Early on we also found a group of folks who quickly became like a second family, all either having Sturge Weber themselves or having a family member with SWS. We were directed to a foundation that was established for the support of SWS/PWS/KT patients and families as well as further research on these syndromes known as the Sturge Weber Foundation. Through the on line forum and the SWS Foundation's publication, Branching Out, we would read stories of others experiencing such unique manifestations of the same diagnosis.
The combination of all these things often tempted me to reason and fear. I would gather statistics from our doctors and wonder if Judah would break the odds. I would look for all the pictures I could on line and elsewhere of people with Port Wine Stains trying to convince myself that my son wouldn't end up "disfigured" like the man I watched on the Discovery Channel. I would celebrate every milestone Judah would hit while the temptation to fear he wouldn't hit the next one would be crouching at my heart's door.
In a persistent and ongoing manner, the temptation to reason using man's knowledge of SWS and/or fear for our future seeks to overcome me. Thankfully, God has mercifully given me respites from that fight, but it is usually not long before I'm battling again in the war to trust God and His promises rather than statistics and man's wisdom.
My friend, Emily's recent news and circumstance with her daughter, Alivia, who doctors are still trying to nail down a diagnosis for, has brought to the surface once again the many fears I am tempted with regarding Judah and his SWS. I am faced once again with the choice to reason or to trust. Simultaneously, the SWS Foundation's issue of Branching Out came in the mail; I read it cover to cover yesterday while waiting at a doctor's office. In it, I read an article about a little girl born in the same month as Judah and Tucker who had her first seizure a couple of weeks before her first birthday. She lost use of one side of her body as a result of her seizures and with the side she has mobility, she has Klippel Trenaunay. And in spite of the anti-convulsant meds. she takes daily, she continues to have seizures on a regular basis. As I'm confronted with these two situations, it's easy for me to thank God that Judah has a diagnosis and that he's past his first birthday, still growing and developing rather normally.
But, then I also read an article in Branching Out entitled, "When There Isn't a Happy Ending", all about the reality that SWS and the effects it has on one's body sometimes leads to death. Another person wrote a biography in which she states her first seizure was at age 2. So, with that knowledge I am tempted to fear again, to wonder if Judah will yet have a seizure or how extensive of an impact Judah's SWS will have on his overall health and lifespan.
At the beginning of his life and even now, I consistently must return to this truth: My God is a God of Promises not Statistics.
- God's Word does not promise me that Judah's sight will be presevered, but it does promise me that His grace will be sufficient for me and for Judah and that His power is made perfect in our weakness. (II Cor. 12:9)
- God's Word does not promise me that Judah will never have a seizure, but it does promise me that God will never leave us or forsake us. (Heb. 13:5)
- God's Word does not promise me that Judah will not be disfigured, but it does promise me that NOTHING can separate us from the love of God. (Rom. 8:39)
- God's Word does not promise me that Judah will continue to develop and grow as other little boys, but it does promise me that the good work He's begun, He will bring to completion. (Phil. 1:6)
- God's Word does not promise me that Judah will live a long life, but it does promise that His goodness and love will follow us all the days of our lives. (Ps. 23:6)
Oh the many and precious promises of God that are all mine to believe and stand firm in as the tempation to fear wages its war in my heart and mind.
When the boys were first born, a friend of the family passed onto the boys many books her kids had outgrown. One of my favorites was a book entitled, "My Promise Rainbow", published by Standard Publishing. It takes the story of Noah and walks the reader through the colors of the rainbow. Each color represents a scary part of the flood account: purple for the storm, blue for the rain, etc. After the particular color of the rainbow is talked about, this phrase follows on every page, "But God remembered Noah, who He gave this special promise to:
'A storm is coming but I'll be with you.
I'll keep you safe. My promise is true.'"
That little poem, written in a children's story book became like an anchor for me for many months. It's typically the material written for children that speaks most profoundly to my simple heart and mind.
Whatever storms you are in or statistics that have been presented to you, my prayer is that you will rest in God's gracious and everlasting promises. And, please continue to pray for us, that we will do the same.
This Wednesday, Judah has a routine EEG and neurological evaluation. Pray that it will go well, that Judah will cooperate for the test and they'll get a good reading from the EEG. Also, there was a finding during Judah's last EUA for his eyes that I need to follow up on with his neurologist and potentially our opthamologist, too. Please pray that God will give me the right questions to ask, the mind to comprehend all his neurologist says, and a peace, knowing all things are in God's hands.