Jilly Brandon

When I observe the love of a Father towards his children, I find it such a profoundly  beautiful thing.  A Father is so important to his children, and his love means everything to them.  I have seen such love expressed firsthand from my Father towards me, then watching how deeply my husband has lived and cared for his children.  My earthly father, John was a wonderful Dad to me.  I know undoubtedly of his adoration towards me, and I loved and respected him deeply.  He was a man of principle and strong convictions, someone who could be counted on to be morally sound, and his deep generosity and care for others was a resonating example to me to this day.  He had a dry wit, and a mischievous grin, often laughed at his own corny jokes, but loved his family deeply and thoroughly, and we never questioned his devotion to us.  He worked hard, enjoyed traveling, had deep friendships with people, and genuinely enjoyed being  in the company of others.  He treated others with respect, was never a “respecter of persons,” as he called it, and above all loved his Lord and savior to the depth of his being.  I am so grateful to have known him, and to have been given the gift of being his daughter.  When he was diagnosed with Parkinsons Disease it was an incredible shock to him, and my family.  It was a long, terrible, painful, heart wrenching journey that this  disease took him on, and it robbed him of so much.  Watching your father fight for dignity, sanity, and relief from his ailments is a deeply humbling experience to live through.  He taught me so much during his journey.  The undeniable human spirit that will fight to live, to pursue happiness, and to withstand incredible struggle just to survive.  Watching a loved one suffer is not something esily put into words…it leaves you raw and aching.  Your heart breaks as you watch them be wheeled into the shower in their shower chair, body hunched forward and broken….looking haunted….just existing….you cry out..make it stop, I can’t bear witness to this indecent suffering one moment longer.  The hooded expression, and fear in their eyes…suffering changes a person…if you can empathize with their plight, and attempt to reach the part you used to know you won’t be lost.  We yearn to stay connected to our loved ones, especially when their mind and body are wasting away.  I do count it a privilege to have loved and cared for my loved ones.  I know I come from a legacy of caregiving, and I am deeply grateful for the examples I have been given from my Dad, Mother, Nanny, and Grandma, Aunts….really so many who have impacted my life in this way.  I pay homage to my Father, and want to say thank you for loving me unconditionally, for making me feel honored and treasured …so incredible.  I have no doubt that because I always knew of his love and confidence in me, I can bestow this on my own children… The wonder of a good example can not be underestimated.

In our family there are 3 children.  Zach is 23, independent, fiercely loyal, loving and strong, a free and radical thinker.  Logan is 20, super energetic, highly creative, very musically inclined, and sets high goals for himself.  I’m so grateful to have these two sons.  My daughter, Bianca is 17..and well highly dependent.  She was born with a brain disorder which has been recently reclassified as polymicrogyria and microcephaly.  She is completely dependent on us, her family, and other caregivers for her every need.  She is incontinent, fed via a g-tube in her stomach, unable to roll over, sit up unassisted, crawl, or walk.  She us non verbal.  She often has seizure activity throughout her day, both hips are out of the sockets, she has 70% scoliosis in her back..and..whew..that seems like a lot for 1 kid…and truth be told..it is…if I just told you this about her, you would be overwhelmed and depressed, like I sometimes get…but there is so much more to her.  She loves, she gives it freely, and without reservation.  I often say that she gives the best reception out there.  When I enter her room most mornings, I can count on the widest, most precious smile to greet me.  I’ve often said, “it’s like I receive a standing ovation every time I come in the room..”…it’s fabulous, and makes you feel like a million bucks…she giggles, and responds, and I’m so grateful that she reacts this  way…it could so easily not be like this.

One of the best, and most satisfying things ever, is how much her Daddy loves her.  He has always been so attentive, fun and loving towards her, and when he walks in the room, it’s like the Fourth of July fireworks display, and a carnival all at once.  She literally “shines” for him.  Often he will get in the bed with her, and snuggle her close, and she nestles her sweet little face into his chest, and breathes a deep sigh of pure contentment.  As I watch this exchange, my heart overflows with gladness at the indescribable love bond that they share.  Even though she has never uttered a word, there is such love.  The emotions can be felt so deeply.  It has been a very painful journey for her Dad to love this girl.  He has endured her pain, felt her sufferings very keenly, and struggled with the “whys” of her condition.  He has tried desperately to understand the reasons for her plight, and has come back with more unanswered questions and heartache.  It has challenged his beliefs to his very core, and he has fought for her.  She is our family, and our two boys have had to sacrifice much in their lives to be in the same family as their sister.  I believe their father has epitomized great love and sacrifice for his children, and thusly, my sons hold these characteristics in their being.  My husband has taught them character through love, how to stand tall when others can’t, to struggle and to hold highly those who can’t care for themselves.  To treat others better than yourself, to elicit change in society through understanding and acceptance of human beings, despite how difficult their limitations may be.  I feel gratified that our family has had a man who stands for family, for love and devotion, and who is not willing to compromise his values.  There are extreme challenges in his personal life, but he cares for his patients beautifully, and with such heart, and for  those around him, they see him as a friend, and Dad they can respect.  That is a gift, and hopefully one day, if my sons should have children, they will be able to draw on the sacrificial love that they saw so displayed in their own home.  Love is a choice, to esteem others better than yourself, and to seek to make others lives better in whatever means possible, something beautiful to strive for…as I reflect on these thoughts I feel the need to quiet my own spirit, to look within, and just be in the moment.  All we have is right now, and I am awestruck by the amazing men who have shaped my life through their examples of love and devotion.  We can never up, never stop looking for answers, but also, at some point it is ok, and important to just rest, and enjoy the love that you share…that is the gift..the gift of “only a fathers love.”