When I fix my eyes on Rett, I see a random mutation leaving devastation in its path. I see an attack. I see evil. I see weakness. I see darkness.
When I fix my eyes on Him, I see a higher plan and greater purpose. I see a rescue. I see all things working for good, for those that love Him. I see God’s intention for good to accomplish what is now being done. I see an inheritance that can never perish. I see grace that is sufficient. I see power made perfect. I see the Son.
When I fix my eyes on Rett, I see a very sad story that leaves no member of our family unaffected. I see the darkness that surround us all, and I see the days of uncertainty. I see the seemingly insurmountable challenges on the path to a cure. I see the doubt in some eyes when I talk about the possibility.
When I fix my eyes on Him, I see an inspiring story with beauty and love weaved throughout. I see an opportunity to show God’s love and God’s glory to the hundreds of people that have been divinely invited into our little world. I remember our God who has gone before us at every turn, and set our feet on solid ground. I see hundreds of hearts touched by the fighting spirit of one little girl. I see the certainty of our ultimate future and the light of His path. I see determined parents, great-grandparents, grandparents, aunts, uncles, cousins, and true friends. I see dedicated researchers, scientific progress and an omniscient Creator, who knit her together and knows her inmost being.
When I fix my eyes on Rett, I fear what it may take from my little girl forever: her voice, her ability to walk, her ability to eat, her heartbeats, possibly her very life. I’m sad that she cannot sing. I am sad that she cannot dance. I see her having to hold her breath 2 or 3 times a minute. I see her struggle to push herself up from the ground, pick up a toy, or pick up her food. I feel her frustration when her capabilities do not match her intelligence.
When I fix my eyes on Him, I am reminded that this life does not compare to the glory that will be revealed and the life she’ll have one day with Him. I know one day she’ll have a new voice and a new song- she’ll be a brand new creature. No more pain, no more tears. I will see her dance before Him.
When I fix my eyes on Rett, I see the one protein she can't make correctly.
When I fix my eyes on Him, I see the other 99,000+ proteins her body does make correctly. I see our intricate design.
When I fix my eyes on Rett, I have fear of the future. I fear tomorrow. I fear her growing bigger. I fear losing the support of our Team as this lingers. I am overwhelmed with questions. Will she have friends? Where will she go to school? Will she ever be potty trained? What if she realizes she can’t play sports? Will she be made fun of? Will she go to college? Will she ever have independence? Where will she live? What if something happens to me? Will we have enough money? Is she going to be ok? Is she in pain? Is she scared? Does she really feel trapped? What if she gets worse? What if they don’t find a cure? Will I ever be truly happy again? Is she truly happy? I am paralyzed.
When I fix my eyes on Him, I see the gift of Today, strength for today, His provision, His presence, His wisdom, His power, His plan and His promises. I see a Team that I never ever imagined would be so strong, so big-hearted, so encouraging, and so supportive. I see therapists and teachers that are just as determined as we are to keep her able bodied. I see her peers trying to connect and engage with her. I see a God who has control of the future and only requires that I walk in His way and love her and others as I go. I see that we are only built to face today. I realize I do not have the capacity to handle the future. He had her then, He’s got her now, He’ll have her then. What can my worry do to add a single cubit to her life? I have freedom to lay my burdens at His feet. I’m not supposed to have the answers, so why ask those questions? I have the power of prayer.
When I fix my eyes on Rett, I feel the cold sting of isolation. I feel different than other families and other moms. I feel like an outsider.
When I fix my eyes on Him, my eyes are open to the community of hearts who love our family deeply. I see family and friends who remind us daily that we are not walking this alone. I see Team Blake about 1,500 strong. I see family, friends, therapists, doctors, specialists, nurses, researchers, teachers and a church that loves us through it all. I see bonds being formed with other Rett families – precious people, whom we now have the honor of knowing and fighting with. I see “Team Blake” on t-shirts, car windows and football team signs. I see lots and lots of purple! I see everyone fighting their own battles even as they help us fight ours. I see community.
When I fix my eyes on Rett, I see despair, despondency, and depression.
When I fix my eyes on Him, I see a call to raw dependence and a promise of His hope and joy.
When I fix my eyes on Rett, I see tight finances, expensive therapies, expensive equipment, loads of time and little margin.
When I fix my eyes on Him, I see generous gifts of money (over $50K dollars given to her continued CARE and to the CURE in less than 2.5 months!), gifts of time and gifts of prayer. I see a restoration of margin in our finances and in our time. I am reminded to have faith that He'll continue to provide through His people and in other mysterious ways. I am reminded to trust He’ll provide for our every true need.
When I fix my eyes on Rett, I feel wooed to despair. I feel like I can’t breath. I feel physical discomfort at the inability to make my child’s pain and challenges go away.
When I fix my eyes on Him, I feel wooed to something greater. I realize that I am not supposed to get too comfortable or complacent in this life. I breathe Him in and feel His peace. I realize she is His, before she is mine. He loves her even more than I possibly could imagine. I see His angels surrounding her.
When I fix my eyes on Rett, I am a mom weak from crying, weak from worry, weak from the day to day. I see a mom who wants to be in control and who can’t seem turn off the “worry mode.” I see a mom who feels as if every weakness in her has been exposed and made vulnerable. I see a mom who has had to exchange some of her dreams to watch her worst fears come true. I see a mom who feels wide-awake in the middle of a nightmare. I see an aching heart.
When I fix my eyes on Him, I see a mom who has been emptied of her own strength, just to be filled with His. I see a mom whose busy schedule has become a blessing because it keeps her focused on what truly matters in life, not allowing any time for petty distractions. I see a heart adjusted and priorities shifted. I see a mom who now longs even more deeply for a home in Heaven. I see a mom who can relax, because she has realized He’s got her “even when”. I see a mom wide-awake to His Spirit, His strength, His love, His Son, and His people. I see a mom dead to self and alive in Him.
When I fix my eyes on Rett, I see a baby sister who may always have the burden of taking care of her older sister. I see a little girl who already has to make sacrifices.
When I fix my eyes on Him, I see a baby sister that has the blessing of taking care of her older sister. I see that He knew she needed a sister. I see that we needed her sunshine. I see her big and selfless heart. I see her already stepping up to help in the same ways she sees us helping. I realize that her heart is being trained in very unique and special ways; I see that opportunities to serve will not need to be manufactured. I see the benefits and blessings of a heart shaped by “special” circumstances. I see a wisdom and maturity well beyond her “months”.
When I fix my eyes on Rett, I see a tired daddy. A man who saw his daughter swollen, black and blue swallowed up by a hospital bed and moaning and groaning in pain for hours straight. A daddy who gets up in the middle of the night to cover his baby back up when she's kicked off her covers and can't pull them back up. A dad who works with excellence at his typical day job, just to come home to additional "special" work like getting in a "cozy" hyperbaric chamber for over an hour each night with his daughter (because her mom is claustrophobic). A daddy who rarely, if ever, sits in an "easy chair" because he's down on the ground helping his daughter learn to overcome the inability to sit down or stand up on her own. A daddy tired from his late night hours and long weekends in the garage to turn a hobby into a second income for his family, so I can focus on working with our girls. I see a daddy who has spent most of his "vacation" days in a hospital or at doctors' appointments.
When I fix my eyes on Him, I see a father strengthened, a father transformed, a heart and faith that can't be shaken. I see a strength of faith forged by hours spent praying and pleading for his daughter, for his wife, for his family. I see a daddy who puts a certain smile on his daughters face, that no other circumstance or person has been able to duplicate. I see a man who understands that his life is not his own. I see a man who understands sacrifice, because he chooses it every day over himself. I see a man after God’s own heart. I see a man who walks like Jesus--not with perfection, but most definitely with perseverance. I see a man, who just days after her diagnosis, said to me, "I've thought about it, and I believe God has prepared me for this. I am built for this." I see a husband who held my tear-streaked face, and said, "We will use this for His glory. We trusted Him when things were good, we will trust Him when things are not. It’s time to walk what we talk." I see a man who does not grumble about his lot in life, but shows up every day with a steady and strong hand and a quiet determined spirit. I see a husband that I didn't know I could love so much! (A husband who would make me delete this section if he knew I was posting it!) I see a man not interested in praise, but longing for the prize of his daughter’s success, the prize of a home in Heaven, and the prize of hearing the words, "well done good and faithful servant."
When I fix my eyes on Rett, I see grandparents hurting times two. I see them hurt for their Blakely as they hurt for their children too. I see them having to sacrifice a lot for our sake and for the sake of Blake. I've seen them have to put away some dreams for her too.
When I fix my eyes on Him, I am thankful for strong parents who have always taught us to look to the Lord. I see true love. I see softness in the tough granddaddy hearts. I see strength in the soft grandmother hearts. I see how God has worked in them to provide us what we need physically, financially and spiritually. I see the blessings we’ve received just by being their children. I’ve seen their respective communities rally behind them and connect with Blake just because she’s connected to them. I see the impact they have made on others through their lives and I see how much they are truly loved in return. I see their faces light up at the mere mention of Blake’s name. I see them celebrate Blake and all her perfection. I see a special bond that will never be broken. I see their big dreams for her!
When I fix my eyes on Rett, I see a girl that holds her hands differently, a girl with unusual movements and who walks a little funny. I see a girl who can't always do what other little girls her age are doing. I see a girl with a Neurological disorder.
When I fix my eyes on Him, I see a rare beauty, with a perfect little face and body. I see a little girl blessed with doting great grandmothers, grandmothers, aunts and great aunts that shower her with the most fashionable clothes. I see a little girl with beautiful, tiny hands that always look as if they are folded in prayer. I see a little girl who loves pink and princesses. I see a little girl who loves horses, and ice cream and being around her friends and family. I see a little girl with a very good brain and unaffected intelligence.
When I fix my eyes on Rett, I see a little girl surrounded at every pass by challenges, obstacles and hurdles. I see a little girl who’s experienced more pain in her 3 years of life, than I have in my 30.
When I fix my eyes on Him, I see a tenacious little 22 month old who, at the time, was determined to walk even when Rett was telling her she couldn’t. I am reminded of her chubby hand clinging to mine, as we walked the sidewalk in front of our house for hours at a time. I see a little girl who looks me straight in the eye and tries to communicate. I see a little girl who tries so hard to speak. I see a little girl who takes a shot to her booty every day and barely flinches. I see a little girl who works so stinking hard to make her body do the things she wants so badly to do. I see a little girl in the center of our Team’s circle. A circle, whose radius continues to grow by the hundreds. A circle surrounded and filled with prayer warriors helping us take aim at the enemy. I see an army of protection around my little fighter. I see a little girl who has gained more loving fans in her 3 years of life, than I have in my 30.
When I fix my eyes on Rett, I see an ugly disorder.
When I fix my eyes on Him, I see a gorgeous and perfect gift from God. I see a little girl who got a lot of her mama’s feisty and a lot of her daddy’s strength. I see a determined spirit, a fighter, a little soldier in early training. I see a little girl who shows up every day with a smile despite the pain, with a kiss in place of the hugs she cannot give. I see a tenacious spirit, a strong little body that won't quit. I see an attitude that says you may take my words, you may take my hands, but you can't take my spirit, you can't take my soul, you can't take my hope, you can't take my smarts, and you most certainly won't take my heart.
When I fix my eyes on Rett, I see ugliness in the temporal.
When I fix my eyes on Him, I see beauty made perfect in eternity.
When I fix my eyes on Rett, I see a Desert. I feel heat and I feel the oppression. I feel I am wandering in the wilderness. I spy the giants on our path to the Promised Land.
When I fix my eyes on Him, I see a Shepherd. I see manna and quail. I see shade trees. I see a cloud by day, and a pillar of fire by night. I see a loving community of people walking with us. I see a steady walk toward the Promised Land.
I see you Rett, but I do not fix my eyes on you. You may have crossed our path but you didn't die on one. We may have to stare you directly in the face sometimes, but we don’t have to remain fixed on you. Today, we fix our eyes on Him. And if we get tomorrow, we plan to do the same. And we will continue to do so, until we claim the victory.
Lord, when we give you fear, please give us faith. When we give you doubt, please give us grace. We fix our eyes on you, Lord. Help us to recognize your voice. We take on today, and today alone; Not with our own strength, but with yours. While the other guy plans our destruction, we'll wait on you to plan our deliverance, and we will wait to see your glory. Keep our eyes fixed on Jesus, and we pray others around us will do the same. Don't just keep our heads above the torrid waters, keep our feet above it too. Help us brave the storms of Rett, and walk upon those waters in faith toward you.
II Corinthians 12:9 - "But, he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore, I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me."
Genesis 50:20-21 - ..."You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives. So then, don't be afraid. I will provide for you and your children."
I Peter 1:3-9 - "Praise be to God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope throught the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade -- kept in heaven for you, who through faith are shielded by God's power until the coming of the salvation that is ready to be revealed in the last time. In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith -- of greater worth than gold, which perishes even though refined by fire-- may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. Though you have no seen him, you love him; and even though you do not see him now , you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the goal of your faith, the salvation of your souls."