It has been a while

I haven't been posting because life was difficult for a while. My father passed away from cancer. Cancer came on sudden. He had been struggling with health since he had a heart valve transplant two and a half years ago. I have shed many tears over my father's health. We thought he was going to die many many times over the past few years. He had been in and out of the hospital. He almost didn't survive the surgery. His heart crashed four times during one stay. He got pneumonia. His lungs kept filling up with fluid. He had and a very fancy pacemaker installed that basically shocked his heart when it stopped which did happen. It has been so hard watching him decline. He was only 57 when he had the heart surgery. He became very old over the past few years. Then cancer had to rock our world. He was diagnosed almost six months ago. I had mentioned a family illness in a post once but my dad didn't like to discuss his health publicly. He didn't want the sympathy or for people to feel bad for him. I understand where he comes from. I just operate a little differently.

He fought hodgkins lymphoma at age 20 and almost died. The cancer has been in remission for so long and decided to rear it's ugly head in a new very nasty form. There was no treatment. No hope. He went downhill very quickly. My sister moved her wedding up so he could attend and we are all thankful because he wouldn't have been able to attend one month later. My mom took care of him until he died. He was able to stay in his house. I visited weekly with the kids. It was so hard to watch him die. It was hard to watch him lose his dignity, his strength, everything but his mind. I am thankful for that. We talked for hours and he was able to say his goodbyes months before he passed. He had his ups and downs and we never really knew when he was going to die. He passed away on my Birthday but he was a fighter. The cancer was in most of his body when they found it. His spine, bones, lungs...just everyhwere. He was given a few weeks to a few months. He lasted almost 6. It know it was hard for him to hang on so long but I think we are all thankful we had those last months.

Goodbye dad. You can finally rest in Peace. We buried him yesterday because he was cremated. He is gone forever now. It is very hard to lose a parent and now my sister and I have to take care of my mom which we will...no question!

RIP Dad 12/27/51-9/15/11 He would have turned 60 this year and my parents would have been married for 40 years.

My baby is turning 4! Special Olympics!

I can't believe my youngest is turning 4 years old! Brendan has always loved his little sister to pieces. They are super cute together. She wants to go to Chuck E Cheese for her birthday so we will all go there to celebrate over the weekend. The kids love playing the games so they will all really enjoy it. We need to go Apple Picking too! We tend to go too late every year. Apple picking just sneaks right by us. We like sticking to yearly traditions and this is one of them so we will have a busy weekend.

Two mom's started a Special Olympics program in our town. I am the treasurer but haven't had to do much yet. We had 15 kids join right away so we are at our max right now. They range in ages from 4-9. They don't compete yet but the kids are really enjoying it. They meet every Sunday for 9 weeks from 3-4pm. Each child has a buddy or two that helps them with the sport. This is great because I am not involved with Brendan. He has been doing great with me just watching him. It probably helps that his niece volunteered and works with him but years ago even that wouldn't have worked out! I am very proud of him. He LOVES it! He shouts "I'm gonna win!" and then when he gets the soccer ball into the net, "I win!" The first day he looked up at me and said "mom, I am plaing soccer!" with the biggest grin on his face. That was pricelss. He loves being part of a team and the fact he is actually playing sports. They play tennis, track and field, and soccer. It is really great to watch. We have 19 volunteers just to work with the kids and then we have coaches who also volunteered for each sport. It really is amazing to see everyone pull together for these kiddo's! I will post a few pictures now.

5 Things no one tells you about raising a child with special needs

1. You will have a very special bond with your child that you can not explain. Maybe it is from all the hours you spend together at Dr. appointments over the years, numerous hospital stays, hours upon hours of therapy sessions or just researching and over analyzing everything about your child. Whatever it is, it is beyond special.

2. You cherish every single milestone no matter how small more so than with your 'typical' children. It sounds bad but it isn't. When your special needs child sits up on their own, says their first word, or is even able to feed themselves with a fork it is a HUGE milestone. I still get beyond excited when he does something new or even talks with improved sentence structure. I think it is because we know how long and how hard they tried to get to that point.

3. You have less sympathy for your other children. After seeing your child endure major hip surgery and where a spica cast for 6 weeks you don't baby your other children as much when they scrape their knee or take a tumble, at least I don't! I take care of them but I also teach them that they are just fine and it only hurts for a minute.

4. You become a helicopter mom but never admit it. You are involved with everything in their life way more than you ever anticipated. Between school, therapy, and meeting around a hundred doctors over the years you know way too much about your child and it probably will never stop.

5. Last but not least.....You become a Supermom! You can handle up to 7 appointments in one week. You learn how to give your infant a bottle so that they don't choke, you can lift a 45 lb wheelchair up a curb or into the back of your van, and you can somehow carry your 45lb child (that doesn't hold on to you in any way) into a store, buy something, and get them back to the vehicle without passing out or dropping them! You try and do everything that you would do if you didn't have a disabled child even if that means you will be exhausted by the end of the day or the end of that vacation. You try and give your child the best life possible. You make them wear horrific night time braces but also give them breaks from them every so often. You punish them just like you would any other child when they disobey or are disrespectful. You do it all and then some because you are a Mom~one very special Mom!

School starts in 3 Days!

Wow this summer flew by. We will have two second graders this year. My youngest won't start Kindergarten for another two years because her Birthday falls on September 20th! She is so smart so I feel like she will be bored with school so I am going to try and fight for her to go next year but I think it is highly unlikely I will win.

We have been busy bees as always. Brendan went on vacation with his father last week to NH. He goes every year. I decided to take the girls on a road trip since my husband has been working so late every night. It is hard to do some things with Brendan so while I felt really guilty I knew he was having fun with his dad. I also really wanted to take my youngest to an amusement park. She hasn't really gotten to go. We brought the other two a few times and she was really young and doesn't remember and couldn't ride on much. So off to Sesame Place we went for two nights. It was a great time. It did rain the entire first day but that meant no lines. We rode every single ride multiple times. The water slides were a lot of fun. I loved watching my youngest enjoiy everything. She even danced in the parade! She is so cute and loves to dance. She is very outgoing, will do anything type of kid. The one we need to watch out for when she is a teen! I love that she is outgoing because I was a super shy kid like my stepdaughter who wouldn't go dance in the parade and then wished she did. I so know how you feel kid! It was a great girls trip and I am so glad I went because my youngest had reactions that were priceless. I could have rode the roller coaster all day just to watch her face and here her laughter. She put her hands up in the air for the entire ride every single time! OH BOY!

Out and About

Since we have gotten the new rampvan I have been out and about so much with the kids. It really makes small trips seem less daunting. It doesn't wear me out physically and Bren is really happing riding in it.

My husband got a new job and has been out really late all week. He got home after 8pm twice and who knows when he will be home today. He leaves by 7am so I am having some very long days with the kids. Brendan's ADHD was horrible this week too so he was testing me often! Today I took the kids to bumper boats and we got drenched but it was alot of fun.

It has been a while! AND an Exciting Purchase!

I feel like since the kids got out of school I haven't had any time for myself let alone computer time. I apologize for the lack of posts lately.

Brendan's elbow is still healing! I can't believe how long it is taking. So far so good but his father told me it did start bleeding over the weekend so I am worried.

We just got back from our camping vacation this past week. We went to a luxery campground called Pine Acres in Oakham MA. It was a good time. It rained alot and I was so thankful we had our pop up camper this year. I went outside and sunk in about a foot of water and really couldn't imagine having a tent to sleep in during those conditions. The only downside is that the rain is beyond loud hitting the popup and my husband and I were wide awake for hours. At least we were dry!

We broke down and bought a handicap accessible van! I am so excited. I am still in the process of registering but Brendan gets to ride in it today for the first time. It should be interesting and it is raining but I am excited to not have to lift up that wheelchair into the back of our old van any longer. It is a Toyota Sienna and the van is amazing! The front seats come out so he can either drive when he is older and capable (not looking forward to this!) or sit next to me as a passenger in his wheelchair. We chose the one without carpet. It has a pretty cool floor that won't get all dirty and nasty from his wheels. I love it so far but ask me after today how I really feel about it! I just hope I can attach him into it on my own! I am a bit nervous.

Brendan is on the mend! 4 ER visit's later....

Well his elbow is finally healing! He had a staph infection and although he tested - for MRSA it seemed to be just that. It was the same type of bug that causes MRSA and it started healing soon after he begun new antibiotics that destroys MRSA sooo who knows. I am just happy his elbow looks better. It is scabbed over in fact. WOOT WOOT!

We missed my entire step daughter's birthday party because he was almost admitted at the hospital and put on IV antibiotics. We were at two hospitals from 10AM to 3:30PM. It was a long day! We switched ER's because of where his pediatrician sends her patients and instead of admitting him they switched his antibiotics and let us go home. We were both very happy to go home instead of spending 3 days in the hospital. :)It was a scary week. A spot started appearing on his leg and his arm had a tiny scratch that blew up so something was going on in his tiny body. I was starting to freak out but thankfully my mom is a nurse and helped me calm down by reassuring me he would be okay.

I am actually kid free for a few hours. My youngest stayed with my parents after we visited yesterday, Brendan is at school for a couple of hours and my step daughter is with her mom. So I spent some quiet time weeding the front yard and decided to prune a bush. I am snapping away when all the sudden I hear bzzzzzzzzzzzzzz so I RUN! They chased me and got me twice. :( I am glad I ran because they were mad! Who knew bees lived in bushes. UHHHHH!

It is never a dull moment in this house!