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
breakfast. 

 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).

 

  

 



 

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.

 

Boy Mom Bloghop Welcome!

Hello Moms of Terrors...oh I mean, sweet boys :-)  I came across this on someones blog and this sounded like fun!  I am the mom of 1 girl and 4 boys.  My kids range in age from 9 yrs to almost 3 years old! 

Here is the rundown of the boys:

Daniel is my oldest son and he is 7 years old.  He is wild and crazy but he has the biggest heart.  He loves his momma :-)  He is also a very good big brother to his 3 little brothers!  He is always hugging someone, sometimes to rough but, love hurts sometimes ;-)

Up next are the twins, Michael and Matthew.  They are 4 1/2 years old.  They are amazing because they both have cerebral palsy and beat the odds everyday!  They were born at 32 weeks and spent 7 weeks in the NICU.  When they were 2 we found out that they had cerebral palsy.  Please check out my previous blogs about them. They are beautiful, wonderful and our families inspiration!

Last but not least, is Christopher.  He will turn 3 in September.  He is a ball of energy.  He is such a big help to his big brothers.  Sometimes I think I have triplets because Christopher, Michael and Matthew get into all kinds of mischief.  He is a very independent little boy but, will still sit with me and snuggle.  He is my baby!

The games these boys love to play is anything that has to do with Star Wars or Superheros. They are always dressing up as Batman, Robin, Spiderman, Superman...  They also love to look at books, do puzzles and color/draw. 

As for me, I work part-time out of the home and I am also an Independent Beachbody Coach.  Beachbody has changed my life in enabling me to exercise at home and make extra money from home.  I am committed to being healthy so I can be stronger mentally, emotionally and physically to take care of my family.  The kids love to exercise with me so I feel that I am teaching them good habits at an early age.  If you are interested in learning more about Beachbody (they are the makers of P90X), please contact me.  I know I could help you reach your fitness goals!  Right now my husband & I are doing P90X together and are having a great time getting fit together.

Thanks for visiting my blog, I hope you stay awhile!

 



My Crosses, My Joys

My joyful boys at 4!

I have so much to say and I am unsure where to start.  As I was dropping off the kids at Vacation Bible School this morning the twins group leader, stopped to tell me how wonderful the twins have been.  Not that I am surprised, they are pretty great kids but it was just hearing this from another person.  She went on about how smart they were, how well they participated and how they were always smiling.  I have heard that often from people that the boys smile all the time.  It is true, they are happy kids but, they have their moments like everyone else.  Those boys have been through so much in your life but yet nothing deters them.  I am in awe of what they do and I am humbled that God has made me their mother. 

It is amazing how our crosses can also be a source of our joy.  I am here to tell you, that it is not easy having 5 kids, let alone 2 that have disabilities.  Just the basic things in life that we take for granted have more work to them.  For instance, going potty. By the time most kids are 4 1/2, they can get on and off the potty by themselves.  Michael is just starting to be able to get off the potty by himself but he needs help getting on, pulling up pants, etc.  Matthew can't do either so, we has to be put on and off and help getting to the sink, etc.  I am not complaining, I am proud that the boys can do what the can now.  My point is, is there is more work involved in having twins but, then throw on top of that, the extra help that is needed can sometimes be tiring, especially at the end of the day when all you want to do is tell them to get dressed for bed, brush their teeth and go to bed :-)  Lately, Mark and I will each take a twin and that definitely lightens the load. 

Matthew in Michael during their stay at the NICU 2008

Both boys have been working at therapy and at home with getting dressed and undressed and have made great progress.  The boys continue to make progress in every area of their life.  They are 4 though and they whine and get upset and fight and all the normal things that 4 year old do!  I am thankful for that (though I have to tell myself that on some days).  I am thankful that their disability is only a physical and on the scale of kids with cerebral palsy, mild. 

We were told just a few weeks ago by their school therapist and after school therapist, that kids with cerebral palsy typically don't make the progress that both Michael and Matthew are making on a daily basis.  That just amazes me!  It amazes and humbles me that God would give us these boys to raise.    I am unworthy of such a task and some days that task feels so heavy.  I believe that God has blessed us with 2 wonderful, loving, smart boys.  He has also blessed us and them with 3 siblings who are amazing.  That is a blog for another day. 

I know for me, I have to focus more on the joys part and actually enjoy the joy, if you know what I mean.  I get far too caught up in the work to be done.  This morning, after I got Matthew dressed and put him in his chair to eat breakfast he said he wanted to hug me.  He gave me the biggest, sweetest hug around my neck and when I pulled back, he was just smiling...not that is JOY!

What inspires me...

I never thought walking would be so interesting and joyful to watch until I had two sons that couldn't do it without a lot of hard work.  Michael is only 4 years old and he has accomplished so much in his 4 short years.  I am in awe of him on a daily basis and all that he can do and the hope and confidence in all he WILL do in the future.  This is a major step for him and he will keep building on it.  Other problems seem so small when I think about all my boys have been through.

Way to go Michael!

Energy & Persistence conquer all things-Benjamin Franklin