The Mayan People Were Mistaken

So, the world was supposed end, yet we’re all still here.  I guess that would be a good thing, being as I still have a lot of work to do on my life.  Right now, it looks pretty pathetic, I know.  Kids with disabilities.  A disabled husband.  No income, moving once, twice and three times.

Oh- you missed that, I forgot.  Yes, our move that we have been packing for has been postponed now three times.  Right now, the new house isn’t ready, the old house still sucks and half our stuff is here and there.  That is just the tip of the iceberg, really.  Lots and lots of work to do, I say……and I still have to do it since the silly Mayan folks can’t get their crap straight.

On the other hand, I do have small children.  The kids are beautiful and despite the fact that they do have their problems, they will be just fine in the end.  They are brilliant kids, they’re creative and social and sweet and loving.  They are not in the hospital with cancer undergoing Chemotherapy and just hoping it works.  They are not suffering from a fatal illness and waiting to pass away while their family watches.  They are running around causing trouble and doing what kids do.  As parents, that drives us crazy.  In reality, we should be thankful it is as it is.  It could be so much worse.

We also have an extended family.  I can’t say they’re the greatest family.  Like all other families, we have our issues, but we have family.  A large, faithful and loving family.  With our current income issues, they have sacrificed so much to keep us afloat.  They have given up so much of themselves and dipped into their savings and retirement with no reservations.  Many have no family- or family without the means to do what ours has done for us.  In fact- I once was that person that wandered with nothing and slept where  I could until I married into the family I have now.

With eyes wide open and the pending doom that we barely missed (according to a select group of people), I cannot complain.  I have an incredible amount to be thankful for.

I am not the one who makes New Year’s resolutions to break each year or who gets overly emotional at the holiday time.  But I can look at my situation and know that “this, too, shall pass”.  I can look and know that I have so much more than so many and for that- I cannot thank G-d enough! For that reason, I will pray with all my heart that, not only will I remember to thank the Lord each day, but that i will never forget to pray for those who have far bigger needs than I do.

Packing While God Is Laughing

FINALLY! We found a place to live……oh to breath without hacking and grasping for my inhaler! For a moment in time life is good.  Those moments are awesome!

As you have no doubt seen from my past posts, our awesome moments are few and far between.  You will rarely hear me complain, however, as we know people who have even less to be happy about in their lives.

With this awesome moment comes work, work, work, though! I have packed very meticulously, labeled every bin, stacked them in organized piles and am ready to go……yippee! I’ve learned that packing to store is sooo much different from packing to unpack; and I’ve learned that it is soooo much more work.  Perhaps this time around I won’t unpack a single thing other than what we need to wear.  Wouldn’t THAT be fun, LOL? I’m not sure the kids will think that’s much fun, they love their toys, and their noise, and all that other stuff kids love.  I guess I’m not sure I would be too happy if they didn’t have such things to occupy their time and attention, either.

It is so nice to have a moment of “ahhhhh”.  In our roller coaster style life, where so much is still unpredictable and in question, we have to be grateful for these little moments of gratification and pleasure- no matter how small they may seem to the world outside of us. And we are- ever so grateful!

Hopefully, in not too long a time, I’ll have more little happy moments to tell you about.  For now I’ll just revel in the moment of having a healthy place to live and eagerly await what our journey holds in store!

 

“You got to listen to the heavens, you got to try to
understand. The greatness of their movement is just as small as it is grand.” –
Grateful Dead, Walk In The Sunshine

 

….And Yet, God Still Giggles!

I suppose life would not be life as we know it if we were not thrown a few curve balls, right? I’m still awaiting the day I get the smallest of breaks with those silly curves.  We seem to be making God laugh so much we actually had a small earthquake a few weeks ago! Is that possible? Let that be your lesson, folks- DO NOT MAKE PLANS THAT YOU BELIEVE ARE SOLID– GOD WILL LAUGH….HARD!!!!

So as we stumble through our IEP process (yes, still), as we deal with diagnoses after diagnoses, as we attempt to live life on zero income (blessed are we to have supportive family), and as all plans we made blow away in the winds of the Big Sky Country, we encounter yet another challenge! Yes, that’s right, ANOTHER!

We rent our home, for the first time in a very long time, as we are yet another of America‘s travesties-lol.  It looked so nice and perfect as we skipped through our walk through.  Just perfect, other than a few minor tweaks to make it our own.  Mind you- we need a four bedroom with our situation, and in our area, four bedroom single standing homes are a treasure to stumble upon.  I have never in my life seen so many four bedroom apartments.  It is astonishing, really! So we took this house, as on the surface, it seemed so perfect.  Let me list the reasons that now, after ten months of watching it pile up, it is NOT so perfect…..

 

• The landlord refuses to fix anything
• What he does fix, he does not actually fix.  He is no Bob Vila, I promise you!
• We had to practically force the owners to put up a fence to stop neighbors from entering our yard and “borrowing” our things.  Not to mention they were under police surveillance, which makes one wonder……
• There are two- not one, but TWO cracks in the foundation.  The super fun cracks are leading to a severe mold issue and guess what? We’re beyond allergic to mold!
• There is no ventilation on the second floor of our home, as required by law.
• One window in our “energy-efficient” rental is broken, not to mention the several other nooks and crannies that allow cold air to seep in.
• The non-smoking rental was had been smoked in to the point that we had to replace all appliances and window treatments, even smoke detectors (at our own expense, of course).
• Mr. Landlord-Of-The-Year refused to paint walls upon move in, again we were forced to do that at our own expense due to smoke damage.
• We actually had to HIRE and PAY a cleaning crew on our own dime to help get the smoke out of the house, which you KNOW never works 100%.
• Now I see the house is listed for sale by owner.  How funny.  I hope and pray they show it while we live here!
• The roof on the garage is rotting.
• The backsplash was removed two months ago behind the kitchen sink, they’ll have fun fixing that later (hehe)

Wow- I could go on, but I’m overwhelming myself now!! With all we have gone through in our lives, I still somehow find this beyond immoral and have retained a lawyer who will be filing a lawsuit very soon- to the tune of  $15,000.  I’m quite certain they’ll have some trouble getting that out of people who don’t care to make repairs to their own home…….but the satisfaction of knowing they’re aware that it is not acceptable to treat a tenant in this manner will bring a smile to my face :-).

There are days when it is so hard to see that we will one day sit back and laugh at such injustice……and maybe we won’t, that is, after all- another plan that God didn’t make……..

 

There  is hope for the future because God has a sense of humor and we are funny to  God.
Bill  Cosby

Facebook (Photo credit: stoneysteiner)

Check out our FundRazr on Facebook.  Desperate times call for desperate measures, right? Well, we’re pulling out all the stops and praying that the future gives us the opportunity to pay it forward.  Every cent, thought and prayer is a true blessing from above!

via FundRazr on Facebook.

CONSIDER SHARING YOUR KINDNESS, CARING AND PRAYERS!

Below is our public Facebook page, you are each invited to join, like and visit often for updates!

Sharing Your Kindness, Caring, and Prayers.

For those of you not up to speed, our family continues to go through more than our share of trials and tribulations. 

Little Cody is still struggling to come back from his recent trial of coming off all his medication for Gastroparesis, and recently had an alarming choking episode. 

Cassidy is having a difficult time with the many transitions forced upon her by the needs of her family and some concerns have arisen about her own mental state.

Jacob has returned home from in-patient treatment for many mental health issues, and is doing well in school, but spends most of his off time in therapy.  We at home are take the brunt of his hostility.

Brian’s MS has caused disabling fatigue and pain; he is unable to work and spends the majority of his day indoors forcing himself to help with the children through his disabilities to free me up to keep everything else going.

 I spend most of my day between doctors, schools and governmental agencies attempting to make sure everyone has all they need- this takes me into the wee hours of the morning many days of the week; all while I struggle with my own very recent diagnoses of Fibromyalgia, which has left me bedridden and playing catch-up quite a few times.

Our lives are becoming more than we can manage.  We’re alone here in Montana with no family support and are unable to secure childcare.  As much as we love it here, we are making our best effort now to return to Michigan and be near our family to have the support network needed in a situation like this one, as well as to offer our children the most stable environment possible. 

The fact that we now have no income and physical disabilities prevent us from doing so ourselves, means we’ll be hiring a moving company and then securing housing, along with already incurred expenses we were trying to cover.

 

Please donate if you can, REPOST AS YOUR OWN STATUS  IF YOU HAPPEN TO BE ONE OF THE MANY ON FACEBOOK, for at least 24 hours, and ask your own friends to do the same! Help bring us back home and up to date….it would take so much stress off us and mean the world! Thank you all so much!!

The above is for those who have access to Facebook, where they can find our link to Fundrazr and a lot more about our story!

http://www.giveforward.com/ourreality

This is a link to our Give Forward fundraiser, which also gives more information about our story.

A Cup Full Of Help…..for all

hands across eternity (Photo credit: Leonard John Matthews)

Helpcup is a really interesting, and actually, really cool site I found while I was tooling around on the internet looking for resources one night.  How it works is that you open a free account and set up the whole profile thing- much like you did here.  Then you state your need, followed by what you can offer to others.  You can offer meals, companionship, prayers or whatever service you may specialize in.  You may or may not get you need met.  You may or may not be called upon to help another.  I just found it to be a really awesome way to ask for help WHILE having the opportunity to help others.  Clearly I’m not in a position to help financially, but I can do other things that I’m more than happy to do.  If you don’t check it out for our page, or even if you don’t need  help yourself, I highly recommend looking it over- maybe you’ll feel moved to help someone else out!

Our HelpCup.org Profile Page

via http://www.helpcup.org/GettingHome.

We need sooooo much help getting home that it is UNBELIEVABLE! You can read most of the story through our link, but just chalk it up to one of life’s super fun curve balls, move on, and keep praying, right?

If you aren’t able to help, or even if you are, please share our Helpcup page with as many people as you can….you never know whose hands it might fall into….God is always watching!

Thank you so much!!!!

Undone People On A Downward Spiral

Aside from a hubby with Multiple Sclerosis, an oldest with SED, and a youngest with Gastroparesis and Oral Dysphagia, I have a middle daughter who has anxiety that comes and goes.  Lately with all our super fun changes, it has gotten out of control.  She pic-pic-pics ay her skin until it is a bloody mess, throws tantrums that put our two-year old tantrums to shame and stutters like you would not believe!! It is unbelievable.  At any rate, she has now, at the ripe age of 7, come to a point that we have no choice but to treat this or allow her to walk around looking like the world’s youngest Meth addict while teaching our youngest boy how to take his tantrums to a whole new level.  There was one point when she was about 5 that we had really struggled with her anxiety and it just so happened that she struggled with anxiety and hyperactivity at the same time at the same time.  After avoiding medication to the point that her teacher could no longer handle her at school, both ourselves and her doctors decided we would try a very “mild” combination of Prevacid and a low dose of Dextroamphetamine.  WOW!  I don’t thing it took 2 days before the kid started staying up all night long– no, really, ALL night long– screaming, crying, scratching walls, ripping her clothes, ripping her skin, batting away at imaginary “bugs” in the air around her head and who knows what else.  This behavior lasted 24 HOURS A DAY for at least 3 FULL days!! It was like hell on earth for her father and I, let alone how she must have felt.  Multiple calls to the doctor led to little more that confirmation that she was experiencing a Psychotic Episode and our choice was to take her to the local psych hospital so they could put the kid in a straight jacket or sit up with her for days on end to keep her safe.  Ummmm, yeeeaaahhhh- we stayed up with the terrified 5-year-old kid for days on end.  When it all ended we found out that about 1% of the population who takes that particular combination of medication she was prescribed suffers a similar reaction.  In Canada the combination is rarely prescribed for that very reason.  AArrrggggg!!!!!

Give Forward

Moving! (Photo credit: enigmabadger)

Forever searching for a way to take care of everyone when times get to be truely tough for my family, this is an oldtime friend I have fallen back on time and time again.  Give Forward is a Fundraising site where you post your story and publish it.  You can promote it any way you choose.  We have done it through Facebook, Twitter, local newspapers, snail mail, email and pretty much any way you can think of.  Those who cannot financially help can send “hugs” here where they offer prayers and encouragement, which can mean so much when you’re down and out.  Sometimes I browse this site and my heart just hurts for all those who have it so much worse than my family.  I pray for the day I can help people like that.

FOR NOW- I PRAY THAT SOMEHOW MY FAMILY WILL DRUM UP ENOUGH HELP BETWEEN ALL OF OUR FUNDRAISERS TO GET THE HELP WE ARE SO DESPERATE FOR.

Raise Money For Medical Equipment To Support Brian and/or Emily Gwinn.

We Interrupt This Life For IEP Season

Wow! I really feel like it has been forever since I’ve been here! But, if you happen to be a special needs mom at all, you know how it goes……mid July until about mid-September, you’re lucky to take a shower some days! I have literally been in IEP meetings from 9-5 some days. What if I had to leave the home to work? Sometimes I wonder what happens to those kids that have parents who can’t make it. Do they simply get lost, jilted by a system that will never lobby for them in the fierce way a mama will? I hope not. Special kids need special things and special people willing to jump up and fight for them!

For those who are not familiar- an IEP is an ‘Individualized Education Plan’ based on a child’s individual strengths and weaknesses. It is a legally binding document drawn up at a giant meeting consisting of any or all of the following: Principal, Assistant Principal, Special Education Teacher, Assigned Classroom Teacher, Behavioral Specialist, School Psychologist, School Counselor, Child Advocate, Community Caseworker(s), Private Psychiatrist, Private Therapist, Occupational, Physical or Speech Therapist, and Parents. If you happen to be “that mom”, like myself, you may also insist on bringing the Superintendent in. The meetings usually last 1-2 hours depending on where you are in the stage. Is this your first ever IEP meeting? Drink first and bring a cushion to sit on, because you’re there for the long haul. If you’ve done this before and can walk in with a list of what you want for your kid, it depends on how much fight you have in you and how long it takes you to break the staff. Bring out the supermom in you, just don’t wear a cape. And, no, they do not offer refreshments, so bring enough to share, lol!

In the end, you should have a list of measurable goals for your child to work through throughout the school year. You should also get a progress report on those goals each quarter with the report card. If it isn’t there, get it fast. Make sure they know you’re watching.

All this stuff takes a long time and a lot of meetings, hence, IEP season! Dr. Seuss says it better than I can (although I am fairly certain that he did not write this, but whoever did hit the nail on the head).

“I do not like these IEPs.

I do not like them, Jeeze Louise!

We test, we check, we plan, we meet,

But nothing ever seems complete.

Would you, could you like the form?

I do not like the form I see, not page 1, not 2 not 3.

Another change, a brand new box, I think we all

Have lost our rocks.

Could we all meet here or there?

We cannot all fit anywhere. Not in a room, not in a hall,

There seems to be no space at all.

Could you, would you meet again?

I cannot meet again next week. No Lunch, no prop,

Please hear me speak. No, not at dusk. No, not at dawn.

At 4 P.M., I should be gone. Could your hear while all speak out?

Would you write the words they spout? I could not hear, I could not write.

This does not need to be a fight.  Sign here, date there,

Mark this, check that.  Beware the students ad-vo-cat(e).

You do not like them, so you say.  Try again! Try again!

And you may.

If you will let me be, I will try again, you’ll see.

Say! I almost like these IEPs!

I think I’ll write 6,003

And I will practice day and night, until they say,

You’ve got it right.”

Be Afraid

When I was a kid I used to love roller coaster rides.  There was nothing like the rush of going up….up….up….then dropping down at top speed.  It was an awesome rush that you could only get by paying a fortune to get into some overpriced park (unless you were the type to pay a fortune for some kind of drug that did the same, which I was not).  Anyway, now I’m an adult with three kids.  One has Gastroparesis, one has Severe Emotional Disturbance, One has Anxiety- I have a husband with Multiple Sclerosis and I have Fibromyalgia (Shhh that one is a secret, no one knows because I fancy myself as Wonder Woman and would rather those close to me believe I’m invincible).  Every day is a roller coaster now.  I have all kinds of ups and downs and they never ever stop- I’d like to say their free, but just because I’m not giving some guy at a glass window 30 bucks doesn’t make it free, now I just give some grumpy chick at the check out my green dot card to pay for a bunch of stuff I’ll never have time to eat- aka- admission.  My little girl likes to tell me all the time how great it will be when she grows up and can do anything she wants.  I just nod and smile and think about that roller coaster and how I never wanted to get off.  Well- I got my wish and it isn’t so pretty now, is it?!

How funny is it when you listen to these kids and you hear yourself? All the things I said come out of their mouths now and I just want to laugh out loud (sometimes I do, which is soooo mean), which is how my own parents must have felt at the time, they were much more composed about it.  My son is planning on having 10 careers, several million dollar cars and a mansion where I will only be allowed once a week for dinner prepared by his personal chef.  he will be living in the mansion and driving these cars alone because he will never be married, nor will he have children.  Someone should tell that kid to pay attention in school or he can kiss all that good-bye.  Oh!  Wait! I HAVE told him that! I totally forgot he has a magic wand in his bedroom that will take care of all that.  My bad.

I guess since I mentioned those two it would only be fair to let you in on a snippet of the 2 year old.  The tiny person who shook his finger at me and told me I was “totally wrong” for raising my voice “that not nice” he likes to tell me.  Why, you may ask? Well, “fucuz”, of course! The other day he was playing Counting Robot on my cellphone (as you know, blocks went out in 1982) and he says “I no like this game, I change this game, I play Angry Birds”.  HE IS 2!!!!! At any rate I reached for the phone to help him change it and what does he do? He yanks it away and tells me he can find it himself!  He tools around for a minute, gives it a good shake, holds it an inch from his face and says “top now, you tuoopid phone”.  Then he pushes a button and starts playing.  The kid knows how to bypass the childlock, draw my pass code, switch screens, go to landscape view and turn on his game- AT 2!!!!!

Be afraid people……………………be VERY afraid.