5 reasons being in a wheelchair STINKS... and 5 why it can be FUN!

1. He has to wait for someone to help you go to the bathroom and being a mom of 4 sometimes he has to wait a while! 2. He can not do everything he wants to do because sometimes we are too exhausted to lift him. For instance we can't take him to CoCo Keys water park (which he would absolutely LOVE) anymore because we can't carry him up four huge flights of stairs. 3. Getting in and out of rooms and buildings can be very difficult and sometimes impossible on his own. 4. When he drops something on the floor he can not pick it up. 5. He doesn't really have friends outside of school and never goes to peoples houses because no one would know how to care for him. 1. He gets to ride on a lift everyday getting on and off the bus and he has a big ole smile on his face every time. 2. He gets special treatment at times like free trial cell phones at the mall and skipping the super long lines at Disney World. 3. He can do tricks like spin in circles and wheelies AND he always a chair which according to his sisters is pretty lucky! 4. He can hold his younger siblings on his lap and take them for a ride. 5. He gets to hold onto the shopping cart while mom pulls it when shopping alone and loves the fact he is 'pushing' the cart.

Mr. Independent

Brendan is not the typical ten year old who wants video games or toys for his birthday so we got him an overnight stay at a hotel. His lucky siblings got to benefit too. He loves to swim and sleep in a hotel room, it is probably in the top 5 of his favorite things to do. He was asking to ride the elevator, buy a snack, go back to the room all by himself and guess what?! We let him! We were on the second floor and decided he could try going back to the room on his own after we had gone to it a few times. He has a great memory and we all trailed behind him secretively. My husband took the stairs and waited by the elevator. I stayed way behind just to watch my child who is in a wheelchair make it down a very long hallway, into an elevator and onto the 2nd floor to find our room. He did AWESOME! He talked to people in the hallway and wheeled himself all the way to that elevator. He pushed the button and wheeled in. He made it to the 2nd floor. I jumped in the elevator and headed up after him and he was waiting for me with the room key in hand and said "I can't reach". It was probably one of the proudest moments I have had. When you have a child in a wheelchair independence is hard to give. I think I will always be extra overprotective of him. However, he is the big 10 and I have to let him start to grow up. He is ready and I have to start getting ready and fast! We let him go into a snack area and buy his own snack and he even asked the front desk attendant for help. He requested a bag and a receipt. He is too funny. I think he gets percs being in a wheelchair because he was only charged $1.07 for a large bag of doritos and we had looked at the prices and nothing cost that little! Brendan continues to amaze me and as long as we let him grow up and try new things he will persevere. I do notice while public buildings have come a long way becoming accessible they still have a long way to go. Being in a wheelchair Brendan couldn't put the key in the room door or open it, it was very heavy! He also couldn't exit the bathroom on his own in the lobby. He couldn't pull open the door and exit on his own. I wonder are these things that he will learn to do or will he never be able to go places all on his own. Will he always need an aid? While I am so proud watching him become this independent little boy I also get upset and worry about all the obstacles he will continue to face. Not being able to stand or walk makes life very difficult! One things is for sure, he is one awesome kid who doesn't want to let a wheelchair rule his life.

Happy 10th Birthday Brendan!

Wow how can it be that 10 years have gone by?! It feels like time has flown by but then when I really think about everything we have been through over the past 10 years it feels as though it should be much longer. I have started to lose count of surgeries and become much less stressed about upcoming botox injections. I can say I have become used to our life and I can't imagine it any other way. I would love to take away all the pain and struggles you have but I know that isn't possible so I just try and make your life the best it can be! What have we been through over the past 10 years..let me revisit all the 'lovely' memories * Born on Thanksgiving Day at 33 weeks and weighed a whopping 5 lbs 5 oz! * You were born blue and had to be rescusitated, however I was never told this..I read this in your records. * Only spent 11 days in the PICU! We had no idea cerebral palsy would be our future. * Crankiest baby alive for the next few years...we found out why little by little * Started EI therapy at 6 months old found out you had brain damage at 11 months old * I don't remember exactly when but we found out you had a vision problem (CVI), cerebral palsy, and a hole in your heart (ASD)all within months of each other and I nearly lost it. It was a LOT to take in for a young first time mother. * You wore a helmet for your flat head when you were one years old * We went to a sleep clinic and had a 24 EKG done to determine why you NEVER slept! * We found out you did NOT have seizures which was awesome and mom just needed to let you cry it out! Who knew?! * You had two surgeries at two years old for undescended testicles (the joy of being born early) * You started yearly botox injections at 3 years old * You had major right hip surgery (osteotomy) at 5 years old * You had right eye (strabismus) surgery at 5 years old * You had your ASD closure at 7 years old * You had right hip hardware removed at 7 years old * You had tendon and tissue releases at 8 years old We have been surgery free for ALMOST TWO YEARS...which was my goal after three surgeries way too close to each other. I remember counting how many therapies and appointments you had during your first year of life and it was over 300! I did them all myself and worked part time. I am not sure how I did it on top of never getting any sleep. We made it through your first year and then two and then three and somehow we made it through TEN YEARS! I have no idea what the next ten years will hold. I am sure there will be more surgeries. I am sure there will be more heartache because I am already aware of two horrific things that are wrong with your body. I can't even think or write about them right now. I tear up instantly and it is your birthday so I am going to be HAPPY! I think life will get easier as the years go on. Surgeries will not be so frequent. Therapies won't go on forever, at least I don't think they will. One day it will be up to you to get your butt there! HAHA Maybe you will even live on your own one day and get married. If not we have built a house that you can grow old in. We may need to build a handicap kitchen if that is the case but until then I will continue to enjoy my amazing family. I love my life and my children make me extremely happy. My husband is by my side every day and helps me get through the difficult days. HAPPY BIRTHDAY BRENDAN!! Still can not believe you are TEN!

Parent Teacher Conference

I met Brendan's teachers tonight. I have always been impressed with this school especially since it is public. They really seem to know what they are doing for these special needs kiddos. This year started out a bit rocky. His special needs teacher quit and they took a while getting someone in his classroom...she just started today. However, after today's meeting I feel okay about it. He is able to be with his typical peers for morning work, social studies and science. Today I found out his favorite subject is Science and that he LISTENS and ANSWERS questions in class appropriately. The teacher wants him in the typical classroom more often because some of the other kids in his special needs class are not verbal and she feels Brendan needs more interaction with his peers. I already LOVE HER! She is looking out for my son and sees that he is smart even though he doesn't always come across that way. She knows he can't write or read but he can comprehend and be still be an involved student. It was great to hear positive things and a bit shocking I must admit that he can answer questions correctly. I think the ADHD medication is really helping him concentrate during school. Medicating your child is always a difficult decision but we definitely made the right one. He has learned more in the past two years than the first 5 years. I am one proud mama tonight! She also mentioned the kids are great at helping Brendan when the teacher is busy with other students and he works well in a group for science projects. I wasn't surprised to hear this because most kids seem to love him.

I dreamt that Brendan walked....again

I have these dreams occasionally. They are bittersweet. I never really see Brendan upright without equipment so it is unusual to see him in this stature. I am not even sure he really looks like him in my dreams. It is almost impossible to picture what he would look like standing and walking. His PASS worker has been practicing with him lately to stand up without holding onto anything. She kneels and he stands facing her with his hands on her shoulders. When he is ready he lets go. He does not last very long but it is a start. Something he could never do before. Confidence is a huge issue for some reason. He doesn't think he can do it so we tell him to say "I can do it" to help him feel more confident. I think it is helping because I saw him stand and it was for at least a good solid second. Yes just one second...doesn't that sound strange? It was really exciting to see and I feel like just maybe one day he will stand for 5 seconds and then 10 and then who knows how long! Life would be much easier if he could just stand. He doesn't have to walk but just to be able to stand up when need be would be very helpful for everyone. When he does things like this I dream big. I dream that he walks. He walked funny in my dream, kind of hunched over and fast! I remember the feeling of excitement I had and how proud I was of him. I hope one day we can experience this but until then I will count the seconds that he lets go of someone or something and stands all on his own! It only took him 10 years :)

It's the little things...

Last night Brendan and his 5 year old sister had a wrestling match. It was really funny to watch. Brendan worked really hard and had a blast. He didn't want it to end and kept yelling one more time, one more time! He even took his sister down a few times. While this may seem like nothing for many kids it is huge for Brendan. It took a lot of effort but he really enjoyed it. Once again therapy and play rolled into one! I still get sad from time to time when I think about his struggle in life but that is only when he is not in front of me because when he is he doesn't let you feel sad. He is ALWAYS happy, smiling, laughing and just enjoying life. He cracks me up daily. The wheelchair has become part of him. It is his legs and he is fine with that, at least that is what it seems. He wheels around this house like a pro. I hardly yell at him for wheeling into walls anymore. Brendan is going to be Bounty Hunter for Halloween. He has been batman for 4 years so I really happy he wanted to be something else. We had to be creative and make his costume which was actually kind of fun. It may seem like an odd costume for a child but he absolutely loves that show. He know the lingo and probably every episode by heart. He doesn't watch much television but has two favorite shows, ICarly and Bounty Hunter. It is great to see him progressing in little ways. His pretend play has really progressed this past year. He can even entertain himself in his room with his tool bench. This has been a goal for so many years and he has finally met it! He achieves so many things and although they may take months or years while it only takes days for other kids his age he does it which makes one proud mama! Brendan is an inspiration, he truly is!

My boys and My girls

I love being able to say 'my boys' now. We have always referred to Chloe and Makayla as 'the girls' and since I always pictured myself having 3 boys it is nice to finally say 'my boys'. What I love most about Brendan is his lack of self pity. He does not have a jealous bone in his body. He loved watching Makayla meet all her milestones over the past 5 years and now he already loves watching Drew smile, talk, and just be a baby. He has nothing but love for his siblings and it makes you feel like you are doing something right. I enjoy listening and watching all of our children interact with each other. We have a very close family even though we aren't all 100% blood related. The kids would never think of each other anything but brothers and sisters and I love that. Chloe has started gymnastics and is amazing at it! She was the best in her class and she just started. She has self taught herself cartwheels, one handed cartwheels, round offs, and the splits. She practices all the time and has really perfected her skills in mere months. We were able to view her class last week and we are amazed. The teacher wants to move her up a level already. Now we just need to afford it but how can you not try when you find a natural talent in your child. We need to enroll Makayla in dance class because this child has danced since she was an infant. She can't even help herself. If music comes on that child is dancing and she has moves! She can feel the beat and dance to all kinds of music and we love watching her. Time for some coffee and get these kids ready to head to the shop! Our consignment shop is going well and I think we are finally going to take Sunday's off! If you ever want to check out pictures of what we have ( we can ship items!) check out our facebook page www.facebook.com/tivertontots. I have shipped two items already to children with special needs. Everyday baby gear that can make our lives easier.