Tuesday, April 25, 2006

God of Promises Not Statistics

After the boys were first born, Lawrence and I were faced with many uncertainties regarding Judah's future. We had a diagnosis of Sturge-Weber Syndrome and a little bit of knowledge about what this might mean for Judah's future as well as our own. Words like "seizures", "stokes", "mental retardation" were thrown out at us. The Discovery Channel ran a special on a Extreme Surgery that detailed the journey of Geoff Ritchie, a young man whose facial Port Wine Stain had grown and blebbed to unusual enormity, causing not only what most would consider severe disfigurement of his face but also functional problems as well. We learned about a related syndrome, Klippel Trenaunay which effects ones limbs, causing the affected one to grow longer or bigger than the unaffected one as well as causing potential circulatory issues.

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.


Danielle said...

Thank you for your example, Briana, as you weather this "storm." Your post today served to comfort me with God's promises! I'll be praying for you and that God would continue to hold your heart anchored to His promises, and little Judah will grow up doing the same.

Beth said...
This comment has been removed by a blog administrator.
Briana Almengor said...

Thanks girls for reading such a LONG post. I really didn't expect anyone to get through the entire thing. But, I needed to write it for myself more than anyone else. I so appreciate your prayers and thoughtful words.

You are right about monitoring my intake of the scientific material. That is one of those balance acts that I do turn to the Lord for wisdom all the time. My hubby helps me weigh all that out, too. It is a balance of being informed and educated in order to responsibly care for my son at the same time guarding my heart and mind in a practical way by not obsessively intaking information that is only man's wisdom and therefore, God's foolishness.

We had the EEG and neuro. eval today and found out that Judah's glaucoma surgeon left Hopkins: don't know why or where he's gone. On the way home, I prayed that God would sure up my heart once again that He's got a plan and a future for Judah, plans to prosper him and NOT to harm him, as my flesh is tempted to believe that he will now receive less than the best care for his eyes.

GOd is bigger, and I get the opp. to functionally apply that belief today and the next time we have to see the glaucoma surgeon, whoever GOd might decide to provide for Judah.

Today, I'll take this promise:
"Blessed is the man who makes the Lord his trust..." PS. 40:4

Laurie said...

Thank you for writing this post. It is such a blessing to hear how God is meeting you through His Word. It gives everyone who reads fresh faith for any trials we are faced, greater or lesser than yours or Judah's. We love you guys and we are praying for you!

Nicole said...

AMEN! Thank you for sharing such beautiful truths.

Beth said...

I admire your faith, Briana!!!!

peg said...

I'm praying for you all and am blessed and encouraged by your wise words. I love and respect you so much! (Miss you too!)