Christmas traditions

I have always loved Christmas time, and when I had kids I thought of all the family traditions this season would bring. All the hype, the decorating, the cookie baking, seeing Santa, shopping.

I can think back to the first couple of Christmas' and recall they were smooth, Luke was only 2 when Zach was born and our first family of four Christmas was great. Then Zach got sick and the whole world changed. Zach was in and out of the hospital so much. His entire 2nd year of life was basically inpatient and every holiday was spent in a hospital bed. Not the family traditions I had planned on sharing at all. 

 

And now even though he is home from the hospital stays we face new challenges with both of them and all the festivities. Now I face the holidays head on with dyspraxia, ADHD, SPD, and many other challenges.

Going to parties and loud stores is too much, seeing Santa is just impossible, shopping is a complete no go with kids and baking cookies involves getting messy, which is not good.

 

All of the traditions I dreamt of and thought were what I wanted and what was important to my family, my kids, have been replaced. I have learned that my kids are special and what makes them special is the way they see and feel the world.

 

And our Christmas traditions are now made around them.

 

-Walking for Make a Wish under the Christmas lights of Tanglewood because Zach was wish kid

-Drinking warm chocolate (because temperature is a Big Deal) with whipped cream, eating popcorn and watching Christmas Scooby Doo

-Watching Santa on TV and cutting out magazine pictures to make our lists (we can't write words yet)
-Finding the Elf on the shelf and telling him what they want from Santa (because Santa is scary in person)

 

I look at other families and wonder what it's like to be able to stand in line and wait for Santa. I always think it would be nice to have those pictures. But wondering and wishing for the normalcy for my kids doesn't make me love our Christmas time any less.

The season is so much more than those family traditions and the perfect gifts

For me, its about how far we have come this year. How my 6 year old couldn't even write his name 10 months ago but now can sign the Christmas cards. How this year, they love Christmas music and want it played all the time. 

Its about them decorating the Christmas tree, and not thinking how all the ornaments are cluttered together and how there are more candy canes than lights on the tree. 

Its looking at the tree and seeing the most beautiful tree in the world, how its perfect in my eyes. 

And yes it does look like a 4 and 6 year old decorated it,

but I would never want it to look any other way.

 

When Christmas day comes and my boys wake up to find that Santa has came, and their smiles light up the room, that's how I know its worth it. 

Having a child with special needs is hard and challenging and sometimes all you do is wish for the normal. But then realize that to you they are perfect and no amount of normal could change that.  

And even though I don't have the family traditions I thought I wanted, I have the traditions I love and cherish and wouldn't change for anything.




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Where we started

When I first started this blog three years ago, it was all about Zach's medical journey. It was my journal for what was happening with him, what the doctors were thinking, my feelings. It was my way to keep everyone updated and as much informed as I could. Along the way it also allowed me to meet some amazing medical parents who were going through some of the same things.

And now three years later, my blog is so much more than just about Zach. It is now the  journey of both of my boys, their special needs, and our struggles. Zach was sick for so long and got so much attention that I never realized Lucas was having problems. But now, after three years I have two special needs boys. And now this blog is about our everyday life.

Being a special needs parent is hard. And sometimes you want everything to be normal and sain, and you sometimes feel how much easier it would be to have "normal" children, and how you feel envious of all your friends for having "normal" families. The ones that you can take anywhere, do anything, and not worry about the noises, or the meltdowns, or the stares. There was no chapter in the expecting book to prepare me for this journey. I have learned along the way how to cope with my children's needs. And believe me, I haven't learned it all yet. There are days that I could pull my hair out or run away. It is hard, it is frustrating, it takes all my energy, my time.

Would I change it?

No way, I love my boys but you don't understand what it is like unless you walk in my shoes.

 

I am glad this blog has let me reach so many people and meet so many people who are struggling just like me. My goal is for someone to read this and realize they are not alone and that there are other moms thinking and feeling the same way they do.

 

No one is prepared for the struggle, having a baby period is a struggle and strain but then you throw into the mix, special needs and all the parenting advise flies out the window. The dreams that you had for your child change to fit them. The dreams of the next soccer star turn into the dream that maybe one day they will walk unassisted. The dreams of the next billboard record breaking singer turn into the dream that they will say their first word one day.

You hope that one day they can buckle their own pants, put on their shirt, tie their shoes all on their own.

 

It's the little things that "normal" families take for granted.

 

This blog has allowed me to express those feeling as real as I can on here. To show my emotions and feelings for what I want for my children. One day hopefully they will look back and read this and know how big of an accomplishment they are. How proud I am of both of them and how far they have come.

We've already made it so far in three years, who knows how far we will be in the next three.

Not so easy way out

I think sometimes we all want the easy way out of things, whatever that is and however you can do it. The easy way is just better, so we think.

 

Even with my kids, I sometimes am guilty of this.

 

Luke had a follow up this week about his inability to produce certain sounds, even though he has been in speech therapy for almost 4 years. And the last time we saw this doctor for this problem, he had discussed surgery in no improvement.

 

So we saw him again, and he did several tests and then explains that surgery wouldn't help. It's not an easy fix, Luke has oral dyspraxia. He diagnosed him with this last year but in the years time, he hasn't improved. That's not what we wanted. Not to say that we wanted surgery either, but we wanted the easy fix. Not to find out that he simply can't make the movements with his mouth. That maybe after years and years of more therapy and support, he might be able to make a (k) sound or a (g) sound.

 

And then he might not be able too.

 

I wish I could just make it better for him, easier, but that isn't what I am supposed to do. It's not my job to make it easy, to teach him to take the easy way out. It's my job to teach him how to cope with life and all the ups and downs it throws at you. Even if it's hard and you struggle. Sometimes there is no easy way out.

Blogger Challenge

I'm a part of the

 

2014

Blogger Challenge!

 

So along with 400+ more bloggers, twice a month every month in 2014 I will write a new blog post on a chosen topic.

I am super excited about this and the opportunity to read and visit lots of new blogs and to have some fresh ideas for my blog posts.

I love writing about my boys but I am also looking forward to having new topics as well.

 

So check back every month for new posts!

 

 

 

I RUN 4

I have been a member of an amazing group on facebook for the past couple of months, called I Run 4 Micheal. (IR4)

 

 

 

It's been called the most inspiring page on facebook. It truly is too, runners are matched up with special needs children to help inspire them. And even if you can't run, dedicating any activity to your "buddy" is amazing. Because it's really not about the running, it's about bringing joy to someone who isn't able to run or maybe even walk. It's about thinking about someone other than yourself, doing this for someone. Something as simple as saying hello and posting a picture, just to let them know you are thinking about them.

 

Being a mom of special needs children makes me enjoy this group so much more. My kids have special needs and they have struggles but they have mobility, they are more fortunate than others and I teach them that everyday. But I know what they feel when they see others doing something that they can't. And so this group helps that.

It was started by a man who started running and raising money for his friend who had down syndrome and it grew from there. Now there are thousands of runners and even a waiting list to get matched. It is truly inspiring and everyone should sign up.

 

You can sign up to get matched as a runner or a parent of a special needs child on their website www.whodoirun4.com and their facebook page I run for Michael.

 

"God gave me the gift of mobility. Others aren't as fortunate so I Run for Michael, who do YOU run for?"

 

 



Growing

In attempts to grow my blog, and reach and help more people, I have set up my own blog social media sites.
Please follow me below to keep up to date on all blog updates and please share with everyone.

Facebook: http://www.facebook.com/ourkindofspecial
Twitter: https://twitter.com/Rkindofspecial Crystal @ Rkindofspecial
Pinterest: http://www.pinterest.com/rkindofspecial

And any advice from bigger blogger pros would be so helpful and greatly appreciated!

SPD and Winter

So its December,
Its cold and Luke is outside in shorts and a T-shirt. And not due to the fact that the boy doesn't have a dresser full of pants, a closet full of shirts and jackets galore.

Wintertime used to be one of my favorite seasons, I loved snow, the changing leaves, the cold weather. But to live the changing season through the senses of my boy, has me rethinking my love for winter.
He can't help it, he doesn't like the feel of clothing on his skin. Coats and shirts are too scratchy, pants are too tight, socks above his ankles burn his legs, he will hate you for days and cry if you put a coat on him. Its probably one of the hardest things to do, to watch your child feel the world in ways you can't. And the hard part is that he doesn't know he feels the world differently.
We go through this every morning, its exhausting just to get him dressed for school. These are days I long for him to be normal. And not to say that I would ever really want him any other way, I love him the way he is. He is special, he is strong, he is unique. But some days I feel it would be so much easier to just get up and be able to dress him like any other child. Send him to school in a cute polo and some khakis, but that's just not gonna happen. I no longer fight this issue. If he wants to dress in a t shirt when its 30 degrees outside. Then he can, the way I see it, as long as i get him to school in clothes, any clothes, then I won. I accomplished a major milestone for the day and we are one more step to greatness.
I truly hope the seasons get easier for him. I hope the world gets easier for him. But either way he will get through his struggles, even if its in shorts and a T-shirt in 30 degree weather.

a friend

Sometimes you meet people that you never thought you would but then find out you couldn't go on without them.

 

I have been helped, and hurt and left. But those who did, taught me lessons about life that I thought I had figured out but I was so wrong, lessons that I am forever grateful for, that have made me a better person.

I have never been a person with many friends, I am not one to open up or share my deepest secrets. I don't say I love you lightly. I am bad at saying I am sorry.

Whether it's from losing people I thought were friends, or from being a daddy's little girl without the dad. I am this person that hides their feelings. So it takes a special person to come into my life to make me want to share.

 

I believe in friendship, I believe in best friends, soulmates..

I couldn't imagine my life right now without my best friend, the one friend that knows every piece of my soul, my heart. All my secrets, all my wishes and dreams. This person that I can open up too, and share my day. I don't worry about being judged, they just listen and get me.

 

It's hard making friends and keeping friends when you have special needs children, they take so much of my time and attention. They drain me of my sanity sometimes and if you haven't been there, walked in my shoes then you just can't get it.

But my best friend does, I could never wish or want anyone better.

 

I love my best friend, they mean the world to me. And I will be forever grateful for the friendship we have.

 

"Friendship isn't about whom you have known the longest... It's about who came, and never left your side.."

Today is the Day

Today is the day we give back to a awesome organization that put a smile on Zach's face like it does to thousands of children with life threatening medical conditions.

Although Zach has had a lot of medical problems and has spent more time in the hospital in his 4 years than most people do in their lifetimes he is doing better. There were times he faced infection, sepsis and even a transplant evaluation. He has been through feeding tubes, central lines, blood transfusions, iv nutrition, too many tests to remember or name and too many days away from just being a kid.
Make a Wish put a smile on his face when they asked what he wished for. "Mickey Mouse house" was his exact words, he loved Mickey Mouse and every time he watched a movie and the castle appeared in the previews, his face lit up. So when Make a Wish told him he was going to Disney World he was estatic!
To people who do not have special needs children or do not know what it is like to sit by your childs hospital bed day and night and just wish they could come home, you might not understand the value of Make a Wish.
But to us, to the families that have been touched by them, it is unexplainable. To get a week of no tests, no appointments, no hospitals. Just your child being a kid, and playing and laughing. It will be forever in our hearts what it was like for that week.

And some kids are not like Zach, some kids do not recover or get better or have remission. Knowing so many families that have lost their children to these life threatening medical conditions, makes me cherish Make a Wish so much more. Even those some of the children are no longer with us, their families remember the joy and time they got to spend seeing amazement in the eyes of their little ones.

So today, we give back. Today is Walk for Wishes. Teams have raised money to help grant wishes for children.

So Team SuperMan in honor of Zach will be there showing our support of this amazing organization.


You can read Zach's story from the beginning starting here..
The beginning

 

 

 





Walk for Wishes

The Make a Wish organization is very important to our family. Zach was able to become a wish kid last year and got his wish to go to Disney World. Our family had a wonderful time in Disney, a week without doctor visits, hospital trips, worries over whats coming next. It was awesome, our family needed the break from the routine of having a sick child.

And like our family, there are lots of other families that need that break. Make a Wish grants thousands of wishes each year, and each wish costs about $6000 to grant. So our family decided to make a team this year and help raise money for Make a Wish by walking in their Walk for Wishes.

Walk for Wishes is a walk through Tanglewood, through the Festival of Lights before it opens for the public. On November 16, hundreds of teams will walk. Most teams are wish families and we walk and raise money because we know how great it is to see our children get wishes when they are facing life threatening illness's.

Please join our team, or help us by making any size donation to our team.

Team SuperMan, in honor of Zach

Join or Donate "Team SuperMan"

On your way...

I am so proud of you. 

My miracle baby that came into this world 8 weeks too soon, you have just finished your first week of Kindergarten. I feared these days. With all your struggles and your differences, the days of sending you off in the care of others and me not by your side to hold your hand and say it's ok. You are growing up and I don't know what your future brings but I am so proud of you for where you are. 

You amaze me everyday. I saw you kick your legs on the swing yesterday, that is such a big step! And today your teacher told me that you played in PE! It's the little things that make me proud. You will never have to win awards or come in first place to amaze me. I find amazement in the things that you are getting better at, the button that you couldn't work yesterday but today you got it. The letters that I found you wrote on a piece of paper all by yourself, and the shoes that you put on and got them on the right feet. 

You are a miracle and you will accomplish great things. 

I am so proud of you. 

Lucas birth til Kindergarten in pictures-

Slideshow customized with Smilebox

Same story...different authors

I am so over the meltdowns, the screaming, the whining, the time, and the energy. It is draining me, all that I have, everything that I am is going into surviving the days. And this is just my side of the story, I know his is the same.

I'm tired, I'm frustrated, I am over the world not making sense, it's too loud, there are too many people, places, sounds, smells, don't look at me, you're new, I don't know you, get out of my space, I can't control it, the energy... I am done... this is his side of the story.

We write the same story and yet we can't read each others words...

He just wants his world to make sense, but nothing does, his body can't process the smells, sounds or even the thoughts on what each day will bring. When he sees new people he hides, he won't talk to them, no matter how much coaching. When his routine or schedule is off, it's all downhill. When a simple drop of pancake lands on his shorts...the day is ruined, and it's not about the pancake, it's all about his world not being in control.

I wish I had a magic wand to make it better, or at least to make sense of it. But I don't, I have to play the guessing game to try and figure out what to do, or when to do it or how to prevent the next meltdown or outburst of anger. I wish I could just make his world make sense to him, I wish I could just slow it down, and say it's going to be ok.

But then it hits, the meltdown.. not the typical 3 year old, "I didn't get my way" temper tantrum. No, the "I have no control over what I am doing nor do I at this point even know why I am doing it" meltdown. And all I can do is sit and wait, wait for the storm to pass and the sweet calm loving boy to come back to me. The calm has to take over. And then its gone. And the reason why it began in the first place doesn't even matter, it was most likely not the root of the meltdown, it just set it off. It was like the icing on a cake, all of the layers were made and put together and then when the icing was laid, it crumbled with all the pressure.


Thats' my boy...

His world, this world is overwhelming. And he can't make sense out of it, he can't control it and he crumbles.

Comparing him

I want the very best for him and I want him to succeed in everything and to be like other kids his age.

I think that is the hardest part for me, He is not like other kids, but it so hard to not compare. It's frustrating to see classmates of his or friends' kids succeed in things way before my son. I feel like a bad parent or failure because my son can't tie his shoes, can't ride a bike, that he doesn't know his ABC's. And it's hard to explain to other parents when they ask, is he in kindergarten? how is school for him? how old is he? because you know they are asking to compare...

"No he hasn't started kindergarten, he wasn't ready and quite frankly, he isn't ready now. How is school for him?- great question, school is HARD, he can't concentrate, he can't sit still. His friends are writing notes, and reading.. he knows, he sees what others can do.. he knows what he can't. And it frustrates him, it saddens him. And he won't tell you, but he tells me...he is embarrassed for others to see his struggles." And it is not fair!!

He is 6 years old and has no idea what the world will bring. He has an imagination that soars and can build a 5 star building with any objects you give him. He will be my engineer, my architect. But honestly he wants to be a doctor. He always has since his baby brother was sick. I can remember the day I found out, I walked into his pre k classroom to find his drawing of himself that said "I want to be a doctor to make my brother better"

That is the quality that makes him special. His heart is far bigger than his classmates, he excels in loving others. No it doesn't matter that he is 6 and doesn't know his alphabet, or how to write words or how to read. He will get there, he will learn all the things that his classmates know. What matters is that he will love everyone, he will know that everyone has different challenges they face but that we are all special.

I am learning to not compare him, which is hard but because I know what and why he is special and I know that he isn't like everyone else and will never be like anyone else.. because he is him and he is perfect.

Saying goodbye to a legend

How do you say goodbye to the best doctor, patient advocate and believer of your family? We are facing this difficult task, and it is hard. I tear up thinking about the day we have to walk in and see someone new. And I know that day is coming, it literally scares every inch of my being. 

Someone that you have relied on so many times over the past 6 years, and especially over the past 3. Someone who you could call anytime, day or night. Who would stop and come answer my question on the phone in the middle of appointments. Someone who has seen the best and worst of me, has seen me cry too many times, has seen our sweet boy so so sick. Who stood up for you when no other doctor would, who always believed you and your family. 

I can't begin to say how much we owe to this doctor, how much we truly appreciate everything he has done for us, for Zach and Luke. I feel like I am losing a family member, even though he is just our pediatrician, he means so much to us. 

I can not forget the times when Zach was in the hospital and I was scared with questions and he called me the next morning upset that I hadn't called him with my questions. That is a true doctor, one who truly cares about his patients. One that will be missed by our family more than he will ever know. 

God knows I am thankful

I think I heard "there is nothing to do" and "I'm bored" a thousand times this morning... all before 10 am. And unfortunately when your child has ADHD and dyspraxia there mind can't be still, they get easily frustrated over the little things and then you have meltdowns.

We have had about three meltdowns so far this morning and that's when we decided to pack a picnic and head to the park for some much needed sunshine and energy release.

I think I can relate having a hyperactive dyspraxic child is like having a high energy puppy... if you leave a puppy inside all day with nothing to do, you come home to a destroyed house, everything chewed up and a very unhappy you. That's how Lucas is, if he doesn't have something to do to keep his mind busy, he gets frustrated and has meltdowns. 

I could have easily gotten mad at his behavior this morning, put him in his room and just listened to his whining all day... but I am learning to go with it. I am learning that his behavior comes from a source out of our hands and out of his control and so therefor punishing him for it is unfair.

Instead I have to find ways to occupy him and a way for him to release his energy and emotions.

So today I knew he needed time outside to play. 

God gave us these special boys for a reason, and everyday I am learning more and more about what helps them everday. And of course everyday is different but I am so lucky to have two beautiful boys, sometimes I take that for granted and some days it feels like I am living in a war zone of meltdowns and constant brother fighting. But at the end of the day when I am thanking God for my day and my wonderful family, I realize just how special my boys are and that they were given to us to help us more than we need to help them.

Drugging Einstein

I haven't written in a while but last night I was telling Luke that Albert Einstein was dyslexic and yet he was one of the smartest people known and he came up with brilliant ideas. And then today I ran across this article and it seemed so fitting. So I wanted to share.... it definitely makes you wonder.


Drugging Einstein, an article on ADD and Dyslexia by S Conde
October 27th, 2012

What if ADD and dyslexia are not disabilities? What if they are actually abilities and only labeled as such because the “normal” (neuro-typical) brain is in greater abundance and simply does not understand the spatial nature of a dyslexic mind nor speed of a brain with ADD?

ADD’ers and dyslexics are non-linear, intuitive learners who process information a thousand (some say thousands) of times faster than a neuro-typical person, because they think in images rather than words. (One of the biggest difficulties with dyslexia where reading is concerned is that they have trouble processing words that do not relate to an image. Is, or, the, and, but, if…are often substituted for each other as they have no picture associated with them.) People with ADD and dyslexia are both right brained thinkers who can easily establish complex connections and patterns without much conscious effort at all. Despite popular belief, people with ADD are actually able to focus intensely on a subject for great lengths of time, IF they find the subject compelling enough to shut out the distractions they are acutely aware of, all around them.

ADD and dyslexia are not diseases, they are differences in the way the brain processes information and the parts of the brain used to process information. People with ADD and dyslexia are not sick, their brains just work differently. A psychiatrist explained it to me this way. The ADD brain is actually older, from an evolutionary standpoint, than the neuro-typical brain. When we were hunter gatherers the ADD brain was necessary for survival, noticing everything at once, hyper alert, able to zero in on and focus on a singular detail in the environment. When we moved as a species from hunting to agriculture, the executive functions of the brain began to evolve. Executive functions deal with planning, verbal reasoning, inhibition, etc. The linear thinking mind became a distinct advantage in planning crop planting times and rotations for example.

It seems to me, the neuro-typical brain is in greater abundance, because it was genetically beneficial…at the time. But, what about now? Is evolution beginning to favor the older right thinking brain?

Computers “learn” the same way people with ADD and dyslexia learn, intuitively. In addition, dyslexics are able to construct three dimensional images in their heads. These abilities make both the ADD’er and the dyslexic uncommonly good with computers. As computers and visual communication become more and more relevant in our fast paced world, will dyslexics and people with ADD have a leg up?

Further, is the ADD / dyslexic mind closer to knowing itself? Free of inhibition, to a greater degree than the neuro-typical mind, and the nay saying rationale of executive function, is the right thinking brain more open to greater truths about itself and the world at large?

I was reading a friend’s blog the other day and stumbled across this quote by Jung relating to dreams:

The evolutionary stratification of the psyche is more clearly discernible in the dream than in the conscious mind. In the dream the psyche speaks in images, and gives expression to instincts that derive from the primitive levels of nature. Therefore, through the assimilation of unconscious contents, the momentary life of consciousness can once more be brought into harmony with the law of nature…and the person can be led back to the natural law of his own being. JUNG – CW 16 para 351

According to Jung, the person with ADD / dyslexia speaks the same language as the human psyche. Wouldn’t it be easier to “be led back to the natural law” if we understood the language in which the law was written?

We are forever told to “live in the now” in order to be happy. “Now” is the default home of the ADD / dyslexic mind. Past and future are rather abstract concepts.

In the interest of full disclosure, I am married to a man who can close his eyes and picture a room in three dimensions, then spin it around in his mind’s eye and inspect it from different angles. I have given birth to a child who argued with his sixth grade teacher that the cardinal directions of Earth are meaningless in outer space, (for which he was punished and belittled in front of his classmates). Our two other children are like me, with higher verbal function, but disorganized and with a propensity for tuning out the world around us, and becoming lost in our own thoughts. All of us in this house are drawn to the arts, and all of us have ADD and dyslexia, to greater or lesser extents. Two of us were labeled “gifted”, one of us slipped through the cracks completely, and the other two were labeled “learning disabled”. Do we sound learning disabled to you?

The educational system has failed us. All of us really, right brainers and neuro-typicals alike. It is particularly difficult though, for those who simply can not obey the commands of sit down and shut up. Is this the best way to teach our children anyway, or is an interactive learning experience better for them?

I’d like to share with you a list of people known to have ADD and or dyslexia. What would the world be like had we medicated them in an effort to make them the same as everyone else? What if we had drugged them so that they might focus on what society deemed important? What if they had not been allowed to look inside their own magnificent heads and explore what interested them?

Albert Einstein, Pablo Picasso, F. Scott Fitzgerald, Winston Churchill, Edgar Allen Poe, John F. Kennedy, Vincent Van Gogh, Bill Gates, Walt Disney, Benjamin Franklin, Malcolm Forbes, Richard Branson, Thomas Edison, Orville and Wilbur Wright, Wolfgang Amadeus Mozart, Salvador Dali, Ernest Hemingway, Ted Turner, Thomas Jefferson, Leonardo Da Vinci, Stephen Hawking, Leo Tolstoy, and Louis Pasteur to name but a few. Do they strike you as learning disabled? Abnormal…in a negative sense?

I am left thinking of Kurt Vonnegut’s short story “Harrison Bergeron”:

I think I’d make a good Handicapper General. Good as anybody else, said George. Who knows better’n I do what normal is? said Hazel.

Normal, abnormal, able, disabled? You tell me.

A look inside Luke's brain

 These are some graphics I found courtesy of The dyspraxia foundation, that illustrate how some LD's affect the brain.

Luke has dyspraxia, dyslexia, dysgraphia, adhd and spd.

Bye Bye Paci's

Before anyone says anything, yes I know Zach is 4 years old and he should had gotten rid of that paci a long time ago. But in his defense, he has had a lot of medical issues and it has been his rock, so to speak. He started using his paci when he was almost 2, because they took him off fluids by mouth and he needed something to satisfy his sucking urge. And since then he has been hooked. And really up until now, his Dr has always said he was fine...because he is special and needed it.

 

But...dun dun dun.... we finally got the urge to take it away.. how? Yes, that is a good question and took a lot of thought. We decided cold turkey was the way to go. So we took all paci's to Build a Bear and stuffed them in his new bear.

 

 

 This went surprising good. He stuffed them in before she added the stuffing. And then he pushed the pedal to fill him up.

 

 

 

And he immediately LOVED the bear! He was pretty excited with result.

 

 

 And of course, he had to dress the bear. I am not sure why he picked the scuba suit but he liked it. It also has a mask that goes with it...

 

 

And he named his new bear "Swimming Man". My kid is very original, but whatever he likes, mommy likes too. And he loves this bear, he has held him tight every minute since he got him. He has done so well without the pac's too, only a couple melt downs the fist day. Mommy is so proud of him for being such a big boy!!

 

Now... on to pooping in the potty, that is a whole other story...

EGID awareness week and rainy day blues

So this post is probably going to be a bit of rambling, I have lots to talk about but just haven't had time to blog in the past few days. So I'm apologizing upfront but please still read. 

First off, this week is very important. It is National Eosinophilic Awareness week, as everyone knows, Zach was diagnosed with EE or Eosinophillic Esophagitis in April 2010. He was taken off all foods and survived with combinations of feeding tubes and central lines til July 2012 when his last feeding tube was removed. He, as well as all Eos kiddos have been through so many tests and surgeries that it is part of everyday life. The non profit group Cured has brought so much awareness and funding to the research of EGID's. Please consider donating to them and checking out their website for tons of information on all EGID's.

Www.curedfoundation.org

Shellfish, wheat, soy, dairy, peanuts, tree nuts, beef, fish

These are the top foods that most EGID kids are allergic to. With these disorders that can affect the esophagus, stomach, intestines and/or colon the body attacks itself when an allergic food is consumed. It sends eosinophils (which are a type of white blood cell) to the area and they cause damage to the affected area of the GI tract. 

Now on to our rainy day blues....

It has rained so much in the past weeks that the boys have been bored to tears. 

Luke was consoled with Xbox games, while Zach at some point during the weekend decided he was moving out. He even packed a "suitcase" which was his toolbox, with pull ups, a t shirt and his paci's.   

He also made sure he had his piggy bank and the beloved Marshmallow. He did give this thought up shortly after it began. He realized the grass isn't always greener on the other side. Or in this case... All of his toys and favorite things were staying here. 

And on a brighter note, I finally found a kitchen table. I have been searching for months for just the right farmhouse style table and finally scored one on Craigslist. It does make me happy, now to finish decorating the rest of the house. 

Springtime woes....

I love spring, honestly it is probably my favorite season.....BUT I do not love allergies, pollen, asthma, runny nose, bloodshot eyes, sinus headaches and not being able to sleep. Yep, that's what I am dealing with right now. I pretty much feel like a truck hit my head. And on top of that, I have poison ivy or oak on my arm. And it itches!

I am the person who only has to look at it to gt it. I am so highly allergic. I am pretty sure it came from the boys clothes, they play in the woods and I guess it rubbed off on me during laundry. 

So today was pretty laid back, we picked strawberries this morning at a local u pick farm. Zach loves, loves, loves strawberries. They both actually really love all fruit, which is great. We picked 2 buckets but we will have to go back for more before the season ends. I have to freeze enough to last us another year. We ended our day with an ice cream date with Nana and a trip to GameStop to trade in old games and the boys picked out some new ones. Luke loves playing sonic on the Xbox and of course Zach got a superman game....go figure, the boy is in love with superman. 

Which luckily superman is the big hit right now, with the new movie coming out Ina few weeks. There are tons of superman toys and decorations out now, 3 months ago when I was looking there were none. So needless to say, mommy will Christmas shopping this week to load up on superman before it goes extinct again. 

But for now, bed...this sick mommy needs some sleep. 

How I love them

Psalms 139:14 KJV

I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well.

Wonderfully made indeed!!

This verse just makes me count my blessings, both of them. There were times when we didn't knos if Zach would make it, if he would survive another infection, if he would ever  come off his feeding tubes, eat food or just even be a little boy, able to run around and play. 

There are times now that it seems things are just too hard, too many worries, too much stress, too many appts... but to sit back and think where we were and where we are now.

That's amazing. We have learned to cope with so much, our family has been through so much and survived. There were hard days and nights but we survived.  We did it.

And now, to see our boys outside playing, getting dirty. Just being boys... we love it. They are best friends to the end, they both look up to each other and could play together for hours. They are so wonderfully made indeed. 

Oh how I love them

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Updated Us... very long overdue

 

 I am a stay at home mom to two very special boys, have been married to my husband for 10 years this November. Our family has gone through a lot these past couple of years with our boys and things are still coming into perspective. This blog is just a little glimpse into our everyday lives raising 2 special needs boys and also helping bring awareness to many rare disorders and very special kids.
Now about us…

Thing 1 (Lucas)- is a new 6 year old going on 18, who knows everything and always has to have the last word. He has been diagnosed with ADHD combined type, oral and developmental dyspraxia, fine motor and gross motor delays, phonological processing disorder, dyslexia, dysgraphia and receives speech, OT and PT.
He was born at 32 weeks via emergency c-section, he was in distress, having the cord wrapped around his neck preventing blood supply to his brain. We are very lucky to have him, he would not have made it full term and we are very grateful for our doctors for finding out.
Thing 1 is very smart, very creative, and his imagination is far greater than I could imagine. He is truly one of a kind.

 Thing 2 (Zach)- is our 4 year old love muffin, he is a momma’s boy to every extent. He spent a lot of his early years in and out of hospitals trying to survive. He has been through feeding tubes, central lines, iv nutrition, special formulas, tests, tests and more tests, and more surgeries than I can list. But through it all, he remained a strong willed, happy little boy who loves Superman.
No one really knows a diagnosis for him, we know he has Eosiniphillic Esophagitis, food allergies, and some autonomic dysfunctions (mild- mainly sensitive to heat and flushing when over stimulated)

 

For those that have followed our story from day one- thank you from the bottom of our hearts believing in us and keeping us in your prayers. We have made it, our boys are doing good, our family is good, and the past is behind us. Our boys are thriving and growing.

Through all of the crazy mess over the past year we have kept our faith in God and knew he would bring us through and we will continue to walk the path he has for us.