Kellen’s Story: Our Little Wild Child

So often you hear the term “You don’t know what you’ve got until it’s gone” and while this might be true for a lot of people, I feel like we didn’t know what was missing in our lives until Kellen came along. Since day one he has been a force to be reckoned with, definitely our little wild child. Motherhood started out for me with two healthy sons, so we had no idea of the complexities of having a special needs child. We knew that parenthood was supposed to be intense, we didn’t know it was going to be THAT intense… The baby books can’t prepare you for the medical treatment that a child could need when their bodies are working against them, but we were blessed as a family that when one of us couldn’t shoulder the weight of it, the other would take over and this has helped us to grow and remain a strong family.

Kellen’s first diagnosis and surgery at 7 weeks old was such a strange time for us, my husband had just reported for his first day of work at a new job and I was supposed to return to work the next day as my maternity leave had ended. This was the beginning of a true ride in life. We followed his first surgery by a lengthy road to discovering his esophageal disease, Eosinophilic Esophagitis, and subsequently his growth hormone deficiency. In-between then and now, he’s had surgeries to have biopsies done, tonsils and adenoids removed, as well as a few other procedures. For the first two years of his life, he was on a medical formula that you could smell from the neighbor’s house, but he loved it and it kept him healthy through the end of his NG tube at 2 years old, when it was time for his treatment for his EoE and he finally got to start eating like a typical kiddo.

We still remember the first time he ‘stole’ an Oreo off of the kitchen counter… Little things like that constantly remind me that even though times have been hard, are still hard, and could possibly remain hard in the future… we have this incredible little boy who doesn’t even worry a single moment about his doctor appointments in Boise (roughly two hours from where we live), all he wants to do is say hi to ‘Ronald’ that sits on a bench outside of the Idaho Ronald McDonald House front door. Our support system is incredibly large. It isn’t only doctors but also the special nurses who help with his treatment, take our calls, help with prescriptions, etc… and the group of wonderful therapists that we have been blessed with for feeding therapy, Speech, OT and PT. We are fortunate enough that we live in a small town and he’s able to see his ‘friends’ not just during therapy but around town as well and it makes them feel a little less like his care team and a lot more like family.

Family doesn’t end in our own hometown though, it extends all the way to our favorite city of Boise, Idaho where we often stay at the Ronald McDonald House. Because we live over two hours away, it makes it really hard to be able to commute back and forth to his appointments, especially when he has appointments with his specialists 3-5 days in a row. Driving two hours there then back again after an appointment, bloodwork, and x-rays just to turn around and do it again the next day is extremely hard on a young child. Having a place that acts as a temporary home in our time of need is not just a sanity-saver, it also prevents us from having to risk multiple trips in severe weather and driving in the dark. The Idaho RMH is there for us, and once we get there… staff treats us like it’s exactly where we are meant to be. I have never once felt that I was somewhere I didn’t belong. From the first stay when we came as a family (and occasionally can manage every now and then) to the multiple stays where it’s just Kellen and me, we have been welcomed, chatted with, guided, encouraged, blessed and LOVED… also fed. We get fed well! When Kellen was on formula for those two years, we were provided with safe water during our stays to mix with his food. When he was able to start eating regular foods, we were given a WIDE variety of delicious meals made by incredible volunteers. When he is on a restriction of a certain food, there are multiple choices available for us which is a BIG blessing that makes our stays less stressful.

It also never fails that I get so focused on packing our bags for our trips to the Idaho RMH that I forget something. Usually toiletries. Usually our toothbrushes. It doesn’t take much more than a “May I please get some toothbrushes?” before you have 3 different staff members there to help you out. It’s incredibly heartwarming and I don’t know what we would do if we didn’t have the Idaho RMH to fall back on. Kellen’s smile, his chatter, his happiness, beats the ambulance ride, the overnight stays in the hospital, being put on oxygen, the needle pokes, the trial and error with medications…it’s all a part of God shaping him into the adult he’s meant to be. This is Kellen’s show and we are just along for the ride which makes us forever grateful that he will always be brave enough to take that Oreo and smile through it all.

~ Trinity Brito

 

Watch this short video about what courage means to Trinity.