When she is in heaven
Our daughter was deemed to die, before she was even born, with Trisomy 18. We fought an uphill battle, fighting for her rights to treatments and life. Fortunately, we are at a phase of her life, where her medical professionals are handpicked (instead of taking whoever would be willing to help her), and she is flourishing against all odds that come her way.
Years ago, I made a bucket list for all 4 of our kiddos. We thought Kayli would have more challenges in marking things off, but we found instead, that she helped us to see all the things we and others take for granted and don’t even put on their bucket list. To this day, Kayli has done everything on her bucket list, which also consists of all things on her brother’s bucket lists. Kayli and her brothers have done more in their lives, than many adults have! My hubby and I find ourselves the challenged ones, as we struggle to think of things to put on her bucket list, so we feel like we’ve given Kayli a full life. The pressure was on us to do so, since the very first time a fellow human being told us that Kayli would only have a life of suffering and our family of regrets, even while we expressed our desire to not only give birth to our daughter, but to raise her as we do our boys. The uphill battle has not been about raising a child with a terminal prognosis, nor of a medically influenced childhood….it has been a battle of wills between Kayli and those who had once not believed in her. It has been a battle of mind, as the thoughts go through our heads; “is this the last time…”. These thoughts come regularly, as we push Kayli in a swing, take a walk around the block, celebrate her birthday, sit her on a pony, take our cheerleader to her brother’s games, or are admitted to the hospital. As the years go by, the fear has calmed, but the wonders never cease.
I have been released of the fear of death, greatly due to the fact that my faith holds me to the understanding that while it is us who will cry, those who die will be fulfilled with peace and love, and free of any judgments, challenges, and harm, once home, with our maker. While I find peace in Kayli’s, and all of our, imminent death, I find that I’ve refocused on what Kayli will say of us when she lives within God vs her present state of God living within her.
I wonder if she will tell God she knows of our great love for her. Is she proud of the choices we’ve made for her? As I did as a child, will she exclaim what she would do differently in a parental role? Will she only remember the great times, or will she remember lessons learned? Would she say she wanted one more ride on the roller coaster, or hayride? Would she wish she could have climbed that tree on her own? Would Kayli sit on Jesus’ lap and tell him stories of the greatest moments of her life, or cry because she wasn’t done on earth yet? Will she vouch for us and beg for us to join her in His kingdom, or will she know of His plan to keep us on earth longer?
In truth, what will our boys say? What will we say? In this way, I think Kayli is no different than we are. We are all children of God. We are all challenged and we are blessed. We’ve adapted, and we’ve been stubborn. We have struggled, and we have found peace.
If you were to look at Kayli today, you would see jaw stabilizers in her cheeks, a trach in her throat, eyeglasses on her face, a hearing aid in her ear, a feeding tube in her stomach….and a sparkle in her eyes. You will see a will to live that is stronger than any other, and a depth to her eyes, that holds the secrets of her will to live. You won’t see the appreciation for those who care for her every need, but you somehow know it’s there. If you are open to looking past your expectations of what Kayli’s life “should be”, you will see the life lessons that she’s taught so many, as a selfless token of God’s love. You will be Blessed to be in the presence of a child who could tell God, as she sits on his lap when arriving in heaven, that she has never caused harm to another, but has only shone them His love. Kayli is likely to be one of the purest, who will ever go to heaven. For this reason, many have called her His angel, on earth. She has been granted the most Blessed of all lives, to be one of His pure souls, here on earth! She will never sin, as we do. Her life is simple (not complex like so many in the medical field claim her to be), yet most valued, as she has lived with a purpose, to share God’s love, unconditionally. She is not the defective result of a fluke at birth, she is perfect. She is a gift from God. She is perfect for him, and perfect for us, in every way.