A Very Tubie Thanksgiving

A Very Tubie Thanksgiving

Mmmmm Thankgiving… It’s coming! And it brings one thing to mind. FOOD! Lots and lots of food! My mom makes the BEST oyster stuffing! I know, sounds yucky right? WRONG. Totally wrong. It’s so good. And turkey, and cranberry sauce, and potatoes with lumps in them. YUM. Does food come first to mind for you too? YUM again! (I can’t help myself!) To a tubie, Thanksgiving looks entirely different. No food allowed? Well this certainly presents a challenge to tubie families. How to make a holiday that revolves primarily around food special to someone who can’t have it? This is the post for you! Here are some family Thanksgiving traditions we liked, and none have to do with food! Watch the Thanksgiving Day parade on TV – It is so fun to watch the balloon handlers walk those giant balloons along the streets of New York! My kids love naming each balloon and singing along with the floats that have music. It’s a fun family tradition and there is something int he parade for all ages. Your Own Turkey Bowl – Good old family football. Bundle up, grab some friends and family and meet at a park for some football. You won’t be alone, it’s kind of fun to drive by parks on Thanksgiving and see so many people outside playing together. I hear some people also watch football on TV as a tradition but this is far less appealing to me personally! Turkey Crafts – Last Sunday my three year old came running in the house after church with papers in his hands. “Mom! See my turkeys! They...
One Big Fat Mistake

One Big Fat Mistake

You know those times where you look back on a situation and think, ‘wow…. I went about that all wrong!’? Fairly recently I had one of these and it forced me to look back on life with my special needs daughter and realize that I really messed up. Not one big huge mistake but rather a series of events that, added together, made a big old mess. Obviously I don’t think I am alone in these mistakes so allow me to share my story in the hopes that you don’t have to do all the back-pedaling I am doing. After six years of being a special needs family my husband and I decided to go on a ‘second honeymoon’ trip out of the country. The challenge? We had five young children that we needed to find care for and one of them has special needs! We had aligned a close sister to take care of my special needs daughter, farmed out the other children and we thought we were all settled but then the whispers started. “They need to hire a nurse!” “How can she possibly care for Dylan’s needs!?” “Don’t they have to do medical procedures?” It was awkward. Yes, we do have to do a few things with Dylan that parents of typical children don’t have to do but we have been doing it for years, it’s second nature now and it’s easy! Her cares only take a few minutes three or four times a day. To hire a nurse to come over four times a day (at minimum, full time was implied) seemed a bit of...
Special Brothers

Special Brothers

I volunteer on a parents council for our local children’s hospital and a little while ago, during a brief tour of some new outpatient facilities, I met two young men. Over the course of the two hours I had the opportunity to observe these boys and that was it, I had to share a piece of what I saw that day. Through the local support groups I was able to track down their mother, Jodi, and first, compliment her on what an amazing job she must be doing with her boys! Then second, ask her if I can share a little bit about them here. What did I see that I had to share? I almost can’t even capture it here, you almost just need to see them in action, but I am going to try. The younger brother, Jacob is 14 and confined to a wheelchair. He has the diagnosis of cystic fibrosis as well as Cerebral Palsy. It is clear that physically he is very challenged but other than that, Jacob sounded to me to be an otherwise very typical, funny, excited, 14 year old boy. His brother Brendon is 16 and just got his driver’s license (he even pulled out his wallet to prove it!). What is so special about these brothers that  gives me my signature “cry eyes” when I think about it? They absolutely, 100%, exuded love for each other. Brendon was as nurturing as a parent typically is to their child to his younger brother. I saw it from the start. When they wheeled up, Jacob was given a hard hat to put on,...
Lion’s Story

Lion’s Story

Three years ago our son Landen was born with a severe heart condition.  We were shocked and devastated when doctors told us that he was not expected to live to his first birthday. Our little baby boy had a hard fight ahead of him. To symbolize the courage he would need we put a stuffed lion in his bed and we gave him the middle name Lion. To us, the lion stood for strength, courage and hope, all of which we knew our son had, and would need in his fight to survive. When Landen was two months old, the doctors found out that his heart condition was caused by a rare disorder called LEOPARD syndrome, a RASopathy. By this time, our little Lion was in end-stage heart failure. Doctors gave us a choice: we could either take him home and enjoy what little time was left, or try for a heart transplant. We knew our little Lion had more fight in him, so we listed him for a heart transplant. On Mother’s Day, at 3 months old Landen received his life-saving gift and also another unexpected gift. Our donor family sent a little stuffed lamb that matched our son’s Lion perfectly, it had been in their daughter’s bed while she fought in the hospital. We now say “Our strong lion has the heart of a little lamb.” Three amazing years later, we are still grateful for every day we have with our son, but with this gratitude comes unending oversight and heartfelt work. For example, our son takes multiple life-saving medications several times a day and his prescriptions...