Friday, November 18, 2011

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

Thursday, October 13, 2011

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.

Wednesday, July 27, 2011

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. 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

Saturday, February 19, 2011

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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Friday, February 18, 2011

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 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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Friday, January 7, 2011

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!

Thursday, January 6, 2011

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? 


Wednesday, January 5, 2011

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? 


Tuesday, January 4, 2011

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.