Just another ordinary spring break for CYJCMD

It's cold in room 2803 at Sutter's Children's Hospital. There are a lot of noises coming from the monitors connected to the probes that run adjacent to Malia's face, skull, back and chest. An infrared camera slowly clicks as it turns to capture her every move though the night. Across from where I sleep glares a large white bright screen with lines and squiggles reading to me visually what her brain is saying, thinking and doing. I gasp at a sudden jump in one of the lines thinking, "is that the part of the brain that needs help?"

 Malia Diane Thomas (12.9 Years Old) has been a mystery and blessing to us since day one. She has a contagious smile that simply lights up most rooms. To say that the mold was broken when Jesus gave Malia to Chris and I would be an understatement, She has a very rare genetic disease called Baraitser-Winter Syndrome. For those of you unfamiliar with this condition, I encourage you to google more about it. Malia is one of less than 50 diagnosed people in the world with this disorder. This means finding treatments and or any leads on her potential quality of life quite difficult.

Malia has been through many surgeries, countless procedures and tests, numerous hospitalizations and has been prescribed at least 30 different medications including extensive changes in doses of those medications. She generally seems happy and joyous. She loves shopkins, playing school and driving to pick up milkshakes with her brothers. She thrives in a simpler way of life :). Her mental age of 4-5 years old will forever protect her from the worries of finishing school, applying to college, holding down a job, supporting a family and paying bills.

Her brain has a lot of malformations that explain some of her health problems. We've nearly exhausted most tests and medications to help improve Malia's quality of life. There are a few more possibilities that are much more invasive to try. These tests/brain surgeries could ultimately cut out the seizures/episodes and even help her to control involuntary violent behavior.
But before things get invasive we must first complete the EMU she is currently undergoing in the hospital. While we are here her doctor is also changing 5 of her current medications while under observation. Step 3, getting authorization to have an M.E.G. performed at UCSF. Lastly we will move to a more invasive brain procedure/operation. None of this is critical and or urgent for now. So we will take this all day by day and moment by moment.

We, (Chris, Yvonne, Justin, Clay & Malia) feel the support and comfort from so many family and friends, near and far that keep our family in their thoughts and prayers. For that we thank you very much! May you all experience the love, laughter and peace that comes from celebrating Jesus's  resurrection  this Sunday. Blessings,
CYJCMD

Serenity...Courage...Wisdom... My journey to 5 YEARS

Five years ago today I woke up feeling riddled with guilt, shame, defeat and self demoralization.
The memories are foggy. We were packing to leave for Morgan Hill to celebrate Christmas 2010 with our families in the bay. I remember being able to cut the tension between Chris and I with a dull knife. The disappointment in his eyes are forever seared in my memory, I'll never forget how defeated his eyes were, red and puffy, I had actually broken his heart. We finished packing the car in silence as the 3 kids (obliviously) ran around talking about not having school, maybe some dirt bike riding with grandpa, or getting money secretly handed to them from Nana and Papa (without us noticing of course).

On that day December 21st 2010, I had woken from an alcoholic bender. I quietly cried for the 3 hour drive, asking God "why?" "why me?" "why us?".

The disease welling inside of me started to really take its toll and have me instead of me having it in the Spring of 2010. There is no discernible moment. No DUI. No arrest. No loss of job. No divorce. No death. So why? The truth is... my name is Yvonne and I am an alcoholic. I have a predisposition to carry the disease of alcoholism. And today December 21st 2015 I have been sober from alcohol for 5 years. 

My journey IS exciting and I still continue to walk this adventure... "One day at a time". 

I want today, with this blog, to show that the stereotypes in my head of what an alcoholic looked like, acted like, lived, drove and worked are way different than what I thought. I often now (as some know) share my story and my journey with others. In the beginning of my journey when asked to speak publicly, I would say "no thank you" as there was no jail time,  loss of family, nothing extraordinary about my story for people to relate to. That was my ego telling me that I wasn't good enough to help others. My ego was wrong. 

The hope in my transparency today is that I may help someone that is in a similar situation. For me, the stress and pressure  I put on MYSELF of being a mom to Malia (a special needs child), 2 beautiful boys, a supporting husband, a sister, daughter and friend took me from having a bottle of wine every 2 weeks, to a glass of wine a night to hiding vodka in poweraid bottles throughout the house. Alcoholism is a disease that strikes fast and hard. I feel so incredibly blessed to have gotten the help that I needed quickly. 

As most know, our family has struggled with numerous health issues, hospitalizations, and daily struggles. The difference now is that I am emotionally and mentally available to take on what ever is thrown at me! LOL  Getting sober didn't mean that all my stress would go away or Malia would be healed or that Justin and Clay would finally listen the first time I asked them to do something (lets not get crazy now), It meant that I can go to my "Higher Power" who is different for some but to me is Jesus Christ. He died for me! Wha?! I know right but he DIED so I can go to him throughout my day and lay my struggle, insecurity, stress, shame, guilt... at HIS feet and press restart. I AM BLESSED! 
It is so easy... Why I don't do that all day every day? I guess is what makes me human :). 

I know there is risk in pressing "PUBLISH" on this blog. 
It opens my choices and decisions up for scrutiny. 
There will be some question and doubt about my past.
It is even possible for me to lose friends that have their own insecurities about sobriety.

To PUBLISH or NOT..

Guess this is your answer. 

Thank you for reading! 

PS I stay sober for me... But these are good reason's too :)





 

W's... Wondering Waiting Worrying

Update on Malia October 2015

Malia was last hospitalized in June of this year. That was after a severe seizure. It is hard to explain the complex nature of her health if you haven't walked this path with us. A seizure disorder by itself would make things hard. Malia's complications come with a list of other diagnosis's 

• ID= Intellectual Disabilities, cognitively age 4(ish).
• Mild CP= Cerebral Palsy
• OCD= Obsessive Compulsive Disorder
• Baraitser-Winter Syndrome- This condition affects the development of many parts of the body specifically the face and BRAIN.
• Irregular and malformation of the left frontal lobe (which may or may not be from the BWS).
• Pre-puberty= License to drive me insane! (Hormone changes)
• And more...

Since MG's hospitalization in June, a new medication was started. At first this medication seemed to have stopped the seizures however the concerning side effect was severe academic regression at school and home including some behavioral aggression. Her doctor increased the meds in hopes of just trying to balance her system. Things got worse including staring/fainting spells all last week. By Friday, she had 2 seizure and because of the amazing staff at her school in Shingle Springs (Buckeye Elementary) Malia was safe and in good hands. I was able to get there about 5 minutes prior to her next longer seizure. EMT's arrived quickly and Malia was rushed to Sutter 35 miles away. 

Malia was seen and released with yet another increase in meds. Her doctor was not availble that night. 

On our way home after being very quiet (Post seizure norm), she rolls down the window and yells... "JESUS THANK YOU FOR MY LIFE!" LOL. Tears of joy and sadness overcame me. Once again thinking "ok, Lord I get". 

Malia  had mild spells over the weekend but a lot of it was thinking that we had to give the increase in meds a chance to work. By Monday, she was showing some concerning signs at school again. Not responding to cues, glaring/staring out, left arm curling and spasm, pail complexion and some sweating at times. Her doctor wanted to see her in his office Tuesday morning, she hasn't been home since. 

Her neurologist is mostly concerned about what can be causing the seizures which is leading to fainting spells and or fainting spells that are leading to seizures (even while on meds). She is now undergoing a 24 hour a day video monitoring EEG to yet again catch a seizure or spell in action to see where and what to do next. As of this yesterday morning he had seen some mild spikes in her left frontal lobe (consistent with her BWS). We are making sure there isn't something more serious going on. This is a process that is long and mentally exhausting however the days are blessed by wonderful offers of help and visitors. My mom dropped everything to help me with Chris and the boys and we have enjoyed other help and visitors...

I have to admit, this has been one of the harder weeks. Spending moments WONDERING if 911 calls will be made, ER visits,  hospitalizations and maybe more invasive surgeries are in her future? WAITING for the next test, seizure, fainting spell, aggressive hitting, punching or emotional breakdown will come? WORRYING about what kids will think, people will say, will she mentally get worse, will I lose her? The thoughts exhaust me. When I am alone for brief moments while Lisa, Chris or my mom take her for walks... I stare at her empty bed fighting the lump in my throat and the precipitation from hitting my cheeks. Then she returns with a Pumpkin bag she made in the playroom or I stare as she smilingly asks, "Are YOU ok mom?" :) 

I can't help but think of others that were less fortunate. I have two friends that lost their sons in July and October. That's when I am reminded of the blessings. I get to hold my baby girl. I get to tell her I love her, I get to hear "I love you" back.  Please keep my friends & their families in your prayers.

I write this anxiously waiting for her doctor to make his rounds this morning. Did he see anything in the tests? Are we going home today? If so, what next? If not, how much longer are we here? Worry overcomes me till I glance up and see my mom doing a unique version of stretching/yoga with her and through my loud ear buds I hear relentless giggles. Again, I fight the tears. 

I need to wrap this up because as most of you know... I hate to write but it is very therapeutic. It's good for me :).

SHOUT OUT to my prayer warriors, you know who you are. I have been praying for you all because I cannot pray for Malia very much. 

HF friends, your support and checking in with me has been very appreciated (especially for mental well being) One day at a time right?

Lastly, THE COUGAR NATION, my boys have been worried but thanks to their school and football families they have been able to maintain some normalcy this week. Now... "BEAT MESA FRIDAY!" in the words of Malia, "GO COUGARS"

Blessings,

#CYJCM

#teamthomas8898

ARE YOU SERIOUS?!

ARE YOU SERIOUS?

Synergy= is the creation of a whole that is greater than the simple sum of its parts OR in other terms= the increased effectiveness that results when two or more people work together.

TODAY I did NOT have SYNERGY with the obnoxious and rude lady I spoke to over the phone in regards to getting Malia some supplies needed to help her maintain important physical functions. 

Over the last few months I have heard, "Your daughter should be doing (this) at her age", "What's wrong with her (Malia) its creepy the way she just smiles and doesn't always talk", my favorite "Special needs or not that's not an excuse for her to..." 

REALLY! ARE YOU SERIOUS?

I fight back tears on the phone today because I don't want the voice on the other line to know I've gone from angry to hurt then just broken :(. For a second (while on hold) I think of 13 ways to hunt, stalk and torture said insurance claim person, knowing darn well that I wont go there but its easier than the tears and the lump in my throat that feels like a lightening bolt to my heart.

I don't blog often (last one was a long time ago). I'm hyper sensitive about writing because its never been a strength of mine but I literally found myself picking up my computer and typing my feelings. It then dawns on me that a year ago THIS week, I received a call that Justin was being transported to UC DAVIS Med Center for what looked like a multi-fractured leg from a horrific hit in football practice. That was also the day before we found out that Mystery Malia finally had a chromosomal diagnosis. 

Has it been a year already?

I guess subconsciously I've been grieving Malia's diagnosis ever since. There is just no preparation for finding out what life will be like. Staying optimistic is still our #1 goal. We believe in a power greater than this genetic malformation. We stand together in prayer with our family and friends that Malia's destiny was already in God's hands and we will continue to pray that the Lord uses her. 

For a bit more insight... This June marked an annual IEP (Individualized Education Program). It was a triennial so a lot of tests and assessment were performed on MG and the results were glum. I never thought that I would pray for the day that my daughter could cognitively develop enough to bag groceries but it was a blow to find out that based on her 11 years of tests, assessments, MRI's, CAT Scans, blah blah blah... that she will more than likely NOT ever develop past the age of 4, she will never work. She will never live independently.  ARE YOU SERIOUS?! 

Ask anyone that knows me well, it was time for me to SHUT DOWN. Then Malia was hospitalized June 22nd for migraines and more seizure activity. That was followed by a world wind of a summer. Malia's birthday, Clay's 14th birthday and a devastating loss of our dear friends son at 18 years of age. I continued to SHUT DOWN... Close and protect my heart from hurt. The out of sight, out of mind continued to work, till today. 

I stand humbled by my trails as they are NOTHING compared to those of others in my life. The loss of a son? The loss of a Mother? The new diagnosis of cancer? A family torn apart by infidelity? 

AM I SERIOUS?

In writing this I find a way to not focus on my hurt but yet to acknowledge it (does that make sense?). So that I may soon... Learn from it and move on... NOT to shove it down...

Blessings

-Yvonne (Marty) (Y-Dawg) (Martinez) (Mrs. T.)

The Show Must Go On! Team CYJCM

Friends & Family,

Summer started as usual. Running the kids all over, finishing up projects, last minute field trips, awards ceremonies and of course FINALS. I graduated from college 15 years ago and finals for my sons still give  me anxiety.

This summer was not like most... At the end of May and first week of June Malia suffered 2 pretty intense seizures. One was while she was brushing her teeth and if not for Chris's quick response, Malia would have gone head first into the sharp edge of our tiled tub (Scary)!!!

The Neurologist determined that after those latest two episodes she would benefit from an extensive 24-48 hour EMU (Epilepsy Monitoring Unit). We were given a waiting list time of ANYTIME between June 9 and August 12 UMMMMMM SEARIOUSLY?! Oh, and that we would be given at the most 24 hours notice for admittance. So lets just say that we stayed close to home.

 In the mean time our Neurologist recommended more genetic testing.  Malia's last genetic testing was 4 years ago, it was worth trying again. Reluctantly, (Not having much faith I'll admit) we returned to the UCDAVIS MIND institute in hopes that answers to her issues may be revealed. In a coconut shell, Malia had already been diagnosed with Mild CP, ADHD, OCD, Seizure Disorder, Severe Migraines, an unknown genetic disorder, erratic mood swings (Behavioral problems) and ID Intellectually delayed (Formerly referred to as mental retardation). The MIND Institute suggested a  newer(ish) test out of UCLA, an Xcross-chromosomal DNA genetics test... My first question.... "What is the likelihood that we will finally find out whats wrong with her and getting a genetic diagnosis?" "Well Mrs. Thomas, I see her and think a 50% chance... I read her medical history (its perplexing)and think more like less than 30% chance of you ever knowing why Malia is the way she is or any prognosis of what her life will be like". My response was "Fantastic! those odds suck butt so lets just run to the nearest lab and wait 4 months for inconclusive results! than we can all run in circles with daisy pierced headpieces and chant for answers." OK... OK... I'll admit I can be a bit of a pessimist and a smart ass. But I married a man who is a Glass is 1/2 Full, so I walked across the street and the three of us gave blood.

While waiting... and waiting... and waiting... There was Football Practice for Justin 4 days a week, football camp in South Lake Tahoe and then Fly football camp for Clay. We squeezed in a couple day trips and some minimal camping. A relatively blessed and what some could call a mellow summer.

An unexpected shock came to our family this summer in June when my daddy was diagnosed with thyroid cancer, that could have already passed to his lymph nodes. For ME... it was a complete BLOW emotionally. There are no words to describe how my heart felt, so heavy and hard. "Not my dad" I'd yell! he's one of the healthiest, strongest men I have ever known and loved. In my head this couldn't be possible. My dad is my ROCK and besides Chris, I trust no other man! 

My dad is the 4th of 5 kids. My Grandfather passed when I was 9. One of my aunts passed over 10 years ago and within the last few years my father has lost his baby brother and my grandmother. I shout in my head "WHAT THE HELL?!" It all just seemed too much for a family to experience. 

Moving on, the true miracle was how his cancer was diagnosed.  My dad is on my moms work insurance (Kaiser, who was moving at snail paces for testing my dad) but over the last few years he's gone through extensive tests, paperwork, interviews & applications to get full benefits from the VA (My dad is a former Marine). "Oorah Dad!!!!" It was the VA hospital in Palo Alto that ran the appropriate tests and procedures rapidly that led to such a quick diagnosis, surgery and recovery. Today he is Cancer free but tests/scans will continue to be in his future. 

I'm not sure I have fully recovered emotionally, I often shout when I'm irritated "For the love of Peter, Paul, Mary & their cousin Randy!"

Not sure why I say that tho, or where I got it :)

Jumping forward... Malia's Neurologist finally called that it was time to admit her for a day or two to run the EMU. The importance of this test was to take her off of her seizure and migraine medications in a controlled hospital environment. If she had a seizure than we could pinpoint where in her brain they were coming from and hopefully give us answers as to Why? What? When? How? these seizure episodes are being brought on by... It is frustrating and heartbreaking to say goodbye to her everyday with that contagious giggle and smile not knowing whats going to happen on any given day. Is this the UNKNOWN Genetic disorder that causes these things to happen?  I'd ask myself (almost beating myself up mentally EVERY DAY). Needless to say... the tests went on for 5 days at Sutter Memorial Hospital with NO seizure activity. :(  

As I drove home from the hospital with emotional and physical exhaustion HE and I had a "chat".

 "What now Lord? You say you've picked me to care for her and love her yet I don't how?! Lord this child tests my patience every day, holds my heart while crushing it at the same time , will she ever play out front alone? will she ever drive? experience college? marry? have kids? Will she Lord? Please give me answers?!" 

Enter... the first day of 4th Grade...

The first day of school is ALWAYS the hardest for me. My mind gets waaaaaaaaay ahead of reality. My frontal lobe goes into overdrive and I find myself cracking jokes to myself (Strictly as a defense mechanism) to hide what my real thoughts are... Why must my daughter, my beautiful little girl ride the short bus (van)? Who's going to make fun of her today? Why will she be on the playground by herself? but more importantly, Lord can you protect her from cruel adults? Can you bring her home safely? Will this be the year she gets invited to a schoolmates party? So far I am pleased to report that school is going well and that I haven't had to trip any children or adults yet :) but the year is still early!

We surprisingly got a call  2 weeks ago that the chromosomal Xcross DNA genetics results had come in sooner than expected. Excited? hahahhhahhhahahhhhha!!! no  Why? (Secretly I thought I knew that the results would prove to be inconclusive as always. Suddenly tough, hard Yvonne faded and precipitation struct Yvonne appeared desperately hoping for answers I became a mess!! The possible "What If's" were consuming me. The results were to be read at 8:30am on Wednesday September 3rd. I couldn't sleep, focus, I was simply emotionally unavailable. All the hopes and prayers, fingers crossed... they didn't matter anymore. The tests were done. It was time to wait and occupy.

Just a suggestion for trying to stay occupied... Try spending time watching some Friday Night Lights (NOT THE TV SERIES) although Chris has always had a celebrity crush on Tammy Taylor (ssshhhhhh)... The game Justin Played on 8/29 was GREAT (Of course I'm his mom right?) But he played with 100% heart on Offense and Defense. We were so proud of him GO COUGARS.

The next day we spent watching our #77 Clay-Bo known as "Cheerio" to his coaches (and we still don't know why).
***Sorry we haven't uploaded his game pics yet***
He too had a fantastic and somewhat close game for many quarters it was exciting to watch!

Regardless, it was an awesome weekend of watching football because both our boys clearly gave it 100% as well did their coaches and teammates. A typical Sunday at church would chase Friday night and Saturday evening football games but not last weekend....

 Malia got violently ill Sunday morning...
 She ended up in the ER with a severe Migraine. luckily for us the on call peds neurologist was Malias Dr, knowing he/we had decided to keep her off her meds  post 5 day EMU a month prior with no seizure activity he felt strongly that Malias Migraines were returning more violently and much quicker off the meds. STILL DOESN'T GIVE US ANSWER'S THO  Monday was also very rough for her physically she suffered another migraine. I watched her roll on the floor in agony, trying to scratch her own eyes out begging for me to stop the pain in her head!!! She has I.D. and an IQ of a 3-4 year old. How am I to explain to her that she will be ok and wont die? I'm not going to lie... this life ages a person its extremely trying on Chris, me and especially the boys who feel helpless!
 My only glimpse of possible hope would come with answers on Wednesday... just 2 days away...maybe...just maybe... we'll get answers.
Tuesday was a much better day... I spent the day on the phone with her doctors trying to figure out our next game plan which will include a 3-dar MRI Imagining Unit (Sedated of course).  Scheduled for September 17th (I think).

As Clay and I try to pass the time on Tuesday night till Chris gets home from football practice with JT we get a call "Don't Panic but Justin got hurt on the football practice field and the coaches are calling 911" -Chris.... "o.k. lets not get hasty cause I've got kinda a lot going on tomorrow and JT always bounces back, just slide him in the car and we'll drive him in"-Me "Um yea no... Yvonne its pretty bad..."-Chris
I quickly check my car to make sure I'm not being punked because this HAS GOT TO BE A BAD JOKE!! (no cameras found).

No bad joke here... he has a broken femur at the knee, dislocated MCL, dislocated meniscus, and broken tibia. Surgery is Wednesday. His Sports Orthopedic Surgeon is optimistic that by early Spring with the right rehab and conditioning, he should be at 100% or stronger. He says boys with his health and drive come back stronger! we'll pray that its as painless as ever.  Coaching staff said "Chicks dig this stuff JT" lol.

Lastly (I Promise), Chris and I left  UC Davis Med Center around 2:00am so that we could return 6 hours later to get Malia's genetics report.

There has been an end to the "Mystery" in "Mystery Malia" 
She has been officially diagnosed with a genetic disease called BARAISTER-WINTER SYNDROME  Its truly a miracle that the test was even invented, there are only 42 published cases and Malia will soon be the 43rd, as well as being the 43rd she is still even more special than that :) she is the ONLY one of the 43 with an extra protein. Please don't ask a lot of details because there is just not enough research on it. We were given the 90 minute clinical DNA/Protien results explanation but from what we've read so far... it totally explains her. Is this good? Is this bad? We have not had enough time to process other than getting confirmation that seizures and other brain issues will be common and that she will more than likely never fully develop mentally or physically. The confirmation was kind of a relief because we finally know, however confirmation of her prognosis of life is a really big pill to swallow

. This has been an extremely jacked up week filled with ton's of crap. (I refuse to sugar coat it). I am FULLY aware that others have situations far worse than ours (because they always let me know). Health is a tough one for me... We all have struggles and sometimes those struggles feel like mountains that we will never peak. I'm still unsure when my strength will help me reach the summit. What I do know is that when I get pulled/pushed to that summit... its going to be glorious and I will not have done it alone :) My best friend will be with me and his name is Jesus...
Thanks for reading! 

CYJCM

PS the rumors are true...
I have been arrested once at 16 Years old for "Attempted Assault of a Police Officer" and I WAS INNOCENT although the judge felt differently. Other than that... I've only entered jail with free will to help others in my situation and they almost always let me out! :)

**** Disclaimer... English and writing were my WORST subjects even through college! I am NOT a writer so please read this with a tad of Mercy****

I literally have wanted to blog for about the last 10 weeks,  but find myself unable to pull the right words together that don't sound like whining gibberish from the Debbie Downer Show. This came out like that anyway.


I guess I can start with a little history After totaling  Chris' car with Malia in the back seat last November in an undiagnosed blackout, changes have unfolded that are so bizarre and unbelievable that even the closest of friends have a hard time believing...


We made it through the Holidays relatively unscathed and Chris and I were so blessed to enjoy our 1st week long vacation together since our honeymoon almost 14 years ago! It was a-maz-za-zing! Thanks to my forever giving family the kids were more excited about us going away than the other way around :0 what the hell? There was nothing like getting priceless pictures via email of my 12 year old being tied to my sisters porch deck with DUCK TAPE, by my niece... Emily. All while I read a book on my private deck in the Mexican riviera, Priceless.


March was shitty I'm not going to lie. I can sprinkle some sugar on it for you but regardless of seasonings... it was still just bull shit. March 6th I suffered a Grand Mal Seizure while sitting at my desk at work. I awoke (very similarly) the way I had back in November after the accident.

Scared... Confused... Curious... Wondering to myself...
Where am I?
 Who the F*** are you? and
Why are you standing over me asking me if I know what day it IS?!
My mind screamed OF COURSE I KNOW!... But words would not form :(
Wait! Wait! I'm yelling in my head 
What day is it?
Why can't I tell the Really Hot looking Firefighter my name or what city I'm in?!
What's going On here?!
 I sheepishly think to myself,  Self, Compose yourself and just pretend like you know exactly who you are, where you are and just crack a lame joke... I do.


A few short days later I was informed by my personal physician that I would not be legal to drive any longer till getting an authorization of full recovery from a neurologist and that would more than likely be after months of testing... Depression wasn't from the loss of driving privileges but from my loss of Independence. I have way too much going on to have this simple right stripped from me. :( The What-ifs were entirely too much to bear. How will I get to work? Get groceries? Pick up prescriptions? Get the kids if their sick? Drop off my Property taxes before its late? At the time I was really thinking logistics. But then I realized that there was NO prepping myself for this, it just got so much worse. I/We then realized we have been so blessed with a car and money to pay insurance & good health to drive. I WILL NEVER take my driving privileges for granted again. I see the neurologist a week from tomorrow for what I am hoping will be a clean bill of health and am prayerfully anticipating a letter from my Doctor to the DMV post dated for June 6th to go retrieve my INDEPENDANCE! I'll keep you posted.


The only way that I have been able to keep myself somewhat above water without my license is the countless trips my parents and sister have made to drop everything and drive up here to rescue JT from a party or get Clay to a game, sometimes getting me to a required MRI or EEG. Chris has been fantastic but is really only one man (Side Note... He always goes yelling around the house: "Johnny Moxon's Just ONE MAN!!!" thats a line from of course a football movie), in the midst of this trial... His parents have both been told that they don't have much time to live which more often lately has left the kids and I stranded because of his last minute trips to the Bay Area :(. Then a neighbor or friend will take me to meet my boss so I can Humbly except a ride downtown. My dearest of friends pinch hits and takes double and triple her shifts of carpool to ease our stress (I love you Lisa). I found endless support from people that I could have never imagined.
To you countless saviors, I am humbled, grateful and indebted. Thank you.

I am looking forward to getting my license back very soon as I said before. Its only been 10 weeks and 2 days without my licence but it feels more like 72 DAYS!!!!!! I enjoy telling people that I hustle for rides and I love the  looks on their faces when I say I hitchhiked the kids to the grocery store for a pack of smokes... is worth every look! But really I've never done that!... or have I?


In the last few weeks (because we clearly haven't had enough). Malia is reaching a point in her development where more educable tests can be done to help us get an idea of what kind of picture we are looking at for her future. The results are in and the meeting to discuss some of our future concerns, goals and fears is today at 3:30. Just 3 short hours away.
Tear's  have flowed from my eyes like broken sprinklers that have no OFF buttons.
And if you know me at all, I do NOT like to cry.


19 hours later...


The meeting was as we suspected based on the reports sent to us over the weekend which included all of the assessments and diagnosis'. All of the Intros to each of the 6 specialist reports opened the same. Malia is a beautiful child who fills the room with her contagious smile.
Her behavior is almost always on task and not only is she positively influenced by peers, she is also negatively influenced by peers. Duh! More recently Justin decide to Pronounce his new "Man-Hood" by Singing "I'm Sexy... and I know It..." 16-22 times a day while being shirtless with his boxers sticking out the top of his shorts (although the later is not new) SHE TOO has decided that she is sexy and she knows it :0 uuugggg I could just kill that boy.

Bottom Line is that MG's Official Diagnosis went from Global Developmental delays to "Intellectually Disabled" which is the new PC term for "Mentally Retarded" Like I said... we have assumed this for some time... But it's now written on paper and the blow to my heart is really something I have a hard time harnessing and hiding. This "LABEL" is tragic but not crippling. As Clay tells me. "Mom Malia is just... Well you know mom... she's just Malia... that's all!" Oh how I love his innocence yet he's right! that's it! SHE isn't Malia Diane Thomas ID. Shes just MG!  I literally have to remind myself of this daily. Chris struggles less with this than I do. I wanted to be Mother of the bride and to be in the delivery room when my daughter had her 1st baby, and non of this will happen.

I trust my Lord to get me through this because HIS love is forever lasting. Do I wish I had less of a potty mouth?  Yes... But he still loves me... Do I wish I wasn't such a smart ass that writes crazy letters back to the Fire Department? Yes... (See my recent FB post 5/14 for that story) But HE still loves me. I will have to give my precious MG to him daily if not hourly because I trust Him for her protection and my strength to ENDURE this trial for years to come. My friend Jason recently reminded me that I didn't have a tattoo of "ENDURE" put on my wrist 4 years ago by accident :) So yes Tiny Tim... This too shall Pass!

Lastly, I stopped drinking almost 18 months ago, the Lord gave me a really bad premonition of things to come if I kept turning to chardonnay and Sangria to calm my nerves after a long day of trials and earthquakes with Malia... In all honesty... It was becoming a problem for me. Most of you don't know that. But it was important for me to share because along with portion control and Gummy Bears I really feel that cutting out alcohol also contributed to my 60+ pounds of weight loss. Sometimes when I didn't add that last part I didn't always feel I was being totally honest.

I am just me,  I have no excuses when I go off in a bout of turrets at the CCS School mom in the minivan that cuts me off. Or when the lady in Starbucks brags to her so called friend about the one night stand she just had, I lack personal control and before I know it I hear myself saying, "UM YA are you aware that you just informed the entire shop that your a sleazy whore or are you really just that stupid?" YES, I still have lots to learn, I see myself as a canvas filled with lots of colors all smeared together and with every trial a picture begins to emerge and someday...

I might just like the picture I see...

Blessing and thanks for reading!

XOXO

The Other Shoe.... Just Dropped

As I journal I can definitely think of better times...
I'm not complaining, I like to call it actively venting with a side of sarcasm.
I recently went back to work in the name of finding "My Independence" "Contributing to the family" "Using the Psychology degree that took me 7 very exciting years  to achieve, (especially the year studying abroad, 'Mas Cervese Por Favor')" "Doing something for Myself"... All of these things crossed my mind as I actively prayed for 9 months for the Lord to bring along just the right job. Don't get me wrong, its flexible and I have enjoyed it, then....
IT HAPPENED it was like an Epiphany of gargantuan proportions!
Ready for it?
I REALIZED I'm an opinionated hard ass that would prefer to do things my way! I know right? Your probably as shocked as I was. This experience is ongoing.
I was "blessed" with a co-worker that hails from the streets, she's done some hard time too (She grew up in Stockton). She too is of a Latin decent and I say that because my genealogy recently proved that I'm not even MEXICAN which disappointed my friend who loves to crack Mexican jokes (Just doesn't have the same effect now). Anywhootle back on point. "Sam" and I both know what's right and whats left and yet we are constantly heading in different directions! So Girlfriend (And by that I mean Co-Worker "Sam") had the gall to use sarcasm on me!!! Excuse me....???? As I look behind me, cause I know shes not talking to me! SHE WAS! SHE WAS TALKING TO ME! I looked at her, the stare down ensued and then it happened...The Moment of all moments... the big enchilada... I tell her to "get the F*$% out of my office!" We both nervously laugh and won't speak the rest of the day....
I SO REGRET THIS... I WAS SO DISAPPOINTED IN MYSELF :( But I'D HAD IT! Months now I have taken her sarcastic tone! How dare she? I guess a little look in the mirror would have helped. Lesson Learned and apologies given.

Regardless of this situation I still feel like I was suppose to work, I mean don't get me wrong, there are pros and definitely cons. The pros are that I very much feel like I am contributing to our finances especially in these tight times and I get to talk to people that don't Soil themselves (That I Know of), while I'm talking to them. I Also enjoy scaring the pee out of men while walking into their restroom by mistake (OK maybe that's a con, gross!). The Cons? Its about 45minutes to an hour from home in traffic. THIS becomes a huge problem when my daughters school calls for me to come get her. The Voicemail that I collected at 2:23pm PST was as follows: "Mrs Thomas this is Janet the Special Ed Teacher at Malia's School! ( I hear rage and Panic in her voice, this is NOT comforting) Do to her Self-Degrading, Colossal Screaming And Shoe Throwing all in the last 30 minutes of school, we are reluctant to put her on the bus! Please return this call... NOW!" Now I have to admit my feelings and thoughts jumped from my inner conscious "Self Degrading" made me more nervous than anything else she said. Did she pee herself? Throw Feces with the shoes? I want to hold her and scold her at the same time. Asking aloud in my car, "God really? Seriously?" Against their better judgment put her on the bus and she did remarkably horrible!

I know deep in my heart that she will never be an average kid this... hurts my heart so much that I feel only a heart transplant will subside the ache I feel. Why Lord? why cant my baby just act like Sarah or Morgan? Why is she on the "Special Needs" Cheer Squad? I secretly fight back stinging tears as she performs because I so desperately want her to fit in with Missy and Alyssa. Well in all realness I know that the Lord has hand picked Chris and I to care for His child while she's here on earth, but why???

Most of you know our history, I have yet to give our family testimony without having everyone in the room in tears. Our years have been long and trying but in a lot of ways I feel like we're on the flip side, at least I thought we were until today...

Who am I kidding? LOL Our lives will be on a constant adventure of "Flip-Sides" :)  I can't complain. I have a loving husband who dotes on me. A 12 year old son that has noticed some recent life changes that Ive made and will NOT ever go to bed without a kiss on the lips (please don't tell him I wrote that) and is always telling me how proud of me that he is, HE is proud of ME! I have an Outgoing 10 1/2 year old that has such a desire to please and who won't lay his head on his pillow at night till we pray as a family... And then there's MG, as we affectionately call her. Smiling and (Usually) ready to please. Not too bad right?

Malia is a true gift! Days like this with a co-worker and "Issues" with Malia at school will continue...

In the END I don't regret much and what I regret I will make right. That's all I can do till the next SHOE DROPS...

Thanks for reading.

XOXO