The Mighty Men

Just a brief blog from the heart-this weekend we will honor Dads across the country for their commitment to loving, providing for, and supporting their families in many different ways, all year long! I was very blessed to have had a Dad who did exactly those things for his children to the best of his ability. My husband, Jim, is exactly the same in his demonstration of love, support, and provision for Brian, (his Dad was too with Jim and his siblings), along with many Dads who we know. I believe our special children understand these remarkable qualities, even if they can’t say so, but they absolutely KNOW SO!! I see it when Jim and Brian share time together; they are best friends, Home Depot Brothers, Book Buddies, and have a “male bonding” that is so close- girls keep out!! I was very close to my own Dad and shared a similar bond with him that lasted until he passed away . Dad left behind this beautiful legacy for his family and a love so strong for Brian, that it’s easy to see why Brian is a happy/lovable guy ( at least most of the time)- it’s generational!

We also honor on Sunday the strength, love, and dedication of those men who have given of their time and talents to our special children. That’s everyone from extended family/friends, teachers, aides, and therapists, to the coaches, mentors, and volunteers- thank you from the bottom of our hearts for being such an integral part of our children’s life journey. You are wonderful role models that our kids need to be with. You are patient, kind, and tireless with your efforts. You have given our kids opportunities and relationships that they wouldn’t otherwise have had. You are are our rock and we can count on you. Your presence in our kids lives means more than we can ever fully express…you are also the mighty men!! You have our deepest gratitude.

God Bless our Mighty Men! May you be spoiled rotten this Sunday with all of your favorite things by the people who love you. It is well deserved! Thank you for the love and legacy that you are passing on to the next generation, especially to our kids, a priceless gift that keeps on giving…Happy Fathers Day! πŸ˜˜β€οΈπŸ˜ŠπŸ‘πŸ»

Until next time, thanks for reading!β€οΈπŸ˜ŠπŸ‘πŸ»

A Declaration Of Bathroom Independence

Hear ye! Hear ye! On the 6th day of June 2018, Brian Michael McDonnell independently completed all of the steps required for a successful bathroom experience at home! Like the American colonists who were under British rule for almost 200 years before they finally gained their independence, we too, had our “July 4th Moment” on Wednesday afternoon when Brian executed all of the steps necessary for toileting at home after 12 years of training ( though it certainly felt more like 200 years !). What a feeling of freedom and victory, something I’m sure our forefathers also experienced back in the 18th century, though certainly for much bigger reasons! Having said that, independent toileting is a HUGE deal in our world; it is momentous and life-changing for all concerned. I feel that such a weight has been lifted off of my shoulders; what a relief! We celebrated last night with brownies and pudding, giving this milestone the proper celebration that it truly deserved.

Now I pray that Brian will be consistent in using the bathroom on his own and learn to generalize this skill outside of the home. For years, Brian has been like a camel, refusing to use the bathroom at school. (This makes absolutely no sense to a menopausal woman with a bladder the size of a peanut, but I digress… ) The jury is still out on whether this is a sensory or a control issue; I happen to believe it’s a combination of both. It makes sense for a non-verbal child to want to exercise control over one of the few areas of his life that he can and sometimes scares his parents to death in the process- like the emergency room visit at the hospital 3 years ago when Brian hadn’t urinated in 16 hours! Talk about frightening- blood work, a renal ultrasound, and exam determined everything was just fine, and yes, Brian FINALLY voided, shortly after the doctor told us that a catheter was in Brian’s future if he didn’t perform. Somehow, Brian must have understood this and that a catheter wasn’t going to be fun. The Versed ( a drug for conscious sedation) that Brian received prior to the blood draw was so effective, that they could have taken all of his blood, he was so happy and relaxed! I decided to seize this rare opportunity and trim both his nails and hair while he was in this state. I had grabbed the nail clippers and manicure scissors before we left for the hospital, because I knew Brian would probably receive Versed or something similar to calm him down. Both the nurses and the attending physician were amused and impressed by my full “spa services”. 🀣

We Special Parents are used to multi-tasking and are experts in defusing difficult situations for our kids, preferably as soon as possible and without screaming. Necessity was definitely the mother of invention that day in the hospital. A happy ending of urination, normal kidneys and blood work, along with clipped nails and trimmed hair made for a perfect ER experience, lol! I laugh now, because I can, but it was certainly a nerve-wracking ordeal to go through. Fast forward 3 years later to this blessed day , which gives me hope that other basic skills will also come eventually in their own time. Sometimes hope and humor are all we have left as we wait, especially when our kids progress has plateaued, those “watching the grass grow”, kind of painful moments, like toilet training for over a decade. The teaching, the repetition, and the waiting, are the hardest and most mentally/ physically exhausting parts of this parenting, especially as I am getting older and Brian is getting bigger. This is the reality of our journey, but I don’t want this fact to rob me of my joy in the present moment. Such milestones are too important and deserve my undivided attention and elation. I have earned this accolade as much as Brian has.

I am pleased to report that Brian has very recently started to use the bathroom at school as well, though he still requires reminders. Right now, it’s just a few times a week, ( otherwise he still holds), but it is a start… and I will gladly take it! Welcome to our world, where the highs are higher and the lows are lower, and where no small achievement, even going to the bathroom, is ever taken for granted! We are often forced to live in the present moment with our kids, sometimes very painfully, but always fully and often with joy. As our children continue to declare their independence in all things great and small over the course of their lifetimes, I am constantly reminded that we are in a marathon, not a race. The moment I take my focus off this truth is when I get into big trouble both mentally and emotionally. I have spent too many years in despair over the challenges that I can’t fix in Brian’s life , so I am trying to surrender control one day, even one moment, at a time. I will tell you that it’s a better place to live in and is only made possible by the grace of God. I really don’t want to live anywhere else!

Until we meet again, thanks for reading! 😊