Wednesday, December 10, 2008

Where is the MERRY this year?

Wow, this year has been crazy. I think that every person close or near to me is suffering in some way. Recently a friend of mine had her sister die, then another friend had a family member die and then last night one of my dear friends lost someone. How can this be Christmas?

About 3 weeks ago my husband lost his job. UGH....here we are right before the holidays and we have fell into the melting pot of US unemployment. I think I now understand how all of the people in the US are trying to figure out how to put food on the table. Can you believe it? One minute you are working along just fine and then the next you are unemployed. If it were a year ago, one would just go out and get a new job, but EVERYONE is out of work. EVERYONE is wondering how to pay their mortgage AND there isn't an end in site. RECESSION. I am so sad. Luckily my dear sweet hubby went back to work this week. But, I have a much different take on how quickly things can change. One minute we have a job and the next we might not. I think my lesson this week is...BE prepared.

I am so sad for everyone around me. People I know AND people I don't know. I pray that things turn around quickly. I pray that families survive.

Monday, November 24, 2008

#4 - Gratitude

"Gratitude unlocks the fullness of life. It turns what we have into enough and more." ~ Melody Beattie


This little quote is so true! I am grateful for all of the little things. Her are 2 more things that I am grateful for.

#4 I am grateful that I am a mother ~ I am grateful for the fact that moms have a special kiss that can make most things better. I am grateful for the hugs, smiles and kisses that I get from my kids!! There really isn't anything more that I need (well except my wonderful hubby). I am grateful for my kids.

Fun little activity...

Hey there, this weekend was fantastic! We had the chance to play in the sunshine and it was GREAT! Our whole family went out and raked leaves, actually it was kinda pointless because they were falling off the trees as fast as we were picking them up.....but in the mist of trying to get some yard work done, we had a HUGE pile of leaves. My girls were having the time of their life! One of them would hide in the pile, while the other one ran an jumped in. It was so fun to watch. It just took me back to when I was a kid ...THAT WAS QUITE SOME TIME AGO!! It was really a blast. We had a leaf fight and took turns throwing them up in the air....it was so fun. I love this time of year. The holiday's are here and everyone feels happy. Children's laughter just warms the heart.

I was thinking about fun little projects that we have done with our family and I thought I would share one. It is simple enough that even our SPECIAL little people can do it.

Button Cap or Rainy Day Hat

Get an old had or one that you just won't wear because it is too big. Get a bunch of buttons (I keep a jar of buttons and add to it as the goes on, a thrift store has buttons for cheap also). Take a bottle of glue and put little dabs of glue all around, let your little one put on as many buttons or beads as they want. The more buttons, the better. If you child is like mine the small buttons are things that she likes to put in her mouth, so I use the jumbo buttons. They look SO cute. I also like to take "puffy paint" and write my kids' names on the hat in their favorite color. Let the hat dry for about 24 hours and then it is ready to wear. My little ones LOVE wearing their hats around the house.

Friday, November 21, 2008

Dr. Visit AGAIN!

We had another Neurologist Appt. yesterday....I feel like that is all I report about....I really can't wait until the day that I don't have ANY unroutine (is that a word?) DR visits.

I had to report that my little one is still having seizures, this time though, I kinda felt like Charlie Brown when he was talking. All I really heard was blablablabla...bla...blabla......I felt like going to sleep, my eyes wanted to shut and I really didn't hear anything that he was saying. Do you think that I really was tired? Maybe it was the lights? Maybe I am just tired of NOT KNOWING what the hell is going on? He spoke about putting this little thing in her that goes right above her heart and sends shocks to her VEGA? nerve every 5 minutes....are you kidding me? I don't think I am ready to give my daughter SHOCK THERAPY.....For now we just UP'd her medication AGAIN!

I think the only reason that I am frustrated is because she is so darn CUTE and HAPPY that I just wish everything else would go away. Why should she have to struggle? Maybe the struggle is all mine?

Thursday, November 20, 2008

What are you GRATEFUL for??

My 7 year old daughter came home on Monday, with a very fun project that she had to do. Her teacher told her to come up with 5 things that she is grateful for. HMMM...I was intrigued as a mom to see what SHE was grateful for...so I didn't say anything and sat back to let her explain her whole project.....Let me explain a little bit about her....she is 7 going on about 15, very intelligent and thinks that I either don't know anything or don't understand anything that she says to me. I know she is probably just like every other kid out there, but I really thought that she "wouldn't know everything" until she was at least a teenager - WRONG!! The wars have already begun.

Back to her project, she told me in detail about what her teacher expected from her and how exactly she was going to do it. I said "have you figured out what you are grateful for yet?" She smiled and said "SURE, I am grateful for my family, because without them I wouldn't know love. I am grateful for food and water because with out food or water we would starve and die, and water helps us cool off in the summer. I am thankful for school because if we did not have school, we would not be smart and we would not be able to meet new friends. I am thankful for my sister, because I love her and she is fun to play with. And, I am thankful for warm clothes to wear when it is cold." I listened very carefully to her very simple but compelling list of 5 things that she was grateful for and realized that I MUST BE DOING SOMETHING right! She didn't say that she was thankful for a video game or candy. She didn't say that she was thankful for toys or "stuff"...she was really thankful for ALL the things that I would have had on my list.

That got me thinking of a time that I said THANKS....My youngest daughter has some very unique challenges and early on in her life she couldn't walk. We had to go through some very intense Physical Therapy, along with Speech Therapy, Occupational Therapy AND we had a Child Development Specialist that worked with her as well. After a couple of years, these wonderful people helped my little girl learn to walk...first in a walker, then with leg braces and finally with out any assistance. How could I ever possibly show my gratitude to these wonderful people? I help people publish their own personal stories all the time, so I thought I would publish a "How Do I Say Thank You?" story just for them. It told how each person has touched my daughters life with their own personal magical touch and how we would not be where we are with out them. We gave it to them at Christmas time and watched their eyes fill with tears as they read their story. It is amazing to me that I still see that "Thank You" book on their desks and in their living room, even after a few years have gone by.
GRATITUDE UNLOCKS THE FULLNESS OF LIFE. IT TURNS WHAT WE HAVE INTO ENOUGH AND MORE. ~ Melody Beattie.
So, let me ask you.....What 5 things are YOU grateful for this year?

Wednesday, November 19, 2008

My little piece of heaven....the "property"


Back in the swing of things :)

I'm officially back. I got a question for ya?? Have you ever had a bad day for no good reason...and then find out that one of your kids is sick? It is the strangest thing. Yesterday, I felt "off" and couldn't explain it. I really wasn't upset, nothing was really wrong, but I felt like something was wrong. When my youngest got home from school she was a little quiet, I know that sounds strange for a kid that doesn't talk to be quiet, but she was. She fell asleep at about 5:00pm and I kinda knew something might be up. At about 2am she started to cry. I listened for a minute to see if it was just a bad dream or more...have you ever seen that commercial where thee mom and dad are laying in bed and they hear the kid cry, the dad says did you hear that and the mom says "was it a mom or a MOOOMMM?"......it was kinda like that. I jumped out of bed fast enough that my husband got up too. He said what's wrong? I ran to my daughter (I know a little dramatic but for my 4yr old to cry like that is really NOT normal...so I knew something was really wrong, actually I thought it was seizure related at first). I took her to the couch and then.......we were running to the bathroom.

Man, it is horrible to have to hold your 4yr olds' head over the toilet while they scream and cry because they don't like to throw up.....

She is better now!! She has a temperature and is watching the Little Einsteins right now and it gave me a good excuse to keep her home from school so that I can take care of her.

Tuesday, November 18, 2008

It's Been A While!!!

Ok, no I'm not gone!! I have just been struggling. Like I put in my last post, sometimes it is hard enough to just "BE MOM". My little M is doing great. We had to put our pool in this summer so that we can do physical therapy and MAN what a wonderful investment! My little sunshine started swimming and within a week she could swim anywhere in the pool that she wanted to go. It makes me so happy to float around and watch her do what ever it is that she wants. She can get in the pool, swim around, play on the steps or get out of the pool an doesn't have to ask for help once.

I have been working my tail off. Between being a mom to my girls, a wife to my wonderful hubby, being the general contractor for the construction we had done...I also own two businesses. I was ready to pull out all of my hair. I think things are finally hitting a happy plato and I am feeling somewhat normal again.

Yesterday I was in the back yard, looking around at all of our "SUMMER WORK" that we just finished a week ago and had the most amazing experience. My little M was playing on the swing set and stopped swinging. She stared me right in the eye for about 30 seconds. It was if she was trying to talk to me. She gave a little smile and then I smiled and gave her a simple little head not that said "come here". She got up off the swing and came over to me and got on my lap and stared out at our finished work with me. I was dumbstruck. She actually sat there for quite some time. Sometimes I could just hold her and hug her until the end of time. I think she is an angel sent from heaven just for ME.

I am so grateful to have her!

Monday, August 4, 2008

Monday Motivation - Dare To Dream

Dare to Dream
Don't be afraid to aim
For the highest peak
It is there that we see
All that is possible
All there is to hope for


I have had a rough week so I haven't been blogging much. My daughter has had lots of seizures. Sometimes it just doesn't feel like I can be much more than MOM....

Today I am feeling better and found this fantastic quote and thought it fit my mood perfectly. I dream that one day I won't have to sit back and watch my daughter suffer. I dream that one day her body will be strong enough to out grow the seizure, ataxia, motor delays and every other challenge she faces, for this I am HOPEFUL!

Friday, July 25, 2008

BODY SOX??? I Want One!!!



I found this very cool new thing, it is called a body sox. My daughter has Ataxia so deep pressure and body awareness is always something that we struggle with. My little girl would have a BLAST playing in one of these.....well actually my family is just crazy enough that we would ALL be playing in these (in the secrecy of our own yard :) ) I think it would be fun to play the dance freeze game!!! LOL



I found Terri Mauro's write up about Body Sox and she has given us five great ways to use Body Sox.

Body Sox are colorful bags made of a stretchy, see-through, breathable fabric. They have a long slit on one side that makes it easy for your child to get in and out. Exploring the boundaries of the bag provides comforting deep pressure and awareness of body position for your child. Besides the fun of exploring the boundaries of the bag, your child may find it very calming to have the world shut out for a while. Here are five things to do with that bag, for starters. You can order one through the equipment catalogs on the list of Sensory Integration Tools and Toys.
1. Have your child stand inside it and push against the sides with his hands, or lay down and push with his feet.
2. Start your child off in the bag when making him into a burrito.
3. Let your child walk or crawl around, with your support and protection.
4. Play a "dance and freeze" game, and take pictures of the funny positions your child winds up in.
5. Use it as a calm retreat when your child is in sensory overload.

For more info about this...follow the link

http://specialchildren.about.com/od/sensorystrategies/qt/bodysox.htm

Thursday, July 24, 2008

Did you know...our kids can do anything!!

I recently ran across this wonderfully uplifting report done by ABC News -Cheerleaders Find Destiny, Troupe Geared Toward Special Needs Girls Spurs Astonishing Changes. The article was written last October, but it is a reminder that the only limitations we put on our kids are in OUR mind...as far as they are concerned...they can do ANYTHING.

If you would like to read about this wonderful program follow any of these links:

ABC ARTICLE: http://www.abcnews.go.com/GMA/story?id=3673974&page=1
WASHINGTON POST ARTICLE: http://www.washingtonpost.com/wp-dyn/content/story/2007/09/20/ST2007092002763.html?sid=ST2007092002763
DESTINY PROGRAM: http://www.dreamallstars.com/cd/

I hope my daughter wants to be a cheerleader, OH YEAH...she is a budding artist :)

Wednesday, July 23, 2008

Wordless Wednesday....cutest little Easter bunney EVER!

this is an old picture but I just couldn't resist sharing it!

Markers, Markers, who's got the Markers???

Well, today was a hard day....isn't it amazing how much of a roller coaster life really is? I decided to fight with my oldest ALL day. If she was a teenager I think I could understand it....but she's NOT.

"L" loves to color and today she decided to color me a beautiful card. In the excitement of having some girls come over for a slumber party this weekend, when she was done coloring the card she left the markers on the couch. She ran off to her room to get it ready for the girls that were arriving.

My youngest thought this would be the PERFECT time to kick back on the couch and work on HER artwork....and have a little snack.....and do some body art.......really I didn't think she was going to be the artiest that I found out she is. In a matter of about 5 MINUTES (really doesn't take long in our house for chaos to hit) I walked back in the room to find my beige couches with scribble rainbow marks ALL over them. Green must be her favorite color because she had it ALL over her belly, arms and legs.....her lips were red and blue.....they must have appeared to be the best snack in the house because when I found them she had SUCKED the color out of them and eaten the caps! OMG!!!!!

My poor little "L" got the brunt of my anger. "HOW COULD YOU LEAVE THE MARKERS ON THE COUCH?????" I yelled.......Everyone in our family knows that we NEVER leave markers or crayons within reach of "M"......Now looking back it was an honest mistake on her part. A typical thing for a kid to do....sadly things aren't typical in our house.

I feel bad tonight for my oldest....she really is getting the raw end of the deal. She thinks that her sister gets all of the attention (therapy, meetings, special schools, bus rides...you name it), L gets in trouble for things that are really normal, but could seriously hurt her sister.....they share a room and "L" has to pick up more stuff than "M". The balancing act that we have to do as parents of a special needs child (and typical child) is fragile.......

Tuesday, July 22, 2008

Speekings of a child?

All to often I forget the my little girl is getting older. I think part of the reason is because she doesn't talk. She just seems younger than she is. This weekend she got to spend the night with Grandma and Grandpa. When she came home she seemed a little standoffish, (is that the correct spelling???). Grandma and Grandpa came over a little after she came home and she didn't want anything to do with me. WOW...that is different, normally she is glued to my hip. Finally after about 3 days of her showing me that she didn't appreciate me going away for a night, she warmed up to me again. On Sunday we were playing and at a one special moment I looked into her eyes and saw that she is growing up. She isn't a baby anymore. She has likes and dislikes. It is harder to tell what they are because she can't talk yet, but she still has them. I decided that we need a better communication system...somehow I need to know what she wants, likes, doesn't want.....

I know, all of you speech pathologists would tell me to have pictures or signs....that just doesn't work very well in my home. We are spontaneous, on the go, always have things going on - we don't always know the sign or have a picture handy....I wish there was a magical device that could read my little M's thoughts and speak them....

OH, the wonderful world of special needs. It is forever adventurous.

Friday, July 11, 2008

FREE THERAPY....Bubble Blowing

My daughter doesn't speak yet and "lip rounding" is VERY challenging for her. We have used bubble blowing therapy for several years. We never realized that blowing bubbles was so therapeutic! Take some time, have some fun and blow bubbles....its FREE!

I found this great website that offers a recipe for making your own bubbles, I use some scented dish soap so for scented bubbles....have fun!

http://www.cerebralpalsy.org/category/treatment-and-therapy-news/

#1 on the list of free therapy- Blowing Bubbles!

Yes, this is one of the most effective things you can to to develop muscles needed for speech. You use the same muscles to blow bubbles as you do to form sounds in speech.

Here is cheap and easy bubble recipe :
Bubble Recipe1/2 cup of dish washing liquid (Dawn or Joy)
2 cups of water2 teaspoons of sugar
Add your choice of food coloring if you like.

Here is more information about cerebral palsy therapies.

Thursday, July 10, 2008

Don't think negative thoughts

Did you know? Strong negative emotions lead to damage of immune system.

Wednesday, July 9, 2008

Sunrise


I love this picture. It reminds me of a VERY special place to me.

Tuesday, July 8, 2008

Holding Back the Tears

It is a HOT HOT HOT day today. I walked outside at about 6am and it already felt like it was 80 degrees. UGH......smoke fills the air and the heat is smothering.....what is the world coming to? Global Warming?

My little one rides the bus to school. I spoke with one of the other bus drivers a couple of weeks ago and mentioned that the heat was affecting my daughter because her latest medication keeps her from sweating, therefore when she gets hot her temp rises and rises until eventually we end up with heat stroke or something.....who in the world should have to worry about this.....definitely not a child! I have to always carry a squirt bottle or little mister with me where ever I go. My poor little angle. Anyways, I told this bus driver about my daughters ability to over heat and she said I should request a bus that has air conditioning. I really don't like to put people out and decided not to call the transportation department. Mentally, I decided to pick my daughter up when it was to hot so that she can cool off in the nice A/C of the car. Well, today I went to put my little one on the bus and told the driver that it was just to hot and that I was going to pick her up from school myself and the driver looked at me and said......"OH GOOD!Your daughter has been on my mind for the last day or so. I have been worried about her being on this hot bus. I am glad that you are picking her up.".................I can't express how terrible I feel right now. Our bus driver felt bad for my daughter and did not say anything to me? Should I even be putting her on the bus at all? Am I a bad parent? Why do I worry about putting others out, I should have told them I WANT an A/C bus for my daughter?

Sometimes I just need a little break and with the price of gas, I thought I was doing the right thing........

Monday, July 7, 2008

Adversity

If we had no winter, the spring would not be so pleasant;
If we did not sometimes taste of adversity,
prosperity would not be so welcome.

~Anne Broadstreet

Right now this fits right into my life. I can't wait until the adversity passes so that I can have a taste of prosperity!

Tuesday, July 1, 2008

I am having a special needs moment!

OK....I just can't kick myself back into gear. I am SO overwhelmed right now. We have this construction project that is literally making me sick to my stomach and is TOTALLY over budget now AND now to top it off my little one had 5 SEIZURES yesterday....what the hell? Now I have to tell her Neurologist and he is probably going to mess with her medications and try to get them back under control. I think I could literally scream.

My mother-in-law called me about something totally stupid late yesterday. She sat on the phone rambling on and on about things that really don't matter. I pulled the phone away from my head and literally looked at it and thought....WHAT THE HELL....doesn't she realize that some of us have REAL issues going on in our lives. Does she really think that I have time or energy to waste on stupid SH** right now? UGH.....

I am tired of my little girl having to suffer! I only really have one thing to say right now....

WHY???

Friday, June 27, 2008

Dylans Couch

OK...this has really been the week from hell. We have has a construction project go TERRIBLY wrong...talking about $10,000 wrong!!!!! I haven't blogged in a week, haven't slept in a week and my business has had to be put on the back burner.....My husband tried to remind me that "it could be worse"....thanks honey.

I AM SICK TO MY STOMACH!!! Who has 10K lying around their house????

Well in the effort of trying to get back to the land of living, I ran across "Dylans Couch" on youtube. This kid is funny!! You can check him out. The first one I watched was "the note" then I watched some of the others. Funny Kid! Maybe he can bring a little cheer to you as well. Stories are kind of long, but if you have the time to watch...you won't walk away with out a smile.

Happy Viewing!

Monday, June 23, 2008

A Work in Progress

All to often I think about my daughters future. Sometimes it really bothers me to think about how things might be. I recently found this quote and it has helped put things into perspective. Her future is not set in stone. ANYTHING is possible.

" Your future is not an occurrence but a process, a work in progress. It's a road you have to pave. The hardships of life should not destroy your capacity to do well. The state of your life is nothing more than the reflection of the state of your mind."

Written in 2008 by Khothatso Tshirufu --- South Africa

Monday, June 16, 2008

Our Inspiration

Typically on Monday morning I search out and try to find the perfect quote to start my week out just right. The quote is something that goes along with my mood. Dealing with special needs sometimes means that you have HIGH highs and LOW lows. As someone who strives on planning things well and organizing my life this is something that doesn't sit well with me. You want to know how to shake up my internal emotions? Put me on this roller coater....It is truly a struggle sometimes.

My Monday motivational quotes help keep me on the right track. Today as I was trying to find the right motivation, I can't help but to think of something that happened on Thursday of last week.

There is a little boy that goes to school with my little M. We have heard stories about him for years. At first it was just stories about a little boy that got a walker and took off walking in it. He then fell down and became very afraid of walking. We didn't know his name at this point, because the stories were coming from his therapists and they couldn't share his name for medical reasons. Then my little M took off walking in the same fashion. She got her walker and next thing we new she had her new found freedom. We were off to the races...Literally. I had to run everywhere to keep up with her. You know what is odd? Have you ever thought about what a baby sees when you carry them? Think about it....they have to see things at our speed, they see it from our level, if something catches their eye, they can't stop and check it out. Well I carried my daughter around for about 3 years, never once thinking about what the experience was like for her. Then we got the walker, and for the first time, I let her explore at her speed. The first thing that struck me, was when she walked up to a car tire and stared at it. She reached out and touched it. Then she walked over to the rose bush that I had walked past every day for 3 years and checked it out. We took a walk around the block and saw cats, bushes, flowers, and gutters with water in them. It was then that I realized, up until this point, her life was going at my speed. It was exciting for both of us as she started to explore things at her speed and level.

Back to my story about this little boy...this year when we started preschool we had the honor of being in his class. It is funny because I felt like I already knew him. I had heard all of his triumphant stories and how he had overcome some of his obstacles and now we get to be in the same class. He is a VERY happy little boy, an inspiration to MY family. I saw his Mom leaving the school and stopped to speak with her and share with her how much her son has influenced my family. I shared with her that my daughter follows his path. She was a very passionate mother as she spoke about her son. She told me about how her son's grandfather recently asked when his grandson was going to run. He said "he is always left behind when the other boys go off running around", The Mom said he would run when he was ready to run. Then one day he took off running. She said they don't pressure him to do things, they just support him with what he is doing. She said he would eventually do everything he wanted, on his own time schedule, not ours. She also said not to worry about my little M. She said M would do what she wanted when it was the right time for her.

Her words were very inspirational since we have followed this little boys path for quite some time now.

I'm not sure if this counts for a Monday Motivation or not, but it is very motivational for me.

IN THE SPIRIT OF MY FEELINGS TODAY, I FOUND THIS FANTASTIC QUOTE:

Albert Schweitzer:
At times our own light goes out and is rekindled by a spark from another person.Each of us has cause to think with deep gratitude of those who have lighted the flame within us.

Thursday, June 12, 2008

Did You Know?

Your body is creating and killing 15 million red blood cells per second!
**
Or
**
In space, astronauts cannot cry properly, because there is no gravity, so the tears can't flow down their faces!
**
or
**
An earthquake on Dec. 16, 1811 caused parts of the Mississippi River to flow backwards!

Tuesday, June 10, 2008

QUIT COMPARING!!!

Ok, this has bothered me for a VERY long time. Yes, I am a parent of a special needs Angel, and Yes, I am also a parent of a "typical developing" angel as well.

I have some friends that have a special needs daughter and every time we get together, it seems like we have a contest to see who has improved more. I can see them over there watching my little one and grading their own daughters disabilities based on the severity of my daughters condition. It really pisses me off! Get over it people, your daughter has special needs....quit living in denial. What ever her degree of disabilities are, they are real. Yes, she needs to wear orthopedics. Yes, she is in a special needs school. Yes, she may always need a little extra help..... SO WHAT....DEAL WITH IT. Your daughter is beautiful and she is an amazing little girl.

I have watched this happen many times with other special needs parents. We meet and start chatting about our kids. Watching each others kids, trying to spot what is wrong with them. We talk about medications and diagnosis....but really the whole while we are trying to figure out who is worse off. WHY DO WE DO IT???

Now for all of you with your "Normal" kids....Please stop walking on egg shells around me! I love the fact that you just had a beautiful baby. I love the fact that your kids walked at an early age. I love the fact that some of you have kids that borderline genius. I AM HAPPY FOR YOU. I mean it. You do not have to be afraid to hurt my feelings by sharing your perfect children. Yes, it may sting a little when I see your 3 year old run up and say "I Love You Mommy", but that is OK. I am still HAPPY for you. Please don't be afraid of me or my feelings. I want to hear your prideful stories. I want to feel joy for you.

For as much as I would love my daughter to say those three words, she just can't yet. I truly believe that she will, when she physically can. Even though she can't say the words...I get the message in other ways....it really takes a special someone (maybe just a truly devoted mom) to look into the eyes of their child and see the universe. I think sometimes looking into her eyes, I can see her tell me she loves me. It is magical. Sometimes she can look at me and make me melt. Maybe it took being a parent of a special needs child to slow me down enough to appreciate those silent messages.

So, all I am asking is let my little one be. Let her excel with what she can, let her show you how hard she is willing to work. Let her be the most perfect kid and quit grading her. Let your own child shine and grow. Be proud of your kids accomplishments and don't be afraid to share them with me, just because you THINK that you might hurt my feelings.

Monday, June 9, 2008

Motivational Monday

"Doing what you love is the cornerstone of having abundance in your life."
--Wayne Dyer

Tuesday, June 3, 2008

Don't Forget the Other One

OK....I know how important it is to be sure to show each of my children how much I love them. I think overall I do a pretty good job, but lately I am finding it harder to show my oldest the same affection. I think that partly it is because she is growing and becoming a "little person". She has her own style, attitude, like and dislikes. As a parent it is a little frustrating. Well....maybe frustrating is a little harsh. It is just hard. My youngest, my special needs child, is still young enough that she likes having me around. She doesn't mind me doing things for her. She still wants to cuddle. Not to mention she is just "pure love". There really is no better way to describe her. I don't think she has an ounce of bad intentions in her. As a mom, I don't EVER want to show one child more affection, love....well anything more than the other. IT IS REALLY HARD.

I only know what it is like to have two VERY different kids. Sometimes I wonder if it is my little one's disability that makes me want to favor her. Is it because I feel like I need to protect her more? What will it be like when she is an adult? Will I still feel this way?

I wonder if ALL mothers have this struggle?

Monday, June 2, 2008

Motivational Monday

I love getting my week started with a little jump start! Sometimes I search for great motivational things that I can use when I am down and out. Being a Mom of a special needs daughter means that we go through many bad days...especially when doctors are involved. I grab onto any inspiration and motivation I can get.

I decided maybe there are others out there that need a little boost......So here you go. I am going to share my Monday Motivation with you and hope that we all start our weeks out right~



"The only disability in life is a bad attitude." ~ Scott Hamilton

"There is no easy or quick plan to happiness, there is no single spot where you can start. Where you are right now is the best place to begin. Be careless in your dress if you must, but keep a tidy soul." ~ Mark Twain

Friday, May 30, 2008

The Morgan Project

As a parent of a special needs child I KNOW how expensive it is. We have had our share of medical equipment, medication, Doctors and specialists....UGH...it is extremely exhausting. I am always looking for ways to help. In doing some research I ran across The Morgan Project. I haven't actually used them yet, mostly because I just found them, but this looks like an exception program. Even if you don't need the money or have a special needs child....this is a great program to donate to. The Morgan Project is a 501(c)(3)non-profit organization. If this GREAT cause can help even one special needs child or parent....it is worth passing along!
You can find out more about them by going to www.themorganproject.com. Here is a little bit about their "mission"~
"Working together to promote awareness and support of parents caring for their special-needs children, and to enhance the quality of life for these special families."
Our Mission is to provide support to parents/caregivers and act as a reference source for information, financial resources, used equipment exchanges, research and clinical studies, support groups, web links, etc. This will be done in the form of creating an interactive website, and monthly newsletters.
To try to consolidate, and then disseminate, all the available information tools available to caregivers, from sources such as the Internet, newsletters, parenting organizations, support groups, etc. There is a lot of information out there, but it takes so much time to search for it that most caregivers just don’t have the time to spare to look for needed assistance on their own. We would like to put together a newsletter that would be a source of information for parents/caregivers to help them help their children.
To make small individual grants (products & services only) to parents/caregivers of special children for travel expenses to attend medical conferences that they would not otherwise be able to afford to attend. No parent/caregiver, or their family for that matter, should have to “bleed” in order to give their child the opportunity to be evaluated by experts, and to seek the support of other families in the same situation.
To make small individual grants (products & services only) to parents/caregivers of special children, for things like positional seating, adaptive car seats, durable medical equipment not covered by Medicaid or Insurance, and other non-covered items that would make caring for these children easier on the parent/caregiver and help to improve their quality of life.
PRIMARY GOAL
Our primary goal right now is to aggressively seek corporate sponsors, large donors and dedicated volunteers in order to become a viable organization, make valuable connections & tap resources in our community, and to continue to raise funds in order to provide the goals of The M.O.R.G.A.N. Project.

Thursday, May 29, 2008

Proud Mama

Today I attended my little ladies graduation from pre-school. Well actually it was from one class into another. I have to share the abundance of emotion that I have right now.

It is an AMAZING site watching the little people fight for every little accomplishment that they make. They NEVER give up and work harder for things that most take for granted. It is equally amazing how truly dedicated and caring the staff and teachers are at our school. I watched each student (about 25 or so) get special recognition for every accomplishment that they did. I have witnessed each of these kids grow, mostly because in the small world of special needs you meet everyone through early intervention. A lot of these kids have we have known for 2-4 years already. As I sat in my chair listening to all of the accomplishments, my mind can't help but to go over each little step that my lady has made. I teared up.

Then from across the room I heard my little lady call my name "MaMa". That makes my heart warm because she can't say many other words verbally but she can pick me out of a crowd and call my name. The pride that I have right now is beyond measure. I love my little sunshine....my pride and joy!

Sometimes I WISH the rest of the world would take a lesson from the world of special needs:

Cherish every accomplishment. Always do your best. Let go of the little thing that don't really matter and cheer on your neighbor. If you fall down get back up and try again. So what if you don't do it perfectly. Smile. Celebrate. Love. Laugh. Play. Listen. Sing.

Did you know?

Approximately one-sixth of your life is spent on Wednesdays.


:)
Cherishing Mommy

Sunday, March 30, 2008

The New Bike!

We got it....the NEW BIKE! How cool is it to watch your 4yr old sit on a tricycle and ride it for the first time? Most children get to ride a "big wheel" or tricycle or scooter at the young ages of 2 and up, but for us it has been a feet just to learn how to walk. If you would have asked me a year ago if my little one would be riding a big girl bike on her 4th birthday, I would have teared up and said probably not. Now I am tearing up and telling you YES....SHE DID IT!

She is so proud. The bright, beaming eyes tell it all. She might not be able to vocally tell me what she is feeling or how proud she is, but I know by the smile and eager eyes. She won't go slow on it. The new found freedom has her trying to keep up with her big sister....oh brother...we are now getting some knee pads and elbow pads :)

On a little different note, we are still unable to get our seizures under control. She had 4 yesterday....Her Neurologist has suggested changing her meds to either Topomax or Depakote? Probably don't have them spelled right, but I now have to research them...Oh how I wish I would have gone to school for my PHD....I could have been a doctor. Maybe I was meant to find and cure my little ones mysterious illness....

Still in limbo....probably always will be.

A Special Place

There is a special place in life,
That needs my humble skill,
A certain job I'm meant to do,
Which no one else can fulfill.

The time will be demanding,
And the pay is not too good
And yet I wouldn't change it
for a moment -- even if I could

There is a special place in life,
A goal I must attain,
A dream that I must follow,
Because I won't be back again.

There is a mark that I must leave,
However small it seems to be,
A legacy of love for those
Who follow after me

There is a special place in life,
That only I may share,
A little path that bears my name,
Awaiting me somewhere.

There is a hand that I must hold,
A word that I must say,
A smile that I must give
For there are tears to blow away.

There is a special place in life
that I was meant to fill.
A sunny spot where flowers grow,
upon a windy hill.

There's always a tomorrow and the
best is yet to be,
And somewhere in this world,
I know there is a place for me.

Tuesday, March 18, 2008

Sorry....Sorry.....

Ok...I am feeling horrible right now, I have managed to come down with some sort of Vertigo (or something) and I can't barly look at my computer (or anything else for that matter). I have been unable to reply to all of the emails/comments and stuff comming my way. For all of my Friends, Family and New Found Friends, thank you for all of your thoughts and prayers! It is greatly appreciated.

Please bare with me...I just can't function properly right now....I will email you all as soon as I am functioning properly.....

Friday, March 14, 2008

The Party Is Here!!

The Ultimate Blog Party 2008!!

This is my first party...but how fun! I'm glad I was invited. For anyone visiting for the first time, WELCOME! My name is Christa. I am a mom of two FANTABULOUS kids and a wife to my hero. I own two business and keep busy being the supermom that I want to be.

I create story books and love helping others do it as well. Pictures and stories are my life. I have an afterschool program that I do for my school district that helps kids write and publish stories...I guess it is my way of giving back.

Now tell me about yourself! I hope we can be friends!

Thursday, March 13, 2008

Another One of Those Days

I think yesterday was what I would consider a terrible day. My husband keeps telling me that it could be worse, but as a mom, a sick child is a sick child and nothing is worse than that.

My little one went to school and after being at school for about an hour I got a call that she had a seizure. I hate seizures. She hasn't had an awake seizure in about a year and before that it was about 2 years. Something is always really wrong when she has awake seizures.

Last week (Thursday to be precise) our Neurologist decided to increase her Keppra by 1.5 ml...now that might not seem like a lot, but when you are dealing with kids and everything is based on weight....this is alot. I always freak out about the medication for some reason. It freaks me out to drug up my child!

Yesterday, after our seizure crisis, I had to speak with our Neurologist about the fact that we just increased her meds and now she is having awake seizures....he decided to increase the other med.....UGH.....THIS JUST SUCKS.

I then went to the school to see how she was doing and found out that she might have had a seizure on Tuesday as well.

****** Here is what I just don't understand.......WHY SHOULD ANY CHILD HAVE TO BE SICK? WHY SHOULD ANY CHILD HAVE TO SUFFER? WHY THE HELL CAN'T A MOM HAVE SUPER POWERS TO HEAL OUR KIDS?

I hate sitting by helpless. I hate having to rely on others to care about my child as much as I do....I hate knowing that when I walk out of a doctors office, that some other sick child is going to walk in and I am now "out of sight, out of mind".....

Wednesday, March 12, 2008

A Heart For Children

One hundred years from now
it will not matter
what car I drove,
what kind of house I lived in,
how much money I had in the bank,
Nor what my clothes looked like.

One hundred years from now
it will not matter
what school I attended,
what type of typewritter I used,
how large or small my church.

But the world may be
a little better because...

I was important
in the live of a child.

~ Author Unknown ~

Monday, March 10, 2008

Overcoming Adversity

There is a little bit if excitement building around our house, as my little M is getting ready to celebrate her 4th birthday. She has learned to ride a tricicle in the past two weeks, so we have decided to get her a new one for her birthday. We went shopping this weekend to see what was on the market. I am so excited for her. Although, we have found out that we need a special seat, so that she doesn't push off the back. We also found out that we need these special foot pedals so that her feet will stay secure while she rides. All in all our little tricicle is going to be about $500...but she is worth it. The independence she gets from riding her own bike is evident in her HUGE smile as she pedals past us.

We also got to go out onto our little playgound in the backyard this weekend. We managed to put up some little safety rails on the slide and now she has full range of the back yard. There isn't anything that can hurt her, well except the typical risk.

Have you ever set back and watched a kid play on their own terms? Try it sometimee. There really isn't anything like it. My pride and excitement was bubbling over. I watched my kids play together....it was so NORMAL, which isn't a word that we get to use very often. I put a blanket in the grass and just watched...I didn't say a word. I didn't flinch, when my little one was hanging about a foot off the ground as she was slipping off the slide ladder....I didn't flinch, I just let her work it out. I let her be her...I let her figure it out....as a MOM it was liberating....as the biggest fan of my daughter...It was EXCITING.....


Here is a quote I found:

"It doesn't make any difference whether what you face is something that affects your work, your personal relationships, your sense of security, your appraisal of self-worth, or your appearance--the way you think about your situation largely determines whether you will do anything about it and what you will do."~ Dr. Arthur Freeman and Rose DeWolf

Friday, March 7, 2008

Speech Therapists

Ok..now I really don't want to offend anyone, but I just don't know what it is with Speech Therapists. I can get along with just about anyone, except Speech Therapists. Maybe it takes a certain type of person to do that job and I don't get along with that type of person.....

I had an IEP meeting last week with my daughters school "team" and during this meeting our ST proceeded to tell me that my daughter doesn't talk and won't talk (well for a while) and won't work with her to help her talk. I should probably clarify that she will work with her but on a limited basis. She proceeded to tell me about the dang pyramid and how everything happens in a certain order and speech was last and that it didn't matter how much we worked with her on speech it won't help. Can you believe that???? I proceeded to rip her a new...A**. I was pretty pissed off. The meeting of 10 people turned into just her and I, everyone else just sat there stunned. I told her that "my little one is unique. You don't know when things will click. My job has her mom is to be sure to give her ALL of the tools necessary, so that when it clicks she will be ready." If I waited to work on things when my little one was ready....WE WOULDN'T EVEN BE WALKING YET!!

I will give our ST a little credit, she is VERY VERY smart. She is just very SQUARE. When you work with special needs kids you have to be able to think outside the box! Not all kids learn the same way, not all kids have the same triggers...my daughter will do ANYTHING for you....you just need to think of an abstract way to show her it is important. I am a MOM not a DOCTOR, so I have to rely on people to tell ME what to work on. I really don't want someone telling me it is a waste of time. Let me decide that.


*****

"If you don't know where you're going Alice, how will you know when you get there?" From Alice in Wonderland

Wednesday, February 6, 2008

Syndrom??

I spoke with our genetics doctor and it looks like we had a chromosome test come back with an "abnormal gene". It was the RETT Syndrom gene. UGH. I guess superficially I don't really care about this, because I LOVE my little M and think that she is the GREATEST thing that has ever blessed my life....but it eats me up to know that this isn't something that she might out grow.

Ever visit to the doctor's since her birth, has held some sort of hope. The doctor's always said "she will probably out grow this". Their biggest reason for saying that is because they haven't been able to find ANYTHING wrong with her. The only thing that they know is that she has global delays, Ataxia and Seizures. NO REASON for any of it.

I am supposed to go and have the gene test taken now and then my husband will have to have the test so that we can rule out the chance that it is a fluke, that is abnormal gene in either of us and just passed down to her. The only good thing is that she isn't showing signs of RETT Syndrome, yet.

On a little bit better note....

My little M was TERRABLY sick last week. She ran a temp of 103.3 for about 4 days. She really runs the high risk of having seizures when she has a temp that high. GUESS WHAT!!!! Even with the high temp, we did NOT have ANY seizures!!!!! YAHOO....the doctors and my family were so worried....

We are so BLESSED. Thank you for our little M.

Wednesday, January 9, 2008

Postive New Year

A new year has arrived...can you BELIEVE it?? I am a pretty positive person, but this year I want to pass along some of the positive things that I am exposed to.

I have found some really great quotes:


"The future belongs to those who believe in the beauty of their dreams" ~ Eleanor Roosevelt

"A Pessimist sees the difficulty in every opportunity, an Optimist sees the opportunity in every difficulty" ~ Sir Winston Churchill

MY FAVORITE...

"Shoot for the moon; even if you miss, you'll land among the stars!" ~ Karen Phelps