, I was able to be there without having to drown out the silence right away.  Everything was okay.  And even missing Nolan so deeply was okay...I don't know how to explain it any more than that.
Sunday was a bit anti-climatic.  I went to church (Communion Sunday) and  to my 3rd-grade Sunday School class (I'm one of the team teachers there).  And it was good, but the afternoon without my boys' home was too long.  I was so glad when evening came and they were back.
Tomorrow is Nolan's birthday.  My heart constricts whenever I think about it, but I think the anticipation of the pain might be actually worse than going through it.  I'm planning to bake a cake and to buy the "Finding Nemo" DVD.  Nolan really wanted to see that movie, but I knew he wouldn't be comfortable in his wheelchair for that long a time.   I told him I'd get him the DVD.  So, I know I'll cry tomorrow, but the boys and I will eat cake and watch the movie as we think of our little boy.

Dear Lord, thank you for blessing me with Nolan.  He was truly a gift!  Please hold him close for me and wish him a very happy birthday.  He's my precious son and  I love him and miss him so dearly.

Friday, Oct. 31

Nolan had been looking forward to Halloween this year...we had been talking about it back in August and he was asking me what kind of costume he should choose.  He asked me if he would be able to walk by then, and I told him even if he was still in a wheelchair we'd go out and have fun tonight.
It seems more than a year ago since last Halloween...at least a lifetime ago.
This morning I went to Nolan's school to see the kids' in their costumes.  I wasn't there in time for the parade, but as I walked in the office I saw one of Nolan's classmates, who just jumped up and gave me a great big hug.  That was just what I needed!!
I had intended to go back at lunchtime and sit with the kids' in the cafeteria.  Today was the first day they were sitting inside to eat; the weather has been so nice and warm that all the children ate outside.
Anyway, I didn't go back at lunch today.  I will try again next week.
Thank you all so very much for the continued prayers, love, guestbook messages and e-mail.  It helps so much.
Wishing you all a safe and happy night.

Monday, Oct.20

Yesterday was the eighth week after Nolan's homegoing.  And today is Kevin's 14th birthday...the first family celebration without our little boy, with many more to come.
I was beginning to sort through some of the children's books in our library but had to abandon the task for now.  We read so many books together during Nolan's illness, but there were still so many I wanted to share with him.  My little book worm.... 
Nolan was definitely a typical little boy, but he had a quiet, introspective side that I cherished.    So many times he would amaze me with his observations.
His illness brought about a lot of changes within him, the least of which were physical.  Kevin and I were talking about that yesterday.  Nolan had matured so much, and he and Kevin were able to grow closer in some ways.

Thank you for your continued prayers, support, and encouragement.  I am so grateful for them!

Tuesday, Oct. 14

Thank you so much for the continued prayers, love and support.  The messages of encouragement really help keep me going.

Tim is doing a good job with completing his work and even doing extra work.   He's still behind in credits, but if he keeps up at this pace he might be able to graduate in June after all.

Kevin is loving basketball.   He plays for the CYO and his coach is so great!  He is also involved in the student ministries group at church, which involves a lot of commitment and personal growth.   I did find out that he is struggling a bit in school, grade wise, but his teachers are very willing to help him get back on track.

I'm doing okay.  Well, at the moment I am feeling extremely sad....missing my little boy so very much!  but all in all, I am doing okay.  Tonight just isn't one of my better nights.

Friday, Oct. 10

I had always enjoyed helping in my kids' classrooms, from the time they started Kindergarten until they had completed elementary school.  I loved getting to know their teachers and classmates and to get a first-hand account of their daily routine. 
Even though Nolan had some ongoing behavior problems, he loved school very much and was always eager to go.  That didn't stop him from being sent to the office for misbehaving!  However, I am now convinced that the abnormality within his brainstem was lurking there for a long while...maybe even since birth, and that was why we were all so frustrated with getting through to him. 
The last day Nolan attended school was this past Valentine's day.  He was so happy to place all his valentines in each classmates' special mailbag.  He was also delighted to get his cards and special treats as well.  At recess he was out on the playground with the other kids and had a little entourage following him about.  I watched him from a distance, my heart just absolutely aching to see how different he looked, and to know that he really wasn't feeling all that well.

Nolan's frequent headaches prevented him from returning to school, and shortly thereafter the class tracked off (it was a year-round schedule).  In March we made the trip to Houston, and upon our return Nolan had weakened and become immobile.  School was a thing of the past for him, even though I didn't fully realize it then. 
He enjoyed getting visits from his teacher, the principal and the vice principal, and he was so happy once he had his very own private teacher who would come to the house every day.  He really worked hard at his lessons!  My Nolan was a smartie, no doubt about it.

I want to visit the elementary school again to see Nolan's classmates now that they are all in the fourth grade.  Will that hurt?  Yes, of course.  But it will also be good to see those sweet little boys and girls again.

Tuesday, Oct. 7
Have I mentioned lately that I REALLY miss my Nolan?   During the course of a day, there are any number of things that can trigger the heartache of being without him.  Today it was at the public library...I had found a book on bugs that Nolan had checked out last year.  (He may have been a budding entomologist, so fascinated was he by the creepy-crawlies!)
As I turned it in and paid the fine, I explained the situation to the woman behind the desk.  She was very sympathetic, but then she asked me if she should delete Nolan from the system.
Oh, how that hurt!!  Nolan LOVED going to the library!  One of our absolute favorite things to do at night was to curl up together and read.  He was quite a good reader himself, but he liked having me read out loud to him, and I loved it, too.
Our city has plans for a new one to open several years from now, and Nolan and I had already been anticipating it.  He had told me, "I'll be twelve when it opens, Mom...I can't WAIT that long!"

I am planning to donate some books in Nolan's memory to the school and the city libraries.  I think he would have liked that.

Saturday, Oct. 4
Tomorrow marks the sixth week since Nolan has passed.  One one hand, I dislike the widening of the gulf between Nolan's time on earth and the present, but on the other hand, the faster that times passes, the nearer the time of our reunion shall be.  Never have I so anticipated the joys of heaven as I have since the day my little boy was carried there!

Nolan's siblings are doing well.  His grown-up sister (almost 21) came over a few days ago and of course we spoke of Nolan...we laughed and shed some tears togther, and then I buffed her fingernails.  We've had some rough patches, but she'll always be my 'baby girl.'

Tim (age 18) told me that he was able to talk to a teacher about Nolan.  He'd always considered Nolan to be his 'mini-me' because they looked the most alike and also because they shared an interest in video and computer stuff.
Kevin (age 13) sometimes dreams about his little brother.  He and Nolan were buddies, and he probably feels Nolan's absence most keenly. 

As for me, my first and last waking thoughts are always of my little boy.  A few weeks ago I started team-teaching in a 3rd-grade Sunday School class.  Nolan would have been in the 4th grade this year, but he missed so much school last year that it feels great to interact with other little eight and nine year olds.  Perhaps it's better that they are a year behind....

My sister Tess wrote in the guestbook that at no time did I seem to be in denial of Nolan's situation...and she's right.  It wasn't that I didn't grasp the possibility of losing him, it was that I was holding on to the belief in and hope of a miracle healing here on earth.  But I think that no matter how ill your child becomes, no parent can ever be fully prepared to give them up.   I couldn't bear the thought of losing Nolan, yet I knew that if God should call him home, He would give me the the grace and strength to bear it.
There is a sort of numbness that takes over and allows you to bear the pain in smaller increments.
Judy Levy, mom of 'angel' Julia, wrote in her journal that yesterday was especially difficult 'for no specific reason,'   I know what she means though.   Yesterday probably didn't mark any particular anniversary or bring about anything different, but the loss was just more difficult to bear....  I feel that way myself.   There have been a few days when I hadn't cried at all and I was wondering why I wasn't 'sadder.'  And there have been days when I just couldn't STOP crying.  There is no rhyme or reason to grief, it just is what it is.

I was reflecting this morning that although I had always loved motherhood, I never fully realized what a TREMENDOUS blessing and precious gift our children really are!  I'd get caught up in the frazzling aspects of parenting and sometimes wonder if life would have been easier with fewer children.  How glad I am now that God placed Nolan in my arms!

I'm sure every parent who has lost a child wishes they could go back in time and fully savor ALL those moments instead of taking them for granted.  One minor consolation of having a child with a diagnosis of terminal illness (as opposed to sudden death) is that you DO have an opportunity to cherish each and every day after the diagnosis.  Yet I often find myself wishing for just one more day with Nolan.  I know one day wouldn't be enough; I'd always be asking for 'just one more.'  So it's better to wait for that eternal reunion.

Dear Lord, please hug my Noly-Poly boy extra tight for me tonight.  Please stroke his hair and kiss his cheek and tell him that I love him so very, very much...

Thursday, Oct. 2

Last night, for the first time since he passed, I had a dream about Nolan.  In the dream he was still chairbound, and I was explaining to him that part of him had died, and now we needed to work extra hard so that the other half of him could stay alive.
I guess I can interpret that dream as meaning that although his body has died, he is still very much alive....and that I am 'working' to preserve his memory. (i.e., this website).

I had always enjoyed decorating the house for the holidays, but my enthusiasm for it had waned the last few years due to the breakup of my marriage.   However, I continued to put all the autumn and Christmas decorations up, mostly for Nolan's sake.  Now, of course, I'm so thankful for that!

This year I'm much more enthusiastic about decorating, which kind of surprised me.  I thought I would have to force myself.  But putting up the decorations Nolan enjoyed so much really does offer comfort...even though the tears blind me when I uncover something he had crafted.

Tues, Sept. 30

A year ago today I was concerned about Nolan's behavior problems at school and was meeting frequently with his teacher, the principal and the vice principal.  We had no idea that a monster was lurking inside his head, ready to strike.
I attributed the crankiness, complaints of headaches, and other subtle symptoms he began displaying as emotional distress because of the turmoil within our family.   But sometime in October I made an appointment with his pediatrician.  And it was at that time that the first fateful MRI was scheduled.

I vividly remember the drive to Sacramento with Nolan's dad, clutching the films containing that ominous looking huge white spot in the center of his brain.  Despite the dread I felt, I was still completely unprepared for the actual prognosis:
  Brain Tumor.  Highly malignant.  No cure.  Death immanent.
Nolan was with my mother in the other room, thankfully.  I remember the wails coming from deep within my soul.  I remember thinking I was going to faint. I remember feeling as if I was being turned inside out.
My baby, my little boy, my son!!!
God, in His infinite mercy and grace, gave me the strength to pull myself together and care for my boy for the next nine months.  I know that I was partially in denial; 'of COURSE Nolan would receive his miracle healing!  This would not end in death!' 

I prayed and prayed and prayed some more.  I went from feeling supremely confident in Nolan's ultimate recovery to recoiling at the thought of his passing so many times I lost count.
But even as I watched him begin to slip away from me, I never completely lost hope.  I never expected that he would be gone so soon.  Nine months?!?  That's such a short time from diagnosis to death!!
And yet there are so many who have gone even sooner.
There is nothing like the pain of losing a child.  Absolutely nothing.  And nothing can prepare you for the times when you find yourself almost writhing with that pain.
Yes, my son is now healed, and yes he is now at peace, and yes I will see him again one day.
But in that moment of blinding, crushing pain nothing registers except the loss and the emptiness of being without your child.

 

Sept. 26

It's hard to believe more than a month has passed since our Nolan left this earth.  Sometimes it's as if he's merely away for a visit, perhaps at his auntie's, and he'll be coming home again soon.
My sister had created some beautiful posters for Nolan's memorial service and I still have them tacked up on the walls.  I can't bear to take them down yet, I need to be able to see his little face every day.
The pictures were all taken before the decadron began changing his appearance, and it is THAT child that I am particularly missing.  It's a relief to know that the little boy who was chair-ridden and so disabled by that blasted tumor is now able to do all the things he has missed out on for so long...and in such a wonderful place as heaven!  With Jesus and all the other 'dearly departed.'
But the sturdy little boy looking back at me from the photos...how can HE be gone??  See how his eyes sparkle, and those dimples flash??  And that impish little grin of his!  Surely HE is still here!

I told a friend that I feel as though I have had to drop out of a very important support group:  the parents of children with life-threatening illnesses.  I didn't want to leave!  I was only there for 9 short months!  Other parents have been there for years and were able to go to the next level:  parents whose children have SURVIVED their life-threatening illness.
But would I want Nolan's suffering to have continued for even one day longer, if there was no chance of a cure?  Of course not.
So now I am in this other group:  parents who have lost their children to brain cancer.  And I'm glad to know that I'm not alone, that there are others out there who know how I feel.  Who feel the same way as me.

A few days ago his hospice nurse and the social worker came by to visit, and it was nice to see them again and know they were thinking of us.  According to all the 'experts' the kids and I are handling the grieving process well....our lives have settled back into a routine....we all have activities and duties to fill the hours.
But at night, I have to make sure I stay up long enough so that I can drop off to sleep the minute my head hits the pillow.  If I don't, the pain of missing Nolan overwhelms me.
Oh, how I MISS my son!!