In a book we received from the Sturge Weber Foundation shortly after Judah was born they define something called "chronic sorrow":
In chronic sorrow, parents experience swings in emotion that are characterized by periodic recurrences of pain and sadness, which are precipitated when they are forced to recognize that their child is abnormal. The parents are then able to put their grief aside only with the help of denial and the turning of their attention to the day-to-day business of taking care of the child. The pain subsides until the next episode of realization is forced upon them by some seemingly trivial daily occurrence, such as seeing a normal child of similar age playing the in the park.
We weren't at the park but the dentist office this morning when one of those swings of emotion hit me once again. The truth that, apart from miraculous healing, Judah will always have some health concern we are investigating or treating continues to try to forge its way into my acceptance.
I don't necessarily see it as accepting my son as "abnormal" but rather accepting the lot God has given to him and to us as good and pleasing in His sight. It's an acceptance that Judah's life, because it was established by God and his SWS ordained by God as well, could not be any better than what it is. It's an acceptance of God's Sovereign will that is attached to my and Judah's good and therefore means that Judah didn't get a "raw deal" but is experiencing God's kindness and mercy even in and through his SWS.
I can't begin to tell you how much this confronts a cultural mindset and worldview I've so readily embraced that tells me Judah is missing out on life, that we're missing out on life and that things would be better if we just didn't have to deal with SWS.
I haven't gotten much done today in one sense. Laundry has gone unattended, our bed sloppily made, the kitchen floor unmopped and living room floor un-vacuumed with guests coming tonight. Instead, I've spent most of the day and my energy in this mental, spiritual and emotional process of acceptance, and even moreso, a process of renewing my mind. I don't think I've slipped into self-pity; although I am prone to it and constantly need to be on guard that it does not get its grip on me. It's more like "re-programming" my mind and my heart to respond to our circumstances in a way that reflects God's truth about who He is, who we are, what He promises in His Word as well as requires from us, and what our lives are all about.
Here are a few scriptures to help me in this process:
And we know that for those who love God all things work together for good, for those who are called according to his purpose.
As for God, His way is perfect...
Oh, the depths of the riches of the wisdom and knowledge of God! How unsearchable his judgments, and his paths beyond tracing out! Who has known the mind of the Lord? Or who has been His counselor? Who has ever given to God, that God should repay him? For from Him and through Him and to Him are all things. To Him be glory forever! Amen.
(*thanks, Beth, for reminding me of this one this week!)
One that I have been most impressed with lately comes from II Corinthians 4:17, 18
For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.
What we have endured and will endure because of Judah's SWS will not be worth comparing to the glory of God shone in and through us on the other side of this 'short' life. I accept that by faith for, "...faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1
So, I am given another opportunity to do something more glorious than grieve that my child is "abnormal" and that our lives are hard. I am given the opportunity to by faith have my mind renewed by God's truth and His Spirit and to grow more certain of His goodness and His perfect plan for my son and for my family.
Please continue to pray for us in this struggle. Trying to embrace God's way of thinking through and emotionally responding to trial is hard. I have cried a number of times today. I have had to check my emotions again and again to see if they line up with God's Word. It is not easy. I want to give into self-pity, anger, confusion and despair often. Many times, I do. But, I know that is not God's desire for us in this. I know He wants us to walk in joy, peace and confidence of His goodness no matter what may come.