Happy Summer!  I hope that you all are having a great summer!  Growing up with lymphangiomatosis was hard as a kid because there were always things things that I wanted to do that I wasn't "allowed" to do – ride a bike, run around, play sports, do gymnastics, skateboard, climb trees, the list went on and on.  Fortunately, my parents gave me the freedom to do many of these things in moderation and under supervision. Being able to made me feel normal and was so important.  Of course sometime the result may be an injury – for me it was a broken leg (falling off of a jungle gym) – but looking back it was well worth it.

After our son developed internal bleeding, we never got the chance to prove ourselves with our promise to let our son just 'be a little boy' when we got him home from the hospital. Taking him home a couple weeks later turned out to be for palliative care for the few days that he was expected to live…in fact, he lived exactly 30 hours after we arrived home. We never got to live out our promise to just let him be a kid, even if his play meant that something could go wrong. Prior to the internal bleeding, though, that is what he did, and he always knew what he could do and was capable of, even if it just meant taking some 'hot wheels' out to the sand box and laying down in the sand box to play with them. I encourage you to let your kids be kids and enjoy those memories of them living their lives to the fullest in spite of the limitations this terrible disease puts on them (and us as their parents as well as their siblings!) I am grateful for the memories of watching my son 'run' on a 'good' day and be SO proud of his abilities, even though we knew that he didn't run like any of the other kids. We were SO very proud of him, though, because there wasn't anything greater than to see him laugh and run in his quirky-looking way, and do what he COULD do on any given day because he was never promised that tomorrow was going to be good, too. He had so many bad days that seemed to turn into days and weeks sometimes, but even so, he lived his life to the fullest and the good days he did have are the days I remember the most and I am so glad that we just let him try and do things and not dwell on the what-ifs and keep him in a box, which we struggled with because of our own fears for him. I am thankful for every victory he had and I am so proud of him and the race he ran!

Stefan ~ December 1994-December 1999 ~ Miss you and love you forever!