Tuesday, April 23, 2013

Inside Scoop! Life Inside My House

A Day in the Life...

I was inspired today to right a blog about what life is like in my house. In particular what life is like with 2 special needs kids.  There are so many misconceptions out there about what special needs kids are like.  I can only speak from the experience I have.  My experience is with twins who both have cerebral palsy.  I am happy to say on the spectrum of CP, my boys, Michael and Matthew I believe are on the milder end.  What I mean by that is that they both function pretty well.  Michael especially at this point can do many things for himself.

Life inside my home is crazy.  My husband and I have 5 kids who are, well kids.  They are loud, they run around and they fight.  I have been assured by other parents that this is NORMAL.  The reason I say this is because my husband and I are BOTH only children.  Yes, we both have no idea what it is like to have siblings let alone a large family. Everyday for us is uncharted waters.  Now, throw in twins with disabilities and it got a lot more interesting. 

Everyday we have to step out in faith.  Some mornings I feel like I am waking up on a battlefield.  Some one is hurt and/or crying.  Everyone is hungry.  Everyone wants everything now.  I just want to hide in bomb shelter ;-)  Thankfully are older 2 children are good about getting the little ones

 Somehow my husband and I manage and we get everyone out the door to school.  Currently our older two children go to Catholic school, the twins go to public and our youngest is still at home.  My mother watches him while Mark and I are at work.  Mark and I both work part-time so we can tend to the needs of the kids, especially Michael and Matthew. 

Michael and Matthew are in therapy outside of school 4 days a week. Michael is in physical therapy and Matthew is in both physical and occupational therapy.  When the boys are not in therapy they are at home playing like every other child does.  Matthew loves Wii bowling. He stands up and leans against the couch to play. He can't swing his arms like you normally would but, somehow he makes it work and does quite well!  Michael loves playing on the ipad and is sure to ask us everyday if he
can.  They love playing with their toys as well.  Star Wars is their favorite and light saber duels are had on a weekly basis with all 4 boys.  Michael loves to sing and he can be heard humming the Star Wars theme or Imperial March. 

Michael either crawls or uses his walker to get around the house, go to the bathroom, etc.  Matthew is only beginning to use a walker.  He mostly crawls around the house and needs help getting on and off the potty.  Both boys what to be very independent.  Sometimes I forgot how far the boys have come and sometimes I don't let them try to be as independent as they can. 

As far as our other children, they are helpful and supportive to their brothers.  They accept them for who they are.  All of 5 of them are unique gifts from God. 
Can some days be tiring, of course they can.  That is true in any household with "normal" kids.  I put normal in quotes because there is a general perception of what "normal" is.  My normal is different than my neighbors normal.  My  normal is 5 kids, 2 of which have disabilities.  Honestly, I am tired of the word "disabled".  They are not disabled in my eyes.  They are loving, sweet, happy, smart boys who just have a more difficult time using their legs.  So what!!!  Are there days I wish it wasn't so hard and we didn't have to all the extras, i.e. going to and from therapies.  Yes, but I am only human.
I don't know why God has given us what he has but, I am thankful for it.  He trusts Mark and I enough to try raise his beautiful gifts.  We succeed and we fail, but I think God expects that.  I rely on Him everyday to do the task that is before us.  There are days I want to quit but, most days I just have to look at my kids and smile.  There is nothing like getting a huge hug from one of them to make it all worthwhile (or a raspberry).


Friday, February 8, 2013

Happy 5th Birthday Michael and Matthew!

Matthew in "the suit"
This blog is a week late in coming but, Michael and Matthew turned 5 last week.  5!  I can't believe it.  It someone ways the last 5 years have flown by and in other ways, it has been a long 5 years.  When I look back over this time, especially the last year, I am amazed at the progress they had made.  Late in 2012 both boys were able to go through a 3 week intensive therapy called "Therasuit Therapy".  This therapy is like putting 6 months to a year of therapy in 3 weeks.  They both went 5 days a week for 4 hours a day. 
This therapy would have not been made possible without the help of the awesome church community that surrounds us.  We did a fundraiser to raise the money for this therapy.  This therapy costs $7000 EACH!  That is not money I have lying around the house, if you know what I mean.  I thought it would take me months and months to raise this money.  God had other plans.  The money was raised in less than 2 months!  A therapy that I thought they wouldn't be able to do until this summer they both did between October and December of 2012.  When God moves, He moves and I am forever grateful.
Michael in "the suit"
This benefits from this therapy has been many.  Increased strength, mobility and endurance to name just a few.  Matthew has become so much stronger.  Michael's confidence has grown and continues to take more and more independent steps at therapy.  Michael also just got discharged from OT (Occupational Therapy).  He is up to speed with any other 5 year old when it comes to his fine-motor skills.  Yeah! 
I could on in more details about the progress the boys have made but, I think video and pictures will speak much better than I can ever do justice.
I also want to give a big thanks to all the therapists who helped the boys through this "boot camp" of therapy.  The therapists at Progressive Pediatrics are the best.  There is not one day that I have been there that they don't have a smile on their face and ready to take my boys.  Love them!
My boys came into this world 8 weeks early and started life at just a meer 3lbs. 12 oz. each.  Their future was uncertain as they spent the first 7 weeks of their life in the NICU.  Since then we, as a family, have had many ups and downs.  I know these boys have been given this cross for a reason or reasons that only God knows.  Michael and Matthew carry this cross with such grace and joy. They continue to beat the odds and progress beautifully. 
I have posted in my office a poem that was written by Ryan Sprague.  He too, has a son with cerebral palsy.  I hope he doesn't mind me sharing this but, I read this often and think of my boys.
I hope you enjoy it as I do. 
The Road He Travels
by Ryan Sprague
Two roads diverged in a yellow wood,
But this is the only path I know.
A weary traveler, long I stood,
And wondered if I ever would,
Travel the road where my brothers go.
Their way is smoother, but all is fair,
I do not wish them off their road.
In our family, my burden's shared.
It's actually better that they are there.
for from that path they can share my load.
I doubt if I'd been given the choice,
That I'd have opted for this trail.
But I might have missed that still soft voice,
That gives me the power to rejoice,
And provides the wind that fills my sail.
After many steps along my way,
When at last my final breath is spent.
I'll look back fondly on that day,
When the smoother path was taken away,
And know why mine was different.