Miles for Miracles-Marathon Monday

•7 May 12 • Leave a Comment

So I had written some of this out but not sure why it didn’t save. Anyway lil squishy was paired up with a runner for the Boston Marathon this year through Children’s Hospital Boston Miles for Miracles running team.  Children’s has been a great and wonderful resource and been great to our son as we’ve navigated his Arthrogryposis condition. Lil squishy’s runner Christine was wonderful and a definite inspiration herself with running the marathon and training so hard so she could run it. It was such a warm day and I respect all of those who came out and ran anyway especially Christine.  I’m not as elegant with my words when I should be but I can’t say enough how much Children’s Hospital has meant to our family and son and I can’t begin to explain the gratitude to Christine for her fundraising for Children’s and her determination to run the marathon.  We had a wonderful day cheering on all the runners and hope to do it again next year.  Here are a couple of pictures 🙂

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Quick update

•24 April 12 • Leave a Comment

I know it’s been a while since I’ve posted.  I just wanted to inform those out there that read this that I will be posting soon about the Miles for Miracles CHB runners that ran the Boston Marathon soon.  Lil squishy was partnered up with a wonderful runner and she raised money for the hospital and we raised a little ourselves and then she ran the marathon :).  We got to go and cheer her on for the wonderful and amazing thing she did by helping to give back to a wonderful hospital.  We thank the enitre CHB runners and the great job they did.

 

Miles for Miracles

•28 March 12 • Leave a Comment

Lil squishy has been signed up with a runner this year for the Boston Marathon. His runner is dedicated to running and raising money for Children’s Hospital Boston(CHB). CHB has been exceptional in providing the best care for our son and for so many other kids, many of who we know.  This year our family will be sitting out at one of the Children’s Hospital cheering sections to cheer on our wonderful runner.  We are also trying to help her raise money also, though it is not required of us. Lil man has his own site to donate to and can be found here if you would like to contribute.  Any amount is appreciated.  Thanks.

Support

•26 February 12 • Leave a Comment

This post is pretty much going to be about what the title says, support.  Now personally we have not had a problem with this.  Our family and friends have always been their to support or help us when needed.  I have however noticed a common problem among many of our special needs families and that is a lack of support wether from friends or family.

I find this problem to be unacceptable.  If you are not going to stand beside or behind your family or friends as they go through everything they have to in order to help take care of and get the things they need for their child then you should just leave and not look back. A bit harsh maybe but the fact of the matter is that as special needs families we have to fight and argue with Doctor’s, Insurance, Therapists, Medical Equipment companies, Schools, Teachers, other medicl personnel and even John and Jane Doe because everyone is questioning you or trying to bring you down even if unintentionally so the last thing we want to do is to have to defend ourselves to our friends and family.  You are the last people we want to have to defend our choices and decisions to.  We’ve already beaten ourselves up over the choices we’re making wether it’s,  Are we doing the right thing? Is this really worth it? Was this really worth it? Is this going to help? Did we make the right decision? We don’t need any help in beating us up over these things, we’re doing a good enough job ourselves. 

What we do need is someone to be there to listen, to support us when we make a decision and sometimes be there to offer an opinion IF we ask you.  Being a parent is really hard and being a special needs parent is harder because you are in a constant battle over something because everyone wants to fight you at every turn.  It’s not fun, it’s not easy but we do the best we can and all we ask is for a little support and understanding and love.

So please if you have a family member or a friend who is considered a special needs family please just be there for them and love and support them.  It’s all they want from you.  Again like I said we have not had this problem and I am so thankful of that.  We have such a great support from our family and friends and I thank you all for that and I hope you all know how much that means to us. 

Snow Fun videos

•22 January 12 • Leave a Comment

 Two videos from lil man’s snow day…. One with snow angels and another with “sledding” Forgive my crazy laughing and talking in the background lol

Sledding Snow Angel

Snow Fun

•21 January 12 • Leave a Comment

Today was the first day that lil squishy got to really play in the snow… Made some snow angels with auntie and played with his uncles and played with his older sister and cousins… Mommy took pictures of all the craziness and a few videos..

Merry Christmas

•21 January 12 • Leave a Comment

Wanted to get this lovely picture out in the mail soon of my little lovlies for Christmas but with things being crazy at least you can see it here…. (not entirely sure why it didn’t post and was saved but better late then never 😛 )

Merry Christmas!