I'm special too!

So, in my time away from my blog, I have come to know one very important thing...I AM A SPECIAL PERSON TOO!  Most of my life, since having my special needs daughter, has revolved around her.  Every minute of every day, plays out in a very planned out and scripted way, that has been thought out and planned by me.  I need to think of every little thing, from who will be with us, how many potty locations there will be, how many potty breaks will be needed, what are the safety concerns (and in most cases that is EVERYTHING), how many escape routes are there....because I have a runner, is it a public location, will there be lots of walking, are there other children to worry about, planned "melt down" locations....ect...  There are actually so many things to think about, that most ordinary outings, become big events in our family. 

Most people don't actually GET what I am saying, and that is ok with me.  I have grown to accept my life as it is and I have grown to cherish how special our family is.  One thing that often goes over looked....is me.  I am so busy taking care of everyone around me that I put me on the back burner.....but NOT THIS YEAR!  For the last 5 years I have had a personal "goal" of running a marathon or half marathon before I am 40....and well, let's just say that this is my last year of opportunity....No, I am not telling you how old I am...LOL.  In the last 5 years, I have over come some family challenges, had a baby, gone back to work full time for a company other than myself, been through behavioral classes, behavioral studies, therapies, PTA President....and well the list could actually go on and on, but I am sure you get my point.  NOW, I am taking back MY life and doing something for me. 

Tomorrow starts phase 1 of a 2-3 phase plan that I have.  First phase is to start eating healthy, because without eating healthy, the rest of my goals will not be obtainable.  I have a friend of my that has taken back her life from Cancer, and I have been following her story for many years now...pre-cancer, newly diagnosed Cancer patient, Chemotherapy, to CANCER SURVIVOR!  About a year ago I started following her success for eating healthy.  I was impressed with how much weight that she had lost by simply eating right.  Another friend of mine recently did a "Tough Mudder" race and about a month before she ran the race I told her how great she looked and she simply said that she changed the way she ate.....SO, I have decided to do it for myself....change the way I eat.  To be honest, it is probably the scariest thing that I have ever decided to do!  I am a meat and potatoes kinda girl....with a BIG tall frozen mug of WHOLE MILK...mmmmmmm.....makes my mouth water just saying it.....BUT it is time for me to give these things up, with the goal of living longer in mind.  I decided a couple of weeks ago to do a 28 day fat burn, which will lead to forming healthy habits.  It comes in the form of a challenge....and if you know anything about me, it is that I LOVE a good challenge.  I signed up, joined a team and will have a coach to help me through it.  YEP, you guessed it, my friend the Mighty Warrior, Kara, is helping me along the way.  I am following the same healthy eating habits that she started, when she needed to lose all of the Chemo weight that she put on.  What better person to guide me right?  My challenge starts tomorrow, January 6th.  I am excited and nervous and ultimately scared, because I know how hard it is going to be for me to give up all of the unhealthy things, that have become part of my everyday life.  I know I can do it though.  Part of the challenge requires me to journal the progress over the entire 28 days.  The good news, is that I will be posting my journey here.  I kinda figured that since I am as special as the rest of my family, I can use this blog as my scribe and share my journey.

So I mentioned above that I have a 2-3 phase plan....the other two phases are fitness related.  Phase 2 is for me to become more fit.  Since having my children, I haven't had much time for fitness.  This is my time.  Phase 3 is running.  I plan on running this year.  I am going to start with a 5K, then I will move up to a 10K and by the end of the year my ultimate goal is to run a Half-Marathon.  Writing about my journey here, will help me stay committed.  I have never done anything like this before, so this should be an exciting adventure.  This is MY year of health. 

Here is where I am starting.....feeling a little vulnerable...January 6, 2014, 151 lbs.

Here's to a healthy year!



Right where I should be

Well, here it is - proof that the life of a mother of three is overwhelming, time consuming, ever changing....and quite simply....fantastic! Although I haven't had a bubble bath in what feels like ages, and look at pictures of friends drinking wine in beautifully elegant places, RIGHT AFTER changing diapers....I believe I am right where I am supposed to be. Being a mommy to my beautiful babies.  

I can't help but smile at the crazy shanagins that go on in our house EVERYDAY.  Like today for instance, my 2 yr old decided that he didn't want to wear his PJ's any longer and got himself dressed. He went into his room, pulled his clothes from yesterday out of the hamper (The Incredible Hulk is a big deal around here), and put them on. His pants were on backwards, but he was so very delighted with himself that he came to me with his big beautiful Cheshire grin clapping and I couldn't help but applaud with him.  Or when my little Mad-Mad, who loves the show Rediculousness, saw a funny scooter crash and asked us to replay it 10 times...laughing like she was watching it for the first time each time.  Or when my tween got mad at me for not inviting her to go with me to see The Circque Du Soleil show tomorrow...which I would have but I didn't think she would feel like hanging with a bunch of "old" people all day...lol.  She really was mad at me, I'm honored.

I love my little people and although I am living in the trenches, I wouldn't change a thing....

CM

Priorities

It is interesting how life plays out. Last year I went back to work full time, outside of my office at home, which as been a very hard transition.  For some reason today, I stumbled upon my blog, which I haven't written in ages.  If you are a parent of a special needs child, or any child for that matter, you probably understand how EXHAUSTING it can be at times and it seems like the last almost 2 years have been that way.  If you read some of my other blog posts, you know that I had my 3rd child in 2011 and since then, life has been speeding along in such an exhausting way, that I just have to hold on sometimes. 

As a working mom, do any of you feel that "tug-o-war" in your soul?  I do.  I feel like as a mom, my first and foremost responsibility is to my children, but when you are a working mom, that expectation is expected to change slightly.  I work in a predominately "Man" driven industry, in fact I am the only woman at my company doing what I do.  An honor that I wear with pride.  I LOVE my job and what I do, but my struggle is that I am a MOM first and an associate second.  My associates on the other hand are husbands and associates....They don't have to worry about children, laundry, dishes, dinner, lunches, breakfast, diapers, doctor appointments, therapies....and so on....and so on.... because they have a wife at home taking care of all those items.  I know......I chose my position, and I am very, very, happy doing my job....but "tug-o-war" deep within rages on.....

Today I went to work, well, I didn't quite make it in, because my I received a call that my daughter began throwing up all over the place.  Once I was home, taking care of her, I reflected upon this mornings activities and I was heavy hearted knowing that I KNEW something was wrong this morning.  My daughters mannerisms were off just enough that I had a feeling to keep her home from school today.  She doesn't speak, so I am constantly "mind reading" her behavior, body language and anything thing else I can observe.  I didn't keep her home because I had a very important meeting....and now, I feel terrible that my priorities got mixed up today....UGH.

I wish I had a manual that I could follow it and know what to do......

Well, until my next moment, take care of your family and KEEP your priorities straight. 

CM

A little nervous!

I LOVE my blog!!!  I LOVE writing in it, especially when I am having "moment" good or bad, because I really appreciate my journey through this life, when I get to reflect how special it really has been.

IT IS REALLY hard to write when I know that people are reading it though.  I don't mind strangers reading my posts, but when I know that friends and family are reading it, it makes me scared and nervous.  I think that is because, I am usually the strong one and when I write here, I am sometimes not very strong.  I say things that I wouldn't ever tell someone in person and I don't like for people to worry about "how I am doing today".  I think that is why I haven't written very much lately.

I was reviewing some of my past posts and saw the comments that others have left and I realized that I may have positively impacted others.....AND it has made me realize that I should be writing more.  Both for myself and others.  SO, if you read this, please post a comment.  I don't think that I received the past comments, but it made me feel good to know that, there are people out there going to similar struggles. Reading your comments will help me to get back into writing and past the anxiety I have about reading my blog.

I would love to share with you, my newest excitement!!  My daughter, as you may know, doesn't talk.  We have been dealing with therapists for this her whole life (7yrs now) and this year, at school, she got a new teacher and speech therapist.  At first I was VERY nervous about this change because I have found that people who are new to her underestimate what she is capable of.  On the flip side, having fresh eyes is sometimes a blessing, as it is this time.  Her speech therapist, I will call her Shannon, ran into us one day and spontaneously signed her name to my daughter.  My daughter in return did the sign back.  We all watched this in amazement!! BECAUSE, up to this point we really weren't working on signing.  We were using a voice box, pictures (pecs), minimal signs and her body/face gestures to communicate.  We really weren't working on signs, in my opinion, because the people around her do not know sign language.

About a week later, we ran into the Shannon again.  Well to be precise, we were in a crowd and my daughter signed Shannon's name.  I was a little shocked and said "where is Shannon?".  Scanning the crowd I saw a woman stop and turn around and to my surprise, it was Shannon.  She heard me say her name.  I WAS AMAZED.  My daughter actually saw Shannon first and told me she was there!!!  We sat there excitedly talking about how many signs my daughter was attempting.  Shannon gave us homework to watch the SigningTime Videos.  I took her advise and guess what......WE HAVE ABOUT 20 new signs that my daughter has learned in the last 2weeks.  I can hardly contain my excitement!!  My daughter is starting to realize that she has a "voice", people understand what she is saying.  Her teachers, classmates and our family are all watching the videos so that we ALL can communicate with my daughter....AND SHE LOVES IT.  Her excitement is growing and so is ours.  TODAY WE HAVE HAD A SPECIAL MOMENT.

Thank you for sharing this journey with me.
Cherishing Mommy

Beautiful and Special Moment

I know I say this all of the time, but, I REALLY do mean to blog more....I just don't have the extra time. 

Well, we did it!  We made it through 9 months of worry.  Some of it public, most of it private but ALL of it was VERY stressful.  It is not something that I could explain with words really.  If you have a special needs child and had a child after that, then maybe you would understand; BUT even then, each case is so different that we all deal with it in our own way....

Imagine for a moment, getting pregnant. 

The joy that is supposed encompass you, is straddled by the reality of "WHAT MIGHT HAPPEN".  Ignorance is gone, the cold hard truth about could possibly happen sits plainly in front of you, staring you in the eye.  There isn't a reason for our past difficulties, it wouldn't have shown up on any tests, the doctors have called us a medical mystery.....AND now the VERY REAL chance that it could happen again, is placed upon our shoulders and seat belted in for the 9 months that are coming.  It is stressful to say the least.

After every test, positive comments from others, positive thinking and trying to keep from going crazy with the "what might happens".......WE entered the delivery room ready for what was in store.

My husband and I are best friends, thank goodness, because if I had to walk this path alone, I am not sure I could survive.  We went into the labor and delivery room and in each other's eyes, there was a secret language being spoken that no one in the room could understand.  It was hidden behind the smiles of each other, but we both knew it was there.  Right before the baby was born, during a "heated" discussion with the other family members in the room, we decided that we didn't want anyone in the delivery room with us when our baby was born.  As hard as it is for everyone else to understand, this was not meant to be a punishment on them, it was a decision we made for us.  Neither one of us had enough strength, to make it through the delivery with anything other than each other to worry about.  We already went through one birth that was stressful.  Our daughter was born not breathing, and if that was to happen again, we did not want to worry about grandparents gasping or panicking.  WE just wanted to be together without any other outside influences.....

So the moment came, and our baby boy was born.  He was placed in my arms and my husband and I bawled.  OUR BABY WAS BEAUTIFUL, PERFECT and BREATHING!!!!!!  We both looked at our baby and each other and cried.  We cried because everything was fine and after 9 months of stress and worry, it was OK to let go of the fear that has secretly been pressing down on our chests. 

Our baby is beautiful.

EDD.....4 weeks from now!!

It has been quite a journey!  I have experienced such extreme emotions that I am not sure I could even share if I tried.  There have been tests, more tests, doctors, experts and an array of "STUFF" for this pregnancy.  I am happy to report that EVERYTHING looks good so far!  All of our tests have come back fine, pregnancy has been normal and overall there isn't one thing that I can say appears to be abnormal.

....so.....why do I still have this little ball in the pit of my stomach that is SCARED to death about what still MAY be wrong?  It sounds so stupid.  I just want a 100% GUARANTEE that everything will be fine, and I know I can't get that. 

It seems that this pregnancy has gone faster, maybe that is because I know how much things are going to change when the baby comes......I am a little nervous about that.....How in the world am I going to be a good mom to my children with 1 more thing pulling me.  My oldest is brilliant and I don't want her to get lost in the shuffle, just because she is capable of doing things on her own.  My "soon to be middle" child is special needs and has been by my side for the last 7 years.   I KNOW her better than ANYONE.  I do not want her to get lost in my efforts to take care of the new baby.....BUT I also do not want her to take away from what I WANT to give to this baby as well.  I feel a bit like I am walking a tightrope sometimes.  How am I GOING to do all of this? 

I guess time will tell...

"You have to accept whatever comes and the only important thing is that you meet it with courage and with the best that you have to give." ~ Eleanor Roosevelt

Happy Thought For The Day...

"You know how when she looks at you, she looks deep into your soul and makes it happy." my oldest said this about my youngest over breakfast one day.

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Oh So Much Worry!

I know most of you probably won't understand the feelings running through me right now (unless of course you are the parent of a special needs child). It really is an impossible situation!

First, to find out that I was pregnant was such a bitter sweet moment. I was filled with so much joy and instantly overwhelmed with the thoughts of what having a baby means to me.....now that I know ALL the possible things that can go wrong.....AND not to mention the reaction of the doctors....

Today, I had a genetic doctor call and inform me that they want to test my oldest and my unborn for a rare genetic mutation that showed up in me and my youngest.....UGH...they wanted to be sure that I am not going to give the baby Rett Syndrome. By the way don't look up Rett Syndrome....IT WILL FREAK YOU OUT! Even if my daughter may have it....the info available online is scarey!

I wish that I could just feel certain that everything will be alright.....but I don't.....

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Change...is....HERE

You can avoid having ulcers by adapting to the situation: If you fall in the mud puddle, check your pockets for fish. ~Author Unknown


It is 6:05am on January 7th, 2011 and I just got the results of a pregnancy test that I took yesterday and it said:  POSITIVE!

Guess we will be expecting a new little person!

Physical Therapy?

In 2006 I was told that my daughter could get some additional help from an organization called CCS.  Based on the fact that she has ATAXIA, it is almost a given.  When I filled out the application and mailed it in, I received a letter that said she was DENIED services.  Their reason for denying her was due to the fact that she was only on 1 medication to control her seizures!  ARE YOU SERIOUS?  She was denied because they said that she wasn't SICK ENOUGH.....They never even mentioned the Ataxia.  After I started to discuss the situation with other moms and some teachers, I found out that maybe I didn't stress the "right" stuff on the application I filled out.  I really don't understand that reason though.  IF A CHILD NEEDS therapy, why in the world would you make all of this red tape?

WELL, now we are in 2010 (well really we just started 2011, but in October of 2010) I was FORCED to apply for CCS again, by another organization that doesn't want to pay for our therapy any longer.  I almost had my application walked-thru the system, and it was approved. HMMMM, what exactly does that mean?  I didn't have enough connections in 2006? 

After months of waiting to see if we were going to get additional services, I found out that we were approved for Physical Therapy 1x/wk.  WOW, for as much as I am griping, I really am happy that my daughter gets the services she needs.  BUT SHE NEEDED THEM 4 YEARS AGO, as much as she needs them now! 

I guess that is really my problem.  NO ONE has ever told me that she doesn't NEED therapy, they just tell me that they won't pay for it.  SO FRUSTRATING.  THESE ARE CHILDREN!  Stop paying for people to leach off of the system and take care of the people who need it most.

Why, as parents of special needs children, do we have to work so diligently to get the help we need? Why can't someone other than us, have our children's best interest at heart? 

Me

The toxins I put into my little one

Yesterday, I was having a discussion with a family member about medications that I give my daughter.  It was sparked, because this person is about to have a major surgery and had a meeting yesterday where she had to bring ALL of her medications to the meeting (this is probably the 5th time she has had to do this in about a week).  In the discussion, after I listened to her complain about it for a little while, I told her my thoughts. 

The doctors do this for a reason, NO I am not a doctor, but I can give you my best educated guess about why they do it.  First, check and double check....I am sure that they don't want any surprises about what you are taking and to the average person, there are probably only a couple of meds.  But, to some, there is a laundry list of stuff they take.  This family member takes about 15 medications A DAY.  The Doctors want to be SURE, you told them about everything......

But, while having this discussion, I brought up a recent news article I saw on 60 Minutes about GSK, one of the LARGEST pharmaceutical manufacturers in the world.  They had some major problems, FOR MANY MONTHS, making and mislabeling medications.  They told the story of a little boy that was taking a 10MG medication and one month the pill color changed (but the bottle information didn't) and the next month the pill color changed back....come to find out, he was taking a pill that was 25MG for a whole month! For a child that is serious concern....

My daughter takes medications to control (or not control, because they aren't working very well right now) her seizures.  She takes anywhere from 2-4 medications 2x per day.  On December 5th we changed from one medication to a new one, but this new one is not working properly (and it is making my daughter a walking ZOMBIE) SO, we are changing to yet another new one. 

WHAT IF, she was given the wrong dosage for her new medication....I would NEVER know.  That is so scary.  I try my best to stay on top of her medications, but I am not an expert, I AM ONLY A MOM.  Some days I wish I had super powers.

If I think about the meds I have given over the past few years, it is downright nerve wracking.  I gave a medication to my NEW BORN baby that was 14% alcohol....I gave my toddler a medication that literally stopped her from sweating, she couldn't regulate her own body temperature.  I had to carry around a squirt bottle to keep her cool on hot days.  I am taking her off a medication that causes LIVER damage (this is one that my husband is particularly scared of).  I am putting her on a new one that causes SEVERE RASH if you go on or off the med to fast.  It is so severe, that it will take 7 WEEKS to finally get her fully on the new medication, by the way, this NEW MEDICATION IS MANUFACTURED BY GSK...OH and did I tell you the one that we are coming off of causes liver damage (almost for certain) if you take 3 seizure medications at the same time?  Right now she is taking 2, tomorrow she will be taking 3 (for the next 7 weeks, until she is fully off the old one and on the new one)...

BUT, the alternative is mounds and mounds of seizures, more than the 20-30 we see right now....SO, I have to give her these poisons and hope for the best.  I have to pray that her body can handle the medication and pray that I will be able to tell if something goes wrong.  Doesn't that seem like a lot of pressure? 

ME

Happy New Year

It is the beginning of another year and I have been thinking about some of my past posts....I LOVE reading them.  I love reading the funny ones, the happy ones, and I really LOVE reading the sad ones.  No, not because I enjoy being sad, but it reminds me that things aren't hard all of the time, just sometimes.  It reminds me that there are struggles and then there are triumphs.  Mostly I love reading the posts about things that I have forgotten, because we all know that I am not getting any younger and my memory isn't the greatest.  Life goes so fast that most of the time I can't even remember the beginning of the day by the end of the day, LOL.

I am going to try really hard this year to journal more.  I think it is important for ME to be able to look back and remember where I have been, in order to see how far we have come.

A Little Bit of BRILLIANCE!

 

BRILLIANCE:  extreme brightness or radiance; imposing splendor or magnificence

I have never really thought of myself as a writer, and I guess this blog proves it.  I always think about writing, believe it or not, but most of the time I am keeping up with the little time passers that make life so interesting.  I really do wish I was a better writer, but I am not….I am too busy playing MOM :)…I am a good mom so that probably makes me feel a little bit better about the fact that I am not great at everything else.

Today I watched the movie Eat, Pray, Love and it got me thinking.  How many people do you think have watched that movie wanted to order a pizza and build a meditation room, LOL.  Although the movie reminded me of someone very close to me, I can’t believe that I finished the movie with an abstract plan about how to start meditating.  IF ONLY I HAD MORE TIME.

The funny thing is, a few minutes later my kids were running through the house playing tag with the dogs.  I have to admit I haven’t ever experienced the game quite like this.  My oldest had a friend staying the night and my youngest doesn’t get the rules of the game very well, so the girls all decided to include the dogs. I think they figured it would make the game a little more fun.  The dogs thought it was GREAT, running though the house wagging their tails and tagging people.  I watched them all giggle and play together and it made me smile. 

Some days being a Mom is hard work, other days it is just plain daunting.  A Mom of a special needs daughter, has moments that just break you down to the core and ask, “why do kids have to go through this?”……Other days life has a BRILLIANCE that can not be expressed in words and you are touched deep into your soul, and for just a moment…..EVERYTHING IS PERFECT!  Today is a Brilliant day.  Who knows what will happen tomorrow, but for now I am radiating love and happiness from the inside out.

Me

“You know how when she looks at you; she reaches deep into your soul and just makes you happy” ~ My daughter talking about her sister

The struggles of a Special Parent

This week has been rough!  My girl started kindergarten and I am not sure I like her new class.  Actually, I think I am being a little moody and irrational right now, but sometimes I am allowed to breakdown……I am ONLY HUMAN.  Yesterday, was a terrible day.  Thank goodness for DAD’s!  I called my dad and unloaded all of my PITTY PARTY luggage onto him, thank goodness he doesn’t hold onto any of it.  In fact, it was refreshing to have him laughing at some of the stuff I was telling him. 

It made me feel a little better to know that HE wasn’t as upset as I was, (and God knows I was upset) about all of the crap that I was sharing with him. 

Sometimes, as a special parent, it feels very lonely.  I don’t really want to share what is going on inside of me, in fear that people won’t understand (which in all actuality THEY WON’T).  I don’t like to overload my hubby either, which in turn means that I deal with “it” and keep moving on to the next obstacle.  THIS MAKES FOR A PRETTY LONELY FEELING SOMETIMES.  Every once in a while, I build up enough pressure to erupt Mt. Shasta and BOOOOOMMMM!!!  I EXPLODE.  Thank goodness my dad was home……he allowed me to explode on him, made me feel better and ultimately he got me laughing at the end of the conversation. 

I wish things were different sometimes….is that wrong?  I love my life and MY LITTLE LADY, but there are times that I ask myself WHY.  AND, when I look into the deep dark tunnel of the future sometimes, I wonder how in the hell I am going to do this for the rest of my life.  AND….when my life is over…..who is going to protect my little girl? 

THAT THOUGHT ALONE is enough to make me cry. 

Some Mothers Chosen By God

 

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron saint, Matthew.
"Forrest, Marjorie, daughter. Patron saint, Cecelia.
"Rudledge, Carrie, twins. Patron saint… give her Gerard, He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child who is less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary."

"When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or sunset to her blind child, she will see it as few people ever see my creations."
"I will permit her to see clearly the things I see… ignorance, cruelty, prejudice… and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint" asks the angel, his pen poised in mid-air.

God smiles. "A mirror will suffice."

Written by Erma Bombeck

High Fever = No Sleep for Mom…

This weekend was a fantastic weekend (we went camping)!  I love watching my little one roam without all of the restrictions.  She gets to take her own little adventures without the worry of cars, hazards or anything else.  She gets to ride her bike….which is pretty awesome because the “experts” didn’t even think it was going to be a possibility….not anytime soon. 

We ended this weekend by contracting a flu bug…UGH…I hate it when my little one gets the flu.  A high fever in my house means seizures, worry and no sleep.  I think my little one had about 30+ seizures last night, it is hard to count when I am in a state of delirium from lack of sleep…not to mention the couch isn’t very inviting when sharing it with a 6yr old.  At one point she even kicked me in the face while she was having a seizure.  It is absolutely heart breaking to watch her seizures….it is even more heart breaking when the seizure if over and she comes back to reality….sees me hovering over her, holding her hand and…..she smiles and says “MAMA”….one of the only words she know how to say.  It is as if she is telling me it is alright, but I can’t say that it makes me handle it any easier.  It does make me smile deep inside, because it shows me how strong my angel is and it is a simple reminder about what is important.

Right now she is still asleep….I hope this flu bug passes quickly….

The Potty Training PROCESS!!!

When was the last time that you had to potty train your little one?  For me it has been quite awhile ago.  My oldest was potty trained before she was three.  Potty training my little M has been quite the process!!!  AND I MEAN THAT WITH ALL MY HEART! 

We started our venture about a year an a half ago….YES…I said 1.5yrs ago.  UGH..it has been a long time.  For those of you that have a special needs child you know that the typical “potty training rules” do not apply to us.  I can’t bribe my daughter to use the toilet, I can’t punish her for not using the toilet.  I can’t yell or threaten or say “THE NEXT TIME YOU PEE YOUR PANTS I’M GONNA…”….NONE of that will help.  The only thing that REALLY helps is positive reinforcement…..have YOU ever tried to stay positive for a year?  IT IS HARD!

I met with a behavioral specialist at the beginning and she prepped me for this long hard journey…….little did I know then….BOY WAS I GONNA NEED IT!  She was fantastic though.  She taught me the basic teaching techniques and they are pretty simple.  Putting them into action has been the hard part.  BEING CONSISTANT….When you are a mom, you are most often RUN DOWN…..doing all of the little life things that make the world turn around.  When  you are in potty training mode…..EVERYTHING CHANGES…..

I have LIVED in our bathroom for the past year.  I am not even kidding!  I practically have a bed in there. 

It makes for some pretty interesting, gross, funny stories though!

here is one….

One day, while working on a big fundraising campaign, I got a call from the local news paper!  A reporter wanted to interview me….I WAS SO EXCITED.  In the background my kids were playing and running through the house…nothing new right?  WHEN ALL OF A SUDDEN….I hear….

MMMMOOOOOOOOOOMMMMMMMM!!!!  It was my 9yr old, she would only yell like that if something WAS REALLY WRONG.  Trying to remain composed, while answering this reporters questions, I followed the yelling…..

I get to my daughters room, with a finger up to my lips giving the universal sign for SSSSHHHH……and she said quite loud “EEEEWWWWWW!  THAT IS POOP!” (sorry I know that is gross).  I followed her eyes and saw the disastrous mess! Panicking, and keeping up with the reporters questions (because, I couldn’t very well tell they guy that my potty training child has struck again) I picked her up by the arms and took her into the bathroom, stripped her down and hosed her off….all the while, never skipping a beat with the interview……

The interview ended about the same time that our impromptu shower did…AND I STARTED LAUGHING!  Probably a little hysterically…because my oldest said “mom are you alright?”.  I realized then that it really takes a SPECIAL Person to be a mom to a SPECIAL child.  We never let our challenges stop us, they just make us change directions.  Life, as I know it, is NEVER boring!

…the next day, I got the paper and my interview was in it…and I didn’t do to bad.  I am sure the reporter heard the chaos in the background, but never asked if everything was ok…THANK GOODNESS, because in the moment, I am not sure what my answer would have been….

CHEERS! 

What Matters Most?

I was running through some old papers and this one stood out. I wonder if you will slow down or change course?

***

A few years ago, at the Seattle Special Olympics, nine contestants, all physically or mentally challenged, assembled at the starting line for the 100-yard dash. At the gun, they all started out, not exactly in a dash, but with a relish to run the race to the finish and win. All, that is, except one little boy who stumbled on the asphalt, tumbled over a couple of times, and began to cry. The other eight heard the boy cry. They slowed down and looked back. Then they all turned around and went back….every one of them One girl with Down’s Syndrome bent down and kissed him and said, “this will make it better.” Then all nine linked arms and walked together to the finish line. Everyone in the stadium stood, and the cheering went on for several minutes. People who where there are still telling the story. Why? Because deep down we know, that they know, the one thing that matters most in life. What matters in life is more than winning for ourselves, what matters in life is helping others win, even if it means slowing down and changing our course.

“A candle loses nothing by lighting another.” ~ Author Unknown

Counting My Blessings

You don't choose your family. They are God's gift to you, as you are to them. ~Desmond Tutu

Yesterday pretty much sucked. I think the emotional roller coaster that I felt was just because of the change of "season". The new schools, new moms to meet....new stuff bothers me. I like it much better living in my own little bubble. I know it sounds pretty funny, because if you know me, you are probably shaking your head right now in disagreement. BUT REALLY PEOPLE.....I am a HUGE chicken for new things.

BUT....

THAT WAS YESTERDAY. It is amazing how much things can change in one day. I woke up this morning and I had little reminders about how wonderful things really are! For as much chaos as we have in our day to day life, we are so blessed. I am so blessed. I thought I would share some of my blessings with you.

1. I am blessed to be married to my VERY best friend. We have been married for 10 amazing, wonderful and exciting years. He is a wonderful friend, husband and father. I think back to when we were dating and I can easily see how much we have grown....together. We are two of the same. It really is wonderful. I'm not crazy, we have our moments also....you know the ones I am talking about. The little fights that happen for trivial stuff. The ones that seem like big deals in the moment, but you probably won't remember them in a month. That is NORMAL....but, in the big picture....I am so very blessed to be married to one of the greatest men I have ever had the pleasure to know. He is my husband and best friend.

2. I am blessed to have a brilliant, beautiful and amazing daughter. My little "L" is magnificent. She is kind and understanding. She is patient and persistent. She is smart and beautiful. SHE IS DANGEROUS...LOL. That was the mom in me coming out. I watched her walk up to me the other day, in her casual, no big deal fashion, from across the school yard and I had this weird out of body experience. I looked at her and thought "look at that beauty, wow! When did she get so big?" She has a wisdom about her that amazes me and the time that we spend together is so remarkable. I look into her eyes and feel her passion for life. I listen to her speak and hear her humor and wisdom. I watch her help others when they struggle. I watch her help her sister learn how to play "hide-n-seek" in the cabinets. She is AMAZING and I am so grateful to have her as my daughter. I can not wait to see what life brings her.

3. I am blessed to have the very special and amazing gift from GOD Miss. "M". I watch her bring peace and happiness to EVERY person she meets. I watch her triumph over little challenges that she is faced with daily, but never complain about any of it. I think she is a beacon of light. She is wise and has taught me patience in a way that can not be described. She has taught me not to care about what others may think....it doesn't matter. I look at her and wonder why I was chosen to be the mother of someone so special. SHE is brave and daring, beautiful and modest, kind and patient, determined and happy......I feel honored to be part of her life path.

I AM BLESSED......

The family. We were a strange little band of characters trudging through life sharing diseases and toothpaste, coveting one another's desserts, hiding shampoo, borrowing money, locking each other out of our rooms, inflicting pain and kissing to heal it in the same instant, loving, laughing, defending, and trying to figure out the common thread that bound us all together.

~Erma Bombeck

Miss. Sassy-Pants!

We just started school (well it actually started last week, but today is our first full week). It is amazing to me that I still get chocked up. I'm not exactly sure if i am chocked up because I HATE new things, and starting out a NEW year sends me into turmoil or, is it because I am watching my kids grow up WAY to fast? I absolutely, positively....100% Love my kids and having them with me through the summer and letting go at the beginning of the year is VERY HARD.

So this morning we are starting our routines again. Trying to get back into the swing of things....The wake up at 7am, shower, breakfast, make lunches, brush teeth....then run out the door and join the rat races. We made it as far as breakfast and my quick moving train came to a screeching halt. Maddy decided that she wasn't going to take her medication. This is a little more than the "please take your Motrin because you are running a fever" stuff. Have you ever pleaded with your kids over that grape flavored cold/flu medication? Imagine giving your kids medicine EVERY DAY 2x a day. She takes two of them, they are the medication that controls her seizures. THEY ARE VERY IMPORTANT. She clamped down her lips and wouldn't open her mouth. I tried to pry them open with my fingers, I tired to bribe her with food, I tried to make her laugh, I tried begging.....didn't work. She just looked me right in the eyes and pucked her lips and protested the dreaded medication....Talk about breaking my heart!!! Finally with tears in her eyes, she GAGGED down the meds. UGH....if only it could be easier. Does she understand that if she doesn't take this stuff she will have hundreds of seizure.....how do I teach her with out really letting her experience the effects? Reasoning with a 5yr old just doesn't work. I guess I will continue my quest for yummy things that I can hide it in.......

"It is not until you become a mother that your judgment slowly turns to compassion and understanding." - Erma Bombeck