Saturday, May 16, 2009

Making Friends In Mysterious Ways

So we're home and Isaac is doing pretty good. It will take a while to get his oxygen requirements back to baseline...something we can deal with here as there is no place like home! A few people asked me if it was easier for me to have him up at the hospital for awhile, if it was a nice break for me, and the answer to that question is a big fat NO. At home I have trusted nurses who care for him for part of the day while I take care of things or spend time with my daughter. I never have to worry about him here. At the hospital.......well that's a different story.

Today I want to talk about the people who have touched our lives in the past 2 years through Isaac. I truly believe that God brings people into our lives at just the right time, right when we need them. He knows! He loves us enough to know we can't possibly make it through the challenges of life alone. Through Isaac's fragile life I've met several people who have become dear to me through organizations, nursing agencies, church and even from halfway around the world on the Internet who share a special bond......being a Mom to a special needs child.

Right after finding out Isaac's diagnoses and going through the roller coaster of the NICU I felt like I was swimming alone. I thought "could anyone possibly understand what I'm going through?"During that time a friend of a friend unexpectedly came into my life who understood. Her daughter had also experienced the In's and outs of hospital stays and was medically fragile. She even had a rare disorder that caused everyone to scratch their heads. Having her call me frequently to see how I was doing during that time kept my head above water. I thought "She understands me, she's been there!" I could call her anytime and ask her a bunch of funny questions. What a blessing!

Later down the road, as most of you know, I met a family through the hospital who's daughter shares a similar chromosome disorder involving chromosome 10. This disorder is extremely rare and they live close by us. What are the odds? What a trip it has been getting to know the adoptive Mother as we both went through the ups and downs of having a medically fragile child. Sadly their daughter passed away last month, but I am so thankful that I got to know them.

About 5 months ago I wrote a poem called "I Often Wonder." I posted it when we were on caringbridge just for kicks. Well much to my surprise it's been in 3 newsletters already! So when it landed in one of the newsletters through Isaac's school I got a phone call. This nice lady said she appreciated my poem because she has a fragile baby who has been in and out of the hospital too and she was wondering herself "could anyone possibly understand what I'm going through?"So now I am able to give back to her what that special friend did for me back in the NICU days.

I posted the poem on the side of my blog.



Amber said...

I love the poem...and I love how He crosses our paths!

Junior said...

Your poem is beautiful, just perfect.
So happy that Issac is home.

Alicia said...

Awesome. Seriously.

The line where you speak of sandboxes, swimming pools, and ice cream cones... struck me hard. Since Marissa is the perfect age for all those things this summer, it hurts. All those things are a rite of passage for kiddos in the summer and she can't enjoy them. Not fair.

But, on the other hand, we are SO SO SO BLESSED! So many people don't get to experience the power of the love we are given from our special kids. Or understand what a true gift our kids are. We are BLESSED!

Thanks for sharing this poem that is so close to your heart.

John Gensic said...

Beautiful true and eye-opening.


Gammy said...

Hi everyone!

I love the joy and sweetness you can see in the eyes of Autumn and Isaac in the picture. Photographs can tell all. Such innocence and love I see between this developmentally disabled brother and his sister. He may be developmentally disabled as the doctors say he is, but it seems as though love surpasses all that is felt with and in Isaac. It's as if God is smiling at you.

Love, Gammy

Cjengo said...

It is nice having those around you that understand. It's like you don't want any other child to suffer, but its a relief talking to a mom who GETS IT!

Hugs to Isaac!!!