Alex and Matt

Conviction or condemnation??

Diane Pearl — Sat, 28 Jan 2012 17:54:37 +0000

It is a beautiful Saturday morning. I drink in the sounds of muffled cartoons, sniff sweet cinnamon rolls and for running absolutely no where. A full sun is brightly shining, very a-typical for January in St. Louis and even the grass is still green. It has definitely been the winter of no winter. Alexandra is sleeping (past noon, duh) as I still love to stand and stare at them in awe of countless miracles. She is sprawled everywhere in leopard p.j.’s in her safari-like room with soft draping encircling sort-of protecting her from life for awhile. Matt has been all comfy on the couch for three days now, safely resting in his “nest” of lots of pillows/blankets smelling of Vicks vapor rub. Cough, cough…mom bring me more something…Mark is in Atlanta working and Austin is in Florida, so it is me and Rosie at the helm. At least she likes to fetch; can’t say it is my favorite pass time. But it was a grateful, quiet morning drinking in some time to think/read. This morning my thoughts and energy were about condemation, confliction and confidence. Basically, not condemning others but being honest with yourself taking responsibilty and choosing positive actions. In other words, pin-pointing a problem with kindness not just dropping hurtful Hiroshima blame bombs. Being hopeful, not hateful in other words. Using the God-given days to shine or be shined upon gaining speed with confidence. I call it my “God-spa” time. Rejuveniating as you take all things absolutely unneccasary out of your limited time and fill it with peace, not perfection. You take the hand holding your face down in the mud away and stand tall with some sassy scripture. Aats right! At least it lowers my blood pressure, stops cortisol from shooting causing the Xgames of stress-eating and gives me some power over perfection. Even Matt sick ha-chooing and moaning is OK…at least he is with me, I say gratefully. PTL! Give praises to yourself today…you are a great person with lots to give then start passing praises around. Much more fun than energy draining condemnation. Get convicted…gain confidence.

What is your purpose?

Diane Pearl — Fri, 27 Jan 2012 16:03:44 +0000

January 27, 2012

Matt is home sick today fighting a cold that probably came from me…ugh. He is resting while Alexandra is running around from class to class at school getting his work. She would HATE for him to get behind…ha. Just what he needs; two mothers! My mood is unusually good as January is not normally my rockin time of the year. Resolutions get broken, dark days keep me fogged, the cold chills my already questionable mood but this year has been quite the exception. Matt had a suspicious spot on his lip since before Christmas, but so far so good. PTL! Alex and I have both been working at our little local “ski” resort, which has been a wonderful experience of female bonding. However, leave it to the Pearl curse to be the winter w/o snow…bumma. I try! On a high note, both she and Matt received their driving permits, on a low note; my medication has tripled (just kidding.) But mostly, I found an old quote I wrote prompting me to journal again saying: “I believe everyone has a purpose along with a unique gift to give to this world. I do not want to be one who dies with the music in me yet I search for what I was put on this earth to accomplish and share.” Funny how that purpose feeliing just does not go away. Purpose as a wife, mother, sister, daughter, friend…ahhhh. Purpose just as a person each day one foot in front of the other. Sometimes stumbling, sometimes jumping high in the air. What is my purpose, I scream in silence. Matt is yelling for me…ahh ha, found it for now. I would miss that yelling. Instead of just allowing time to purpose, allot it! Pray he gets better, please. Thank you

Merry Christmas!

Diane Pearl — Wed, 21 Dec 2011 14:54:14 +0000

The Secret of Christmas

By Diane Pearl

December 21, 2011

The same note you write in a Christmas card

Will not cure the fight if your heart is hard

The sweet sound of carols playing out of tune

Are over with a new year replacing them soon

The presents wrapped perfectly are quickly forgot

As the true secret of Christmas cannot be bought

Not anything you buy or bake or do

Only Christmas secrets may come true

So think about the real meaning of Christmas

The good and bad blessings that are all around us

Take time to share many significant smiles

Give love, time and hope all across the miles

Now do this my friend and do it abound

Do it with joy all the year round

To family, to friends or strangers in need

It will be a secret gift for all

But for you most indeed!

Understanding complexity will bring you simplicity…

Diane Pearl — Tue, 29 Nov 2011 16:48:29 +0000

We had a very quiet Thanksgiving with just the five family; Mark, me, Austin, Alexandra and Matt. Of course, Rosie the best yellow lab in the world sat begging for turkey and salivated for leftovers with unattractive table drooling. She was nicely excused…I guess since two Fanconi anemia diagnosis’ 11 years ago this Christmas, we have learned simplicity through complexity. It helped to be in the Cardinal Kids Cancer Center most of the afternnoon on Thanksgiving Eve as well for blood draws and tests with Alex and Matt. That certainly makes your problems appear trivial. Kids with no hair, IV’s running and beeps abound keep my prospective in sinc with what is important in life. So, I started cooking Thursday morning, Mark ran to Walmart and the boys fried our traditional Tom Turkey. We all said what we were thankful for…and moving right along, I did some Christmas decorating. So the complesities and joyful if you take them one at a time, count be blessed for each and enjoy before you go to the next. Matt and Mark went midnight shopping for TV deals and had a blast. Alex and I watched many episodes of NCIS curled on the couch as she thinks being a spy is in her future. I have no test results back yet from their appointment and pray no news is good news. We did a Thanksgiving story for NBC KSDK as well that day: http://www.ksdk.com/news/local/story.aspx?storyid=287593. Keep the complexities of your world as simple as possible…Happy Holidays!

At-t-i-tude…

Diane Pearl — Tue, 08 Nov 2011 19:48:35 +0000

I was asked to take a test and I failed completely. It was to go for one day not judging others but seeking their soul and seeing their spirits. For example, I saw a fat man smoking a cigar and my feeble mind screamed “idiot.” Shoot! I bet he is a very nice person. I saw a woman screaming at her child in the grocery store and again immediately went to 1-800-bad-mother alert. Shoot! I bet she was just having a rough day and maybe the kid was a brat. Darn! There I go again. I hate being a stupid human. So I am going to write about something important to all of us so read carefully and see if you can figure it out. It is more important than anything we can buy, than any huge success or job, more powerful than all amounts of money, better than the facts of life, how we look, how we want to look or even our best day’s circumstances. Neither the past or the future matter as this is impactful mainly at the time of delivery and usually life changing to you as well as to others. There are few things in life we can freely change but this truly is one of them. It costs nothing and is worth a million. Give up? Our choices in life can put us in charge to change this one important thing. It is how we react through our attitude. You know, it is not what you say but how you say it??? With a smile? Grateful not grumble, no matter what we wanted? The old wise proverb “he is richest who has the least.” I have been making my teenagers sit together and say nice things to each with a respectful, loving tone. I tell them life is all about your attitude. How you handle the good and even more importantly, how you handle the bad times. One thing is for sure, this time never comes again and goes very quickly. Attitude toward God, family, friends and strangers can be everything .

Do not work hard to do easy tasks…

Diane Pearl — Mon, 31 Oct 2011 20:18:11 +0000

My thoughts today: I hope you do not work hard to do easy things yet through faith and hope find it easier to do harder things. Make sense? We have been on a sports roll with the wild baseball of the St. Louis Cardinals in the World Series. night after night of electric excitement; not knowing if there would be another game, we put many things a side. Each game the team worked so hard to win. I found it easier to do hard things like schoolwork in the car while driving to the game, eating in the car while driving to the game, paperwork in the car while driving to the game, pretty much living in the car while driving to the game. When you simplify things like loading the car with everything you need, it seemed to make hard things much easier. Of course, at the last out with confetti pouring down and fireworks lighting the sky, a normally easy thing like getting out of the stadium was mass chaos. It was a scary stampede of fanatic high fives as I hung onto Mark’s jacket with Matt protected inside my arms. I hate an easy task made hard…Do not work hard to do easy tasks

Never lose faith…

Diane Pearl — Thu, 27 Oct 2011 13:57:05 +0000

I had wanted to take a drive the past few days to see the leaves missing so much color and beauty of Missouri as we were in Spain. Mark and I dropped the kids off at Karate, then quickly headed for a loop behind the house that is gorgeous. Carpe Diem! It was dusk, so he said I was crazy but indulged me as usual…as we were straining to see going up this big hill a man was coming towards us out for his nightly jog. When he passed we both gasped, “Oh my gosh!” noticing he had a prostetic leg. Wow! What a message of courage and determination that God’s perfect timing provided watching him nonchalantly trudging up this huge hill of life. I turned in amazement and much adoration silently thanking him for reminding me that no matter what, you can overcome obstacles. It was a definite God wink moment full of falling leaves representing countless hope all around us. But you had take the drive. Then even more you must look up to see them before they fell. I am so grateful to experience and share these reminders teaching me to be strong and never lose faith.

Rise and conquer…

Diane Pearl — Tue, 25 Oct 2011 14:21:10 +0000

I went down to Matt’s room this morning to hear JOY FM, our local Christian Rock Radio station blaring. OK, well he IS up. So how do you yell “turn down that music?” Instead, I stopped dead in my tracks listening. The message was for a husband never to leave the house without kissing his wife goodbye wishing her a good day; for children to love and obey their parents no matter what…I love these powerful words to lift Matt and Alexandra on their “life” journies everyday. Because when he comes upstairs they watch TV together but with no words because he has JOY FM playing as well. It is amazing how kids can be better teachers, leaders, even followers of faith than mature, hum ummn, “experienced” adults sometimes. Only until you look in the mirror with a lot of light shining can you get out of the darkness, those deep blame holes that keep us from reflecting good (or the word good with only one ”o”, God duh?). Be grateful, not blameful. I was thinking about my mom today as she used to yell at me to go pick up the apples in the backyard so dad could mow the yard this time of year. YUK-ko worm-filled smelly apples. But then even more fondly remembering her resourcefully taking those rotten apples and cutting out the “bad” spots to make delicious German fried fritters with sweet cinnamon and sugar. I choose the good thoughts as I miss her today dearly. It was the first year of my life she did not tell me Happy Birthday. (She is sadly in a nursing home after suffering several horrible strokes.) Deep sigh.

So I get my stitches out of my head today. The bloody gash is healed and the good news is Mark and I are safely home. It was devastating to stitch fears and failures together with only hope of healing, no pain numbing meds! But this is life each day. My body was shaking in shock and truly it didn’t hurt so bad. Why waste time in a blame hole? I want to take responsibility and move mountains standing on top. Rise and conquer today, my sweet friends and family. Rise and conquer…

Out of the Twilght Zone and back in USA time zone..be the light

Diane Pearl — Mon, 24 Oct 2011 15:20:55 +0000

Back from Barf-olona and God bless the USA…we had been trying since Wednesday to change our flight and return so after 19 hrs. yesterday; I kissed the ground extremely thankful to hug my sweet children and sleep with Rosie. She will not leave my side. Needless to say, it was a very strange trip and I am sure you have lots of questions. So do I. It was the most outa body experience and life-flashing-in-front of me time I have ever had. As I was falling, all I could see was the kids reaching out their hands and I could not reach them to catch me. I don’t know what happened other than you should see the tiny hole I fell through in the fountain and all the jagged rocks I missed. I was not wearing my sentimental cross necklace and my sunglasses remarkably stayed on my head taking another inch of a gash possibility away. It is difficut to explain how Mark and I felt attacked, violated and just surrounded by un-Godly things. It makes me sick as they stole Alexandra’s new Nook and I-Touch I had borrowed for internet so to stay in touch with them that was even purchased for her by a charity. As it was only material things and just my glasses so I can see (ugh), mean strangers made her cry huge tears as we told her last night. Why me? She says tearfully? Why mine? Why FA? I wish I knew as I held her sadness in my arms. Of course, she worked through it but her I-Touch had her special Paris cover on it she bought with her amazing donor, Catarina from Sweden last summer. The kids laughed at their souveniers of a hotel key and airplane peanuts! Mine was a very lovely pair of white, velcro two-sizes-too-big Spanish nurses shoes instead of cool leather boots! Go figure…I give up. However, they allowed me to walk out of a horrible could be worse situation one slow step at a time. BTW, the were ironically brand named, DIAN. No joke. Obviosly, souvenier shopping was not a priority and they truly are the kind of kids that do not care and have learned how to roll with the punches. But Alex’s stuff being stolen hurt like a huge blow to the gut. Thieves and opportunists run rampant everywhere, I suppose. But the feeling of being “raped” and tested was extremely heavy this trip and as warned, Barf-alona was bad. We actually saw many more instances of people robbed and could do nothing to help as it happens so quickly. I must say with a warm heart, however that the wonderful support of our FA family and dedicated doctors/researchers was ten times as hopeful and encouraging. I had to leave one presentation to throw up and one in tears as the information is “real” and for scientists, keep in mind, yet we are very grateful for all of the FARF staff to pull off another incredible Scientific Symposium while holding my hand, too. They are incredible humankind, this FA group. There are great strides being made for FA and Cancer. So all in all, you move on. Prayers were answered and we are home. My physical body hurts and I am sore with a concussion, but my emotional spirit is alive and soaring. Also, we were blessed with a great decision to have purchased trip insurance. (Thank you my incredibly smart husband) FYI: Don’t leave home without it! However, once again, the most important fact was a clear CT scan showing no bleeds enabling me to fly and insurance to cover a $6,000+ one way ticket to get home. It is funny, when we boarded the flight and had taken any seperate seats hoping someone would just switch, right? Keep in minnd I looked like death and Mark is very sick from a cold with hardly a voice. So he asks in his raspy voice a rather large lady if she would mind switching seats and she said “no.” So I went back and took my seat in tears needing him desperately, not another stranger on this 10 hr. first stretch of a very long ordeal. My head hurt, I was scared of the cabin pressure and now, “NO”?? You have got to be kidding me. But a very nice woman immediatley stood up behind her offering to change and a very nice man easily changed asking no questions. So there you have it! 50 % of the time is not bad that one out of two people will do a nice thing. It was just at the time, I needed 110%, I guess. SO again how many times have I preached to go out do something nice for someone for no reason, whether you know them or not? Hug your kids, don’t sweat the small stuff? Honestly, I try to do this as much as I can but this trip was a nail in my coffin! It seems to be my mission to speak loudly for “100%” and continued unshakeable faith in the only thing that is always there 100% for us no matter what or where…that is God’s love and comfort. Mark’s sister, Eydie reminded me this morning that I just kept saying before we left that I did not look forward or feel good about making this trip. MiMi sacrificed seeing little with Noah being born to stay with Alex and Matt. Nothing was working easily before we left, but it never does around here and I was really good with staying home. What do you do? All we could keep telling the kids last night was to go forward with your head held high…put the past behind and move on. Life is definitely way too short and complicated to simply deal with the paperwork, crap and issues…but life does always has its issues. And, boy do we have a lot of crap and paperwork! Doo do dooo do doo do doo do…I always hated the Twilight Zone Show. Hated it! Love light! Hate darkness…wow, is it ever truly beautiful, sunny, warm, fall colors and a perfect here today, PTL! Find the light, stay out of the darkness. Be the light.

Find the blessings in life´s problems

Diane Pearl — Sat, 22 Oct 2011 09:06:04 +0000

After another scary day of being dizzy, headaches, numb fingers and toes…they sent me back to the hospital for a CT scan. The doctors here in Spain did not want me to fly obviously if I had a brain bleed or hemotoba. We had to wait till 6 pm yesterday to get into the yet another hospital but the results were normal, ha ha very funny as you think yeah, right..she is normal? The afternoon was very difficult as I imagined not getting home or having to have further treatment here. I sat and cried so sad in disbelief of the past few days I had so looked forward to. But this morning I opened the curtains to the most gorgeous sunrise over Barcelona and Mark started pitifully singing the “Annie” song…the sun will come up, tomorrow..bet your bottom dollar la, la , la ahh, ya yi as I threw a pillow at him! Yes, another Pearl adventure beyond belief or description. Mark tried desperately to be supportive, so with a big hug we stared at the sunrise over the Medeterrean Sea in silent disbelief of our lives. But it is a fresh start and other than the trip insurance company returning a call from the US at 6 a.m. (our time) giving nothing but a huge hassle of trying to change our flight to get home sooner, here I am sitting in the FA meetings trying to process the brillant scientific discoveries and minds as we watch pictures of mutant FA mice, zebra fish, monkeys, chickens and now possibly dogs and pigs. I thank this dedicated group speaking so many different languages and accents, (as if the FA language is not bad enough to understand,) for being here for the our precious FA population. (300 some families across the world) There are over 70 posters that could win many Science fair projects also explaining countless ideas, theories and projects from around the world. Matt and Alexandra wanted me to bring some home for extra credit! Many of the Spanish FA families are also here so it is always a learning and enlightening experience to say the least. I truly saw my life, the kids and everything flash before me as I fell the other day and am seeking deep reflection to walk this path learning the hard way once again how precious each moment truly is. Everyone here is so supportive and kind; it is just incredible the close friendships we have made over the past ten years with this unique club you would rather not bqualify for. FARF (fanconi.org); or the Fanconi Anemia Research Fund is a model organization for orphan diseases funding over $25 million dollars or 171 projects at 48 institutions in 8 countries. FARF is not only seeking a cure for FA but finding effective treatments for Cancer while providing education and support services to affected families worldwide. In your charitable giving, please, please, please consider our organization. It would help so many to put purpose to the pain. You can easily contribute to this cause on this site or visit fanconi.org. As always, thanks for listening and I hope for you to find blessings in life´s challenges. I thought this experience was going to the nail in my coffin, but as I look around with tears in my eyes seeing the huge photos of FA children hanging in this room, I am encouraged to try to help them in some small way, again.