It’s Saturday night and our home is feeling empty without Calvin and his calls and squeals. Tomorrow will mark one week of ICU–thank you for praying us through the week.
We’ve had to pray hard about whether to take Calvin off the vent and pursue palliative care or to prolong his life by supporting his airway with a tracheotomy. It may seem like an obvious decision but it’s not, we have agonized and cried hard over it. Calvin has a tracheotomy scheduled for Tuesday afternoon. We were so hoping that we could take him off the vent and have even just a few hours to hear his voice one last time. But it’s not to be and we’re all having a hard time with that. It’s been over a week that I’ve heard him and it feels like a huge part of our relationship is missing with it.
Calvin has no purposeful movement and everything in his life is based on his vocalizations. It’s how he lets us know if he’s in pain, needing an extra hug, and is the basis of our interaction with him. Because of many technical issues it does not seem likely that he will be able to make sounds with the type of trach he will need. His voice has gotten me through many hard days, delighted his siblings, and has been indelibly marked on each of our hearts. I feel like a part of him is dying with the loss of this vital part of his life and it hurts more than I would’ve imagined. What a comfort to know Jesus enters this sorrow with us.
O Thou, in Whose presence my soul takes delight
On Whom in affliction I call
My comfort by day, and my song in the night,
My hope, my salvation, my all.
Where dost thou, dear Shepherd.
Resort with thy sheep,
To feed them in pastures of love?
Say, why in the valley of death should I weep,
Or alone in this wilderness rove?
Oh why should I wander, an alien from Thee,
Or cry in the desert for bread?
Thy foes will rejoice when my sorrows they see,
And smile at the tears I have shed.
He looks, and ten thousands of angels rejoice,
And myriads wait for His word;
He speaks and eternity, filled with His voice,
Re-echoes the praise of the Lord.
Dear Shepherd, I hear and will follow Thy call,
I know the sweet sound of Thy voice.
Restore and defend me, for Thou art my all,
And in Thee I will ever rejoice.
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Kara, my heart aches for you!!!! Praying for peace with your decision. And praying for strength for you as you continue this difficult road God has given you!! “Little one in the storm God cares for you!!!” God cares for Calvin even though this storm.
Wish I could meet you in person and give you a hug!!
Greta
God bless the hands of the doctors tomorrow for the surgery that all may go well. We pray that Calvin will ‘find’ a new way of communicating with you all. Blessings, Ruth
My heart breaks for you! We had to walk a similiar road with our Gavin. We were in the process of making this same decision…..but in the end, Gavin was able to come off the vent and was put on several nebulizer treatments per day, which made a huge difference with his airway issues. I remember feeling so consumed by this decision and the prospects that came with it. I’m so sorry that you are having to walk this uncertain road with Calvin!
Your family is, and will continue to be, in our prayers. May God give you peace, strength, grace, and hope……today and always. May His word give you comfort…knowing that His plans are not our own. May He give you peace, that only He can provide.
“And we know that all things work together for good to those who love God, to those who are the called according to His purpose.” Romans 8:28
It is my prayer that God will continue to uphold you and Daryl through the difficult decision you had to make for Calvin.Even though he may never vocalize to you again you will always hear his sweet voice in your ears as you care for him and love him. May God Bless and strengthen you and your children during these difficult days.
The heart aches and sorrows. Words seem trite. The Psalms cry the agony of our souls and bring us to our Great Shepherd, the Man of Sorrows who is Faithful, Loves Steadfastly, is our Rock, Refuge, and Deliverer.
I’m sorry I do not know which # Psalter this is:
“Great Shepherd, who leadest Thy people in love,
’Mid cherubim dwelling, shine Thou from above;
In might come and save us, Thy people restore,
And we shall be saved when Thy face shines once more.
O haste, Lord, to hear us and pity our woes,
Afflictions our portion, despised by our foes;
O Lord God Almighty, in mercy restore,
And we shall be saved when Thy face shines once more.”
You are continually in our prayers,
Rachel
I’m praying for you and your family.
Kara, I’ve been reading along on your blog for quite some time now, but have never posted. Tonight, I have tears streaming down my face and just felt the need to post. I cannot imagine agonizing over the decision you had to make. I pray you will be at peace with your decision and that God’s plan will be made clear. Having a special needs child is nothing we ever imagine when we picture ourselves getting married and having kids. I too face putting a 3 year old on the bus later this year and sending him off to school. Thank you for leading the way and letting your true emotions, struggles, and reminders to focus on God. Praying for Calvin and your family.
I came across your website about 6 months ago. My 3rd child is deaf due to CMV a virus that can be fatal in-utero. I have met and seen other CMV children and have been reminded several times of what “could have been” for Ezekiel. I just wanted to let you know that I am praying for you and your family. We too have 4 young children, 2 boys and 2 girls. Your posts are always a rebuke and encouragement. They are also a reminder to pray! May God give you strength, comfort and courage during this difficult time!
Nicole
Sometimes it’s hard to comment on things like these. Words typed on a screen rarely show the emotion behind them. I just want you to know that there is never an “obvious” choice when you are faced with that decision. You are an amazingly strong woman and your faith is tremendously encouraging to me. I am praying for your family. For strength and endurance for little Calvin, for understanding hearts and patience for your other children, for wisdom and peace for you and your husband. I am praying for peace for your entire family. I “say” these things with Christian love and earnestness.
oh, what a tough time for you! We have watched other families struggle with this horrible time! One family removed the vent, and their child has lived, gone to highschool, college etc. God will give you guidance one step at a time. We are praying for you, and grieve with you, even though no one but you and God know the depth of your grief…with Christian love, Bev