Travis and I were laughing today as he said “you are turning into me” in reference to his tendency to be upset but not know why. Last night that’s exactly where I was. I’m usually very on track with my thoughts and emotions, able to precisely vocalize exactly what I am feeling and why. Not last night. I started blaming Travis for a bunch of very minor, menial things that made absolutely no sense and had nothing to do with anything. Then as we laid in the darkness of the safe haven of our room, my tears streamed fresh and warm down my cheeks, soaking my pillow and Travis’s loving arm. I’ve been so good at keeping my nurse hat on, dealing very matter of factly with the choice we made to put Ryan on palliative care. I so quickly and easily convince myself that I am strong, am confident in my decisions and know exactly what and why I am making a choice. Yet at the same time, my ever-increasing ability to hide my feelings, fears and fragility collides harshly with the stoic demeanor I so easily and quickly grasp. I tend to call it self-preservation but deep in my soul I know its real name is fear. And that fear can so easily and quickly overcome my heart and mind. Last night I needed to grieve. And today my heart is still grieving. And tomorrow and for days to come I will continue to grieve because I have come to the end of my strength, the facade of strength that I easily throw on. Deep down I am not strong. I am human. And in that humanness I am tender, fragile and very simply stated, a mom who loves my children with an unexplainable emotion that I will never be able to express with words. And that love for my Ryan has a twist, a layer, a chord that is even stronger and deeper than my heart and mind can wrap around.
When I signed up for this parent thing I never imagined one day I would sit here saying the end of our fight has come. I didn’t think I would tell a medical professional to stop trying to fix my child. I didn’t comprehend the loss of life saving, medical advancing options. Yet here we are. We’ve made the decision out of love for our child. Out of hope for his eternal perfection. Out of peace for everyone in our home. Out of the opportunity to continue to love and spoil and dote on our perfectly broken boy. But man is it hard. My heart aches for normalcy and freedom from medication, therapy, special education, braces, medical devices and tubes and labels. Yet in the same breath I can say I would never change a single thing about my Ryan because he has captured this world exactly as God intended him to do. His mark is felt by so many. His legacy will be full of redemption and overflowing disbelief for how strongly he has faced every day. His body will fail him but his soul will live on. It’s that eternal perspective that gets me through every day, every hardship, every worry, every tear and every difficult decision. It’s the very core of my being, the very core of my husband and my children’s beings. It’s what drives us to love and cherish every single day. So on these days when I feel so overcome with emotion, when my heart feels broken, shattered and frail, I remember verses like Psalm 91:4 that says:
He will cover us with his feathers and under his wings will we take refuge; his faithfulness will be our shield and rampart.
It’s such a beautiful picture, and I focus on it so very much. Every day I remind myself that this world is temporary and only a the blink of an eye in comparison to our time in eternity with our Heavenly Father. I can’t wait to get there. I can’t wait to see my sweet boy running and jumping and laughing and free. I can’t wait to hear him say “I love you, mommy” and be able to count to a hundred. To hear him spell words like apple and cushion and freedom. I can’t wait to see him free from scars and seizures and feeding tubes and braces and weakness. And I really can’t wait to watch him play football with his siblings and daddy. God’s plan is so perfect and while I have the wonderful hope of a glorious eternity with those I love, my heart still feels the searing pain and sadness of today. I have no idea what any of our tomorrows will look like. I never imagined any of the tomorrows of my past would look like they have. But no matter what each day held in those days, no matter what each day holds in the tomorrows to come, my heart overflows with thankfulness that my job is not to worry about those days but instead to hold fast to the truth that centers and steadies the very core of my being. And that is simply this – God is good all the time. Through heartache and blessing and pain and laughter and success and failure and disappointment and beauty. He is good. He is faithful. He is loving. He is truth. So with those thoughts parallel to the hurt that fills my heart and mind, I am able to boldly and cheerfully proclaim I Thessalonians 5:16-18:
I will be joyful always, I will pray continually, I will give thanks in ALL circumstances because this is God’s will for me in Christ Jesus.
10 thoughts on “my tender, fragile heart”
Sweet, precious Kim,
Your tryst in The Lord encourages my soul.
I love you dearly.
Our souls ache for you, Kim & Travis, as you ache for you dear, sweet son. What an encouragement you are to so many as you have shown the Lord’s strength during these past years. Thank you for your sharing of ALL of you thoughts…the blessings as well as how difficult it has been for you. The Lord is definitely your strength and peace. Blessings to you throughout the days ahead….
Lots of tears for you, for us! This is exactly what I needed to hear today. Thank you. We love you.
Kara put a link up and here I am…crying but praising God with you. God is good all the time…when life is hard even more so. To realize that it is his perfect plan, all of it, is because of his love and grace. For 36 years, God has been leading me, holding me, loving me as I take care of my brain damaged husband (car accident) through days of strength (His) and weakness (mine). He is good and guess what, heaven is indeed coming….until then I look for God’s glory and I too smell the roses. Enjoy your vacation, I’m going to Jamaica. 🙂
Thank you! Praying for strength for you as well. Your encouragement warms my soul.
Thanks for honestly opening your heart ~ & for trusting, in spite of the hurts of your mother-heart ! Reminds me of the Psalms which often pour out honest feelings of despair, but then go on to say, “But I’ll trust the Lord anyway !” Praying for you.
As the song says, “We can only imagine”…..what your heart is feeling, what your days are like, and what Ryan and the rest of us will experience when we are in Heaven with our Lord. May He bless you and your family with strength, with peace, and His grace.
I finally got the site , the last read. Been having trouble with my eyes and hard to read things in books and on the computer. Find our Friday I have film over both eyes. I had catarate surgery over a year ago and this happen I guess to some people. I go in the 18th to have it laser off in Lincoln. Just telling you why I am late getting on here.
Love how you share what all is going on with your family and truly understand the last one you put on. The tears were good for you to wept. It is only through God can we make each day through. My neice and I do not know if she is srtill alive had 150 seizures daily. My sister died and left her in the care of her younger son and he move away out of the state of OR and took her and never heard again from them. She was 26 or 27 years old then.
I had sieizes years ago and i was 20 at the time and did not know what was happening to me until my husband see me have one. Yes it is scary indeed. Pray for Ryan and he is speacial in God’s eyes and many others.
Oh yes it was Ps 91. not Proverbs that scrpture was in that helps you so much. I pray in that whole Ps. daily for myself , family and service people and any one else on my prayer list. Love the one in 1 Thess. also you wrote down as I pray it in also. Have 20 pages I claim in each day for ones on my prayer list.
Keeping you in prayers and God Bless.
Love & prayers,
Thank you for correcting me! I knew it was Psalm and didn’t even realize I wrote Proverbs. Will fix that. Blessings to you; i am praying for your eyesight. You have been such a faithful prayer warrior and you are a blessing to our family!
Beautiful post, Kim. I am in awe and rejoice with you in God’s amazing promises. Keep clinging girlfriend!