Tuesday, June 07, 2011

No Resignation Allowed

Sometimes life seems like a wind-up toy swirling faster and out of control. That's when I shout, "Surrender! I QUIT!" But life doesn't care, it doesn't hear me and continues to bombard and intensify leaving my sanity and strength in shreds. 

I know that our God does hear but I want to negotiate with Him. I want to stomp my feet and say, "Enough, is enough!" I don't understand why He allows intense struggles to continually drain us of strength. 

The past week has depleted us in so many ways. This is what's going on. Calvin has been diagnosed with tracheobronchomalacia It means his trachia and bronchioles to his lung are collapsing. This is why we can never let him cry. As soon as he wakes up we literally run to his room. If we wait too long he's blue and gasping for air. If his oxygen gets too low he becomes hypoxic (unresponsive, seizing). If we can keep him comfortable his oxygen saturation levels stay pretty good. Thankfully as he's gotten older it has become easier to keep him comfortable. He is not a candidate for a tracheostomy as he'd have to be on a ventilator then as well.

In addition to his airway issues, he continually has flow coming up from his stomach. Since his swallowing muscles don't work well at all anymore he chokes. The fluid goes into his lungs (aspiration) which damages his lungs and makes it even more difficult for him to breathe. Some days I am suctioning him a good part of the time and constantly trying to keep his airway open and to help him with choking (or should I say not choking?). Other days he does well. We go out for a ride in the car, visit friends, take him on walk, etc. You never know what a day will bring.

Last week he came down with a respiratory virus. On Monday he could not stop vomiting  because he couldn't manage the secretions in his airway. So he'd vomit, choke, turn purple, vomit, choke, turn purple and cough relentlessly. Thankfully we had oxygen delivered to our home so we could keep him at home and try to keep his saturations up. I was feeling very unwell and worried I was getting strep for the 7th time this year. We called for prayer from pastors and friends. We didn't know how much longer we could last in crisis mode.

Today I woke up and didn't feel any worse so I think there's no strep (immensely thankful for that) and Calvin woke up and didn't choke once today. It leaves us scratching our heads and wondering if he was the same child. At any rate we are relieved he's out of the woods today and breathing comfortably on his own. It seems so many of our prayers have not been answered the way we asked that it takes us off guard when they are answered! Lord forgive our weak faith. 

There are times I think about which families I could ask to take in my other kids. I feel like I am mothering with my hands and feet tied. I am tired of the constant exhaustion and always living in a state of crisis.

I don't really even mean this in a way of complaint. It just puzzles me, how do we go on? How does the Lord want us to respond in this? How will Darryl ever be able to work with this going on at home? How do I function as a mother to our other three children? Let alone bring them up in the fear of the Lord? My heart feels heavy with these things. I want Calvin to stay with us. His loss would be as great as the loss of any of our other children. But this living in the constant shadow of death drains us. 

I feel an urgency in my soul to put on the full armor of God. We are weak physically and emotionally. More than ever we need to have the sword of the Spirit in our hands. His Word alone is what sustains us. Not my reasoning or intellect or perspective. They get lost in the fight. The Bible is what speaks to us while the arrows are shooting and when we feel like we are falling off the edge. It grips us. It pulls us back up. Jesus stands nearby telling us He is the life, the way, the truth. So we keep our eyes on him. We run towards him in desperation.

I don't understand this black night. I don't understand why the Lord doesn't give us a little more heaven in this fallen world. But I know that we need Him fiercely. I know that His ways are above our ways. I just pray He gives us strength. Our heart is willing but our flesh is so weak. Can you imagine heaven? I long to be in the presence of the Saviour where my weak faith will be replaced by wonder and surety in Him. 


Helena DH said...

My thoughts and prayers are with you and your family! His strength is perfect when our strength is completely gone!

Vedra Family said...

Hey Kara, I just wanted to let you know you are not alone. This journey is so so difficult and I worry about how to balance everything all the time. But God is faithful and He is somehow doing this all for our salvation. Hugs and prayers, Emily Vedra.

KarenKTeachCamb said...

Hugs to all of you Kara! I'm so glad you continue to know God's hand is there holding you up, and that you continue to seek His strength. I pray that He gives you the strength you need, and that He provides the respite you also need from Calvin's constant care. I wish I could help with it, but know that God will provide others who can. Miss you all so much. Love to Sophie, Evie, and Noah! And a big hug for Darryl as well. Love you all.

Greta and Gary said...

Thinking of you & praying for you!! I don't know you but I found this blog through a friend. We have a son with a lot of medical problems as well so I know a bit of what you're going through. As for the aspiration- is your son g-tube fed? Because then I would suggest going to a j-tube which goes straight into the small intestine. Then he wouldn't be able to aspirate. Hope you get some much needed rest.
{Hugs} A Fellow Mom

Anonymous said...

I recently came across this comment in a book I am reading -'The prayer of Jehoshaphat is so right - "We do not know what to do, but our eyes are upon you" (2 Chronicles 20:12)' Sometimes all you can do is keep your eyes on God. May He be your strength!
Katie B.

Rachel Amariah said...

oh Kara, my heart hurts with you. It is so hard to watch our children suffer!! I really liked this post - and I'm not sure if I can say that, it feels strange to say this when I'm sure these words spilled out from a pained heart. But I believe that God will honor your trust in him. I was thinking of you as I wrote our post this morning. Some of your words reminded me of the line "Love is not a victory march. It's a cold and it's a broken halleluiah."

Another song that has been meaningful to me lately is Andrew Peterson's "Love is a good thing." Do you know it? I prayed for your family a few days ago as I listened to it. I prayed that on those days when love 'takes a little too much' that God would give you strength in abundance.
You are loved!