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Happy Thanksgiving

November 24, 2011 By 2 Comments

I wanted to take this opportunity to say Happy Thanksgiving.  Thanksgiving is a day that we all share.  No matter or religious belief, no matter what we are all united as Americanson this day.  Many people have a tradition on Thanksgiving of saying what they are thankful for and this year I thought that I would share it with all of you.

NEW YORK - NOVEMBER 26: Crowds watch the Than...

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  1. I am thankful for my family.  No matter what is going on they are always there.  While I know many people cannot spend time in a room with their families and in-laws I actually am lucky enough to enjoy their company.
  2. I am thankful for my babies.  I had been told when I was 20 that it would be near impossible to have children.  I remember feeling as if my life was over.  All I had ever wanted was to have a big family.  Having a Dr. tell you that your dreams could be shattered is never easy.  I showed them though.  I have 4 beautiful babies and the big family I had always wanted.
  3. I am thankful that god gives me the strength to deal with things such as bipolar and cerebral palsy on a regular basis.  I will admit that there have been days that I have been crippled by dealing with these illnesses.  I have resented god for giving my babies such challenges.  I have asked why me?  I have asked why them?  Now I accept it and we make the best of it all.  I would not trade them in for anything
  4. I am thankful for my husband who no matter what is always there by my side.  Again it is not always easy but love has shined in our lives and we give each other the boosts we need.
  5. I am thankful for my health.  In church there is a teen who has spent her life struggling with diabetes.  Recently it was discovered that she also has cancer.  As I pray for her each evening I also thank god that I am healthy, that my babies are healthy and that my husband is healthy.  There are so many things we take for granted.

Thanksgiving is a wonderful time to share what you are thankful for.  I know that some days it seems as if nothing goes right and that your life is terrible.  I think that what is important is that you put all of that into perspective.  Thanksgiving is a time to evaluate.  Thanksgiving is a time to truly look inward and discover your inner thanks.  What are you thankful for this Thanksgiving?

Becca

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Is My Baby Blind?? Part III

March 18, 2009 By 15 Comments

So there I was at home that afternoon.  Abigail and Emma were still in school.  This meant that I could look online and learn all that I could about blindness in infants.  I know that babies are not able to see well the first few days of life.  I read and read all afternoon.  I did not see anything good.  I saw ways to help your blind child, I saw ways to tell if your child is blind and a million other things.  I kept doing the experiments suggested in hope that she would see something and I could end all of this.

So I shined a light in her eyes, I pointed her to the window to see if she would look out it.  I did everything that every web site had said to do and still nothing.  I cried for about 5 minutes and then picked myself up!  I said, “OK so she is blind.  There are worse things.  She is healthy other then that!  You can do this.”   And there it was.  Just like with the Mastocytosis (which can become cancerous), just like the cerebral palsy I could do this.  It was all going to be alright.  I said it again and again and again until I believed it.  I started to read about what to do with children who are blind.  I read all about ways to stimulate blind babies.  If I could not change it then by God I would educate myself about it. analiese-coming-home-from-h2

As I called my husband and told him he had the same response that his mother had.  I told him all the things I had been looking at and was, by this point, even cracking jokes.  I told him that we could get another dog now because Analiese would need a seeing eye dog.  He even started cracking jokes about it which are worse then my dog one so I will leave it out.  We were ready for whatever was to come.  I guess it is the kind of thing we had been faced with before.  We learned early on to accept it, deal with it and move on!  Now I was in the moving on stages by the afternoon.  That is until my in laws all got together and sent a huge margarita glass filled with flowers.  I cannot tell you what the card said but there I was crying again.  Partly because it was all too much and partly because it is always nice to know that you are loved!  Love was what I needed right now and they knew it.  That is why they are so great!

All day I helped Analiese and tried to get her to track things.  My father was convinced she was following a rattle.  I had explained to him that she was following the noise and after about 30 minutes of trying other things he gave me a great big bear hug.  This is what my daddy is best at.  It was his way of saying it is not fair.  You have too much.  It was his way of loving me.  It was his way of saying it would all be OK.  Just like daddy always does!

Becca

Links to the Full Series

Baby Blind Part I
Baby Blind Part II
Baby Blind Part III
Baby Blind Part IV
Baby Blind Part V

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Is My Baby Blind? Part II

March 17, 2009 By 9 Comments

From here I could tell that the Dr. was worried too.  He was trying not to let me know.  As he set down the flashlight that he had been shining into Analiese’s eyes he picked up a great big bright toy!  I thought that she would for sure watch this.  He moved it slowly back and forth in front of her.  She just stared into space as if there was noting there.   The Dr. then went to his tie that he was wearing, which was also bright, and waved it back and forth slowly and yet again nothing.analiese-coming-home-from-h1

By this point I was standing there watching this thinking, “you have to be kidding me!”  I had told the Dr. about my concern, but Analiese  should have come into the office and looked at him and track things and show that I am a worry wart.  She was supposed to prove me wrong.  By this point I was FLIPPING out inside.  All of a sudden he stopped moving his tie and accepted defeat.  I was right!

At this moment he said he was sending her to a pediatric opthomolgist.  He had given me a name of one and he was even nice enough to schedule the appointment.  I know from my other children and all of their issues that this is not a good thing!  It is actually a really bad thing when your Dr. feels that he needs to sit down and call another Dr.  Now I was again FLIPPING out inside.

On the way home I called my mother-in-law.  She is like my best friend.  She is the one I always call first.  Tears were welling in my eyes and I told her how the appointment had gone.  She was silent!  This is never good.  She usuaully has so much to say.  She tells you that it is all fine and she tells you that it is just a precaution.  She helps you figure out how to fix it.  This itme though she was silent.

I felt like it was 10 minutes before she said anything.  I am sure it was more like 1 minute but to me it felt like an eternity.  Here I was looking for infinate wisdom and all I got was silence!  Then she spoke and she was alomst yelling, “ARE YOU KIDDING ME!!”  I said,  “well no I am not.”  This was me stalling while still waiting for her to reassure me!  Then she said, “I am speachless.  How much crap can be put on your plate?  I just cannot believe this!”

It was then that I cried.  She was right.  I already had a child with Mastocytosis, undiagnosed bipolar and another child with Cerebral Palsy.  When would God think that enough was enough?  Why me is all I kept saying.  I am a good person.  I have always been overly kind even to nasty people.  I went to church on an almost regular basis.  Why was God doing this to me?  All I had ever wanted out of life was to be a mother and have the “perfect” family.  This mess was anything from perfect!

Links to the Full Series

Baby Blind Part I
Baby Blind Part II
Baby Blind Part III
Baby Blind Part IV
Baby Blind Part V

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Is My Baby Blind?? Part 1

March 16, 2009 By 23 Comments

analiese-coming-home-from-h

In order to tell this tale I will have to take you back almost two years.  There are two reasons that this story has popped back into my mind this week.  The first reason is that, as I mentioned a few days ago, this month is disabilities awareness month.  The second reason is because in May my “baby” will be 2!

I have to take you back to when the baby was just that, a baby!  I already had two older kids who were now 3 and 6.  They were so excited to have a new little sister.  I remember when they came to the hospital.  Emma who was three at the time was so excited about this new responsibility being thrust upon her and Abigail acted like it was nothing new but she was still excited.

As the baby grew over the next few months I noticed a few things.  She would not look at me.  In my mommy heart I knew that this was not a typical thing.  Then I started to notice that she was not tracking things at all.  In my head I kept saying, “she is fine.  You are just worried because of Emma (who has CP).”  Then I had noticed that she wanted to be held all of the time!  She hated being in a swing and would scream like she was scared if she was anywhere but my arms.

Because she is my baby and most likely the last I was kind of happy about it.  I helped her more then the others and was happy to do so.  She loved it when I played music and talked to her as long as I was holding her.

As the months went on the fact that she was not looking me in the face or tracking the fun toys I was waving in front of her was more and more obvious.  She looked through me.  Certainly not at me.  She would smile a little but was not mimicking faces.  So by the time she was three months old I was worried!  I had decided to ask the Dr. what was going on.

So as we went into her three month appointment I began to worry more and more.  I went through everything with him and when he asked about concerns I blurted out that she is looking through me!  I was on the verge of tears and took a breathe.  Then I explained how she was not looking at bright objects, she was not looking at my face, she would not stay unless held and she was not tracking.  I blurted all of this out as quick as I could.  The next part was for him to tell me that I am being a paranoid mother and to go home.  Well that is not quite how it happened.  He began to wave a light in front of her and nothing!  Her pupils were responsive but it was like she could not tell he was shining a light right into her face.  She did not blink, her eyes did not tear, NOTHING happened.

Links to the Full Series

Baby Blind Part I
Baby Blind Part II
Baby Blind Part III
Baby Blind Part IV
Baby Blind Part V

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National Disability Awareness Month

March 11, 2009 By 42 Comments
Disabled persons
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It has come to my attention that March is Disability Awareness Month.  Alright so I am 11 days late!  I just could not let it go without discussing it with all of you.  You see this is something that personally touches my family on a daily basis.  Two out of my three children have disabilities so you can see why I may find it so important.  It is something that I cannot to ignore.

Emma has mild, thank God, Cerebral Palsy.  As an infant she was not able to move the left side of her body.  Drinking bottles and eating were things that she had to be taught how to do.  She has had motor planning issues associated with this muscle weakness and has a very weak upper body.  This weakness impacts her speech, ability to run and play easily like other kids do and her ability to learn at the same rate as the other children.

As an infant we made sure that Emma received Early Intervention.  I feel that it is why she is doing as good as she is.  From the time she was 5 months old until the time she was three we would have 7-9 visits from therapists a week.  She would also go to a parent tot gymnastics program and counseling was available to anyone in the family.  New York really holds their Early Intervention program to high standards and I think that this is the only reason that Emma has done so well.

Today Emma still has some issues.  They are certainly noticable to me but if I did not tell you; you would never know.  Emma was mainstreamed in kindergarten this year.  She is behind the rest of the kids but still showing progress.  She can walk and talk although she gets tired much quicker then other kids.  She has broken out of her shell this year and socializes with the other kids.  I am so proud of how far we have come in 5 years.  5 years ago she could not move half of her body and now she is running with the other kids.  Even if it is a few paces behind she is still doing it!

Abigail has an emotional disability which is called bipolar.  This has been a tough one.  She rages, goes from extreme to extreme and is always angry.  In her fits she has told her sisters that she is going to kill them.  She throws all of the pictures off of her walls and her books off of their shelves.  She even has tried on more then one occasion to jump out of second story windows and has tried to jump out of a moving car.  She does not think through consequences and is VERY difficult.

The thing about Abigail that just breaks my heart is that she does not want to act like this.   She has cried many times after telling me that she wants to die.  She has told me that she tries so hard to keep it together.  She has told me that she just hates herself and that she is like this.  It breaks my heart.

We just started Abigail on medication.  I have read that with bipolar it is about the only way to assure that they will feel more balanced, more like you and I feel.  This is a disease that children suffer with.  I feel that medication is the same as giving a child medication for diabetes or a heart condition.  How could you not treat it.  The statistics of the suicide rate is enough to make me want my daughter on medication.  Medication also reduces the likelihood of future drug abuse.

So there you have it.   The most intimate parts of my life!  These kids are everything to me.  When I was discussing this with them they had a few things to add.

  1. Please do not look at me funny.  I am a kids with feelings just like anyone else they get hurt.  With Abigail I think that they are hurt even more then your average kids.
  2. Do not be afraid to play with kids who are different.  Once you are with them you will see that they are not as different as you thought!
  3. Be kind and respectful.  Even though these kids are not what you would call “normal” they are kids!  They respond best to kindness just as any other kid would.

I think that we should all take a little time this month to think about these children and adults.  They are still people.  Their feelings are hurt with every weird eye people look at them with.  They are hurt a little deeper each time!  Please educate yourself and your children about disabilities and why it is so important to treat everyone, including the people who are different, with kindness and respect.

Becca

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