I found this on another blog and had to share. It will make you laugh and tear up within seconds:
1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
To see the rest of the reasons check out: http://www.lovethatmax.com/2011_05_01_archive.html#uds-search-results. Type in Top 20 reasons in the search box
It was Thanksgiving day back in 2002. I was only 23 years old and my life forever changed on that day. I had a placental abruption and Brendan was born at 33 weeks. He lost oxygen during delivery due to incompetent care but was a fighter and turned 17 this year. My journey in life over the past 17 years took many turns I was not expecting but I try to stay strong and have my husband by my side even when I am not.
Wednesday, June 15, 2011
Tuesday, June 14, 2011
What is like to be a mother to a child with CP
Some of you would have no idea what is like to raise a child with cerebral palsy or any child with special needs. I honestly think it takes a special person to raise these children. It is far from easy. It is emotionally and phyiscally draining. It is stressful. You cry more than you want to. However, life is also very rewarding and makes you appreciate things like you never knew you could. You literally get beyond excited at every single milestone and progress they make. My husband just doesn't get it and thinks I am wierd when I get so beyond happy for him. I beam! I have to tell everyone. I blog about it! I think I deserve the happiness I get from it after all I am his mother.
It involves therapy and Dr.'s appointments...lots and lots of appointments. I used to write all his appointments in a little calender and one year I had counted them. I can't remember the exact count but I am pretty sure it was close to 300 between the age of 1 and 2 years old. It was a bit insane. I also worked part time and don't even know how I did it. I was sleep deprived and always exhausted but I did it. He didn't ever sleep more than a few hours at a time and he was cranky!(cranky doesn't even describe him) He had either therapy or a Dr.'s appointment every week day and many days he had multiple appointments. I probably did it to myself but I have always wanted to do everything I could for him. Once he turned 3 Early Intervention stopped and he went to school full time and received therapies there...thank goodness! I really needed a break after three years of constant appointments.
I of course started working full time since he was in school so life never let up for me! Now that he is 8 life is a little less hectic. He still receives therapy at school and we have crossed some major hurdles that required many appointments. His hole in his heart was closed. His major hip surgery was out of the way. His eye surgery was in the past and most recently his heal cord and hamstring lengthenings were done. I am pretty sure he will not need surgery for at least a year. I am striving for two but I am unaware of what may happen or what else he may need. If a new procedure pops up that he would benefit from I may not be able to help myself but for now my motto is 'no surgery for two years!' Three in one year were enough for me!
For now I do bring him to additional physical therapy which is 40 minutes away and to hippotherapy once a week which is also about 40 minutes away. I do this all for him. Sometimes I do not want to go. Sometimes he doesn't want to go but we do it and have been doing it for a very long time. He has rode horses since he was 3 years old, year round. I am getting tired of bringing him especially since it is on Saturday morning. My husband recently told me I don't have to do it. I can stop. I don't have to make him ride horses for the rest of his life. But to me I do have to. I do it because I think it has helped him gain trunk strength, walk with a better gait, and because he actually enjoys it. I can't even imagine not doing it. It is just part of our life. It is offered and I would feel like a bad mother if I didn't do it. Maybe one day I will stop but not yet.
Raising him causes me a ton of stress. I think raising any child does. Who knew?! It is more my fault due to my personality. I constantly worry about him. I constantly think i don't do enough for him. He is also heavy! He can't stand on his own. He can't walk up steps even holding onto him. He can't get into his walker or wheelchair on his own. He can't go to the bathroom on his own. He can't just go get snack or a drink on his own. We have to do everything! Sometimes I go a bit nutty when I am am with all the kids all day because I feel like one of them is always asking me to do something or get something~and I mean constantly! It puts a toll on my body. I lift him constantly. When he is around my brain is non stop partly because he doesn't stop talking or asking questions and partly because when he is quiet and playing on the computer and I am thinking he should be exercising or walking around and I blame myself for letting him have some down time. I am working on it!! :)
One thing I am good at is taking it day by day. I honestly don't look into the future. You just never know. I never knew he would get as far as he has gotten. He was blind as an infant and today he can see. He still has issues but I thought I was going to have to learn braille. Taking it all day by day and enjoying his progression and getting excited to see him ride his bike when he couldn't ride his bike two months ago makes me happy. I enjoy him like I enjoy my other two children. I don't constantly think about their future and what they will do for a living and how far they will go in life or if they will ride a bike one day. I am glad I am able to do this. It is my zen.
So in the end raising him isn't all that different from raising a typical child. We have more surgeries to deal with , lots of appointments, some extra stress and saddness but there is also extra joy and gratefullness of what our children can accomplish! I can't imagine Brendan any other way. He is Brendan to me and usually I don't look at him any differently. If you start to compare and think about what they 'can't' do then life can get a bit depressing. So I try not to do that because he is amazing just the way he is and I was meant to be his mother.
It involves therapy and Dr.'s appointments...lots and lots of appointments. I used to write all his appointments in a little calender and one year I had counted them. I can't remember the exact count but I am pretty sure it was close to 300 between the age of 1 and 2 years old. It was a bit insane. I also worked part time and don't even know how I did it. I was sleep deprived and always exhausted but I did it. He didn't ever sleep more than a few hours at a time and he was cranky!(cranky doesn't even describe him) He had either therapy or a Dr.'s appointment every week day and many days he had multiple appointments. I probably did it to myself but I have always wanted to do everything I could for him. Once he turned 3 Early Intervention stopped and he went to school full time and received therapies there...thank goodness! I really needed a break after three years of constant appointments.
I of course started working full time since he was in school so life never let up for me! Now that he is 8 life is a little less hectic. He still receives therapy at school and we have crossed some major hurdles that required many appointments. His hole in his heart was closed. His major hip surgery was out of the way. His eye surgery was in the past and most recently his heal cord and hamstring lengthenings were done. I am pretty sure he will not need surgery for at least a year. I am striving for two but I am unaware of what may happen or what else he may need. If a new procedure pops up that he would benefit from I may not be able to help myself but for now my motto is 'no surgery for two years!' Three in one year were enough for me!
For now I do bring him to additional physical therapy which is 40 minutes away and to hippotherapy once a week which is also about 40 minutes away. I do this all for him. Sometimes I do not want to go. Sometimes he doesn't want to go but we do it and have been doing it for a very long time. He has rode horses since he was 3 years old, year round. I am getting tired of bringing him especially since it is on Saturday morning. My husband recently told me I don't have to do it. I can stop. I don't have to make him ride horses for the rest of his life. But to me I do have to. I do it because I think it has helped him gain trunk strength, walk with a better gait, and because he actually enjoys it. I can't even imagine not doing it. It is just part of our life. It is offered and I would feel like a bad mother if I didn't do it. Maybe one day I will stop but not yet.
Raising him causes me a ton of stress. I think raising any child does. Who knew?! It is more my fault due to my personality. I constantly worry about him. I constantly think i don't do enough for him. He is also heavy! He can't stand on his own. He can't walk up steps even holding onto him. He can't get into his walker or wheelchair on his own. He can't go to the bathroom on his own. He can't just go get snack or a drink on his own. We have to do everything! Sometimes I go a bit nutty when I am am with all the kids all day because I feel like one of them is always asking me to do something or get something~and I mean constantly! It puts a toll on my body. I lift him constantly. When he is around my brain is non stop partly because he doesn't stop talking or asking questions and partly because when he is quiet and playing on the computer and I am thinking he should be exercising or walking around and I blame myself for letting him have some down time. I am working on it!! :)
One thing I am good at is taking it day by day. I honestly don't look into the future. You just never know. I never knew he would get as far as he has gotten. He was blind as an infant and today he can see. He still has issues but I thought I was going to have to learn braille. Taking it all day by day and enjoying his progression and getting excited to see him ride his bike when he couldn't ride his bike two months ago makes me happy. I enjoy him like I enjoy my other two children. I don't constantly think about their future and what they will do for a living and how far they will go in life or if they will ride a bike one day. I am glad I am able to do this. It is my zen.
So in the end raising him isn't all that different from raising a typical child. We have more surgeries to deal with , lots of appointments, some extra stress and saddness but there is also extra joy and gratefullness of what our children can accomplish! I can't imagine Brendan any other way. He is Brendan to me and usually I don't look at him any differently. If you start to compare and think about what they 'can't' do then life can get a bit depressing. So I try not to do that because he is amazing just the way he is and I was meant to be his mother.
Monday, June 13, 2011
Another miraculous thing after PERCS
I was doing exercises with Brendan this evening and afterwards I sat him down on his bum and let him play while I was stretching his healcords. I noticed he was sitting so straight all on his own. His right leg was almost flat on the ground. He looks so awesome! Sorry it isn't the best photo, it was my camera phone and he was busy playing. He loves cars!
His calves are getting bigger. They aren't so skeletal like anymore. I see muscles forming. His biceps are coming back as well from using his walker without the arm troughs. I really want him to become stronger but he typically does not like therapy or working very hard. I must say he did great tonight. He had fun, didn't complain too much and after working out, stretching, and playing he walked three laps around the house.
His calves are getting bigger. They aren't so skeletal like anymore. I see muscles forming. His biceps are coming back as well from using his walker without the arm troughs. I really want him to become stronger but he typically does not like therapy or working very hard. I must say he did great tonight. He had fun, didn't complain too much and after working out, stretching, and playing he walked three laps around the house.
Wednesday, June 1, 2011
Couponing and More AMAZING PERCS Results!
My husband and I have recently begun couponing. I have always clipped coupons, even as a young child. I helped my mom shop and even did the family grocery shopping when I got my license. I love coupons. I think they are really neat since they are basically just like cash. I try and hunt for coupons wherever I go. I use multiple coupon codes when I shop on-line. I get some pretty great deals but lately I have even amazed myself.
You really can get stuff for free!
I have been watching the coupon show on t.v. and it really has me interested and focused on saving money and spending less for more! We have been doing this for a little bit over one month and already have a stock pile. I don't get everything for free but I am getting really great deals. I just got 18 bottles of Lawry's marinade and 21 boxes of pasta for free. I have a stash of razors that I paid maybe a few dollars for. I am talking a power shick razor for $.89. I have 12 boxes of tampax tampons (20 count) that I paid less than $12 total for.
I never thought I would purchase coupons but there are sites where you can buy them for $.08 each and if that makes a product free that means I only spent $.08 on 'that bottle of marinade'. Works for me!! So I am totally into this couponing thing and I am ready to score more free food and products for my family.
Now on to the important topic for tonight........First let me say once again: PERCS I love you! Brendan was doing his nightly walk around the house for exercise in his croc walker and all the sudden he stopped and I saw him lift up one hand high in the air. I wondered what he was doing when he then lifted his second hand high into the air. I kept quiet because I was in awe. Brendan has NEVER lifted two hands off of his walker. He has never stood by himself. He then proceeded to clap. I have no idea why he felt the need to stop walking and clap but he did and it was AMAZING! He doesn't like when you make a big deal out of things but I couldn't help myself. We walked some more and I had him do it again just to see if he could and he did twice more. I am shocked. How can he even do this? Have I been right all along and he can stand but has not had the confidence? Is it PERCS benefitting him this much in just 1 1/2 months? I am not sure of the answers but I am very excited to see what is to come.
I have always said Brendan never ceases to amaze me and once again I am saying it tonight. I am ecstatic!
You really can get stuff for free!
I have been watching the coupon show on t.v. and it really has me interested and focused on saving money and spending less for more! We have been doing this for a little bit over one month and already have a stock pile. I don't get everything for free but I am getting really great deals. I just got 18 bottles of Lawry's marinade and 21 boxes of pasta for free. I have a stash of razors that I paid maybe a few dollars for. I am talking a power shick razor for $.89. I have 12 boxes of tampax tampons (20 count) that I paid less than $12 total for.
I never thought I would purchase coupons but there are sites where you can buy them for $.08 each and if that makes a product free that means I only spent $.08 on 'that bottle of marinade'. Works for me!! So I am totally into this couponing thing and I am ready to score more free food and products for my family.
Now on to the important topic for tonight........First let me say once again: PERCS I love you! Brendan was doing his nightly walk around the house for exercise in his croc walker and all the sudden he stopped and I saw him lift up one hand high in the air. I wondered what he was doing when he then lifted his second hand high into the air. I kept quiet because I was in awe. Brendan has NEVER lifted two hands off of his walker. He has never stood by himself. He then proceeded to clap. I have no idea why he felt the need to stop walking and clap but he did and it was AMAZING! He doesn't like when you make a big deal out of things but I couldn't help myself. We walked some more and I had him do it again just to see if he could and he did twice more. I am shocked. How can he even do this? Have I been right all along and he can stand but has not had the confidence? Is it PERCS benefitting him this much in just 1 1/2 months? I am not sure of the answers but I am very excited to see what is to come.
I have always said Brendan never ceases to amaze me and once again I am saying it tonight. I am ecstatic!
Tuesday, May 31, 2011
Parade, Drive-in and more!
Brendan's school had a small Memorial Day Parade. Brendan doesn't like me going to his school. For some reason he cries when he sees me. I am dumbfounded by this but this has been going on for years. He told me I couldn't go but did I listen? No way! He didn't see me at first and I probably shouldn't have yelled~Brendan!~ so he could find me and I could take his picture. You think I would have learned my lesson over the years but I just can't help myself. He actually held it together until he saw me afterwards so he is improving. His friend Autum was pushing him in his wheelchair. He was walking with his typical classroom. It was great to see. This little girl sends countless pictures home with I love Brendan, A+ Brendan, you are my friend....on and on and on. She loves my kid and I love her for it! It was a cute parade and I think the only reason he cried was because his principal mentioned parents could sign them out and they could go home early. I have no idea why it would even cross his mind that I wouldn't take him home early but he was very concerned about it. He got over it quickly and was very happy that I did indeed sign him out.
We took the kids to the drive-in for the first time. They loved it. We got there so early and had hours to kill before the movie started but they were great! They ate food, walked around and just waited for the movie. All the kids conked out by 10:30pm. Brendan slept in the back of the van with Chloe and Makayla fell alseep on my lap which was the best thing in the world. She isn't a cuddler like Brendan and I loved having her in my arms for hours. She isn't my baby anymore but I felt like she was for those few hours. We saw Kung Fu Panda 2 and I honestly say I don't highly recommend it. I couldn't even pay attention to it. But I still enjoyed the night.
I posted the photos of his new AFO's and his figure 4 position. They are the best because Brendan doesn't do well with flashes. He was sitting much straighter before I finally got a picture where his face is somewhat decent. I am still amazed I found him like this. The therapist at hippotherapy said she noticed a difference too. She said he was stronger and didn't need her holding him up as much and sat straighter on the horse...woohoo!!! He was so busy playing legos he had no interest in showing me his new AFO's but I took one anyway and he asked "did you get my lego's in it?" Yes Brendan they are the main focus in the picture, haha. He LOVES legos!
We took the kids to the drive-in for the first time. They loved it. We got there so early and had hours to kill before the movie started but they were great! They ate food, walked around and just waited for the movie. All the kids conked out by 10:30pm. Brendan slept in the back of the van with Chloe and Makayla fell alseep on my lap which was the best thing in the world. She isn't a cuddler like Brendan and I loved having her in my arms for hours. She isn't my baby anymore but I felt like she was for those few hours. We saw Kung Fu Panda 2 and I honestly say I don't highly recommend it. I couldn't even pay attention to it. But I still enjoyed the night.
I posted the photos of his new AFO's and his figure 4 position. They are the best because Brendan doesn't do well with flashes. He was sitting much straighter before I finally got a picture where his face is somewhat decent. I am still amazed I found him like this. The therapist at hippotherapy said she noticed a difference too. She said he was stronger and didn't need her holding him up as much and sat straighter on the horse...woohoo!!! He was so busy playing legos he had no interest in showing me his new AFO's but I took one anyway and he asked "did you get my lego's in it?" Yes Brendan they are the main focus in the picture, haha. He LOVES legos!
Friday, May 27, 2011
Brendan got his new AFO's!
We picked up his leg braces yesterday. He is walking awesome in them. He is taking the best steps I have seen since he was 3. The surgery has really helped. I found him sitting in a figure 4 position on his bed this morning. Something he could have never done prior to PERCS. I will post pictures soon.
Monday, May 23, 2011
I love this new feature on the Toyota Sienna...see video
I think I want this vs. a ramp put in. I realize I will still have to lift his wheelchair into the vehicle but it takes up so much less room than the ramp. We were concerned with how much room we would have left in a van having three children and I think this seat would resolve that issue. Gotta love technology! It looks awesome doesn't it? I guess I just have to make sure he doesn't need a power wheel chair before I completely decide. Things like this excite me though....makes our lives so much easier!!
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