Will someone please remove the knife from my heart....round 2 of the neuromuscular clinic tomorrow Sept. 4 2015

Maybe this time we will find another clue to the mystery of Jack's disease, or better yet a diagnosis when we attend the Neuromuscle clinic tomorrow at Colorado Children's hospital.  Most likely we will head down the same old familiar road  of endless MRI's, EMG's ( which are painful) and another request to do a muscle biopsy, which I just can't put him through again.... 3 years later the fear of the unknown has only been exacerbated by 6 hospital stays this year and more flare ups than ever before.  But I haven't lost hope of finding a diagnosis for Jack and will continue to fight the phantom demon of a syndrome without a Name for Jack and all the other kiddos out there fighting for their lives!

God is good... I will continue to praise him in he hallway until  another door opens...

Repost from Nov. 2012........I would still like someone to Please Remove the Knife from my heart

For the 1st time since we moved to Denver we are finally at the Children's Hospital for our 1st Neuromuscular Clinic visit.  We are cautiously optimistic that a new set of eyes can bring a new perspective to this mysterious illness....

After doing this hundreds of times......I don't mean to be rude to all the clinicians, therapists, misc medical staff.... but this isn't my 1st rodeo.....

We've been down this road so many times....... the questions all the same, our responses to the questions all the same... sounds like a broken record, and frankly I don't have the patience anymore....

I want to record my responses and push play.....but for the sake of Jack I try to remain cordial, but even he is tired of the game... look up/down, hop on 1 foot, run down the hall etc.... and 5 hours later we are at the lab for more blood tests, genetic testing and our hopes high that maybe this time... just this time... we may have our answer.....

But none of the above are why I have a knife in my heart...to us that is all routine, part of our daily existence...

The knife is in my heart because the older Jack gets the more he understands words like "disease" and "disability".....Can't the medical staff just talk in code....I hate that he has to hear those words over and over....he is older now and understands them...

Which leads me to the knife in my heart....

Yesterday at the clinic he asks "Mom, when I get married and have a son or daughter-can they get my disease?" I fight back tears ...that a 10 year old boy can have so much foresight..... and I tell him the truth which hurts so much.  "There is a chance buddy-but genetics are a funny thing-anything can happen good or bad."  After all, my husband and I do not have a disease-Jack's genetics are just a freaky make up of our screwed up genes....the Russian Roulette of the genetic pool.

So friends when you see me......

Please remember to remove the knife out of my heart-as it aches so much for this incredible, amazing little boy with so much wisdom, foresight, and compassion well beyond his 10 short years.

A Bill of Rights for Parent's with Special Needs

A Bill of Rights For Parents of Kids With Special Needs 
We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.*

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to blast Flo Rida/Eminem or any musician, down a glass of Reisling, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to go through the grieving process and realize we may never quite be "over it."
* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Reisling.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to bawl on the way back from the football field, soccer game, "select baseball" tournament or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research current fashion trends, yoga workouts, or anything not related to our children’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.


* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

September 24, 2015 G-Day!!

 September 24 is G-Day... what is G-Day you ask? Jack's GENE SEQUENCING reveal...  For 10 years we have been on this undiagnosed journey... and now, in just a few short weeks, we may finally learn what disease has wrecked havoc with our lives since Jack was a little boy.... I have been waiting for this day for so long....the process to even getting the test compleyed was a year long Oddessy in itself.

As the day approaches, I have never felt so conflicted in my life!  One minute I'm estatic we may finally have the answer to our prayers and the next minute I'm terrified... we may finally have the answer to our prays! Regardless God is Good!!! We will praise him in the hallway until another door opens...

For those of you who have been in our lives and those of you we have recently met... thank you for all the love, support, and prayers we are forever indebted!

Stay tuned my friends... I'll be updating you all soon!

#musclediseasessuck

Round #3...... Back in the hospital again... 3 times in 3 months... That's a record even for us.... see what is "normal" for most kids... say a stomach virus...it may last a day or 2... They rest at home and all is well.....NOT Jack... Stomach virus =vomiting=muscle breakdown (a.k.a.) for those that are medical savvy "Rhabdomyolsis"= permanent muscle damage, kidneys and liver attacked ..severe pain, which require heavy IV fluids, and days in the hospital!  Poor guy!!! My heart breaks for him... He just wants to be a normal 11 year old... Is that too much to ask???......

Great Insight and hope for parents with chronically ill kids

http://barrentoblessed.wordpress.com/2013/06/19/dear-parent-of-sick-child/

Notes from a Zebra Mom

We have spent much time in the hospital over the years. We have learned to live with a zebra life, which in no way resembles the lives of families with “normal” children. Those of you who are in the zebra world know exactly what I mean: Nothing is what you would expect. Everything is a complication, a potential complication, or a crisis. The details differ from disease to disease, condition to condition, but one thing remains the same: There is no “normal” day for us. 

We are all working so hard to help our kids survive another day, week, month, year. Which means we have to find the best doctors, the best medical care, raise money for research, and try to network with the other parents who have kids with the same disease.

But then there is our real job: helping our children be “more than a disease” to themselves and to the outside world, and standing between the people who may say ignorant/cruel/uninformed things. Sometimes even a doctor at a hospital can forget there is a person attached to the disease. (“Hey, everyone come in and see this really BIG LIVER.”)

We have to try to shield them and, at the same time, empower them as much as we can to have as full a life experience as possible. 

Undiagnosed and Rare diseases touch all of our lives, and it is our collective responsibility to fight for more funding for research, to commit ourselves to patient registries, and above all, to encourage our children to live as normal lives as possible. That’s the job of the parent ultimately, and for parents like us it’s always a part of our lives because every day is a Undiagoned/ Rare disease day.  PLEASE HELP us in our MISSION!  Check out SWAN (Syndromes Without A NAME)www.undiagnosed-usa.org

A Bill of Rights For Parents of Kids With Special Needs 
We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.*

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to blast Maroon 5/Santana/LMAFO/or any musician, down a glass of Reisling, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to go through the grieving process and realize we may never quite be "over it."
* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Reisling.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to bawl on the way back from the football field, soccer game, "select baseball" tournament or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research current fashion trends, yoga workouts, or anything not related to our children’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.


* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.