Surgery Day


DSC01048It’s been exhausting. This whole process. Learning to let go, say goodbye, embrace the new and look ahead. We see possibility, we scream it rather than choosing disability. We see our strong fighter, our wise warrior in his hospital crib smiling at the nurses and doctors who arrive to rip tape off his delicate skin. We see him trying to play, wanting to read with those big old dinosaur casts on. We’re thankful for America. Thankful we are lucky enough to call this place home.DSC00756Have jobs with such compassionate, truly thoughtful and dear coworkers…friends. We’re thankful for health insurance and the “best of the best” doctors in our backyard. We’re thankful for friends and family who sat with us through this ordeal. Who texted us, called us, were thinking of us. DSC00749Who took our minds off what was so clearly out of our hands and impossible to process. The arms of a momma want to push all harm away from their wee ones, seek to guard and shield, and yesterday these momma arms had to surrender, part with and wait empty for a time while Cade was in the OR. It was as if I was a caged beast, and had we not community and family, I would have been pacing, probably foaming at the mouth.
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This is all hard. Initial diagnosis, processing time, new baby, surgery. There’s no getting around that. Babies aren’t meant to lose part of themselves. Moms and dads aren’t suppose to make these decisions. Babies aren’t meant to be in hospitals, surrounded with beeps and tubes, white coats and medication. Many people told me yesterday how great I was doing, how strong I was and it was almost irritating. This was survival. DSC00796Choosing medical intervention so we could help Cade achieve his normal was so far from my heart’s desire. So far from anything I had ever hoped for for my future child. No, I had dreamed about cute clothes, nurseries, pushing a stroller through town. This is survival. And there’s no right way to do that but my husband assures me there are certainly wrong ways to do it.

Yesterday we arrived at 6 am. We checked in and waited, the ultimate description of Cade’s surgery day. We waited for the medical team, waited for surgery to be over, waited for the opportunity to see him in the PACU, waited for a room…waited. And all of it was hard. But there were so many blessings that came with that wait. Having my mom and dad wait with us which was never a guarantee and not taken for granted, having prayer warriors around the world thinking about Cade. Having our pastor present when Cade was taken away from me. DSC00791The opportunity to have Matt carry him into the OR and hold him while he drifted away for a bit. Having our friends wait with us, entertain us, ultimately distract us from allowing your mind to go there. Having the courage to wait even longer for the possibility of a private room and because we chose that path, having the same nurse who took care of Cade when he was 3 weeks old, a familiar face in the midst of it all. Getting sleep. Having a baby that didn’t get sick from all the pain meds and was ever so brave with all the pricks and pokes. It’s remarkable. It’s God.DSC00804

How do you process all of this? I would have never chosen it. NEVER chosen this hard road but I would have missed so much joy. My dear friend Kara spoke of this yesterday and I so related. How we often chose the easy road. As Americans. As humans we make decisions daily that reflect our desire for the easy rather than the transforming. DSC00836  DSC00856

We get mad when our journey is hard. Like we have control. And this is teaching me we have so little. You do not get to say whether your child will be well, born with ten fingers and ten toes, so they say. You do not get to say that you will get that job you want or the house. You do not get to pick your story because so much of our story is just a reaction to all that is happening to us. And we question. We can chose to shake our fist at the heavens screaming, “you can’t be real because I call this unfair.” We can chose to say, “I accept this and choose to see blessings through the haze.” We chose our response to the life that is happening to us.DSC00877

Pastor Jay read us portions of Psalm 73 as we waited for Cade to be taken away.

“Does God realize what is going on?” they ask. “Is the Most High aware of what is happening? Look at these arrogant people–enjoying a life of ease while their riches multiply. Was it for nothing that I kept myself pure and kept myself from doing wrong? All I get is trouble all day long; every morning brings me pain. If I had really spoken this way I would have been a traitor to your people. So I tried to understand why the wicked prosper. But what a difficult task it is…Then I realized how bitter I had become, how pained I had been by all I had seen. I was so foolish and arrogant–I must have seemed like a senseless animal to you YET I still belong to you; you are holding my right hand. You will keep on guiding me with your counsel, leading me to a glorious destiny. Whom have I in heaven but you? I desire you more than anything on earth. My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever.

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DSC00909Be careful how you choose to respond to the life you find your self living. Be purposeful about counting your blessings. Realizing that you have so much. Choosing to keep moving, keep breathing. Focus your eyes on heaven because my friends, this story that is happening to us is temporal. It will end. Life is short. DSC00959See the DSC00918possibility when others see disability. And do it all in love because the lovely is all around. When your baby has big, thick casts on, see the big happy dinosaurs that grace them. When winter brings snow and we grumble, look closely, purposely choosing to see the intricate uniqueness of each and every snowflake. Turn your gaze heavenward. Do not be bitter by all you see, the politics, the pain. Gaze heavenward when it’s hard. I speak this to my soul as we wait for instructions from the hospital that took Cade’s little foot away. From the place that gave him the hope of a future normal. We choose to see the possibility not the disability and we choose to see God in it all.DSC00972

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14 comments

  • Stephanie

    So beautifully written Jackie!! Your witness is absolutely spot on! We’ve been praying for you guys and will continue praying…God is absolutely in control and I’m sure He is very pleased in your positivity in the hardest of times and your reflection of Him as you take one step at a time. Thank you for sharing. Your family is truly a witness to God’s presence in your life! May you continue to cling to Him for comfort. Hope little Cade is feeling well and confortable. Blessings on you all!
    ~Stephanie Blattenberger

  • Kara Stokes

    The greates of all is Love.
    I’m so blessed to be allowed to share in this journey with you Matt and Cade. Warriors- that is all three of you. Love you guys.

  • Joni Jackson

    I am speechless but my heart is full. Your, my sweet girl are the teacher and I the willing student. It is my pleasure to sit and read and learn from the dearerst young ladies I have ever known. Bless you, bless you, bless you….

    Love you, love ALL of you!

  • Pam Lusby

    I praise God for people like you – that unresonding proof of God’s promises. I read your blog, feel your pain, feel your joy, feel your gratitude. You speak volumes to the rest of us. Thank you so much for sharing your thoughts. I will continue to pray for little Cade and his precious parents.

  • Frank Y. Jackson

    Jackie and Matt – I was truly blessed to read the story about Cade’s surgery. It brought tears to this old man’s eyes. You are remarkable parents and God has given you a wonderful gift in your beautiful son. You are constantly in my thoughts and prayers and Joni and I look forward to seeing you in person. Love, Frank

  • Traci

    What a brave family, and your faith STONG. You are all a blessing and encouragement to each one of us that know you.

  • Patti Reiser

    Jackie

    This is so beautifully written. Your journey…… looking at the good. Instead of any negatives…… You, Matt and Cade are a real inspiration and an example for all of us to follow.

    Patti

  • Autumn

    What a beautiful piece, Jackie. I am in tears. What a wonderful perspective and description of faith, hope, and love in the midst of trying circumstances. Thank you for sharing your life, voice, and wisdom that benefits us all. Cade is handsome, strong, and a joy to everyone he meets! What a gift he is – and what a blessing his story is to so many. We love you, sweet Cade and parents!

  • Aimee

    A wonderfully written post. Cade is an incredible and happy little man and you are the perfect parents for him.

    We had a hospital experience where our oldest was put into a medically induced coma for a few days due to croup, and that was after we watched him be resucitated when he coded in the trauma room. So, I understand what you’re saying about strength vs. survival, but I can tell you survival builds strength. Also, much of parenthood is survival, as no one really knows what they are doing. To our children, we are pillars of strength, safety and comfort, even when we break down and don’t know if we can handle it any longer.

    Sending love, strength, comfort and endurance your way!

  • Nelda Shearer

    Hi Jackie, Matt and Cade, oh how my heart is full of good pride for how mature you are as parents in your jornery of life.
    You truly are front line warriors and Cade will one day experience all the love you have given to him especially at this
    time in his life. Love is a powerful emotion that God has instilled in His children with the hope that we will do great things with His love. You are currently giving forth with His love. . I’ve known Matt longer and I knew from the start that he was a straight arrow so full of God’s love. God’s love is worn well by him. You both were so hand pickedf by
    God for little Cade. He had confidence in you both right from the start to love that little guy with unconditional love. When times get rough remember our Lord will carry you. Jackie thanks for sharing your heart it was beautiful. I want to be able to hear of Cade’s life on a regular bases. Many heartfelt prayers and hugs, Nelda Shearer

  • Mark Ford

    God’s Story, Your Song! And an incredibly Powerful song it is! From Great Trials to Triumph! Our God is an Awesome God!

  • Tammie Robbs

    I can’t tell you how much it warms my heart and soul to read this post. Another mother and women of God trusting even though it hurts and is tough.

    My daughter has fibular hemimelia in her right leg and has her surgery on the 20th November (next week). Reading your post has really helped me stay strong and trust God and to be thankful of all the wonderful people in our lives that love us and are supporting us.

    Thank you x

  • Rodney and Jennifer Rinard

    We are praying for you now. As we will find ourselves in the same place in Feb 2015 with our son. (bi-lateral FH) We are at peace knowing that our children are first God’s which he has entrusted to us to raise in his will. Thank you for sharing.

    R/J

  • Chris

    Your story brought back so many feelings for me. We went through an amputation with our 3 year last year. My daughter was born with FH in her left leg, but they could not diagnose it for 3 years. The doctors thought it was clubbed foot because she had all of her toes. She had a 2 inch height discrepancy and all of her foot and ankle bones were fused together. She walked flat footed on her good leg and on her tip toes on her left. She walked into the hospital on her own two legs. As a parent you never think that you will have to make these types of decisions. Some of us do. As you stated that many people kept telling us how brave and strong we were and how everything was going to be ok. I got tired of hearing that. The hardest thing I have ever done in my life was hand my daughter over to the surgeon. The waiting game was also difficult with many questions at each step. Will the leg fit, will it help, did I do the right thing? This is what I know, 1 year later and I cannot keep up with my daughter, she is amazing and her “new leg” has made a tremendous difference. She still asks when Jesus will give her toes back. Cade will do great, God is watching over for you and him continuously. Bless your family.

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