There will be a day, with no more tears, fears, and pain. There will be a day with no more needles, no more IV's, no more hospital's, no medications. That day will come one day for all of us. The day we are called home to Glory, to meet him face to face, the day we take our last breath here on earth. That will be the day, it all fades away, where it will no longer be a memory, it will no longer be a burden you carry, for yourself, for others, it will be weightless bliss.
I have never been a cynic, far from it, I think I have been seen as one form time to time, but that was before my Lily. I consider myself a sentimentalist, I am governed by feelings, driven by them. I know logic, I understand it, I don't discard it, but in the life we now are living, I live by emotions. Day by day, on a whim, taken on the fly. Planning life, is great for some, heck, great for many, but when disaster comes, turns that plan, and throws it from the window, you have two choices. One, dig your feet into the ground, say, "Stick to the plan, we will work around it." or two, say, "Screw life's plan, we will take what comes, and live day by day." Well the latter become our life's motto. One was once upon a time, or as we like to say, Once Upon our Lily. We are never angered by it, we are never resistantful to it, we smile at the fate we have been handed, and make sure to turn our hearts and head up to the sky at the end of the day, from our bended knees and folded hands. Our family was forever changed the moment our little 6lb 9oz bundle of miracles joined our ranks. More for the better then the worst. Many of you who just read the word "worst" please do allow me to explain.
When having a child with medical problems, life threatening, more so at some points, then others, you will understand what I am about to say. To others, sometimes it's the journey of watching others, your loved ones, dear friends, or your friends children, suffer through it all. Only then do you some what comprehend the lives we lead and the choices we have to make. The lives of the brave, the weary, the heartache, the pain, the fight; the continuous battle of it all. The hospital stays, the surgeries, the bad news, the good news, the separation from other children, the separation from the sick child, learning to live life "normally", a new normal. Giving more time to the child who is sick, then being able to give it to all the kids. No matter how much you try to spread yourself out between your children, to make sure no one feels left out, soon you are spread to thin. Your marriage has it hurtles, no matter how strong it is. A sick child wears on the whole family. Fiances, are always a big things, medical bills roll in, you wonder when they will stop and start paying on ones, but see no end in sight, as they keep coming. You have a whole drawer in your filing cabinet dedicated for them, bills, medical information, your life. You learn life saving techniques, you are always on guard, your medical knowledge grows, you feel like a walking book of medical terms, all for your child. You are their advocate as they grow, the feeling is sometimes overwhelming. You wonder if you are doing it all right, if this is what they would want. We fight for them, we fight until they can take over the fighting or until there is no fight left......
In the mean time, what has become of your family, your children, your marriage...you look at it all. Did you juggle it right? Did you dedicate enough time to it all? Do your other children hold resentment towards their sibling? Did you miss out on key moments of their life while attending to the life of their sibling. Making sure we all remained a family, it is the hardest thing, and most grueling task, minus the trials of the sick child. Holding together as one, strong, loving, and balanced.
I fear the boys will resent Lily one day, no matter how much we explain things to them. No matter how much time we give them. Lily's future is uncertain, and it became that way the moment she was conceived, as with the rest of us, but hers is a bit more uncertain then ours. We all can look towards the prospects of growing old, into our 60's+, at least. Lily, it all depends, on medical technology, Gods blessings and miracles. It is all his choosing, you don't look at life with the attitude of, "Well if we lose her, was it really worth putting her through all that pain to begin with?" She fights for her chance at life, no matter how big, or small it may be. A medically ill child teaches you to be blessed with every breath you take. To thank our father in heaven each night for another day, and if he so choose to wake us in the morning, we will see it as another blessing.
Some already have that outlook on life, others are not as fortunate. Most, take a life threatening diagnoses, or life altering experience. To open their eyes, to see the world in such a brilliance, in such glory. Once you are awaken to it, you never want to let go of it. Even if we were to lose our precious girl, we would never let go of what we have learned. She may never have a park named after her, her name may never cross the lips of millions, she may not make it into any medical text books, but my daughter has lived, she has defied the odds. We were once told to not expect her to make it through the night, that there was nothing more surgically we could do for her, that she was in the hands of God, and truly she was. She is our legacy, she changed our lives, and the lives of those who know her. She is my fighter, she is OUR fighter, she shows our family the power of God and his grace. His beauty, his love, his life and creation. I may write her story, but many write books, and many are forgotten.
Most of us will live or lives, pass through here on earth, and leave nothing behind but a name and a tombstone. We will be on an ancestral tree, that is brought out with each new generation, an old photograph will be shown to our progeny, a brief story will be told, until we are forgotten. Such is how life goes, how it has gone before us. Not all of us make big stories, and we aren't all supposed to. We may suffer, but we aren't the first and nor will we be the last. My name is Jenna Lee Brown McLaughlin, 200 years from now, I will be known as, great great great great, something to someone I will never know. Lily with her medical problems, is still just Lilyana Annsaleigh McLaughlin. Daughter of Christopher Jay and Jenna Lee, sister of Lucas Christopher, and Austin Nicholas. And hopefully one day, she will be aunt and mother, but that brings us full circle.
One day, never let go of the hope of tomorrow, but the acceptance of today might be our last. Live life, love life, enjoy life. Don't try to understand life constantly, enjoy the beauty of it from time to time. Think with emotions and feelings, not always logic and reason. Sometimes you just have to let go of what you knew, to know something new.
Love, Hugs, and Blessings,
Jenna Lee Brown-McLaughlin
the proud daughter of
Wade Brown and Julie Daffron
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