Happy Mother's Day!

I've never been one to expect lavish gifts and special treatment on Mother's Day.  I much prefer the hand made gifts the kids did at school, with sweet sentiments and spending the day with loved ones doing what we love.  I'm sick as a dog this year, so this year I will be resting at home while Brett and Jack play in the Little League 50/70 game at 2:00 p.m.  After, we're going to my in-laws to celebrate my Mother in Law's recent birthday, and of course, Mother's Day. 

To my surprise, this afternoon a flower delivery arrived from my Mom and Dad.  It is a beautiful assortment of tulips and hydrangia.  When I woke from resting, the lovely arrangement made me smile, then feel horrible since I haven't purchased a Mother's Day card for my own mom.  I usually at least remember that!  So, for my Mom on Mother's day, I give you the only thing I can... the long awaited photos of the grandkids! :)



Nana's 80th Birthday



Nana and her Grandsons

Me, JD and Jenelle at the Angels game on Easter!

JD as honorary bat boy with two kids he didnt' know.

My nephew Trevor being Guest PA Announcer!

He has my eyes.

And finally, if you are still reading... I notice that this work by Erma Bombeck seems to get a lot of hits on this blog this time of year, so I thougth I'd share it with you all once again.  Please enjoy this piece by Erma Bombeck, one of my favorite writers.

The Special Mom by Erma Bombeck, 1980

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint, Matthew.

Forrest, Marjorie, daughter, patron saint, Cecilia.

Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," says God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world, and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised midair. God smiles. "A mirror will suffice."

It always gets a little worse before it gets better...

Thank you for your patience, your concern and as always your prayers in regards to my last post. If there is anything important that I have learned in life thus far, it is to talk truthfully about your feelings; especially with the ones you love and the ones who offer their support. After that last post, there has been a lot of things I wanted to update about; but in all honesty I did not have the energy to write about it. In my head, I've composed so many posts - posts about my Mom's 80th birthday celebration. Posts about Jack and Jenelle and how they are just growing up so fast. A post with photos from Easter. I'll catch up eventually, and I have lots of photos to share, but right now I'm taking it slow. I'm still trying to find myself mentally I suppose.  When I get there, you'll know.  But sometimes it has to get a little worse before it gets better.

Recently, Brett and I have been watching the new Kiefer Sutherland show "Touch" on Fox. As you can imagine, we relate to Kiefer's character because his son is non-verbal like Jenelle. Usually, the show begins with some narration from the boy. One of the opening narrations in a recent episode really rang true for me. The boy talked about how in life our goal is to be heard; whether through music, art, success, writings... it's a natural human instinct to throw our thoughts, ideas and words out into the world and feel the connection of immediate feedback. This resonated with me and I immediately thought of this blog.

Jenelle has been having more seizures of late.  Our next appointment at UCLA is in July, but I'm not so concerned I think we need to get in sooner.  She really has matured so much this year, and I think her new school and the YMCA get all the credit.  Being with children her own age really calms her, and we see less frustration, even if we aren't communicating any better than before.  I can't wait for the day when I can talk with Jenelle and ask her all the things I've wanted to know.  We have a special kind of relationship that I could have never imagined having with a daughter.  I just hope that things continue to improve.

Jack is also changing, and showing signs of developing a closer relationship with Jenelle.  The other night when Jenelle was asleep on the floor after a seizure, I noticed that Jack snuggled up behind her and put his arm over her side as if to hug and spoon her.  In her ear, he whispered that she was going to be OK.  It was beautiful.  He likes to take her hand and jump or dance, and he love to try to make her laugh.  Its amazing to me because it isn't something we've tried to push on him... it just comes naturally.  The love she gives us and gets in return.

Brett and I are managing to survive day to day with emotions and such.  When you think of all we've been through, there is no surprise that we are struggling emotionally.  Our relationship has so many special and amazing qualities, I just know that we will get through these last few struggles and find happiness.  I promise to post some photos soon.  As always, thank you for the prayers and support - please keep them coming!

Keep calm and...

Well, it's been over a month now, so I guess that New Year's Resolution didn't last long - mea culpa! Here is the latest update, and then a few words from the heart.

Jenelle finally got her repaired wheelchair back a week ago, and the same abductor is tearing again. She has really kept us on our toes of late with mic-key button replacements and seizures. In fact, the same button we replaced a week and a half ago had to be replaced this morning. I hope this doesn't turn into a new trend. She is happy though, and loves baseball right now.

I'm doing well - had another follow up at UCLA this week. My blood work still shows the effects from chemotherapy 6 months ago, but my energy level is much improved and of course, cancer tests are still clear. The new "less carb" diet is going well and I've officially lost 10 pounds. I re-test my blood work in a few weeks to make sure we're going in the right direction.

So, now it's time for something I rarely do - show my fragile side. Mentally, emotionally ... in all honesty... I'm hanging on by a thread these days. Bear with me...

I'm constantly complimented on my ability to be so up beat and positive. Well, I'm been taking an anti-depressant since February 2009. Shortly after I freaked out in the hospital when I was there with no neutrophils, but feeling "fine". I was depressed, and the pills were a savior. But lately I have to wonder if these happy pills aren't doing me wrong. If they aren't making me feel invincible when really all I need is a good cry. Yet the tears won't come because my happy pills won't let them. I'm sure that opens up a can of worms I really don't care to debate right now, but anyway...

Being honest here, I have to say that these past few months, I've just been going through the motions of daily life. Keeping that stiff upper lip and carrying on with the illusion that the sun will come out tomorrow, and that my life isn't all that bad as it sounds. Never giving up. Things can only get better. Yada, yada, yada. When in reality I want to cry, scream and just say enough is enough. When does it end? When do I get a break in life? When will I win the lottery? When can I be selfish for once and not care for my responsibilities in life?

And as I feel like this, like I've had enough putting up with crap and I think I'm allowed to be human and I'm long overdue for that break down that I deserve; I get an email from a friend from high school - thanking me for my optimism and telling me that I've been an inspiration to her during difficult times. Then an hour later, I get a text from a friend I haven't seen in a while, telling me she thinks and prays for me daily. And then it hits me... I keep it together, because all of you would accept nothing less from me. I'm a survivor, an optimist, an inspiration, but yet so very human.

Three years later, my cancer is still affecting our family. I'm well now, but the worry, the depression, and all the work we still have to do to get back to the way things used to be before the cancer are still present. We still fight it daily, and we are barely surviving.

I know that no one would ever tell me that I haven't made an effort. That with Jenelle, and my cancer, and the recession and recovery that we are all facing - no one would blame me or be surprised if I just gave up and moved on (in life, not as in exiting this world.) The odds have always been against us from the beginning. Most people only face one of these events in their life and/or marriage - surely the fact that we've made it this far means we've done well, right?



I am human. I fear that every day is the day Jenelle begins to regress, or worse, her last. With every bruise and ache or pain, I worry that my cancer has returned. Everyday I check the mail to see if I've been paid, and then I worry if that money will be enough to pay a bill, or the rent. I worry that my happy pills are just blurring my reality just enough to convince me that things are improving when really they aren't. I pray each morning my car will start. This is my reality.

As a Christian, I have faith that God has purpose for me, for my family, and that certainly this has to suffice. I see myself as a modern day citizen of the second Great Depression; that surely I'm not the only one suffering in this day and age because of our economy and the rules of our society. I sometimes wonder if the "end of days" as the Mayans predict in December 2012 wouldn't necessarily be a bad thing. I guess I'm just human... waiting for some miracle, or some extraordinary event to shake things up in my life.

So, that is where I am emotionally. Putting it all out there for the world to see. Letting you know, that I'm no saint. Thank you for letting me vent here. This blog has been so therapeutic, and I know I haven't lost all hope. When I'm feeling so down, I think of all of you. Those who find inspiration in my life experience, and those who reach out to tell me. I'm human too, and sometimes that little reminder that you hesitate to send to me is exactly what I need to survive the day.

Thank you for the continued prayers. I promise, I'll keep you posted.

Wheelchair Repair

Last Thursday, Jenelle's "brand new" wheelchair broke. It's not as bad as it sounds, but she is unable to use it until it gets fixed... thank goodness we still have her old one. OK, let's see who knows what an "abductor" is? Anyone? Well, and abductor is the little strap that is the "fifth point" of a 5 point harness (i.e. between the crotch.)


So, we're talking the strap that keeps Jenelle from sliding out of her seat belt in her chair came apart. Yes, somewhat minor, but important if you know our Jenelle. In all honesty, it didn't look like it was sewn in all that well when I got it, so it didn't surprise me.


Yesterday morning, I met with a repair guy at National Seating and Mobility. He was shocked. In all his years working with Convaid (the makers of Jenelle's wheelchair), he has never had to process a warranty repair. That says a lot for the quality of Convaid; an honestly, her last chair held up longer than we ever imagined, and it was a Convaid too! He took photos, and made a report and spoke to Convaid. It may take a few weeks, but they are going to replace the seat. Luckily, Convaid is headquartered here in Southern California, so we're hoping it won't take too long!


Her bus driver suggested taking it to a shoe repair, because really all it needs is for the abductor strap to be "re-sewn" into her seat. Not a bad suggestion, but of course, that would void the warranty. We'll just stick with Convaid.


Keep up the positive thoughts that we get a repair soon!

Almost made it!

One post per week per my New Year's Resolution. I consider weeks to start Sunday, end Saturday. Well, I almost made it, but I think the "two posts in one week" should grant me some leeway. So, I missed it by two days, we all have faults! ;)

Jenelle had her first seizure of the year on January 14, and another seizure last Tuesday, the 24th. That seizure happened at the end of the school day in her class room. A grand mal lasting 2 minutes, 40 seconds. No need for Diastat, and she slept most of the evening. Hoping this doesn't start a trend.

Jenelle has a new one on one aide at her YMCA after-school program. Last Friday, her former one on one aide came to visit and she was just ecstatic to see her. I love it when Jenelle shows familiarity with people. On Saturday, she and I attended her "year end" party for the Tustin Cobra Challenger Cheer girls. She was just thrilled to see the girls again, and it was fun to watch them do their hair, do their nails and dance to fun music. The cheer leading was such a fantastic experience, and we can't wait to do it again next year!

I'm doing well so far on my new diet to help me lower the triglycerides and lose some weight. The first week was pretty tough; I had headaches I think from sugar withdrawals. However, in that first week, I also lost 3.2 pounds! The second week was much better. The headaches were gone, and I felt like I was fuller at meals, and had more energy. Isn't is amazing that what we eat can affect us so much. The second week I gained back a few ounces, and added some more exercises. Starting into my third week now and I am maintaining a total loss of 2.3 pounds. Pretty good so far, even though I cheated a bit this weekend and ate some candy from the pinata at a birthday party this weekend. :(

That is all for now - we are getting pretty busy with baseball tournaments the next three weeks, and gearing up for Little League. It's beginning to look a lot like Spring! Thanks for continued thoughts and prayers. I'll keep you posted.

Who decides the meaning of "Quality of Life?"

A few days ago, I noticed on Facebook that friends were sharing a blog post about a child with mental and physical disabilities who was being denied a life-saving kidney transplant. Many were "out-raged" because on the surface it reads that a child was denied a transplant solely because she is "mentally retarded". I was busy at the time I saw the post, and didn't bother to read about it beause I thought to myself, "there is always more to the story."

At lunch today I noticed the same story had gained national attention, and was being reported on by ABC News. I read the article and remained unimpressed - there has to be more to the story. So I went to the Mother's blog, and read with teary eyes their story. And when I got to the end of it, I felt there had to be more. I looked briefly for some history on the child, perhaps a personal blog or website where the Mother was disclosing health information, but found nothing. All we are left with is her story of a horrific experience, and medical information and statistics on the child's diagnosis. In her story, the mother eludes to "Hepatits C", and "HIV"; but there is no discussion as to why those words are relavant to the hospital's decision in this matter.

Now, I would be the very first person to stand up and scream and shout that NO ONE - EVER, EVER, EVER, no one should EVER be discriminated against or denied medical treatment because they are "mentally retarded!" Just two days ago, I posted my hope that one day Jenelle be judged on the content of her character, and not by her disability. And I do personally believe that the Special Needs community (which is very vast and inclusive of many different types of disabilities) is probably still one of the most discriminated against communities in the world. Yet, even though I agree strongly with all of that - I find myself feeling sorry for this particular family.

Their daughter is only 3 years old, so this "special needs" way of life is still new to them. They can't possibly know, or understand what the doctors are warning against because they are too emotionally involved. The Mother even quotes the Social Worker and the Doctor's warnings of the dangerous side effects to a normal child, let alone a child with her disabilities. And the many medications she will need along with the long term care and attention. They are trying to make the family understand "quality of life," and all the Mother hears and knows is that her child is "developmentally delayed" and thus entitled to her right to live.

I'm not saying this Mother is wrong, but as with anything, experience tends to make me somewhat jaded. Each Special Needs Child is different, and wonderful, and complicated in so many ways. Each brings joy to the lives of their Mother and Father - there is no questioning that. But just because we have the science and ability to prolong the enivetable for our Special Needs Children, does it mean we should?

It goes back to the definition of "quality of life", and who decides the meaning of it. Yes, I realize I've just opened a big ole can of worms. That I'm the minority. In fact, I realzie I'm being very matter of fact about as decision that is as unique as each indiviual on the planet. However, the issue of "quality of life" has become very personal to me in recent years. I think of Jenelle's quality of life, Brett's quality of life, Jack's quality of life, MY quality of life, my Parents' quality of life, my Niece's quality of life, and it goes on...and yet there are so many different interpretations of the meaning.

So who decides? Who determines "quality of life?" I honestly don't know the answer. It changes with each possibility, and each circumstance, and for each individual person. I do hope that when I have to make that choice for myself or my family that the choice is easy for me. But we can't all be that lucky.

Back to the "discrimination" issue; is this child being discriminated against? I don't think so, because there is always more to the story. Is it sad? Yes. Do I feel horribly for the family? Absolutely. Are the doctors right on this one? Possibly. Again, there is always more to the story.

Jinx...

Jenelle had her first seizure of the year on Saturday night lasting a little under a minute. Oh well, not a bad run for the first 14 days of the year!