PTSD...🤬

Warning: This is an angry CHD post.

Someone once told me, "PTSD isn't a real diagnosis"...and although I have removed this person from our lives, these words ring in my ears on weeks/months like these.   
Every single night this week,  Spencer and Tucker have both been waking up in our bed. 

A few months ago Tucker was involved in a "lockdown" drill at school.  (If you are not familiar, the school locks all of the classroom doors, turn off the lights and everyone hides. Then someone comes around and jiggles every classroom handle.)  For the child that doesnt have PTSD, this would be a scary situation.  From the parent of children with PTSD, I assure you that this situation has catapulted Tucker (and subsequently Spencer by Tucker's actions) back to the "dark period" of his CHD journey.  He has regressed so much, he is back to having nightmares every single night, he has "accidents" again, he (and Spencer) won't fall asleep for hours at bedtime, they both have repeatedly been complaining about pain.  Spencer is back to sleepwalking/talking in his sleep. I am not sure that I can handle many more sleepless nights.

For me it's this picture, I remember being so happy the day that I took this photo, post op just a few days after his first open heart surgery and no chest tubes!  The doctor's tell you..."What an amazing recovery!"  Tucker was awake, his heart was beating on it's own again and most importantly the surgery was a success and we had a little "pink" boy.  What you dont see is how many times I got up (...and still do) to check and make sure that he is alive.  Or how many funerals for heart friends have we attended since this picture was taken.  And today I am beyond angry and upset that my children will grow up and remember all of this.

I'm not exaggerating when I say that both of my boys have been through hell and back.  Both of them have their own story about how Congenital Heart Disease has effected them, but for once, I just don't know how to help them.  This is the part of CHD that sucks and there is no CHD book that tells you how to "repair" this.  So from this angry heart ..."Fuck you CHD, I fucking hate you!"

Calm before the storm...

Spencer

Spencer just finished up his last season in Little League for baseball, I am not crying, your crying!  (sniff-sniff) He is a champ, he branched out this year and played several different positions.  He struggles to sometimes have the self-confidence to believe that he can do anything that he puts his mind to.  Although he stills has nightmares about being a perfectionist, he is working on this and improving every single day.   (He is totally his mother’s child) He is currently finishing up his 6th grade year at a local charter school, AMSA.  I am sad to say that when he entered this school, he had a 3rd grade reading level.  I am proud to say that although his grades are still quite low, I am very proud to report that same little boy, has read SIX MAJOR NOVELS this year, including Unbroken, and The Odyssey.  Although he still has quite a long way to go, but he has made fantastic progress!    

This summer he has several trips planed with "Grandfather" fishing in the Atlantic with the Narragansett Fishing Club.  He is so thrilled to be the Co-Captain on Grandfather's boat.  He is our "Outdoors-man" He is also looking forward to many of the day trips and excursions that we have signed him up for through our local towns summer camp.  

If anyone knows anyone (preFeRably a studEnt looking for somE community service hours) that would be willing to work with Spencer this summer on his summer reading or teaching him the beginnings of Algebra or Geometry, please PM me.  We are trying to get a jump start on next year. 

Anthony

Anthony has continued to struggle to find where he "fits in" in our house.  He has started to show both Gary and I more affection, I even got a wonderful Mother's Day Card from him where he called me "Mom" in it.  (I am not going to lie, there were some tears.)  He now continues to amaze us with his ability to read books well beyond his age.  He has taken over one of the children's bibles that we have in our home.  He has opened it every night and I can hear him sounding out difficult words..."COR-IN-THE-IANS..."  It is sweet to overhear and he continues to show us every day how resilient a child can be when you shower them with love and consistency.

This summer Anthony is signed up for a few weeks of a "fun and games" camp.  Where they will learn to make their own carnival type games, although he is quite inventive when he is playing with Lego’s, unfortunately, this is where his creativity stops.  Unfortunately, through no fault of his own, he is still drawing stick figures and is behind his peers in his “creative thinking”.  

Tucker

Oh boy...where to begin with this kid!

In school Tucker is still a little far behind, however this year he is certainly presenting with more age appropriate skills.  His education team does not think that he needs to continue with his year-round schooling so I am happy to report, that he has the summer off of school this year.  I am hoping that he can remain on a tight schedule and that I will be able to transition him appropriately into 2nd grade in the fall.  Fingers crossed.  He is signed up for a “Sensory” camp this summer.

Cardiology

Tucker's heart looks good, so far, so good.  It has been quite a while since Tucker has had an SVT episode.  Although he has made some complaints about his chest hurting recently, after a brief visit to Boston Children’s Emergency Room, he was diagnosed with dehydration, he was rehydrated and sent on his way. 

Neurology

This one might be a tough one.  Let me start at the beginning.  Tucker was born with several anomalies that we have yet to understand.  He is not Asymmetric, he has an ear and one of his eyes are not aligned.  It is very slight and not something that the normal eye would even notice.  However, he also has a crooked crack in his bum.  Insanity...Right?!  Well after a checkup when he was an infant, where we tested his DNA, all was deemed OK.  Well we just assumed that these were "Tucker, being ...well...TUCKER?!"  SO…to bring you up to what is happening today, He has been having potty accidents, being almost eight years old, this is no longer "normal" He continues to tell us that he is unable to feel the "urge to go".  Sometimes he even blames these accidents that happen in our home on the dog?   After his neurologist found this out that his Barium Enema was within "a normal range" and that he had an extremely long colon, and something called a “sacral dimple”, she urged us to have an MRI, which I thought would rule out anything major.  Unfortunately, it is believed that Tucker is again, like "No one else" and he has an abnormally long spinal column nerve and extra vertebrae.  However, the physician that read the MRI results could not rule out what is called “Tethered Cord” Syndrome.  We are working with a Neurosurgeon at Children's Hospital in the next few weeks to complete more Urodynamics testing.  (Currently scheduled for Monday July 8^th.)  Please send your prayers that Tucker doesn’t have to have another surgery, I honestly don’t think that I would be able hand him over for a spinal surgery.  

Kayla

Well we have our last graduate from Kindergarten in the house…and a soon to be 6 year old as well.  Her Mermaid birthday party is scheduled this weekend at a local beach, please send good vibes for nice weather for her big day.  Kayla still is struggling with a severe attachment disorder.  I personally think that it is getting worse, but she still has her days where she regresses and talks like she is a baby.  Honestly, it has been quite a hard thing to help her with.  She seems to have days where she glues herself to either Gary or I and will not leave our sides and do age appropriate things.  She continues to miss the absence of her mother in her life, and now with the loss of her grandmother.  She is doing well academically in school, at her testing recently, she was tested and has tested double her age level.  She lacks a lot of social skills and self-regulation.  Sometimes she simply, doesn’t know how to act around people her own age.  She is signed up for baking camp this summer, and she is thrilled to learn to be a “little lady”.  She can’t wait to be able to cook for her little baby dolls.  I am hoping that this camp will also provide her some social skills for the transition into first grade in the fall.   

Us

So this April Gary took the leap and had the Gastric Sleeve surgery, I am proud to report that he has lost 60lbs to date and continues to strive to be the healthiest he can be every day for our family.  His back pain seems to be getting better, so this is a HUGE win!  On a more difficult note, being the primary breadwinner Gary has been under a bunch of stress because we have been struggling financially for so long now.  Especially since he was out of work for 6 weeks.  We always make do with what we have.  We are just tired of living paycheck to paycheck, and with minimal finances coming in from my two part time jobs, there would be no way for us to put the kids in before and after school and be able to afford it.  Just our grocery bill is astronomical every month, especially every summer.  I am trying to get a part time job (to alleviate some of the financial stress) that will fit my schedule (Monday, Wednesday and Friday’s from 9am-3pm) but it seems that no one is willing to work with my schedule.  If anyone knows of anything please PM me. 

I have finished up my last spring semester and I am happy to report that I only have THREE more classes until I have a college degree!  Sadly, those three classes are, History, Biology and Statistics.  YUP...I saved all of the best for last!  I was going to attempt to take the Statistics during Summer II, yet, I am feeling that I really need a break from school work, so I might drop it and enjoy the R&R this summer.  With all of the stress that I have been under with the passing of my Aunt Nancy (who was the grandmother of Kayla and Anthony) I feel like I am needed more at home (and with them) this summer.  With all of this stress my Psoriatic Arthritis has been at epic proportions and the joints in my right hand are still more swollen then they should be on weekly Humira injections.  Due to the stress of everything…I just finished my second round of shingles.  (YUP…I am one lucky girl over here!)  Between the swollen joints and the pain of the shingles on three sides of my body, I have been in agony.  The excruciating pain has subsided, now just a right shoulder ache remains.

Now…my hands are tired but if you have read this entire post, I thank you for being part of our “Village” the constant support from you is what keeps us going. 

Just Simply…Thank you!

#WatsonPartyofSix  

SO much to be THANKFUL for this year!

Hello Villagers!

Welcome to our NEW blog!  Goodbye to "My Two Amazing Boys", hello..."Watson Party of SIX"!

Here is a long overdue UPDATE! 

What an amazing summer #watsonpartyofsix had!  We went everywhere that we wanted to go.  Which was an absolute blessing for "The Little's" to feel more at home in their new environment.  We started out with a week in Northern Maine visiting The Houlton Fair, Mardens, Houlton Dairy, and Portage Lake.  With Smores on the campfire every night, it was just what we needed to celebrate the end of a long school year.  We toured Boston and even took the entire family to a Redsox Game.  

We had weekly visits to Davis Farmland, the Beach and took the kids to the ocean every chance we got.  We taught the littles how to swim, kayaked at Mirror Lake and went to various amusement parks all over New England.  It was an absolute treat!

Spencer

Spencer started Sixth Grade this year at AMSA (American Math and Science Academy) Charter School in Marlborough.  He officially hates us as we took him away from all of his friends in our hometown.  I am happy to report that he is finally adjusting well and he is starting to actually enjoy going to school now.  (And well…he loves having a cell phone as well!)  He has taken a break from sports in the interim and we signed him up for some fun afternoon clubs, which has helped with some adjustment.  He is really looking forward to starting basketball and snowboarding this winter.

The Little's

I am happy to report that BOTH Kayla and Anthony have graduated from trauma therapy to regular therapists.  They were both Baptized recently and had quite the shindig. 

UPDATE on their Parents:  Mom is still MIA, she hasn't seen or spoken to either one of them since before last Christmas.  She then was MIA for our court date in January.  She did contact me several days after the date that she was suppose to appear in court.  She was suppose to provide me with a consistant schedule to see the children, and has failed to do so…SO...I am happy to report that the judge has granted Gary and I FULL GUARDIANSHIP, which entails us to be approvers of ANY and ALL visits at this time.  Their father Dave, contested our guardianship in court in January and after mediation and discussion with our DCF clinician, Gary and I promised (verbally) to allow him back into their lives.  (In return, Dave, signed over his FULL LEGAL guardianship over to Gary and I.)  They have been building their relationship with him, which has been wonderful to be witness of.  He has gone to Anthony's basketball games, and Kayla's dance recital and has even brought his family members to his weekly visits with them.  There is room for a lot of improvement but its actually something that they look forward to every week.  They even count the days!  So, although Gary and I were only looking at the short term plan, I AM HAPPY TO REPORT THAT…”The Little's are here to stay!”    

Anthony

Anthony has started second grade this year at our elementary school.  He still struggles to feel like he fits in here in the house.  His biggest challenge currently is his relationship with Spencer.  Spencer and him are both very competitive and all Anthony wants to do is look up to him and to be his shadow.

Anthony is also still continuing with struggling socially and with his constant appetite.  He often eats enough to make himself sick to his stomach.  This still makes me sad that they compulsively eat because they now have access to food more regularly than they have had before.  To help him work on his social skills, he has been signed up for Cub Scouts and CCD, and is looking forward to playing Basketball this Winter.  

Kayla

Kayla is doing much better with the loss of her mother in her life.  She is currently is enrolled in CCD, and honestly I needed a break from dance classes this season.  We will sign her up next year again when she decides what she would like to do.  


Kayla continues to struggle with her Severe Attachment Disorder so I am not sure that we will be signing her up for Girlscouts until next year.  Kindergarten has helped in this area, plus we might also be signing her up for basketball this winter.  

Tucker

So...lets start with...Tucker's heart looks GREAT!  Which has finally has been a relief, but we know all to well that there will always be ebb and flows in this area.  Tucker has not had a repeat SVT episode since the Summer.  At our last Cardiology appointment we presented all of his portable EKG's for his cardiologist to review.  They all came back within normal (well…HIS normal) limits.  So, right now, we are back to 6 month clinic appointments.  We have also been looking closer into Tucker’s “Developmental Delay” diagnosis in the Cardiac Neurodevelopemental Clinic.  We have had him re-tested and again, we have added a multitude of developmental diagnosis’s.  After a recent conversation with his teacher and multiple attempts at avoiding the subject, we have decided to put Tucker on medication to help with his severe anxiety and to help him concentrate better in school.  Now he doesn’t sleep…I swear, we just cant win!  LOL  Tucker also received a far sited astigmatism diagnosis from our family eye doctor this month.  

He has been reluctant to wear his glasses because he is afraid that kids will make fun of him, yet he tells us that he can finally see the words so that he can read.  ;-(

US


Gary

Gary continues to work days and has been enjoying more time at home with the kids.  They have missed him terribly since he was working all of the time.  He has transitioned into a “Mr. Mom” very well.  He is now a pro at braiding hair.  😊   Some sad news is that our only car that fits the entire family, his Ford F150, has completely died.  We are fearful that it may be the transmission, as it seems to be slipping out of gear while we were driving it.  The last thing that we need is a NEW car payment RIGHT before CHRISTMAS!   

…and lastly...there's ME!

Ugh…School is back for me as well.  This semester I decided to take 3 classes this semester, bad choice on my part.  I thought that I signed up for a bunch of easy classes…NOPE!  They are some of the hardest that I have ever taken.  Although I am learning a lot, almost all of my free time is devoted to reading and writing essay’s.  I have been sick these last few weeks and have fallen behind in my schoolwork.  My professors have been amazing and have allowed me the flexability to pass things in late.   

If you know me well, you know that take pride in my skin.  I have often told the story of my aunt who doesn’t seem age, or my love of all things soap.  Hell, how do you guys think my soap company started?  I am literally obsessed.  The “real” story, my paternal family genes are quite strong, and I have inherited my father’s attitude and his autoimmune disease which is called, Psoriatic Arthritis.  The remedy to throw these flareups into remission is weekly Chemotherapy injections which make me SICK beyond sick!  I am currently on a 6 week trial of Methotrexate and there seems to be some relief, but I am no where close to being pain free.     

Lastly, many of you have reached out to me and have asked, “What can I do to help?”  We have always been grateful of our village, and I swear, it is “Our Village” that has gotten me through the rough days lately.  There is so much that we need right now, as our savings has dwindled, and our debt has grown exuberantly.  With all of this recent car trouble, we are just trying to stay afloat for the holidays.  So, at the request of several family members, I have compiled an Amazon Wish List for the kids for Christmas.  These are just a few things that they are hoping are under the tree this year on Christmas morning.  Should you like to contribute, please feel free to access the Amazon wishlist here...Amazon Watson Kids Christmas Wish List

http://a.co/aLQ0deC 

Happy Thanksgiving to you and yours!

Dreams do come true...now...MOVE THAT BUS!

This past Sunday at 9am I was standing at a register when Walgreen's opened to pick up a prescription for one of the kids.  A very dashing man came in dressed from head to toe in brand new Under Armor clothes, which seemed out of place on his all business physique.  He was showing a picture on his cellphone to everyone with whom would look and asking questions about the area's open late night convenience stores as he was from out of town and not familiar with our area.  I cant tell you what struck me more, the desperation in his voice or the pain that was so visible in his eyes.  My heart still breaks for this man, who's parting words to us (with fear in his voice and tears in his eyes) were..."I just want to find my son!"  It was then that I realized how widespread society's drug (and mental health) epidemic truly is.  As he drove off in his brand new Lexus, I wondered how many times he has driven around and searched for him.  It wasn't until he drove off did I realize how parallel our lives were.  Just a few minutes of a conversation and yet days later...I can not get this out of my mind.  Moral of the story is..."Don't ever think that this lifestyle won't effect you!" 

An Update.
We had the most amazing Christmas!  The kids said SO many times that day..."This is the BEST DAY EVER!"  So to my wonderful village with whom it would never have been possible without...Thank you SO much!  Watching them enjoy the day so much was our best gift ever.

Spencer
Spencer is doing well.  He has taken this season off of sports to concentrate on his academics as he is still playing some catch up within his Math and Reading areas.  We are very proud of all of the progress that he has made so far this year.  He also recently signed up to be a "son" in his Middle School's production of Disney's Mulan.  Were hoping that this will help his self esteem, as he is very shy sometimes around many of his peers.  He continues to fight me every Sunday morning when its time to go to CCD, I might bribe him with donuts after he attends class.  He also continues to attend Cubscouts, and this year he will be crossing the bridge to Boyscouts so we are looking at the two different troops in town and choosing which one that he will be attending this month.  He is also going to be playing Spring baseball.

Tucker
Tucker is also doing well in school.  He complains that he doesn't like it and that it is hard, but he continues to do well academically.  His behavior continues to be an area that he struggles in, however his tantrums and visits to the principle's office are becoming more infrequent.  A few weeks ago he did come home with a letter saying that he was going to start working on more Empathy.  What can I say...He is no doubt his mother's child.  :)  This week we had a followup in the Cardiac Clinic at Boston Children's Hospital where we discussed the several "Cyonotic AKA blue" episodes that he has had since his last visit to the Clinic.  These episodes are few and far between and only come on with exercise.  So the question is, "Is this Tucker's new normal?" or "is there something more going on?"  During physical activity, he will say things like "my heart hurts!" or he will just sit down where he is for a minute until it subsides.  SO we were advised, if these episodes are SVT episodes that the only way to capture this would be from an EKG machine.  THANK GOD for technology has come SO far, and they make a smartphone EKG app and a device that connects to your smartphone that is FDA approved where you can register the episode and send it to your cardiologist to read.  After an amazing donation from a friend, I have purchased one of these devices and should have it in hand by the end of the week.  (We might buy a few more for school to have as well) I have spoken with the school and everyone which has any interaction with him to look for the signs of these SVT episodes and to call me ASAP should one occur again. 

The Littles
SO as some of you may know, Gary and I now have permanent guardianship of BOTH of The Little's.  We will continue to support them both until they turn 18 as long as their is not another contest from either one of their parents.  I am hopeful that they will remain with our family YET ready to fight if needed.  Fingers crossed. 

Anthony
Anthony has been doing fantastic in school, he has been playing a lot of catch up since he was previously home schooled.  He is now comfortable in his class and we could not be happier with the selection of his homeroom teacher.  She is taking a little extra time with him every week and helping him to learn to read.  He has also recently been reading a book nightly to Tucker and his sister.  He is continues to enjoy reading and is often proud of himself when he finishes a new story.  With all of the testosterone in this home now, there is no doubt that the "boys" are often fighting over a toy or fighting over who was first in line to brush their teeth.  All I can say is that Gary and I have learned to pick our battles.  (More development to come in this area)  Anthony has also had about 4 (supervised) visits with his Dad, as per our discussion with DCF and the judge since our last court visit.  All of them have gone very well and Anthony looks forward to them every week.  His trauma therapy continues biweekly and he is currently working on how to deal with his frustrations with not seeing his Mom regularly.  Also, we found out recently that poor Anthony has a severe Amoxicillin allergy that landed him in the ER TWICE within 24 hours.   We are armed with an Epipen just in case now.   Allergy testing is again on the books for him in the Spring.   He also continues to enjoy CCD classes.  he begs me to go every week which is quite the change from our boys.  

Kayla
Kayla has been doing well.  She has continue to pursue making friends at all of our weekly activity places that I bring her to.  She loves her dance and gymnastics class that she is currently enrolled in.  She is really looking forward to her recital this June and we have started talking about her upcoming birthday party in July.  She has also tested off the charts with her preschool testing.  (Testing at a 7 year old level) She continues to work on social things around schooling where she struggles.  I will be filling out kindergarten paperwork for her this week for the fall.  She has had two visits with her Dad which have gone well.  She continues to struggle with sharing him with her brother and often regresses like a baby to get more attention from him.  The last time that she had seen him she was an infant.  It's going to be a LONG learning process.    Kayla continues to attend her biweekly therapy sessions to address her SEVERE attachment disorder and to talk about her abandonment issues regarding her Mom.  We are finally at the point that she doesn't cry herself to sleep nightly, which is SO much of an improvement than before.  She is looking forward to playing her first sport in the Spring. 

The Others (Shout out to my LOST peeps!)
Just so you all know...My cousin, The Little's Mom, also has two older children (which are currently staying with other family members) with whom are NOT taking this transition very well.  It is hard to parent yourself for years (and your younger siblings) and then live in a home with structure and rules as an older teenager.  Both of their guardians have been through hell these last few months.  So please pray for my family member's sanity at this point as they have some very difficult decisions for the teens to make on their behalf over the next few weeks.   

US
I have married the greatest man in the world.  He continues to work two jobs everyday (from 6:30am-10pm) to make it possible for me to stay home with the kids.  He is getting very tired, so I am going to be looking at trying to get a flexible summer job to try to take some of the load off of him until I can go back to work full time.  Lets be honest...I am SO not a stay at home Mother.  I kind of think that I was physically made to work full time.  I thank my family for instilling a hearty work ethic in myself.  Because I have never felt so useless not contributing more finances to our joint bank account.  We are barely getting by it seems, however, it is what it is... and TEMPORARY.  I continue to take night classes at QCC twice a week, which is a nice reason to get showered, dressed and get out of the house among other adults.  Also this month, Gary and I were getting sued by a jerk that Gary hit in an accident almost 5 years ago.  Our insurance company deposed us, and we were all set to go to trial, the jerk settled with our insurance company for $28,000, almost $100k shy of his original request, one hour before the deadline.  Although he had only $9,000 in damage to his late model sedan.  This case has required us constant stress and caused more sleepless nights as we would have had to pay out of our pocket anything over our 100k policy.  SO we are thrilled that this nightmare is finally behind us. 

FINALLY...some much needed R&R...AND...Move that Bus...!
Well...I have saved the best news for last...!  Late last year, Tucker was submitted to the "Make-A-Wish" foundation.  Our two wish granters, Barbara and Marilyn came out and spoke with Tucker last Fall to determine what he would want to do for his wish.  After a conversation where he told them that he wanted a ball...and then a bike...He told them that he wanted more toys, more Lego's to be exact!  So they came out again and brought him Lego's and told him about Legoland in Florida, and he said that he wanted to go there for his wish...SO Orlando...I hope that you are ready for "Watson Party of 6!"...because we leave next month for a week to do all FLORIDA things a kid can do. 

FYI...We will be keeping this on the DL with the kids because they will want to go everyday they wake up and honestly, sleeping has really been an issue for every single one of them.  So our plan is to have the "Make A Wish" folks here and tell them the night before we leave.  And if that wasn't enough good news.  ALSO, while we are gone, we will have a contractor make all of the kids their own individual space in our home.  Goodbye to my large Master bedroom, sigh...  This will take a lot to pull off in just 6 days...so if you are willing to help, please reach out to me and I will add your name to the volunteer list that I have already started. 

Again, thank you so much for all of your calls giftcards and wonderful messages of support to our new family.  It is just like a HUGE hug to know that we are SO loved by our AMAZING villagers. 

XOXO
Much Love,
Michelle, Gary, Spencer, Anthony, Tucker & Kayla

An update.

OMG...Where to begin?

Just in the past 7 days, My family has been through HELL!  I can not say too many things publicly, what I can tell you is that everyone, especially DCF, has underestimated how broken all of these children truly are. 

Now onto what I CAN tell you...

Spencer
After several meetings with Spencer's school RE:his IEP, I am proud to report that Spencer is doing fantastic.  He has made significant progression and has excelled so much in the last few weeks that some of his pull out services have been reduced.  His reading is finally at grade level, which I couldn't be more happy with, but it has been an uphill struggle as he still doesn't like to read.  We have also recently completed an application to place Spencer in a local charter school, since he excels in Science, and we think that it would be a better fit for where he wants to be in the future.  Sadly, we have also had to increase Spencer's therapy visits as he is really struggling with his OWN space since the "Littles" have arrived.  We are looking into putting up some walls and giving him his own room in the long term.  We also allowed him to take a season off from sports this winter to focus on his accademics. 

Tucker
So this week we had a followup to Tucker's Cardiac Neuro Deveopmental Testing, and surprisingly, Tucker was NOT diagnosed as being on the Autism Spectrum.  Although Tucker has MANY of the symptoms, he is still classified as "Developmental Delayed".  These symptoms can also fall under an Auditory Processing Disorder.  So Dr. Henson suggested seeing both a neurologist and an audiologist as he already has hearing issues.  Many of these things can be managed in the classroom, yet, there will have to be certain amendments in place in his IEP to cover these exceptions once I have the report in hand.  We are still waiting to see if Tucker had another cardiac episode like he did over the summer.   Nothing just yet,  we have a cardiology workup in January.   He also has a dental appointment coming up as well, those are always fun!  (sarcasm)

The Littles
Both of "The Little's" are doing well.  There has been quite the adjustment for both of the kids to have no structure in their lives and to have been placed in a home where there is a strict routine has certainly been challenging.  Due to the nature of the removal from their home, K and A have exhibited some strange behaviors of late.  I have contacted trama specialists on their behalf our first appointment luckily could be squeezed in this week.  As for the status of their mother, she has blown off more than she has attended of her visits this last month.  She continues to ignore the children's phone calls and says that she is "working" or that her phone was off.   She has not even made an active attempt to finalize seeing her Children for Christmas.  Yup...she breaks their little hearts on the reg! 

A
A recently celebrated his 7th birthday with us, sadly at the end of the day, he asked me if he would be living with us for his next birthday as well.  His response was painful to say the least..."Well, I hope so, this was the best birthday that I have ever had!"  And we didn't even do much this year for any of the kids birthdays. 
I received his educational testing back and like I suspected he is delayed in regards to his peers.  He is showing that he has the ability to perform like his peers, and he has just lacked the exposure to things like writing on paper and peer socialization.     
Medically, He is up to date on all of his vaccines, yet, he has recently been diagnosed with several cavities (they stopped counting at 5) and will have to go under sedation at Boston Children's Hospital to have them all  fixed.  There is also the situation RE:Tree Nut Allergy, their mom says that he has one, yet there is no documentation supporting it.  So, testing for this to make sure that it is a true allergy, begins at the end of January.  He also came home the other day beeming from EAR to EAR, he was chosen to be music's  student of the month, also the simple mention of getting invited to a birthday party was also enough to make his day AH-MAZING!  Also, I am proud to say that although he has issues around being shown any type of affection or love, he did tell me that he loved me the other day after my boys said it to me.   Baby steps. 

K
Well, let's just say that this little girl is brilliant in compared to her peers.  They had to stop her testing at the 7 1/2 age level because that's where the preschool testing ends. (I guess that there is something to be said about being parked in front of a ipad all day everyday when she was with her mother)  Socially is something else entirely, however, she struggles to play with her peers.  She would rather play alone.  So very sad.  So, I have started to take her to the local play school here in town to become more socialized with her peers. 
She also received a great dental checkup, and I am happy to report...ALL VACCINES are now up to date...Whew!  There seems to be ALOT of separation anxiety daily with her.  She is often time so close to me that she bumps into me if I stop short.  Also there is also something about her appearing in the bathroom that creeps me out. 

Now to the not so great news...Out of the blue, the birth father of both of the children has called DCF(Which are only involved because they had an open case under the kids mother) and would like to pursue obtaining permanent custody of both of the children.  Now just to give everyone a little background on this situation.  Their father hasn't been involved in their lives in almost FOUR years!  Thats right, he hasnt seen A since he was about 2 1/2 and K since she was about 8 months old.  Several years back he was ordered to attend supervised visits with the children and he did not comply to those rules, and hasn't paid any sort of child support almost that long as well.  Even being paid partially under the table so that he can pay less child support for them.  He is a known drug dealer and apparently has claimed both children on his taxes the last FOUR years!  OMG...WE HAVE A REAL FUCKING WINNER HERE...!

Our next court date will be in January and I am beside myself.  I will be going to the lawyer of the day after Christmas in the Worcester Probate Court to see what I can do to make sure that the kids rights are protected.  I also will be petitioning the court for the judge to assign a Guardian at Lightum to speak on their behalf.  We will also be asking for permanent custody.  

Let me finish by telling everyone how humbling these last few months have been on our family.  I have heard that it takes a "village" and I wouldn't be able to help these kids without the amazing support of my wonderful friends and family.  The notes of support (the monetary donations, gas cards, bottles of wine, groceries and the endless Christmas gifts) that seem to arrive just when I am about to crack under all of the daily pressure have kept me motivated to continue this fight.  From the bottom of my heart...THANK YOU!

Clearly, Gary and I have alot of work cut out for us, however, all of these people don't know who they are dealing with!   
 
SIDENOTE: As we compile our court case, If anyone would like to write the court a Letter of Character Reference for either Gary or myself, please send it to one of us and address it to the following:

Worcester Probate Court
225 Main Street
Worcester, MA 01608

Tis the season

So here we are...less than three weeks until Christmas, and I am a friggin nightmare.  Let's be honest...I was a mess with TWO kids...Now with FOUR...Well...you get where I'm going.

I honestly hate this time of year.  I never know what day it is, I am always messing up my "To Do" lists.  I went to the store 3 times since Monday and forgot to buy milk EVERY SINGLE TIME this week.  AND THE SNOW IS COMING!  Don't get me wrong, the declining warm weather brings back some great memories of vacationing in Maine when I was a kid, yet...there are always some not so great memories that come back too.

Someone once asked me, "What will be the greatest gift that you can instill in your children to leave this world a better place than the way that they found it?"  And for years, I have thought about that...What would be the ONE gift that I could give them, which would allow them to leave this world a better place?  And although, this is still a CONSTANT work in progress...especially for Tucker, I think that we have found the right answer for us.  I would want them to be Generous yet Humble, in all that they do.  Because at the end of everyday...I am floored by the outpouring of support that has been shown towards my family over the years.  God, how lucky we are to be surrounded by people who constantly check in with us to see how we are and see if we need anything to make our lives a little easier.  What a wonderful gift. 

So this year, I am going to try to not worry about all of the little things, and I am going to try to enjoy all of " the little things".  Which is staying "true" to my new years resolution from many years ago..."Simplify your Life"  I will make this season spectacular and I will try to make it the very best that I can, even if we can't do everything that I try to cram into a weekend.  We have already made tons of memories for "The Littles" that they will remember this holiday for a lifetime.

Cheers to a wonderful holiday season!
(UGH...and I just realized that we haven't seen Santa yet!)

"Watson party of six?"

Have you ever stopped and thought about change?  The actual definition of the word is "to make or become different."  Well...to sum up that thought...The Watson's have had some BIG changes recently.

I will attempt to start at the beginning so that you will understand how quickly things happened...several weeks ago a family member physically assaulted one of her children. As a result of the incident, the local Police were called to a campground where the family of 5 was living in a dilapidated camper and in tents.  The child, whom was assaulted was temporarily taken in by the children's grandmother.  Because DCF (Department of Children and Families) was already involved with the children while they were in their mother's custody, they were called out to his new residence due to it being an ongoing investigation.  The DCF investigator heard what she considered " a lot of concerning information", yet, DCF did not feel that the other three children were in imminent danger.  Our family, however; disagreed.  It was evident that there were honest living concerns with how these children were existing.  So, three members of our family went to probate court and filed for the children to be removed by the state police through emergent temporary orders immediately.  Myself, and two other family members, went before a judge and each of our individual requests were all granted. 

SO, the Watson family is now; a family of SIX. 

Based on the method of removal from the home, being that the court removed them as opposed to DCF, there are no funds available to help us care for them. "The littles" as I will refer to them for legal purposes (as I do not want to print their names) are great kids and are adjusting well.  This has, very much, been a period of transition, especially to our daily routine as we acclimate to living together.  Tucker and Spencer have been instrumental in helping the littles adjust to living within the Watson Home.

 As most already know, I decided to leave my job earlier this summer, as a result of some ongoing health concerns with Tucker.  Thankfully, Gary works two jobs to help provide for our family, but I fear that it may not be enough.  The littles came into our home with little to no belongings.  We have received a large amount of donations, in the way of clothing and toys, from close family and friends. Please understand that, due to the circumstances, very few people were aware that any of this was taking place.  We felt that a close, quiet, transition was in the best interest of the children.  These children have been in a very difficult situation, for a long time. Sadly, they were blissfully unaware, of how little they had, until they began receiving the donations. Something as basic as three square meals a day, with snacks whenever they want one, has been the biggest adjustment. They eat as though they have never eaten before.  Which, with only one of working, has made the grocery bill substantially more than ever before. But, I want these children to know, that although they just ate dinner, they will never know the feeling of hunger again. Nor, will they ever have to worry about the most basic necessities, such as a warm bath and clean clothes.

But, as I said, with only one of us working, things financially are very tight.  We have received help in the way of gift cards for groceries, some monetary donations, clothes, shoes, coats, toys and books (which is by far, their favorite of all).  These gifts are a God send and are so desperately needed. We, as a family, want to give these children all that they deserve, which is hard without the potential of financial assistance from DCF, and only one of us working. Although, it is my intention to return to work, for the time being, it is important to be available for all four children, and especially to be with the little one who is not old enough for school just yet. These children have been through so much, and for the first time in their little lives, they have their own beds, their own things, and unlimited access to food and shelter. They have a home.

The kindness of those who have already reached out to us, has been the most humbling experience.  The generosity of the people in our lives is unprecedented and will truly never be forgotten. We still have a very long road ahead of us, but in true Watson style, we will take each day as it comes and see it for what it truly is; a blessing.   

Adiós Appendix

Spencer went into surgery just before noon today.  The surgeons concern was that they could see a large area of fluid, which could mean that the appendix had perforated, or it could be the start of appendicitis.  Either way it has to come out, so that it will.  So around 10am they brought us up to the pre-surgery area.  Spencer has what we now know as "severe anxiety"  could even be PTSD of sorts.  Especially now that he is getting a little bit older, he is starting to understand how serious Tucker's heart condition really is.  He was terrified from the moment that we stepped foot into the ER.  Even going far enough to ask Gary and I if he would have to get shots or have a big boo-boo on his belly like Tucker.   It broke our hearts...

We were blessed to receive a Linus Project Blanket in the pre-op area.   Spencer was so cold, so it was very much appreciated as we arrived in the ER with only the clothes on our backs.   WOW...the irony.   #warminghearts

After a little over an hour...Spencer's surgeon came to the waiting area and advised us that they had just got his appendix out before it burst into his plural space.  It was huge and had been large and growing for quite some time.  At Spencer's request, he wanted to see what it looked like,  as the surgeon said... it looks like a little worm.  Looks more like a giant snake to me.   

So after many rounds of anxiety and pain meds,  The anesthesiologist finally listened to Gary and I and agreed to let us take him home.  By then...Spencer's anxiety was epic, and the little girl that had just got tubes in her ears was not making his anxiety any less.  (So thankful that they moved her across the floor to make him more comfortable)  So we woke him up and tried to get him to eat,  nothing.   So they discharged him home to finish recovering.  Per MD orders, he had to take it easy for a while and no sports or running until we see Spencer back in clinic next Friday.   

Feeling so sad that this had to happen to our little boy.   #blessed #nosleep #goodnight

So...This just friggin happened...

So...I guess it's time for another update.  I have been very vocal about not being a "mini van driving soccer" mom.  Hell if you know me at all, you would say how accurate that statement really is.  I swear that this GIANT black cloud keeps following our family. 

Yesterday, we had a typical day, I took the boys to the $1 movies and then out for some errands, then to Davis Farmland, they jumped and played all afternoon.  When we returned home, Spencer complained of a belly ache, as he sometimes does when he doesn't eat, so I made him dinner and he refused to eat it,  I have him a freeze pop and then he went to bed.   Around midnight, Spencer woke up screaming in pain, begging me to take him to the hospital, which was the first sign that something drastic was wrong.  I drove him to Clinton Hospital and we were there for maybe 15 minutes and he was wailing in agony.  They placed an IV line in his elbow and he couldn't stop screaming about it hurting...It was constant.   He was terrified!  So after some blood work, Zofran and an attempt at starting some hydration... we were transferred to the pediatric center in Worcester at UMASS.  Before we left they habe him some Tylenol for his pain,  which really helped his headache subside.

Spencer talked the entire ride to the EMT, asked a bunch of questions about the supplies on board.   It was cool to see him so inquisitive, but when asked, he politely declined that he would go info the medical field.  

Once we got in Worcester,  Spencer screamed for hours over the pain.   After they gave him his ultrasound he received morphine,  which had taken hours to work.   They pushed some IV  antibiotics and we waited for the results...

They think that Spencer's Appendix has preforated due to a appendiceal lumen, or a appendixlumen.  Long story short... He is having emergency surgery to remove it, the course of treatment is very different if it hasn't ruptured vs if it has ruptured...please pray for the latter.

BIG Changes are COMING!

Oh universe....I HEAR YA LOUD AND CLEAR!

I cant help but wonder why on earth it seems that some people have these lives that nothing ever phases them.  The see rainbows and win big on scratch tickets.  From the outside looking in...TODAY ESPECIALLY...I wish that I was one of those people.  Today was a difficult day for all of us.  After days of constant tears, Tuckers night terrors, and wondering what the hell should we do...I walked in to my office and had a very difficult conversation with my boss.  My position is just not possible to keep at the newspaper with Tucker's current situation.  It brings me too far away from him and that is just too unsettling for this mama bear.  So after a very difficult conversation with our daycare provider, with whom we love, we have decided that the best thing for us to do is for me to stay home with Tucker.  Because at the end of the day, I couldn't live if anything happened to him outside of my care.

I am not sure what is next down the road for me in the way of employment options, but I know that there is something out there that would be perfect for this heart mom.  The only prerequisites are that it would have to have mothers hours and be extremely flexible during flu season, because at the end of every day...This little cherubs face WILL ALWAYS come first.