Saturday, March 31, 2012

The Autism Factor....

I was surfing the web and I came across a beautiful site with lots of helpful information for us mommies (and daddies) who are new to this whole Autism diagnosis and what to expect...this was one of the blog posts which I found a great read:

8 Things You Need to Know about Autism

Autism touches many lives, whether you are on the spectrum, or your child is on the spectrum, a family member or friend is on the spectrum…
The fact is that the prevalence of autism is on the rise. With more children being diagnose each year there is still such a lack of knowledge as to what autism really means.

1. It’s a “Spectrum” Disorder for a Reason
You will not find 2 people with a diagnosis of Autism the same. “If you have seen one child with autism…you have seen one child with autism”. Some children are very affectionate and others shy away from affection and touch. Some talk a lot, where others may not talk at all. Of course there are similarities across the spectrum but this by no way means that each person can fit the perfect therapy/intervention mould. Each child needs a customized programme to address their differences specific needs.

2. Empathise don’t Sympathise
You need to live autism to really understand the complexities this disorder brings with it. Yes there are some Autism Savants that can do remarkable things and are looked upon as genius; however everyday autism is not glamorous. Parents need as much support as they can get.

3. People do the Best They Can with What They Have.
Parents fight many personal and emotional demons when raising a child on the spectrum. Simply saying “Well, just do this and just do that” is easier said than done. It’s good to understand that each person always does their very best with what they know and what resources are available to them. Offer help before you offer judgement.

4. Autism has Strengths as well as Weaknesses
Far too many people focus on the negative aspects of autism and what that person/child cannot do. However there are many strengths of that person/child on the spectrum as well; and these must not be forgotten but instead celebrated and embraced. Whilst understanding their weaknesses can help guide us to know where to help their learning and development, there is always great value in using their strengths to improve on their weakness.

5. The World can be Scary
The world we live in is a very dynamic place. Situations change momentarily; there is unpredictability and we constantly have to adapt to these. Autism struggles with these adaptations, the unpredictable and being flexible. These skills can be learnt through specified programmes, however without dynamic intelligence the world is overwhelming and scary.

6. Co-occurring conditions is not Autism
Along with autism often come many other conditions that people have to struggle through. These co-occurring conditions can be: ADHD, seizures, developmental delays, sensory processing disorder, dyslexia, dyspraxia, apraxia etc.

7. Words still have Meaning
Just because someone has autism doesn’t mean they can’t hear, so be sensitive to what you say as you would with any other child. Also be sensitive to their interpretation of words. Often words are interpreted literally and these kids don’t have the ‘sarcasm meter’ we take for granted

8. Autism is not Contagious
You cannot catch autism, so allowing your child a play date with a child on the spectrum will not put your child at risk of developing autism. Learning to accept and include children on the spectrum will not only benefit that child, but will also open hearts of the other children to those who see the world a little different.

This is taken from http://theautismfactor.com/ There is a lot of great information for those whose children are on the Autism spectrum.

Baking, baking and more baking!

This has been one heck of a lent season. In these last 6 weeks, Ive learned that I LOVE baking! Its time consuming but for that Thursday, after dropping the kids off at school, and I start baking...it make me feel more like a human being...a person who doesn't have to worry about breaking up fights between the kids, washing clothes...whatever. For that time, I am in my own little happy baking world (along with my little helper Gina and then when Kenny comes home...him too).
So here is some of what I do...what I've been doing every Thursday-Friday since Lent began for the last 2 years...
These are trays that we place on the bake sale table. Notice the tins on the right...those were filled with even more cupcakes that I made...

This tray had Carrot cupcakes with cream cheese frosting, more chocolate ones, chocolate chip cookie dough ones (they're the ones with the little chocolate chip cookies on top), I also made chocolate chip cupcakes
I made lemon squares with a rich topping consisting of Cool Whip, cream cheese, powdered sugar and a touch of vanilla. Topped with graham cracker crumbs.
Here are the chocolate chip cookie dough cupcakes...The princess cupcakes One of the versions of Chocolate cheesecake with chocolate whipped topping, drizzled melted chocolate and a fresh raspberry...
Here are some with the chocolate whipped cream, chocolate drizzle and raspberry...
Triple chocolate brownies with a ganache drizzle topped with mini chocolate chips. A chocolate lovers delight...
Chocolate with a surprise of chocolate, white or mocha frosting hidden in the center...
Here are some of the past weeks bake sale cupcakes and bakery that I have made...

Pizzelles with powdered sugar...
These are some of the crumb cakes I've made...cherry, apple and there is a cinnamon one...I also have made chocolate whoopee pies!
And with any leftovers, we have given them to the local police and fire departments!

Thursday, March 29, 2012

What a day


Have you just had one of those days where you think your going to get so much accomplished and then...BAM...it all goes to sh**? Well, yeah...that's the day I've had. Its Thursday during Lent, which means I start baking from the time I get home from dropping the kids off at school till late at night. I do this baking for our school/church fish fry. It is my stewardship towards our church. I am giving back rather than giving something up for lent. Well, anyhow...I do pretty much all the bakery for the bake sale and I love it! I love baking. It is my release...my time away from thinking about my daily struggles. I really enjoy doing this on a weekly basis...trying new recipes, new decorating ideas...I'm kinda using my creative skills for all of this.
So, why am I having such a hard time today? Why had it been one thing after another? Oh yeah...I have a special needs...er...uh...high maintenance child who is extremely demanding of me. He takes up 95 percent of my time...the other kids take up the rest. Today was the breaking point of knowing that my life is no longer for me. It is no longer my dreams to follow, my hopes or wishes..or even my time to just be me. I have given it up for what I have. A hard pill to swallow, especially since I have so much I WANT to do. I Love my kids dearly and love taking care of Kenny...but sometimes, I just want to me me.
With my baking today...I was forgetting this and not putting enough of that in the recipes...Its very disheartening! I had to pitch a whole huge bowl of red velvet cake mix because I forgot how much of the oil and water I put in...and tonight, I made lemon squares...they SO didn't look right! UGH. I HATE when things don't turn out the way I wanted them too.
It doesn't help that hubby is extremely busy and that Kenny and Gina were non stop screaming and crying...Kenny being very clingy and just not a very happy camper today. So, yeah..I got nothing accomplished. So I sit here at 11 at night...still having to make 6 dozen cheesecake cupcakes and I honestly don't want to. I feel like I'm gonna screw those up too. Should I wait to morning? I dunno. I just hate the fact that I cant seem to do what I want to do without other responsibilities as opposed to others in the house who has one thing and one thing only to worry about.
I'm tired...I'm ranting and raving like a mad woman..and I just want to go to sleep and let this day pass. I just wish we had more of a support system to help me with Kenny. He is so much to handle at times and I am tired....I'm so very tired. Grateful to God to think that I can do this..but questioning this greatly.
On another note. I did learn how to make chocolate cheesecake cupcakes...the taste test will be tomorrow morning :)

Wednesday, March 28, 2012

My sisters (very cute and unique) baby shower invitations...yes, I somehow found time to make them...

I did it! I finished my sisters baby shower invitations.
They turned out better than I ever imagined! They are invites in a diaper!
Here is a step by step to make these:
1) Find card stock that you love at your local craft store. They come in books that have a theme or single sheets...I went with the book of papers that had the same theme. Remember that this will offset the whole feel for the event, so make sure the papers you pick are exactly what you want.
cut two different sizes of different patterns... one will be 5x6 while the top piece will be 4.5 x 5.
Next, find the style of decorative edging scissor you want and cut 3 of the 4 sides on the smaller piece of paper that will be the top layer...leaving the bottom straight.
This is a side view of placing the paper on....the straight edge will be on the bottom. and glue it down.
Next, print out 1.5" square baby pics of the couple who is expecting...I wanted them to stick out from the colorful and busy background so in my computer, I made the picture sepia...
You are also going to cut out 2" squares of yet another pattern (yet still all within the color scheme of the papers)...and take another style scissor to the edge. Glue the picture to the patterned/cut paper square.
Make sure for the baby picture of the dad to be is on a completely different pattern and color of that of the mom to be...another pattern...the more patterns, the better! When you get both baby pictures done glue them to the main invite that you started.
Now for the wording and actual invite. Use your computer program to come up with a saying...print it out on vellum paper...make sure you cut the vellum to fit the entire invitation face. There are many different sayings, invite styles and fonts out there in cyber space.
Line up the vellum to the invite and edge the corners to a nice style.

Take the small hole punch and punch in holes on each corner.
Place little brads (there are so many styles and colors to chose from) into the holes. I chose 2 different colors...just because I was going for the all out busy/colorful/country french baby look.
You are then going to make your bows for the top center of the invite. I guess you could buy them, but I wanted the extra punishment of making my own...haha... make them little.
Attach them with glue dots...they will flatten and hold the material perfectly without a mess.
When you are done with the invite, get a package of size one diapers and place the invite into the diaper. Tie two 2' pieces of ribbon around the diaper and into a bow...
Add a little tag with something on it or where they're registered at.
Place it in an envelope and mail!
And that's how I made them ;)
Any questions...
or
if you need some done for YOUR event and you want someone else to take on the task,
I could do it for you!
Just contact me at:

Kenny playing with his cars...

video

And explaining in his own way what he did. If you listen closely, at the end you can hear him say school bus!

God has really blessed us with this little miracle! He is perfection made perfect!

Monday, March 26, 2012

Words that adds salt to the wound...

It was one of those days. It started out decent...you know, the usual Monday morning for me. I get the kids up and take them to school, come home to clean up the morning mess...all the while taking care of Kenny and Gina's highly demanding (and slightly amusing) requests for one thing or another. We then get ready and go to Kenny's therapies. This week it was Speech and Physical.
I had Kenny's feeding tube backpack on him along with his hearing aids. Now keep in mind that Kenny gets sensory overloaded very quickly. This backpack, which holds his pump has some weight to it and he loves it! It kinda calms him down like a weighted vest would...so anyhow, we get called in to his speech therapy and he walked in like he was going to take on the world today! Head up with a little bounce to his step. He remembered to sanitize his hands and turn the light on in the room. I sit against the wall while his speech therapist sits at a table with him and does small games and letter/word sounds...today was the OO sound (like moo, look, book). He was really trying to form the sounds with his mouth and was working as hard as he could.
I was so proud of him, my little man who will soon be five...trying so very hard to learn to say words and do signs....and yet deep down inside, my heart was heavy.
Having to watch my son, who has had to fight for everything...including living, struggle to do what should come naturally.
Then I snapped myself out of it and thought to myself...yeah...he's gonna show everyone. He knows everything he wants and he'll be alright...he'll be alright.
He is already trying to say iPad, school bus, bowl, ball, and more...and the signs he's learning...melt my heart.
At the end of his speech therapy, she couldn't get over how wonderful he did and how much more connected he was with her. She felt that he was finally just starting to realize that when you put a word with a sound AND a sign, it all fits together. She was so happy with him and that he was a joy to work with...which made this momma very proud.
Now off to wait 15 minutes for our next therapy session...PT (the main reason for this post)
With the backpack still on giving Kenny his feed, and the hearing aids in, we waited for his physical therapist. She came out and again, Kenny knew the drill...walk over to the handicap button to open the door, press it and see mom 45 minutes later. But before he walked in, the therapist asked if the backpack could come off (her thinking it was a school backpack). I quickly reminded her that Kenny was getting a feeding through his g-tube and that, no, I couldn't take it off...but that he'd be more that fine to do PT with it on.
To make a long story short, we both thought that the backpack would act as a weighted vest and that he's be more focused (kinda like he was during his speech therapy earlier). My last words to her was that he did great in speech...very focused and tried very hard...and hers back to me? Well, it was more of a sarcastic...well...ok, we'll see.
End of the appt came...door opened and out comes Kenny, running like usual towards me followed by the therapist. Man, I thought to myself....she looked like HE worked HER rather that the opposite. She told me that he was just not paying attention...yada, yada, yada....but the backpack DID settle him down a little...yada, yada, yada....
We made some small talk about scheduling and then the hook, line and sinker...the biggest zinger ever....
...as Kenny and I were just walking away I hear, "you know...he's got the attention span of a flea."
WHAT?
Did I just hear an adult woman, whom I trust with my son, just say this to me?
So with the minuscule of time it took to take what she said to me, decipher it, and then comprehend it....oh, did I mention, I thought to myself..OK, there is some PMS going on...maybe on my behalf, maybe on hers. Maybe I'm being too judgemental (don't go off on her)...maybe she didn't mean it such a way where she totally made my son out to be...like that of a flea...(don't go off on her)...maybe she just meant he was preoccupied or something...(for the good of God, don't go off on her Michele). Then I thought back to a couple of sessions ago when I sat in on them...and how she was short tempered with him because he didn't understand what she wanted him to do. She held his face with her hands and got close and told him that he NEEDS to start PAYING ATTENTION...to LOOK AT HER.
All this thinking (within seconds of the comment) made me turn around and smile....I just smiled and told her that if she couldn't handle his flea sized attention in just 45 minutes, she definitely wouldn't be able to handle being his mom...God gave him to the right person!
I walked away holding my son who's heart is bigger than hers will ever be...and filed a complaint. I told the supervisor what had happened...that I didn't want her to get in any kind of trouble because maybe she didn't mean it in a bad and inappropriate way. Maybe she just felt THAT comfortable with me that she could be sarcastic and compare my son who has severe hearing loss, developmentally challenged, muscle issues, who's non-verbal, has microcephaly and a whole slew of other health issues to that of a tiny bug that has no meaning except to irritate. I just don't know. The supervisors jaw just about hit the floor. He didn't know what to say except that he was sorry. He was going to talk with her. That's all I wanted. Maybe she really doesnt know all that is going on with him...maybe she only feels like he is a normal child with some muscle tone issues...if thats the case, shouldnt a therapist (who works in the same hospital where ALL of Kenny's doctors, appointments and records are kept) read through and actually SEE what they are dealing with? There is so much yet, I don't want her to get into trouble of any kind...I just want her to know that this mom of a special needs child has had a pretty rough last couple of years...these weeks leading up to Kenny and Nick's birthday/Nicks Angelversary are rough on me. Its mostly about flashbacks and tears, with still some whys and what-if and guilt (yes, even after 5 years). So please don't say stupid stuff...its almost like calling my son retarded...it really is hard to handle.
I know this isn't the last time I'm going to have to deal with this. I just pray that Kenny's feelings wont get as hurt as mine did today.
What would you have done?

Sunday, March 25, 2012

Facebook and misunderstandings

I decided to write this post in lieu of the whole Facebook era. I have been an avid FB loyalist since I tested it as a beta...years ago. Back then, it was really only games...I do believe the one that stuck out in my mind was some sort of vampire game. The status of people were short and to the point' for instance..."<--- is tired", or..."loving life". The friend list was mostly gamers...until we were allowed to start inviting people and then the word got out to EVERYONE and their mother! I now belong to many closed and secret groups...of which are my playgroups, moms boards and preemie boards that I belonged to while pregnant with many of my kids. My preemie groups are more from word of mouth from other preemie moms. I love and respect all of these ladies (and some guys) on all my groups.

I've reconnected with people that I've went to school with...uh...many years ago and love being a kind of voyer into the lives of people that at one point in my life, were there every day...through all my school years. It's been a blessing to actually reconnect with so many of those that I have missed and always wondered what happened to them. The miles and years don't seem so far away anymore. I have "been there" for my long lost friends and acquaintances for births, sicknesses, vacations, proms of their kids, and even deaths...of a family member and even a few deaths of my friends whom I still go to their wall and just remember their lives...

FB has been a blessing and a curse at times. Yes, I've gotten into some written heated arguments...and afterwords I laugh because...they're just written words. You can't really get into an argument when there is no expression to the words written...sure...YOU CAN USE CAPS to show that you are yelling, but honestly, it's still typed out words with no expression. One can easily take offense to pretty much anything typed or posted.
Yes, I've even lost family to this curse as well. You can try messaging them, but again, they are just typed words...not really any meaning to them.

I've come up with a list of things that will definitely get you defriended, blocked, or get banished to the "acquaintance" group (for those of you who don't know what this is, it is the politest way a "friend" can ignore you without actually hurting your feelings and delete your a$$. They won't see what you post unless they actually go to that list.)
And stuff that you SHOULD do as common sense as a friend or family member on FB.
It comes down to FB/Internet code of ethics...you just dont delete family once you are "friends". You can hit the "hide all posts" button so you don't see any of the posts.

1) I've learned first hand that to express a belief that you are passionate about is a definite no-no. Do NOT post anything about politics, your views on abortion, or anything that is on the news....this includes entertainment news...you know, stuff like Angelina Jolie and her husband live in partner, hottie Brad Pitt.

2) Games...sure they are fun to play but to some online...it really ticks people off to no end! Getting a game request or seeing that you played a game in their news feeds really pi$$es some off...even though it doesn't bother me but heres an idea that is directed to those that are about to do the deleting or banishing because of this...there is a little hidden "x" in the upper right hand of the post that is bugging you like nails on a chalkboard...HIT IT...it will tell you to hide all said game updates. There is also a "hide game app" area in the privacy section...or is it the acct. section? Presto...problem solved! No need to delete a friend who enjoys a game or two in their spare time.

3) Here's a biggie for me. Because I tend to tell my whole life story online...if you couldn't tell...I have found that friends and even (believe it or not) family don't care about your bad luck, your PMS moments or anything negative.
Since I am guilty for all of these types of posts, I know that these are one of the main reasons why most of my 700+ friends don't comment very often. In defense to myself, I have FB to connect with people especially those close to me. To keep them updated on my crazy life of tons of kids and my beautiful special needs/chronically ill son. This is MY life. The day in and day out, continuous worrying about one thing or another. It's about weekly hospital visits, being up all night (and I don't even have a newborn), feeding issues, medicines, etc. I don't have the easiest life so If those friends and family can't handle the updated posts on any of these things, they are living in a fantasy world where everything in life is perfect. God forbid you ruin their day/life by posting your unfortunates.

4). Not posting anything at all...ever. Like you don't even exist. This one is pretty much self-explanatory. Not ever posting will get you deleted...if you aren't on FB, your taking up space.

5). Guilty by association. Again...this one is another self-explanatory. If you are friends with someone with whom another friend got into a written war with on FB or someone dissed someone in real life...a divorce, a family squabble, or anything else...you WILL get deleted...eventually. Sometimes you will only be friends for a short time just to get information from...but believe me, deletion is on it's way.

I'm sure there is much more...but I wanted to cover some of the things that I've experienced. Now here are some ideas for the deleters...yes, you mean people that are making those you have deleted wonder and contemplate their own self worth and life...

1). you don't delete family...it's the biggest no-no ever! It will only bring things out in real life...at a party, a holiday or whatever. To be deleted as a friend while others in the family are still friends only will cause must sadness and misunderstanding. It's like deleting a friendship that you share in real life. Please rethink this. This one is very critical for everyone involved...especially if it was just some miscommunication...which is more likely what caused this in the first place.

2). If you don't like a post or feel strongly against the issue at hand...DONT respond...just keep scrolling past it. This way no one will get their feelings and emotions in a twist.

3). If you are drunk, depressed, arguing with a spouse, or suffering from PMS, it's better to stay off Facebook for a while...period! These moments in life tend to bring out the worst in one and you are apt to comment or post just to start with someone. It's almost like cyber road rage.

And to those who take a Facebook break by deactivating you account....good for you. I've done it and it is a sort of refreshing and needed break every-so-often. When you feel that life is getting out of hand. When you are at a low in your life and all you are seeing is good fortune in other posters...which makes you want to jump off a bridge, do yourself a favor and deactivate for a couple of days. no need for deletion of people. You will be hidden from everyone while you are off...no one will be able to see you even exist until you return with a better outlook.

I just want to close by saying that Facebook has been a huge blessing in my life. I've been able to share my life with so many people. I have a great support system for my life as a mom of a chronically ill/special needs son. My life is not perfect...by far and it is one of the ways I find comfort, support and inspiration from friends and family. It has picked me up when I was down. It has helped me share many triumphs and celebrations, and it has allowed me to enjoy a laugh or two, many memories and events. On my friends list, I have conservatives, liberals, straight, gay, ex-boyfriends, whites, blacks, and every color in between. I have many that don't live in the states, some rich, some poor, Catholics, Christians, Baptists, Jews, Atheists...and many more differences.
So before you decide to delete a friend, please remember we all are human and behind those words, ideas, opinions and deletions...we all have feelings!


Friday, March 23, 2012

Happy Parents Of Preemie Day!

Today, I am recognizing the courage and commitment it takes to stay strong and resilient when premature birth turns a family's world upside down. Not just at birth...but for years following!

I am a mom to 8 preemies. I am proud to say I made it through short and long nicu stays, monitors, oxygen, scary moments and monumental moments. I made it through bringing my babies home after having to leave them at the hospital for one thing or another, and I Also made it through leaving the hospital without my beautiful angel.

The road has been rough and I would of much rather of taken the easy road but that was not chosen for me...for us. Our first child (who is now 14 by the way), we went through my water breaking at 29 weeks and spending 5 weeks on bed rest...with me not really knowing or being scared about it...and I delivered a healthy but small 4.8 pounder. Our second was born at 35 weeks but spent a month in the nicu for apnea episodes. Our third was a 34 weeker but pretty big, weighing in at 6 lbs. She only had to stay for feeding issues. Sydnie and Kayleigh were both 34 weekers and even though they are 2.5 years apart they both had true knots in each of their cords...so for that, I am grateful that they both decided to come early because they could have had a cord accident in which they could have been stillborn.

Then you get to my twins...the two that changed our lives in very different ways...born at 23 weeks...a whole 17 weeks early! They taught us how to face challenges of chronic illnesses and special needs. How to deal with a death of a child and the grief that follows it...all the while still "swimming" for the sake of the surviving twin the even years later is struggling daily, the other beautiful kids at home that had to deal with losing a brother and having the other sick constantly dealing with the special needs that he has...and finally for our marriage...because no one talks about the stress that loss and sickness can wreck havoc on a marriage. We are stronger, grew closer because of it!
I used to think that my oldest son was small...but to see two 1.7 pound babies being taken from my safe and protective womb is just...scary and heartbreaking.
Finally we have our Gina. Our longest term baby at 36 weeks...just a true blessing to us all. No hospital stays or issues...and loves to be "best buddies" (as she says) to her brother, Kenny.

There were/are times when I want to wake up from the nightmare of having preemies (mostly micro preemies), but know that it is our reality...our life. A different life than what most would want. A life that has taught me that money isn't everything...family and friends are...the people that you meet in your lifetime are. Decorating your child's cemetery plot and praying that the extra plot next to him won't ever have to be used is. The experiences, good and bad are important. Watching your child who was so small play a sport, sing a song or try to tell you what he wants when he can't talk is. Doing things for others are. Understanding and forgiving is and so are A hug, a deep stare and an I love you!

Happy Parents of Preemies Day to all those parents who have ever had a preemie. May God bless you all!

Saturday, March 17, 2012

a Lenten sacrifice and Kenny update..

So I made it through week 4 of my Lenten sacrifice of giving rather than giving up...I've been making cupcakes and bakery for our church/ptu fish fry that we have every Friday! Tony, the kids and I make it our mission to help and have fun doing it!
I find it very relaxing and it's a time where I can be me rather than a mom, caregiver to a very demanding Child, where I can escape in my own little world that I call...the kitchen! Sure, the laundry has paid for it as it sits piling up until I can get to putting it away...but theres a time for everything! heck, the older kids are old enough to be doing laundry as a chore...Iay just go on strike ;)
last week was a week of doctor appts that were supposed to be routine.they ended up doing an EKG on Kenny and getting several vials of blood from him. From what his doctor said to me, she felt that he just didn't look right and all of the glands in his neck all he way down to his collarbone were swollen. I know it's not that much if a deal in normal healthy kids, but it's always something more with Kenny. We wont find out the blood test results until Monday or Tuesday. His EKG came back as showing an arrhythmia of some sort. his doctor has been so great in going with her gut instinct on issues with Kenny. She is consulting a cartiologist at the finding. OK...at this point my mind is racing and I just don't know what to think! I got home and called his genetics specialist who, way back when, made comment that the long arm of chomosome 17p13 was slightly longer. Stupid me goes and googles this...most of anything that deals with chromosome 17 involves cancer! I metioned this to his doc and really got no anwers other than the fact that this abnormality could not be nothing at all...it could be just his makeup. so basically I am running around like a chicken without a head not knowing what is going on with my son. His neurologist, 6 months ago told me that everything he's dealing with is due to extreme prematurity and not many 23 weekers survive, so they don't really know the full effects on them as they get older. So yeah, Kenny is now a test guinea pig for the medical field. Just last week, I was told by the same doctor that my son definitely has some sort of syndrome. WHAT???!
how dare they lable a child by his looks and actions when they don't even know of the reprocussions of being born at 23 weeks?!
So now, on top of his developmental delay (mild mental retardation), hearing loss, eye issues, chronic lung disease, epilepsy, feeding issues/tube, being non verbal, having low muscle tone and having some autistic issues...I now have to worry about heart issues and possibly cancer down the line. How much more can a mommy take? I look at his beautiful smile, his love of life and his ability to make friends even without having to say anything to them, and I wonder why! He has a perfect little soul who doesn't deserve to have anything bad happen to him!
If there is anything that this whole "being a mommy to a special needs child" brings to me is...well a major amount of stress...but more importantly, never take a moment in time for granted. I can't change what will be, but I will be there fighting and loving Kenny and the rest of my beautiful kids and hubby!