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.

Tuesday, April 18, 2006

Why? Or Who? Part 2

continued quote from yesterday's post...

The Sovereignty of God became a strong pillar in the foundation of my faith. Even though things did not improve for a very long time, I clung to this passage: "And we konw that God works all things together for the good for those who love God, to those who are called according to His purposes" (Rom 8:28). God is in charge of all things. He is fully in control. He is not subject to random quirks in the system, nor is He at the mercy of Satan.

Nothing comes to us except first through the hands of our loving heavenly Father. Our child was not God's accident, or mistake, or my personal lapse in prenatal care. God has purposes we don't know about. He knows the end from the beginning. Just knowing that He does have a bigger purpose in everything that happens in my life, and that it is for good purpose, is a great relief. That is why the first three words of Romans 8:28, "And we know," are so important. If we didn't know, we would be relegated to consider our "bad luck" and spend the rest of our lives trying to "get over", or oppose this "bitter fate." Instead, I can see my child as a special gift from God, not a burden or a punishment. And when times get tough, He tells me:
"Come unto Me, all who are weary and heavy laden, and I will give you rest, Take My yoke upon you, and learn from Me, for I am gentle and humble in heart; and you shall find rest for your souls. For My yoke is easy and My load is light" (Matt. 11:28-30)

God has ALL things in His hands: he knows all about your child and his needs.
"My frame was not hidden from Thee, when I was made in secret, and skillfully wrought in the depths of the earth. Thine eyes have seen my unformed substance; and in Thy book there were all written, the days that were ordained for me when as yet there was not one of them (Psalm 139:15, 16)

God aslo knows all about you, your needs and your suffering. Your child comes to you from God with His grace. Like the Israelites in the wilderness, you have the opportunity to gather just enough daily, and no more. We have a tremendous opportunity to know His faithfulness and goodness as well as our own need and deep dependence on Him. As parents, it is our privilege to go to Him often.
"For we do not have a high priest who cannot sympathize with our weaknesses, but one who has been tempted in all things as we are, yet without sin. Let us therefore draw near with confidence to the throne of grace, that we may receive mercy and may find grace to help in time of need (Heb. 4:15, 16).

God would not give you this child to ruin your life and the lives of every member of your family, for it is God who has promised "to work all things for good."

Monday, April 17, 2006

Why? or Who?

Several weeks after returning home from the hospital with Judah and Tucker and in the midst of processing through the ramifications of Judah's diagnosis of Sturge-Weber Syndrome, my husband directed me to an article in The Journal of Biblical Counseling, put out by the Christian Counseling & Educational Foundation, entitled, "God at Work in a 'Special Needs' Family" by Miltinnie Yih. I read this article over several times and found great hope and even vision for the lot God had assigned to us. Here is a portion with some length that I found especially challenging but deeply encouraging as well:

As I wrestled with the "Why's" of David's autism, it dawned on me that this was the wrong line of thinking. Why do I want God to tell me why? Would reasons really satisfy me or would they simply put me in a position to judge God instead? Could I really understand the workings of God? Though Job asked, "Why?" God only answered by asking, "Who?"

Who is this that darkens counsel by words without knowledge? Now gird up your loins like a man, and I will ask you, and you instruct Me! Where were you when I laid the foundation of the earth! Tell Me, if you have understanding, who set its measurements, since you know? Or who stretched the line on it? On what were its bases sunk? Or who laid its cornerstone, when the morning stars sang together, and all the sons of God shouted for joy? (Job 38:2-7)

While on earth, we may not know the "Why" for difficult situations. But we can know the "Who" of it. Who is in charge? God is in charge! "I know whom I have believed and I am convinced that He is able to guard what I've entrusted unto Him against that day" (II Tim. 1:12). Asking "Why?" will not give us the right perspective, only asking "Who?" will.

I want to continue the rest of this portion from the article tomorrow.
I am dedicating these posts on "Getting through Grief" to Alivia Haughery and all her family, who are walking through an unimaginably difficult time as they wait for over a week now for a clear diagnosis for their 1 year old daughter. Please continue to pray for Alivia and her family. You can check out the blog Alivia's mom keeps for her by simply clicking on her name highlighted above.

Monday, April 10, 2006

Getting Through Grief

Just two days ago, I received a phone call from a dear friend of mine, Emily. The message left on our machine went something like this:
"We found out this morning that Alivia has leukemia, and we are heading to Hershey Medical Center this afternoon. Could you be praying for us and asking others to pray?"

Alivia is Emily and James's first baby, and conceived after many months of trying, waiting and then intervening with some medical help. She had her 1st birthday on March 29th. She is the first grandbaby for both sides of their family, and she is a doll baby. She is petite and precious. She is a gift from God, and all who know her, love her. She has brought much joy to many people's lives.

Would you please pray for Alivia, for her parents, James and Emily, for her grandparents, Dave and Gretchen, Bill and Cynthia? Here is a link to a blog Emily started a while ago just for fun. She is now using it to keep those who care informed as to Alivia's most recent developments with the leukemia. http://aliviarachelhaughery32005.blogspot.com/.

Emily called me twice on Saturday, the second time to reach me directly. She asked if I would write down some verses and/or quotes that helped and continues to help me with the lot God's given us through Judah's SWS. So, privileged to comfort my friend with the comfort I've been given, I am going to do just that. And, I decided I would like to post bits of what I share with her here on Judah's blog. It is only fitting that those who so faithfully pray for us and have cared for us see how the Lord is multiplying the good seed you planted in our lives, thirty, sixty or one hundred fold.

One of the first scriptures that became very dear to me during those first days and weeks with Judah and Tucker was Isaiah 41:10,

...fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you,
I will help you,
I will uphold you with my righteous right hand.

I will end by saying that God strengthens me, helps me and upholds me and our family in great measure through your prayers. It is undoubtedly true. Would you be apart of stengthening, helping and upholding Emily, James and baby Alivia today by saying a prayer on their behalf?

Monday, April 03, 2006

Laser Treatment this Week

I missed a post last Monday because the boys and I made a special trip to Indiana, PA, to stay with my brother, sister in law and two nieces. Lawrence was in New Orleans on business, and we both felt it would be a good time for me to go to Indiana for a visit.

Traveling 4+ hours alone with the boys proved to be more difficult than I had envisioned. Let's just say "inconspicuous" would be the last word anyone would use to describe the three of us out in public. Mostly, God gave me grace through a spirit of humor, and I was able to just laugh at the hilarity of what I was trying to accomplish by taking the boys out to dinner on the road, using the bathroom twice and stopping to grab a drink while we filled up our gas tank. I'm sure we were quite an amusing sight for all the weary travelers on the road with us. :)

Nevertheless, we made it out to Indiana and back home all in one piece. And, while caring for the boys out of their element proved to be much more difficult than I anticipated, our trip to visit friends and family afforded several opportunities to catch up with old friends and make memories with the boys' cousins, Mia and Ainsley. We were cared for with excellence by my sister in law, Krista, as well. She is tireless in her heart to serve others. Thanks.

This week, Judah is scheduled for a laser treatment on his upper arm, trunk, back, neck and ear. Judah has a pesky patch of excema on his back that refuses to clear up. As a result, he either blisters fiercely there or Dr. Cohen just doesn't laser that patch at all.

Please pray that:
  • the patch of excema will heal before Judah's laser treatment on Friday.
  • I will find someone to help me apply the numbing cream and keep Tucker.
  • Judah will be able to rest some before his treatment as the appointment is scheduled for the middle of his naptime.
  • we will not have to wait long for his treatment once we arrive for our appointment.
  • strength for me to continue subjecting Judah to these treatments which are very traumatic but necessary.
  • the treatment will be painless and effective.
  • we will continue to find favor with Dr. Cohen and his new nurse, George.
  • as always that God will give us all grace as we seek to care for and shepherd our sons through these circumstances.

Thanks so much for keeping us in your prayers!