The sun came out today. I didn’t think that it would, in fact, I kind of dared it not to…However as we opened our eyes from bidding a farewell prayer to my beloved child over her casket..there it was…the sunshine. I’m not gonna lie, it has been rather gloomy and cloudy the last few days, both in the atmosphere and in our hearts. It has felt that our sky was crying, it was mourning, and that felt pure, it felt right. After all, how could the sun still shine while my daughter no longer lives. It felt impossible…wrong even. However there it was poking it’s radiant self through the white billowy clouds, and I had hope. I’m not sure how this grief odyssey that I’ve been flung upon will work…Today, it’s just a week and a day that my dear Bianca breathed her last. Today we laid her to rest. I’m not really even sure what that means because as we drove away from her lily white coffin, I desperately wanted to run back and take her with us. How can we just leave her like that… I know in my head what has happened, but alas..my heart has not yet caught up to speed.Im not sure when it will? It is so surreal to be in our home without her. The stark emptiness that her presence leaves is vast. I can’t walk into her room and see her adorable beaming little face, hear her giggles, and snuggle her close…oh the sorrow, and the sadness of missing her, and I know it has just begun….The vastness of the future ahead without her in it fills my heart with a deep sense of loneliness. I know in my heart of hearts that she surely is at peace, but it’s so true that the void she leaves in our family is palpable.
On October 3rd, we celebrated and remembered our daughter who passed away on Sunday, September 27th, at 17 years old, the day of the blood moon, which apparently,(this one in particular, happens every 17 years…) but perhaps Im seeing a correlation that really isn’t there, however all of these number sevens have leave me to wondering. I believe it really was her time, and that she completed on this earth the tasks that were set out before her. Possibly imperceivable tasks for me to notice. I know beyond any doubt that her life meant something, it was worth something. She came into this world and graced our family with her beaming presence, and for that we are supremely glad.
The day of her memorial was an impossible day for us. It was a day that we have chosen to send off our precious girl officially. I have imagined this day for so many years, and pictured what it would be like..but somehow..now..being at this place..I have no clue as to how to say goodbye to our beloved Bianca.
When Bianca was diagnosed with her disability over 16 years ago, we were dumbfounded and so completely devastated. How could this precious little baby girl not get to run and play like the other kids. It felt cruel, it was heartbreaking, and it truly was impossible to believe. The doctors said, ” she will never do anything with purpose, never sit up, always be an infant, be profoundly mentally challenged.” How could this be?? The road ahead seemed too impossible to navigate, and it was. I remember early on, just driving in my car screaming and crying out at the top of my lungs..”NOOOO!”..this cannot be. I will not accept this..but this girl..what a joy, and incredible gift she turned out to be. If I had to choose her before I had known her, I might not have done it, and then how much I, we, would have missed.
She started having seizures, or infantile spasms, as they are called, at 7 months of age. This was hard to bear, and I never got used to them. Most times tears would run down my face as I held my baby girl to my breast, and tried to nurse away her discomfort. I’ve thought many times through the years that it should be impossible for my heart to break apart this many times, and yet it continued to break, and heal, and break again..This girl..so unexpected..how much she would teach me, and us. She would never say even one word, and yet the volumes she taught would overflow the libraries of this world.
I had no idea how much compassion and empathy the world needed..I needed. How was it possible that she could be so completely unable to do the simplest tasks, and yet stagger me with her joy and knowledge? It makes no sense, and yet it was true. She taught me that the little things are the big things, and that if we miss out on these things, we then will miss everything. She taught me to treasure life, and to not take one blessed second for granted. She drove me to live fully, and to not look back..to forgive often, and to love with extreme. I was determined to give her a rich and joyous life, but that’s what she gave me. She was fun..no FUN was her middle name. She loved crazy rides, and the wilder, and crazier you could drive that wheelchair of hers, the better she liked it. She cared nothing for social graces, she never thought to feel sorry for herself, or look down upon another..she did not pity herself. She wanted to experience life, and so we did. We strove for her to do life richly and fully. The courage in this little person was transforming and inspiring to me. How dare I have a bad day, look down upon myself? This was an intolerable idea. She pushed me to love better, to see others that needed love and acceptance, probably people I would not have noticed before…
When my boys, and husband decided to go skydiving a few years back, we remarked that she would have been at the front of the line saying as she kept out into the cool wind, ” c’mon, what are you waiting for?…Jump, or get out of my way!” She was like that. She just made you work harder..she dared you to just go for it. We are driven because she made you feel like anything was possible if you just believed, and took the plunge.
Getting to be her Mum was one of the most amazing privelges of my life. I feel like she chose me, and I her. For a long time, when you would lay in bed next to her, she would not snuggle with you..and then, one day, she seemed to instinctively react and draw closer, and then she would press that precious face into your neck, and you would both be held. I’ve had a few tell me that being in her room with her was like being on holy ground..it was sacred. You felt closer to heaven right there, than anywhere else. We played under the covers, played peak a boo, and we would stare into one another’s’ eyes while laying nose to nose. It was the best. When she liked something, her face would flush, and she would squeal, and giggle, and snort…How I will miss her sounds..they were precious….they were uniquely her. The smell of her freshly washed curly hair, the scent of her skin, for those things I ache..I will miss. I’m glad that her pain is gone..no more out of joint hips, curved spine, crushed lung, being fed through a g-tube, unable to crawl, walk, or sit up unassisted…and no more annoying diapers….Today she is transformed I believe, her body is new and perfect. She can walk, speak, climb, fall down and pick herself back up…she can dance..today she is free, unhindered by those constraints of her wheelchair, her hospital bed…today she flies on the wings of an eagle. She is experiencing the perfect joy of being with ajesus, of being known fully. What must that be like? I can only imagine. I will miss her, my arms ache with the emptiness of her being gone. I can’t help it. I yearn to hold her, take her for walks, take her into the water, go on fast boat rides..but oh what a ride we had. I wouldn’t trade it for anything. Thank you sweet daughter for your grace, your beauty, your courage, and your endurance. You stagger me with your ability to love and inspire. What an angel we entertained in our home, such a treasure. You were so loved, respected and cried over. Our hearts break today, and for many days to come, for the missing of you. I look forward with eager anticipation to being reunited with you someday in heaven..never ever having to say good bye again. Of this I hope, of this I pray…My sweet Bonkers, you lit up our worlds, and somehow today, my world is duller without you here. As the bible verse says…”Let your light shine,” and shine you did. You were a beautiful beacon of hope to us, to believe in the impossible, and to know with complete abandon, that love is really the answer.
It is eerily quiet by your room, and so many times already I find myself automatically going towards your room to check on you, to feed you, adjust you in your bed, change your diaper, or even just change the TV channel. How many hours have I laid by your side, have I held you and carried you? It seems impossible that this is over now. Your squeals of delight when there would be something we did that you would enjoy, having the wind blow your hair back while being pushed at great speed in your chair, knocking stuffed animals, and I-pod off your seat tray. The look of complete excitement when I would wheel your chair into your room and ask? “Do you wanna go outside?” Or when I would take you to the pool and say, ” do you wanna go swimming?” Even though you couldn’t voice the words, the absolute joy, and cooing with excitement in your voice is unmistakeable. Your noises, so incredible, your giggle, one of the most beautiful sounds that I have ever heard. You were awesome and oh how I have loved you..loving you and caring for you was excruciating and challenging..it was awe inspiring, and completely heart breaking. I cannot wish for it to be another way..it was all that I know.
I thank God for you..my daughter, my love. Thank you for showing me in your smile and laugh, a glimpse of what heaven will be like. I will never forget you, and I crave the day when we will be once again reunited with our precious lord and Savior, Jesus Christ..where I will behold your angelic face, touch your soft brown curls, and we shall dance together with the most High. I yearn for the day..I can’t wait to hold you again, to hear your voice, have you speak to me, and have you call me Mamma. I want to hear your thoughts. Thank you for gracing me, your Dad, and your wonderful brothers, Zach and Logan, and your siblings who joined you in heaven, Jessie, and Jordan with the gift of you. You rocked our world..you lit it up.
I’m so thrilled that you no longer need any handicap equipment. I can’t wish you back here because I know that you are finally free of your constraining earthly body. You are perfect now, and your legs are strong, your arms work the way you want them to, you can finally hold your head up high, and your backbone is as straight as a poker. Fly high my precious child, for you have gained your wings, and I am so thrilled that you sit with Jesus, and that you lift your voice in song, and you are surrounded by our many loved ones who have gone before.
I am lost without you my sweet baby girl…my constant love, and joy giver..your Mamma longs for you, and cries for you… I am so beyond grateful to have been yours. Thank you for trusting me, and stretching me far beyond what I ever thought that I could bear. Please God give me the courage to go on, to be deserving of the legacy of your love. Let me see others through your eyes, give me the stamina to live and breathe, experience life with the joy and trust of my darling Bianca. Thank you Lord for entrusting her to me. Today..I give her back to you, knowing that you have loved her perfectly, and that she is completely known by you. Please dear Lord, protect our family, for we are broken, and we are crushed in spirit..we need you, do not ever leave us or forsake us. Be near to our broken hearts for we don’t know what yo do. Lift up our lives, and carry us….shelter us in the shadow of your mighty wings.