Wednesday, September 20, 2006

Chronic Sorrow

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:

Romans 8:28
And we know that for those who love God all things work together for good, for those who are called according to his purpose.

Psalm 18:30
As for God, His way is perfect...

Romans 11:33-36
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, " 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.

Monday, September 18, 2006


An update on Judah's eyes:

Judah's usual opthamologist, Dr. Abrams, decided it was best for her to examine Judah's eyes to clarify what the glaucoma surgeon saw. I took him for an appointment last Wednesday, and she found no reason for concern. She said his one optic nerve does look 'congested', but that appearance could be a result of the hemangioma being more prominent on that side of his face. Nevertheless, it was good news and I thanked God that we weren't going to be sent into "emergency mode" once again.

Pampered Chef party: Huge Success!

Lawrence and I are so very grateful for the amazing response I had to the Pampered Chef party. There were 22 women in my home Friday night! Several women who weren't able to attend ordered on line or through the catalogue. A handful of you have commented that you are going to place an order this week. And, still others offered simply to make a donation right to the Sturge Weber Foundation. All of that adds up to what Lawrence and I estimate to be a $400-$500 donation to the SWF!! We are so blessed by everyone's generosity and excited about the success of our first initiative toward 'giving back' to an organization that has given so much to us!
**If you still want to place an order with Pampered Chef (you can see instructions on how to do this on line if you scroll down to a post I entitled, 'An Invitation'.) or give a flat donation to the Sturge Weber Foundation, please do so by the end of this week, September 23rd. Thanks!

Allergies, Asthma and A Tired Momma:

Just when I thought I would be able to take a breather, Tucker started with bad allergies and asthma this weekend. Thankfully, we were able to keep him out of the ER and off the oral steroid by giving him nebulizer treatments every 2.5/3 hours on Friday and Saturday. He seems to be doing better with the asthma, but he and Judah both are very congested. I am unable to discern for Judah whether it is allergies or a cold.

So, I find myself once again at God's mercy to know how to care for my little men. Of all the medical issues we have dealt with in the boys, their asthma causes me the greatest amount of stress and anxiety. I was grateful to be reminded by a friend yesterday of this line from a familiar worship song, "Creator, Giver of Grace, Sustainer or Infants and Kings..." I am grateful that it is God who sustains Judah and Tucker's lives, and I'm seeking to put to rest my anxious mind in this truth.

Baby #3

Lilypie Expecting a baby Ticker

Our week wasn't busy enough, so we threw in a sonogram, too! It was great to see the little baby as I occasionally forget that I'm pregnant. It's so different carrying just one; the movement is so much more slight than with the boys who I often felt were having a boxing match inside! All body parts were present and from what the sonographer could tell, looked healthy. The only part he couldn't get a good look at was the one we most wanted to see! His best guess is a girl, but he couldn't be sure given the poor positioning of the baby for determining gender. Unlike with the boys, I will probably not go back for another sonogram. SO, we will have to wait and be surprised! Just like almost anything else in life, Lawrence and I have opposing preferences for the sex of this baby. I would like a girl, and he would like another boy! I guess at least one of us will be pleasantly surprised in another 20 weeks! :) I'm sure we'll both love the little one no matter its gender.

Please continue to pray for:
  • health for me and the baby.
  • freedom from allergies, colds and asthma for the boys.

Feel free to suggest any girl names for us to consider. We think we have the boy's name settled, but the girl's name is still up in the air.

Tuesday, September 12, 2006

EUA Results

Thank you to all who prayed for us yesterday. We arrived at Hopkins by 6 a.m. and amazingly were home by 10:30. Really, for non-hospital goers, this is a 'quick' trip to the hospital, especially considering Judah was put under while there!

Judah did great w/ anesthesia apart from waking up in the middle of the night last night with some choking cough that was making it difficult for him to breathe. I'm not sure what precipitated it, but he usually has irritation in his throat after he's been under anesthesia and especially when he has a cold or has just gotten over a cold, which was the case yesterday. Nevertheless, after two different asthma meds. given through the nebulizer and a half hour of watching him sleep in our bed, Judah was calmed down enough to go back to his bed for the rest of the night. He seems to be doing much better today.

The doctor who performed the EUA yesterday was new to Judah's case. He had never seen Judah prior to yesterday, and there was some confusion as to his findings during his exam. Dr. Jampel, our new glaucoma doctor, saw swelling on Judah's optic nerves. We explained that swelling on the optic nerve is what precipitated Judah's brain surgery back in May. Dr. Jampel, not having anything to compare with, wondered if the swelling he saw is actually improvement from the swelling months ago, or if it's an indicator of increased Intracranial pressure meaning the shunt may be malfunctioning or not set properly, or if it's an indicator of something strictly involving Judah's eyes.

So, we left under a cloud of confusion and not knowing whether his findings were something that needed further testing or not. That leaves me on the phone or otherwise trying to communicate with three of Judah's doctors. Anyone ever try to reach a doctor directly over the phone? Not so easy. Try reaching three and then getting them to communicate to each other! :)

Otherwise, Dr. Jampel was comfortable with what he saw regarding Judah's pressures and said there were no signs of damage to the optic nerve and therefore, no need for surgery at this time. That was good news!

We are trying to grow comfortable with the fact that things with Judah will to some degree always be under a cloud of confusion. Sturge Weber Syndrome is a complicated thing, involving many systems of the body and therefore many specialists poking, prodding, assessing, diagnosing and treating. Even though we see some of the best doctors in the nation at Hopkins, their knowledge is still limited, and much is still unknown about SWS.

I am easily tempted to be overwhelmed by the weight of managing Judah's care at times, and this for a child who for all intents and purposes appears to be doing rather well. In the face of this temptation, though, I am given an opportunity to again and again look to Judah's Creator, affirm that Judah was fearfully and wonderfully made by His loving hands, and trust that what is impossible for man is possible for God. I am given the opportunity to pray and depend and trust and wait and see God reveal His power and glory as He works out His good plan for my son and for me and my family.

And, I know I am not alone. I am too well acquainted with others, like my dear friend, Emily, mom to sweet Livi, who also faces these same temptations but also the same opportunities to lean hard on God's truths. It is not what we would choose, but we do know it is what God will use for our good and His glory. And, we're trying to draw comfort and strength from that knowledge.

Thanks for your prayers on our behalf to this end.

Sunday, September 10, 2006

Another EUA

A bit last minute, but anyone who reads on Monday, would you please pray for Judah today? He is going in for an EUA (evaluation under anesthesia) on his eyes. He has not had one since January because the surgeon who has always done these for Judah left Hopkins rather abruptly. So, between that change and Judah's brain surgery in May, we had not scheduled another EUA until now.

I am faced once again with the choice that I face each time we take Judah in for any type of evaluation: 1. be anxious over many things or 2. seek the opportunity it affords to trust God and to entrust my son to God's mercy and care. God has always been so good to us through each procedure and proven His faithfulness time and time again which hasn't always or even often meant "easy" to get through. Nevertheless, I can waver in my trust, a temptation I'm sure common to man. But, I want to trust God because He is trustworthy!

Please pray that:
  • Judah will fare well once again with anesthesia. He is going in with some mild congestion, and the boys' asthma flared up a couple weeks ago. So, this can be cause for concern when going under anesthesia.
  • Wisdom and Skill for Judah's new doctor, Dr. Jampel. While he has more experience overall with glaucoma patients than Judah's previous doctor, he has less experience with Sturge Weber patients. Apparently, the typical glaucoma surgeries are both more risky and less effective in SWS patients.
  • Judah will not need surgery tomorrow but that his pressures will fall within normal ranges.
  • Tucker will do well with Lawrence's mom, who will be staying with him tomorrow, as he grows more aware of the dynamics of these times when we're away from him.

I'll try to post how things go asap. Thanks for praying!