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Tuesday, July 28, 2009

I am behind in posting...I know

I have pictures to post, but haven't had time to re-size them yet. My parents were here last week and we all went to Sea World together one day and then the beach another day. I apparently didn't put enough sun screen on my back because I match my work shirts now! It still hurts even 5 days later.

I took Sami school shopping on Sunday and got a few things. Boy are we in trouble, that child doesn't understand ' we can only get it today if its on sale'. She got a few outfits and some supplies. I had been buying some things all summer for her that I knew she needed. She starts school the last week of August, and then 5 days later she turns 7. We are already planning her party. It will be the biggest yet!

Summer is potty training and some days are better than others. We are looking for a pre-school for her, but they are all so expensive that I am not sure its going to happen. Our school district only has pre-school for kids with medical or developmental issues. Sami attended because of her EB and sensory issues, but Summer is normal and out of luck.

Grace out grew her play pen and is now on a toddler mattress. Once Joe can find the toddler bed in the attic then we'll try the bed thing again with her. She is so active in her sleep and just bumping on the side of the bed wakes her up at night.

Other than the heat, not much else to report!

Monday, July 13, 2009

Happy Birthday Jameson!

A year ago today a cute little baby was born at the same hospital Sami and Garrett were born at. He too has Epidermolysis Bullosa. I got to met him when he was just 2 weeks old and have been friends with his family every since. I went and helped with his dressing changes a few times and got to see him grow into this cute little person:) Sadly like Garrett, he developed some complications and died March 3rd. Today he would have been 1 years old.

I know how difficult today is for his family. I hope they are able to find some joy in the day. I am sure Jameson and Garrett are running around up in Heaven eating cake and ice cream and chasing butterflies with all the other EB angels:)

Happy Birthday Jameson!! We miss you so much.

Friday, July 10, 2009


When one of your children goes out of your life, you think of what he might have done with a few more years and you wonder what you are going to do with the rest of yours.

You never really accept it; you just go through the motions.

Then one day, because there is a world to be lived in, you find yourself a part of it again, trying to accomplish something--something that he did not have time enough to do.

And, perhaps, that is the reason for it all. I hope so.

~ Joseph Kennedy Sr.

That is a quote I found in Reader's Digest a few months ago. It fit so perfect for someone who has lost a child. Since losing Garrett, I have tried to reach out of all new EB families I have come in contact with. I have probably either spoken to on the phone, met in person or emailed over 100 families just since losing Garrett. I am sure there is a lot more since just having Sami almost 7 years ago.

I truly enjoy helping other families, i'd do it full time if I could! My goal is to make a new EB families journey through the world of EB a little easier, to teach them things that I now, but wished I had known them with Sami was a baby; it would have made things much easier. But there is also a downside to what I do....those that don't make it. About 1/3 of those 100 I mentioned above are now in Heaven with Garrett. The most recent on was this past Sunday.

A little 4-week old baby boy lost his battle to EB. His family lives in Michigan; 90 minutes from where I grew up. If I still lived in Michigan I would have jumped in the car and driven on over to meet the family. His name was Jayden, which ironiclly, what I had wanted to name Garrett (Joe apparently won that discussion!)

Each time another one get's their wings, it brings me back to losing Garrett, particularly if the person was a baby. So that is the downside of reaching out as much as I do. After almost every death, I always wonder how much more can I handle...can I keep doing what I do? I haven't walked a way yet...and I don't think I ever could. I hope I have made some difference in those families have come to know. I am not looking for any fame or acknolwdgement...most who know me, know I do a lot my work "behind the scenes' and i'd like to keep it that way! Being the center of attention isn't one of my goals:-)

Monday is going to be a very difficult day for one the EB families I know. Please keep them in your thoughts and prayers...i'll post more about it on Monday.

Sunday, July 5, 2009

4th of July 2009

Friday night we did Sparklers in the front yard. Saturday morning I worked till 9am and then we went to the parade. That night we went downtown and saw the fire works over the lake. Here are some pictures from the weekend!