Questions I Have, But I Bet Can Never Be Answered...

i've been thinking about so many things lately...things of importance & things that really don't matter.  things that make me cry & things that make me smile. things that happened LONG ago & things that happened yesterday.  as i think about all these things, it brings many questions to my mind.  some questions seem selfish, & some seem petty...but they are my questions, they are things i would truly like to know...but i'm smart enough to realize that even though i'd like to have explanations for these things, i probably won't get any.  maybe someday, when i'm face to face with Jesus, He will give me some kind of closure to these questions that i can't seem to get out of my mind, these haunting thoughts that can at times ruin my day.  maybe i'm wrong, but i feel as if i'm entitled to know why i went thru the struggles & challenges that i have been given...why things didn't always work out the way i would have liked...why certain people in my life were less than helpful & caring.  i have a few questions that i hope can be answered by God someday:

1. Why did my mother have to raise my brother & i by herself?

2. Why did my father choose alcohol & the party lifestyle over being a father to me & michael?

3. Why do some dads leave their own family, just to raise someone else's kids?

4. Why did i always feel inferior to all the other girls in my grade at school? Why did i have to carry such a low self-esteem even though i was smart & had many friends?

5. Why did You encourage me to go to college if Your plan for me was to be a stay-at-home mom of a child w/ special needs?

6. Why did my daughter have to be missing a piece of her Chromosome 15? Why did Angelman Syndrome have to shake up my life? Why do women that don't give a crap about their kids have perfectly healthy children, how can they be so blessed when they don't even appreciate their blessings? Some women can't even have children & they would make the best mother in the world...i just don't get it.

7. Is Jocelyn's disorder a punishment for something i've done in my past?  if so, i feel terrible...she NEVER deserved this!!!

8. Is it possible for someone to care about you even if they don't truly show it?  Will i ever know if they cared, will they finally be able to show emotion or am i staying somewhere that i'm truly not wanted? Have i wasted a large part of my life? man, i sure hope not...

9. If You knew my daughter would be disabled, then why not give me the kind of husband that would be more compassionate to Jocelyn's & even my needs? Why have You not softened John's heart yet, isn't that what Jocelyn should do for a father...soften his heart?

10. How come when Jocelyn has been terribly ill, laying there having seizure after seizure, the kind that can KILL or when she's had crazy metabolic disorders where her body was so toxic that she was in ICU & i was terrified that she may be leaving the hospital in a hearse...how come my father wasn't there to be w/ me, to reassure me that everything would be ok, to sit there & wait it out w/ me...the way he's been there for Brittany? Isn't Jocelyn just as important as Hayden? Doesn't he love her as much? I'm sure he does...but i still get confused. Is this petty?  maybe so, but it's honestly how i feel, some things i've been thinking about. I've even thought about what would have happened if Hayden had to be in a wheelchair, what it would do to Brittany, my dad & judy. i know it would crush them, it's a horrible reality...a wheelchair.  but i've been dealing with a wheelchair for so long now & it just seems like an almost normal way of life for us. i think people forget that it still hurts my heart every time i put jocelyn in that chair...it just reminds me that she's different, that her legs don't work like ours. Why God, do i have to feel this way? Why do i feel like i walk down a road so so bumpy, but no one notices? No one sees me hurt, no one knows how much i cry. No one knows how many times i've prayed for my daughter to say "momma", just one time even. Why do i feel so alone? What is Your plan in this Lord, please let me know!!!

11. Why do some people have children & immediately grow up & be a parent, like myself...yet others, never fully assume that role as mother or father? They must rely so much on their parents' or someone else's help...i guess i just don't understand why providing for children comes so naturally for some & so confusing for others. i will ask again, Lord, if you knew i would be responsible w/ my children, why didn't i have a little girl who could sing & dance?  i know this is Your will, but help me to understand...

12. Why do so many mothers out there seem to be more concerned w/ material things than the true meaning of being a MOTHER? i myself get so offended when i have to listen to women complain about such stupid things, especially when i have to put my daughter in a wheelchair each & everyday...not to mention, i've never heard her say one word, that's right, not even one!!

13. Why do some people just have it so EASY in this life & others literally just struggle & struggle & struggle? i wish i knew how You saw everything, i wish i could truly understand Your plan...but i can't. 

BUT someday i will ask you these things, someday i will expect You to give me some answers to my questions. You will make it all clear for me...You will show me how i have done Your work, how i remained faithful & for what purpose. how Jocelyn's life touched so many people & brought them closer to You, she shares Your message of love without even saying one word.  maybe i understand more than i realize...with each passing day You show me more & more about Your plan. i thank you for being my Saviour, i thank you for listening to me...even when i'm mad, even when i feel sorry for myself...You are the Way, the Truth & the Light...thank you for guiding my path so faithfully!!! 

The Special Mother

 

The Special Mother
by Erma Bombeck

Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"This one gets a daughter. The Patron saint will be Cecelia"
..."This one gets twins. The Patron saint will be Matthew"
"This one gets a son. The Patron saint.....give her Gerard. He's used to profanity"
Finally He passes a name to an angel and smiles. "Give her a disabled child".
The angel is curious. "Why this one God? She's so happy"
"Exactly," smiles God. "Could I give a disabled child to 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 sorrow 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 necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her 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 won't survive. Yes here is a woman whom I will bless with a child 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 any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and 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 if 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"

1st Day of School

Logan, Jocelyn & Devin ready for their 1st day of school

well, it's that time of year again..."Back 2 School"!!!  i have counted down for this day for a while now, but i will admit it's a bittersweet feeling now that it's actually here. 

Devin Michael - 8th grade

can you believe that this is devin's LAST year of Junior High???  8th grade sure snuck up on me pretty quick.  lots of memories for devin to be made this year...this is his final year of Junior High sports, more electives to choose from, his 1st year of FFA & most of all 8th grade graduation to look forward to in the spring.  my little guy sure is growing up on me.

Devin's last "1st day" of Junior High...

Jocelyn Abigail - 2nd grade

Jocelyn began 2nd grade today, which sorta freaks me out...even though she's not technically the "baby" of the family, she's still my little ANGEL baby, she shouldn't be old enough for 2nd grade yet.  this is also jocelyn's final year at the school she is at...she will  have to move on up to Eastside Elementary next year, she is growing up too, i guess.  well, we had a FUN morning for the 1st day of school...here's what she did...i got her all dressed & ready to go to school & when i wasn't looking she poured her entire milk out onto her outfit.  she was soaked from head to toe...so, we hurried up & made a quick outfit change & still made it to school on time.  gotta love Angelman Syndrome...all i could do was laugh & say "welcome back to the chaotic school day mornings..."

Jocelyn all ready for School, after a quick wardrobe change of course :)

Logan Nathanael - 1st grade

here's my RockStar, my wild one, the baby of the family...even he's getting big too!!  time sure is flying by...way too fast if you ask me.  wasn't it just yesterday i brought this precious child home from the hospital???  well, he's a 1st grader now & boy do i feel for his teacher...she's got her hands full w/ this kid!!  (that's why we took her some nice gifts this morning...)

Logan holding one of the gifts he brought for Mrs. Dee

Logan sitting in his own desk...he was so excited about this!!

Logan has always sat at tables since Pre-K.  this is the first year to have his OWN desk, he sure did like this part of 1st grade this morning.  before i left him there i asked him if he wanted me to walk him to the cafeteria...his reply, "no mom, i got this!"  then flashed me a peace sign, in true RockStar form & yelled "later"!! yes he's growing up so so fast.

so, here we are, the beginning of the 2011-2012 school year...wow, when i was in school that seemed SO FAR away, but here it is. and my babies are growing up right before my eyes.  i could not be more proud of my kids, they are amazing, each in their own special way.  i can't wait to see what this school year has in store!!! 

I am the Child...

I am the Child

i am the child who cannot talk.  you often pity me.  i see it in your eyes.  you wonder how much i am aware of...i see that as well.  i am aware of much...whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me.  i marvel at your frustration, knowing mine to be far greater, for i cannot express myself or my needs as you do.  you cannot conceive my isolation, so complete it is at times.  i do not gift you with clever conversation, cute remarks to be laughed over and repeated.  i do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me.  i do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself.  i do not give you understanding as you know it.  what i give you is so much more valuable...i give you instead opportunities.  opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible.  i drive you further than you would ever do on your own, working harder, seeking answers to your many questions, creating questions with no answers.  i am the child who cannot talk.

i am the child who cannot walk.  the world sometimes seems to pass me by.  you see the longing in my eyes to get out of this chair, to run and play like other children.  there is much you take for granted.  i want the toys on the shelf.  i need to go to the bathroom.  oh, i've dropped my fork again.  i am dependant on you in these ways.  my gift to you is to make you aware of your great fortune, your healthy back and legs, your ability to do for yourself.  sometimes people appear not to notice; i always notice them.  i feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.  i give you awareness.  i am the child who cannot walk.

i am the child who is mentally impaired.  i don't learn easily, if you judge me by the world's measuring stick.  what i do know is infinite joy in the simple things.  i am not burdened as you are with strife and conflicts of a more complicated life.  my gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love.  i give you the gift of simplicity.  i am the child who is mentally impaired.

i am the disabled child.  i am your teacher.  if you allow me, i will teach you what is really important in life.  i will give you and teach you unconditional love.  i gift you with my innocent trust, my dependency upon you.  i teach you of respect for others and their uniqueness.  i teach you about the sanctity of life.  i teach you about how very precious this life is and about not taking things for granted.  i teach you about forgetting your own needs and desires and dreams.  i teach you giving.  most of all, i teach you hope and faith.  i am the disabled child.

It May Not Be Florida...But It's Still a BEACH!!!

Devin, Jocelyn & Logan at Kerr Beach

It seems like every family except mine has been to one of the many beautiful beaches in Florida this summer.  All those beach pictures i've been seeing on facebook have me full of envy.  Well, let's face it...a wonderful Florida vacation is completely out of the question for us, so i decided to make the best of it & load the kids up & head out to Kerr Beach.  It may not be Florida, but hey, it's got sand & water & that's all we needed to beat the heat. 

The kids really did have a good time.  I LOVED watching Jocelyn have so much fun.  I was so happy that she could get right in there & swim with her brothers.  It's the little things like seeing Jocelyn be a part of the group & not be left out that truly does bring happiness to my heart.  She had a BLAST!!  I want to share some pictures from our trip out to Kerr Beach:

how cute is jocelyn in this picture???  TOO CUTE!!!

logan enjoying his time at the BEACH...he was happy even though we weren't somewhere truly tropical :)

poor devin...jocelyn was playing a little too rough!!!

but he's a good sport...here he is helping sissy swim

We even wrote their names in the sand...

Even though it wasn't a true Caribbean get-a-way, it was still a nice break from the stresses of everyday life.  Just being able to enjoy family & be surrounded by God's beautiful handiwork is great medicine for your soul. I'm so thankful to be able to show my children the true beauty of nature, even nature that's in our own backyard.

jocelyn abigail

my little "Angelfish"...

another special memory from "Jocelyn's Journey"

my sweet kiddos

Just remember, you don't have to go hundreds of miles away to enjoy yourself.  There's lots of fun to be had right around the corner!!! 

Our Drive to Fin & Feather and Tenkiller/Pine Cove

we had a great time this past sunday...we took a drive up to Fin & Feather and then went to Tenkiller State Park.  i think we were happy to just get out of the house.  our 100+ temps this summer have been just awful...we're ready for some cooler weather for sure!!

here's jocelyn enjoying her time at the park

logan had a fun time too

my beautiful jocelyn abigail...prettiest ANGEL ever!!

i love this little guy

she was climbing all over the playground...i love to see her have so much fun!

"Life Ain't Always Beautiful"

     i've been doing alot of thinking lately...ALOT!!  tons of thoughts running thru my mind about life & how we all have our own lives to lead & how we all have different personalities & qualities that make our life what it is.  i've also thought about how some of us have had huge hurdles to jump, whereas others haven't had much jumping to endure. 

     i've tried to reason out why some people have more of a laid back life while others seem to just struggle so much.  i'm not so sure that it's just that simple...i think it also has alot to do w/ how we as individuals handle obstacles & challenges we face.  i will admit that my life as a whole has been pretty much on the rougher side...growing up w/ a single mom, not alot of $$$, having just what you need, your dad not in the picture for the most part...it can be hard on a kid.  but somehow i managed to make it thru school ok.  not sure how, but i pulled off making the football cheerleading squad (which back in the early 90's at good 'ol Sallisaw High was saying something!!!)  thank goodness for sweet tokens like that to help an extremely self-conscious girl keep her head up in a world she felt so small in.  nothing like being the only girl on the cheer squad who had to have an after-school job in order to buy the right brand of clothes...no way was my mom gonna spend that kind of cash on shirts or jeans, & now having my own kids, i can so see why!!  but i wanted what i thought was the right kind of clothes to keep me welcome in my circle of friends, so a job at the local Pizza Hut was in order.  i can remember feeling so out of place most of the time within the realm of cheerleading.  i mean, my dad wasn't a dentist, lawyer or football coach; shoot, my dad was never around, he was long gone by the time i made cheerleader...my mom wasn't a stay-at-home "soccer mom" type, she worked hard all the time.  i came from a broken home w/ a broken bank account.  but i made it thru.  i got up everyday, put on my clothes that my waitress job paid for, & went to school w/ the fakest smile ever.  sure, to everyone i seemed happy, real put together.  but behind that smile was fear.  fear of never fitting in, fear of people judging me because i didn't have the right house in the best neighborhood or my parents didn't have the right job.  thank goodness high school came & went as fast as it did.  that whole trying to fit in aura is downright awful. 

     now fast-forward to adult life...talk about some major bad choices resulting in some real bad outcomes, but luckily i've learned to deal w/ what has come & made the best of life as i know it now.  i won't go into details, some things are better left unsaid...& that's where my deepest faults & failures will remain, unsaid.  however, i will share w/ you the feelings i have encountered along my journey into adulthood.  i have experienced love, heartache, betrayal, compassion, regret, empathy, anger, forgiveness.  forgiveness, there's a powerful word...not only do we need to be forgiven sometimes, but we must also be willing to forgive others as well.  i have walked both sides of this fence to the fullest...i have done wrong & i have been treated wrongly.  john & i have both made drastic choices that resulted in heartache for one another...but thru forgiveness we have endured & i am thankful that we have been able to be so giving to one another.  that being said, i think life can be smoother sailing without all the pain & anger that we sometimes hoard within ourselves.  for instance, my father has not always been the best father to me or my brother.  it took many years for me to truly get over the "let down" feeling i had towards him.  but over time i have finally felt the need to just "let it all go"...it was yesterday, today is here now...live for now.  it's all in the way you accept what has occured in your life & how you will react to those things & how you move on towards your future. 

     i think the most challenging thing EVER thrown into my life is the disorder that my sweet jocelyn must endure.  i say that jocelyn endures it because i believe that is exactly what she is doing...enduring.  she is trapped in this little body that doesn't work like mine & yours.  she has so much she wants to say & do, but she just can't, her body just won't allow it.  i can honestly say i feel ashamed right now...ashamed because usually i get frustrated about her disorder due to the chaos it has caused to MY life & not so much hers.  i constantly dwell on the things that I'M missing out on, but look at what all jocelyn must sacrifice.  she goes without a voice, while i have mine.  her legs do not work the way mine do.    she still must use a diaper & she's 7.  you know, many people have had struggles, some worse than others.  i feel like i have really gotten down lately due to joce's disorder...i have sat for the past few days & just dwelled on the negative things that angelman syndrome has brought into my life.  enough is enough...i have to get over this.  i need to wake up everyday ready to face the world & life i now own...the world that has been in existence for centuries & my life that has always been but i hid away for awhile.  i must learn to take on life boldly w/ my disabled daughter right by my side.  i must be reminded of the LIGHT my daughter brings into such a dark & sometimes ugly world...i have to hold on to her light in order to make my life a brighter place to be. 

     i will continue to remind myself that i am truly blessed.  i'm not homeless...i have a home.  i'm not lonely...i have a beautiful & loving family.  i'm not hungry...i have food & drinks in my pantry & fridge.  i'm not sick...i'm healthy, i have no disorder, disease or ailment of any kind.  i'm not blind...i can see all the many wonders of this earth, i can see the beauty that God put here in nature.  i should be humbled in all that i have truly been blessed with...many times i want more of the things that this world has to offer, like fancy clothes, exotic trips, new SUV's, a cabin at the lake; when really i just need to slow down & think about what is the most important things to value.  i'm glad that God put it on my heart to reflect on the negative things i've encountered thruout my life, but i'm even more glad that He has helped me to put it all behind me.  He has showed me the true meaning of life & how to make mine the happiest it can be.  i hope that those who have taken the time to read this will also be able to find the true happiness that lies within...it's all about how we choose to respond to the life we've been given.  happiness can be found, if only you truly look for it.  reminds me of that gary allan song..."But the struggles make me stronger, & the changes make me wise, and HAPPINESS has its own way of taking its sweet time.  No life ain't always beautiful, tears will fall sometimes, life ain't always beautiful, but it's a beautiful ride."