Appointments

I dont think people realize what goes into being a mom of a special needs child. Doctors appointments are a huge part of our lives. We know how long it takes to get from home to the ER, its 43 mins from our door to the ER door for us.

Doctor appointments aren't in our town, we travel to see the doctors our son needs, we go to two different cities both 45-60 mins away. It's never an in and out thing, its an all day adventure.

In the next 6 weeks we will be going to the eye doctor twice, he's having an EEG, a neurologist appointment, a orthopaedic doctor, and probably be referred to see a upper limb doc due to him repeatedly dislocating his shoulder.  He also has school, massage, dentist, respite and bowling in those 6 weeks. Oh ya and its March Break during this time. Thats just him, we do have a daughter that needs me too and who will most likely be keeping Nana company for some of those appointments.

It will be an overload of information as I'm going to get some answers with these appointments , I feel sometimes he gets shoved to the side, I hear a lot "well that comes with cerebral palsy"or "he has epilepsy", not good enough anymore I need to know exactly what's happening and get him what he needs. I'm going to one of the appointments with a lot of info, speech assessment, school report, physio and OT assessment, which has all been organized through me, so there will be no stone left unturned. I have to fight for him who else will??

Because of my husbands work schedule, I do all appointments by myself, he cant take off 6 days in 6 weeks to go with me. But by the time I get home I dont feel like talking so I feel as he misses out on all that was said. I usually call him (when he is available), my mom and sister as soon as we get out just to get it off my chest.

Many of appointments I cry all the way home, he sits in the back on his ipad so he cant see me. I just need this venting so when we get home I can be a more focused mommy to both of my children.  I dont ever book anything after our appointments because we are both exhausted. Info is exhausting, getting in and out of the car and getting to where we need to be in exhausting, driving is exhausting. You get the point.

So as we get through the 6 weeks of March and April I will be glad to see the end of it but happy to have the info I need to support and take care of what he needs at this time.

People always tell me God only gives you what you can handle, well God no more appointments for a little while please. Lol.

Enjoy your day everyone, remember to be kind to one another, you never know what others are going through!! 💕💕

The Dreaded Renos

We are going to renovate our bathroom and we have to do things a little different then most people. Ideally it would be nice to have a shower and tub but our bathroom is the size of a shoebox so that wont work.  We have looked at financial help through charities to help with a reno, but every contractor we have had wants to either start from new or add a big piece on to our house with a handicap bathroom and bigger bedrooms, which would be great but the charities wont pay for all that, and with really a one income family we dont have the means to do all that. So we will probably do what most families with special needs do, we work with what we have and do it ourselves. Do we take out the bath tub and just go with a shower?? But it needs to be for a family of 4 not just for our son. I want it so my son can be indepentant as possible but my daughter and I love our baths. So hard. The main goal is to get a bidet toilet seat, which we laugh that we will be the only house in our little town to have a bidet. Lol. I'm hoping this will help our son be independent in that area as well, cause he is getting older and who wants their mom to wipe their bum??  So here we are in the home improvement store looking at everything and WOW our budget is small, why does everything have to be so hard and expensive?  We have a handle on the tub now but its getting old, so we need another of those, tile or plastic surround around tub/shower?  I went in the store with high hopes and came out kind of deflated. But we will do what we always do slow and sure it will get done. My goal is by the end of 2017 we will have a solid functioning safe bathroom for the 4 of us. Not all the bells and whistles I would like but what we need.  I do wish it was easier for families with special needs to get what they need and not be such a long hard process, the paper work alone is exhausting, we have to fill out hordes of paperwork every time we have doctors appointments ect let alone to get funding for renos.  So we will try to get some funding for the equipment that he needs in the bathroom, my parents have helped us with some funds and my handy man aka my husband will be the contractor, he has done all of our renos and now he can add bathroom to the list. What I dont understand is, isn't a disability a disability and shouldn't everyone get what they need?? Doesn't seem right. It's so easy for some people to get whatever they need or want but the people that really need it cant. What people dont understand is that it all goes by household income not disability which it seems if you try to make a living, then your out of luck for a helping hand. So many special needs families have issues with getting financial help. So we will do what we always do and we will be prouder for knowing we did it on our own.

Chocolate Chip Cookies

There is so many different recipes for Chocolate Chip Cookies, they truly are mostly the same.  Here is one that I like the best.

1 cup of butter

3/4 cup brown sugar

3/4 cup white sugar

2 eggs

2 tsp vanilla 

1 tsp baking soda

2 1/4 cups flour

1 cup semi sweet chocolate chips

Preheat oven to 350.  In a mixing bowl, cream butter and sugars together.

Add eggs and vanilla cream together

Add baking soda and flour

Once mixed add in chocolate chips

I use a medium icecream scoop to drop dough on cookie sheet, we like bigger cookies. 

Around 1 1/2 Tbsp for a bigger cookie

Bake for 12 mins let cool on cooling rack 

ENJOY!!

Real Life

 All my blogs have not been so people could feel sorry for us, they have been for awareness and education. We are not looking for pity, we are looking for acceptance. He is not a burden to us, he's been the biggest blessing. I'm not looking to get anything out of this, except to show you how to accept and include people with different abilities. In the crazy world we live in these are somethings that I have wondered if people think. Seems like people see the glass half empty not half full. It's sad we focus on the bad not the good. Well I have been taught there is so much good, I can't believe anyone would be interested in my little family but you all have been. It makes my heart grow to know@ people truly care about a family they dont even know. I once was asked if I could give him a pill to make him "normal" would I???? I would NOT he is who he is and I wouldn't change that for the world. What is "normal" anyways??  I'm sure I dont fit in the "normal" category do you? We often get told "but he looks normal" well what is a disablilty suppose to look like?? I dont understand these questions he is my son and even if he had 6 eyes, two heads, eight legs he would still be my son and I would love him with all of my heart and soul. So next time you maybe think about saying something to or about someone, remember if you say it, you cant take it back. All people have feelings and feelings can get hurt. Remember to open your mind and heart to all people just not the ones that look "normal".

Warm Spinach Dip

One of our favs for Super Bowl Sunday. It's warm, cheesy and so delicious!!

Warm Spinach Dip.

8oz cream cheese
1 cup of sour cream
pinch cayenne pepper
1 tsp minced garlic
100g chopped frozen spinach defrosted and liquid squeezed out
1 cup of grated cheddar cheese plus 1/2 cup for top.
Mix all ingredients together and place in small casserole dish

Put in a 350 degree oven for 30 mins or until golden and bubbly

Serve warm with nacho chips.
Enjoy 😊