Loving My Chaos

Living an Adventure with EE, Multi Food Allergies and Special Needs Treasures from God!


4 Comments

The Boy Who Saved Dinner!

Remember the other day when I said that I was going to feel that bike ride? Well it hit me today around 4pm. When living with Fybro you know that when you have pushed your body too far there will be a payback time. I was surprised this morning when I woke up and honestly felt pretty darn good. I was on the phone with my sister, she was reading the blog and helping me with a few things,  and she asked “ So are you able to walk today?” At first I was confused because I felt fine. Why would I not feel fine? Then she jogged my memory of the wonderful bike ride I had yesterday. I explained how I had taken a muscle relaxer and went to the hot tub last night and I might have just doge the bullet with this one. 

 

Well I should have known better. There is no dodging bullets when it comes to Fybro. Right about 4pm the feeling of flue like symptoms: body ache, headache, heavy head and neck pain, a feverish feel (with no fever) a lot like a bad case of Mono hit. I quickly realized I was not going to be able to finish our errands, and make it back to the camper to make dinner. Now for most families this would not be a big deal. Run through a fast food joint, kids are happy, and the meal you planed for tonight will just wait until tomorrow. As I was leaving the mall I was trying to see what was around that was cheap and realizing there was nothing. You see for us to be able to come to the beach, and stay a month, there was a  promise to cook our meals to keep the cost down. As I am going through our options , which the only fast food he can eat at is Chic -Fil -A, and all he can eat there is the fries, Outback (not cheap and I am allergic to table pepper and they have the mix of death on everything), A local smoke house (we have eaten there 2 time already. Once when we first got here, and then on  Thanksgiving. It is also tradition to eat there when we leave.), and a local brazilian resturaunt which is $50 a head. I began to get a bit depressed trying to figure out how I was going to physically get through the grocery store for some staples we were out of and still be able to make dinner. So, I started to come up with a plan. I would : take Ed through Chic-fil-a., get him a fry to hold him over, Pick up a $5 pizza for Kae and  make something quick for Ed when we got home.   As I thought of what I could make him, I realized his food was why I needed to go to the store. UGH! Almost in tears I hear Ed say “ Mommy I’ll make dinner! We don’t need to eat out!”

 

Ed has been learning to grill and as I mentioned before he loves to cook. The last few nights I have been letting him cook/teaching and he has been grilling hotdogs for lunch. He has learned to make the perfect grilled chicken beast and broccoli packets. I had defrosted steak for dinner and thought why not. We’ll go to the store and get the stuff we need and when we get home I will let you do dinner. My Little Man did just that! Kae brought in all the groceries, because after the grocery store I was useless and Ed set out to make dinner. All I had to do was light the oven for the fries and he did the rest! I am so blessed to have such helpful kids. 

Image

Sometimes my kids can be a handful and there are days I wonder how we are going to make it through. THen there are days like today, when everything seems to be going wrong for me and my kids just pick up where I need them too and they both just shine!  I want to thank Ed for stepping up and keeping us on plan to eat our meals in. I also want to thank Kae for having such a great attitude when I told here she was not going to get pizza and Ed was going to cook. They both chose to look on the bright side and Dinner was amazing and the night ended with my favorite pass time reading them their night time story.Image


Leave a comment

Rare Form!

Today was one of those days. First off let me tell you my Grand Idea. My grand idea to come down to the beach and live in our 5th wheel for a month, do school , and enjoy and extra month of warmer weather before I head back to the tundra that I am hearing about. During the first week we were here I was thinking “OH MY GOODNESS I MUST BE OUT OF MY MIND!”. The first week  it rained almost everyday and it was cold. Kae and Ed were going crazy being shoved in a bunk bed room and the only place Ed could go to get privacy was in the bathroom. Kae was like a wild animal trapped in a cage. But thank Goodness the weather has gotten better and my hopes of what this month could be like is partial to what I dreamed.

So far we have been able to accomplish each day of school. We even took the other day to build sand castles because the temperatures reached in the
70’s. My wonderful Hubby bought me a bike for our camper and the kids each have one (thanks to my mom 🙂 ) and we have ridden are bikes everywhere. All in all it has been pretty good except, Chuck and I were noticing before he left that Kae was getting a bit more rambunctious and more impulsive than usual. Today I think she hit a peak in all of that. First thing out of Ed’s  mouth this morning is “Kae is in rare form.”

Image

                                                             That is  code for “Hold on to your britches this is going to be a bumpy ride!”

She started off the day at around 7 am calling her daddy on Face time. This is his day to sleep in. He had been up late with some things going on at home, and was looking forward to sleeping in this morning with no Kiddo’s to come bouncing in. Well let me tell you not even 12hr driving time, or 700 miles can keep Kae from waking daddy! LOL he got his morning wake up call and she spoke to him while Ed tried to pry me from my covers.

Before School I wanted to brush Kae’s hair. This is always a hard time for she has a really sensitive scalp , but somehow can pull clumps out when upset, and we started the day with our neighbors hearing ” STOP IT! STOP IT! YOU ARE KILLING ME! HELP ME! HELP ME!!!!!! GET OFF ME! STOP TOUCHING ME IT HURTS! ” God only knows what they thought was going on inside here. Once hair was done she went to the bathroom and said “Wow it looks good” and was off to start bible, or so I thought.

You would not think much would escape me being in such a small space,but she went up to my room area and started to watch Disney on her iPad. I heard the Ipad, assumed ( my mistake ) she had started school, and after doing the dishes came up to find her under the covers like a tent watching Disney Jr.  Now I had already been warned that today she was in rare form, but for some reason I just did not handle it as best as I could have. So I lost my temper and said a few choice words ( which I regret and know I will hear repeated back to me sometime soon probably at church or out in public always in those types of places) and tried to start school. The word is tried. She was not going to do what she did not want to do. SHe had that wild look in her eye and I knew today was going to be one of those days! ( Now remember I stated I am not a perfect mom and I make mistakes and will share them. Never proud of them and regret many daily but I promised to be frank and honest and I will keep that promise. So  I won’t be upset for you not  signing me up for any mother of the year awards 😉 ).

So, after I sat down and cooled off, realized I had just made matters worst, I decided we would take a bike ride. The kids took me all over the camp ground and to my not so surprised self I am feeling the aftermath of it now OUCH! I pray I can get out of bed tomorrow LOL.

On days like today sometimes pushing her to stay on target is just not what is going to get us through the day. I have learned that yelling and screaming has gotten me no where. Discipline does not work because honestly this is not behavioral. There are times when it is and she is milking it, but there are times like today if I try to push her where she does not want to go, it will be a full-blown temper-tantrum. SO as she is riding on her bike she is  screaming ” I AM FREE! I AM FREE!  and she is weaving all over the road and a smile of content washes over her and she is calm. We went as fast as we could down the small hills, went and saw the ducks and goats on the island and came home completely worn out. Now was the time to try to do some school work. I was able to get 2 subjects in and then another large break after lunch walking the beach and letting her sit on her favorite boulder that she pretends is a dragon. We did not get all the subjects done but all n-all with what I had to deal with it was a good day!

Snapped this while riding behind Kae today! I’M FREE!


Leave a comment

Mission impossible!?

I find myself racking my brain tonight trying to figure out how I am going to sew my daughter a Nutcracker doll ? As I have said Kae has a deep passion , to put it lightly, for soldiers and knights and she is not one for dolls. Ever since she was little she has had a hard time relating to baby dolls. She only liked the ones that the eyes would open and shut, but there was a problem she would never play with it. You would ask her ” Kae where is your baby?” she would reply ” Lazy baby only sleeps.” (in a grumpy voice. We would then go into her room, pick the baby up, and say ” Kae look the baby woke and wants to play!” She would run into the room feed it maybe in the high chair, but as soon as she picked it up to cradle it, she would drop it and walk away. ” Kae what happen? Where is your baby?” she would again reply “sleeping its lazy!” 

We always thought this was so funny when she was a baby. Never thinking that there was a problem and she did not understand that she could make the baby wake when ever she wanted. Today she still has problems with her american doll. SHe never touches her because she is a lazy girl and never wakes up. She is always sleeping. 

If you take Kae to the toy store you will never find her in the girls isle. SHe is alway in the boys area. Girls stuff seems to freak her out. SHe says that they are all scary or boring. She gets stuck with all of the toys and does not seem to know how to play. Well you can understand to my surprise and excitement when she asked me for a doll. But then she hit me with the bomb. She wants a Nutcracker doll. SO i went online to look for a plush Nutcracker doll and to my not so amazed luck there is NONE! So now it is up to me to try to make it LOL. Going to be one heck of a first sewing project once I get home. SO wish me luck! If i do make one, I will post picts and I am sure some insight to how “Easy ” it was LOL! 


Leave a comment

Hello Blogging World!!!!

Well I finally did it! I finally set up a blog, and I honestly I can say I have no idea what I am doing!!!!!! I am as far from understanding technology as I am from being an aerospace engineer! But I am going to give this a shot it can’t be like rocket science right? (Just to let you know it took me over 3 days to figure out how to make my first post LOL!)

So why start blogging? Ever since blogging started I have had people ask me to start a blog. I guess our family’s chaos is a bit unique in nature, and through it all God has really blessed me through all of our different disabilities. With my son Ed and hubby Chuck having Eosinophilic Esophagitis (EE) and opposite food allergies , to my daughters Non-verbal learning disorder, Sensory Processing Disorder, and ADHD, and my food allergies that are different from everyone else’s and Fibromyalgia,  we are a gene pool catastrophe! But, we just like to call it our boring life  :).

I am hoping that through the grace of God ,and His amazing miracles, I am going to be able to find away to help those who face the same situations we do. My hope is to figure out how to set up pages for each disability and share things I am learning in Therapies, Cooking experiments, Tools I find, and how we organize our daily lives that somehow works and keeps us all alive.In the Section called Welcome to our Family. You can meet each one of us  in detail, and see what our unique situations are.

This front page is where I hope to share our fun side. It will be a modge podge of our chaotic fun life. I WILL WARN YOU, we are a crazy family and I can not promise that all posts will be socially appropriate ,since I do have a daughter with a  social skill deficit, some of the things she says can be shocking and hilariously inappropriate but , are so funny and such great learning tools some will have to be shared. Again I WARN YOU we are a strange family and my kids ages 8 and 10 love  farting, burping, farting on one’s head, anything to do with bodily noises, really silly puns which usually go bad, and lots of  awkward moments. This  is a norm for my kids and I (yes I included myself for I think my brain stopped maturing at 13).  I will say my hubby is the mature one in our family and if it was not for him we would be a mess!  We love to joke that he is the Superego and I am the Id and without the  two of them together well the Id would be in a lot of trouble 😉 !

So I hope you will enjoy our family and our crazy ways. THis is as true as it gets, and I have no problems sharing all of our good and not so good moments. Too many times I see families putting on the fake smile and walk around like they were taught by Leave it to Beavers mom, I would say we are more like the Adams family or the Monsters. We just don’t fit the typical ” Stay at home mom, who home-schools and has her life together, with kids who are  compliant angles”. This will not be a blog on how to manage your life, I do not know all the  answers. I will share what works for us and maybe you’ll get ideas maybe not. More than anything it will be a great place to come and see that you are doing just fine and I am plugging along with ya. Making mistakes, scaring my kids for life, but keeping them alive to the best of my ability and hopefully teaching them that being “Normal” is not all it is cracked up to be!”