Wednesday, March 28, 2012

Choosing God Daily in the Midst of Difficulty

15 But if serving the LORD seems undesirable to you, then choose for yourselves this day whom you will serve, … But as for me and my household, we will serve the LORD.”  Joshua 24:15

Monday, we met with Edmond’s geneticist to discuss his blood results in further depth and to be able to ask questions about his diagnosis. We left discouraged and heavy after discussing the science of his condition.

In times like these… it’s easy to feel like it’s actually “undesirable” to know and serve the LORD. I know some may be shocked by what I just said, but then I wonder how great of a test have you had to face in your life, really. Adonis and I actually had a conversation about this, wondering if life would be so hard for us, had we not given our lives to Christ, had we not been put on a “spiritual radar”, embarked on this Pilgrims Progress.

During this time I wonder if being an atheist would be easier on my mind, at least I could blame science and not take offense at the “luck of the draw” that has been dealt out to my son. But I do take a kind of offense. If my Father God, knows my name, knows my steps, orders my steps and orders my son’s steps… then I find that in my heart of hearts, I want to tell God that my feelings are hurt that He has allowed this to happen to my family, and to my son.

God keeps bringing this passage to my mind…

14 “Now fear the LORD and serve him with all faithfulness….15 But if serving the LORD seems undesirable to you, then choose for yourselves this day whom you will serve, … But as for me and my household, we will serve the LORD.” 16 Then the people answered, “Far be it from us to forsake the LORD to serve other gods! 17 It was the LORD our God himself who brought us and our parents up out of Egypt, from that land of slavery, and performed those great signs before our eyes. He protected us on our entire journey and among all the nations through which we traveled. 18 And the LORD drove out before us all the nations, including the Amorites, who lived in the land. We too will serve the LORD, because he is our God.” Joshua 24:14-18

I can relate to this passage of scripture in a couple of ways. Joshua is taking a stand here. He is drawing a line in the sand. I’m sure he rightly suspects that there are those among him who are grumbling and complaining and looking for other things to worship, rather than God. Maybe they’ve had questions and doubts, pain and trials… and even though they find themselves in the “promised land”, it’s not how or what they expected it to be.

I kinda thought marriage and kids would be a type of “promised land” to me. And here I am feeling like, ‘man, this serving the Lord thing is harder than ever.’ And I can hear Joshua saying, “if serving the LORD seems undesirable to you, then choose for yourself this day whom you will serve.” He goes on to remind them that God himself had brought their parents out of Egypt from slavery. I can relate to that verse too, how God himself, made himself known to my parents and delivered them from sin, how he changed our lives “for good.” And I can also relate to the verse, “and performed those great signs before our eyes.”

When you grow up as a preacher’s kid, a street preacher’s kid at that, there’s plenty of room for God to do what he wants to do. Without a regular congregation supporting our family, we really had to live by faith, ofcourse at the time, it was my dad’s faith we were all living on… but nevertheless, time and time again, we saw God’s hand move “right before our eyes.” Rent dropped into our lap, cars driven up to our house and dropped off, Christmas money of specific amounts we had asked for come in… health insurance paid for… college tuitions taken care of. Not to mention the years dad should have already been dead of liver disease and they could only detect trace amounts of Hepatitis C in his liver, where the doctors were telling him it was miraculous. And ofcourse the scores of people who came to Jesus, who dad “bumped” into, at the store, on the freeway (literal accidents), at Red Robin, in the hospital, on the phone…. People delivered from drug addiction, healed from disease, all of this was “before my very eyes.”  

I suppose that’s the power of our testimony, the power that helps us to overcome, that builds our faith, the story God writes around us and in us. Right now I have to rely on my backstory… the grace that got me to this point. Edmond’s story is just beginning, our promised land, as it was for Joshua, is just beginning. And so here I stand in the midst of difficulty and say, 

"Lord, I am taking a stand for my family. Serving You IS desireable to me, despite how I feel, others may choose other gods, but as for me and my house, we will serve the Lord!" 
Once you know, that you know, that you know, God himself has stepped into your life and in your corner… there’s just no other way to live, but I find that it’s still a battle of my faith to choose to do so, every day of this life. Today, I will choose again to serve the LORD. 

When we have no hope...

Some of you might remember that I posted on facebook the other day that it was a hard day. This was the devotional for that day that I received. It was such a timely word for us. 

By Gary Wilkerson
Published: 03/26/2012 - 12:00am
Elisha inherited from Elijah the role of prophet in the land. In 2 Kings 4, Elisha encountered one of his first big tests when he was approached by a Shunammite woman whose son had just died. In desperation, she told Elisha, “I’ve prayed and fasted, wept and pled but I have received nothing from the Lord. With my son gone, I don’t have the strength to go on. I just don’t understand what God is doing. This is more than I can bear.”
Elisha responded by doing something unusual. “He said to Gehazi [his servant], ‘Tie up your garment.’” In other words, “Gird up you loins.” Then he continued, “Take my staff in your hand and go. If you meet anyone, do not greet him, and if anyone greets you, do not reply. And lay my staff on the face of the child” (2 Kings 4:29, ESV).
Heeding Elisha’s instruction, Gehazi went to the family’s home and laid his staff on the face of the dead child. There was no sign of life so Gehazi returned to Elisha saying, “The child has not awakened” (v. 31).
Here is my question to you: What do you do when everything you try brings no result? Where do you turn when every effort you put forth does not accomplish its purpose?
There comes a time when we have no resource but Jesus alone. In this story, Elisha is a type of Christ. He went to that Shunammite family and stretched himself out over the body of the dead boy. When he was face to face, foot to foot, hand to hand over the child, he breathed into him.
What happened then? Scripture says the boy sneezed seven times (v. 35). He was alive!
What brought about this life? Jesus Himself breathed into the situation. When we have no hope, no resources, no ability, Christ breathes His supernatural life into our circumstances.
Make this your prayer: “Lord, I have nothing but You have everything and I need You now. If you do not breathe into my problem, I won’t make it. I can’t do it, but you can, Lord!”

Wednesday, March 21, 2012

Results of Edmond's Blood Work

Psalm 86:16-17, “Turn to me and have mercy on me; 
grant your strength to your servant and save the son of your maidservant. 
Give me a sign of your goodness, that my enemies may see it and be put to shame, 
for you,  O LORD, have helped me and comforted me.”

We recently received a call from Edmond's geneticist stating that the lab in Chicago that was testing Edmond's blood work called and said they definitively identified the type of lissencephaly that Edmond has. He falls under the umbrella of Classic LIS1, Type 1 isolated lissencephaly. They stated it was so clearly this type that they did not need to run any further testing.  This means that his condition was caused by what they call a spontaneous occurrence where somewhere along the line, in his formation, a chromosome was passed over or deleted which later manifested as lissencephaly or  "smooth brain." This appears to be the most common form of lissencephaly. 

It is good news in our family for a few reasons. 

1) It confirms that this was completely a genetic/chromosomal occurrence and puts my mind at ease that there was nothing that I did during my pregnancy that contributed to brain defects and there was nothing we could have done to prevent it.  
2) His particular type of lissencephaly is not hereditary, neither Adonis or I carried it down to him in our genetics, and therefore none of our offspring are carriers of it, therefore Eden will not have to undergo testing to determine if she is a carrier, and we will not have to worry about her offspring having it. 
3) Because it was a spontaneous occurrence of an "error" during his morphogenesis or fetal development, the likelihood of having more children with this or similar conditions is extremely rare, 1% chance or less. 

Edmond has been struggling this week with a cough that turned into bronchialitis. The pediatrician has put him on antibiotics and albuterol for his weezing (although the weezing is not too severe). In total he is taking 4 medications twice daily, plus tylenol. He already has a difficulty with keeping formula down and not throwing up during medication time, so it has been especially hard to get 5 nasty tasting medicines down him, keep it down, and get him to drink his bottle. He's been having a hard time feeding while having this cold. We've been covered with throw up all week, blankets, towels, shirts, please keep us in prayer, medication time is difficult. Eden has recently been throwing tantrums about sleeping in her bed at night and since Edmond is already up all night coughing, we haven't had much sleep in a week or so. Edmond has also been screaming crying every night for an hour or two between the hours of 10pm and 1am and we are unable to console him no matter what we try. We are hoping this is just a phase and passes soon. I literally have to put in ear plugs while trying to calm him down, and his screaming is still super loud. The amazing news is that Eden sleeps through this screaming even though we are in a small apartment with thin walls, so that has been a blessing. We bought Edmond a highchair that helps him to hold his head up for eating and also supports him sitting upright (picture above). We were really blessed to find it at Babies R Us at a super low discounted price because it had already been opened. 

In other news, I realized that I had been operating in a state of shock over Edmond's diagnosis for the past 6 months. I didn't know I was still in shock all this time, until I wasn't in shock, if that makes any sense at all. I think hearing the news about his bloodwork the other day helped me to come to certain terms that this has happened to our family, and to Edmond, still believing God for this process and for miracles, but also able to accept what has happened. I'm glad I was able to take this step, it alleviated a great deal of anxiety and questions that wouldn't end in my mind. 

Wednesday, March 7, 2012

Edmond is 8 months old today!

Isaiah 40:11

 11 He tends his flock like a shepherd: 
            He gathers the lambs in his arms and carries them close to his heart;  
He gently leads those that have young.

Edmond is 8 months old today. He is our little sweetheart, cuddle bear, Kachoo-choos! He has been sleeping through the night on a regular basis and he usually wakes in the morning in a good mood, cooing and smiling. He is continuing to have spasms, but they have decreased in duration, and frequency since his last steroid treatment. Some are more intense than others, and he has about 2-3 a day. He no longer has them every time he awakens from a nap, which is a good thing. We have decided to hold off on starting another medication Sabril (which has a 30% chance of causing peripheral blindness), we are waiting the spasms out and praying Edmond will outgrow them and not have to have anymore medication treatments for them. He's gone through so much trying to stop them and none of the steroid treatments have completely worked, although the spasms are less interruptive as they once were. We are trusting God to intervene as we are taking a step of faith in this area and praying for development of his brain and motor skills regardless of what the doctors say. 

Edmond continues to do well on his anti-seizure medication and still has not had a breakthrough seizure since December. Wow, thank God for that, I hadn't realized it had been that long until just now. Edmond is still having trouble with head strength and is not yet able to hold up his head on his own while in an upright position. He has physical therapy on Wednesdays and Fridays and we are always working with him on his PT homework. We started giving him baby oatmeal cereal on Saturday and he is doing well. I added pears and he is doing fine on them too. The first day he spit it out numerous times before swallowing, but improved the next day and by day three he wasn't spitting out the oatmeal any longer, which shows he has a capacity to learn basic skills to eating. Edmond demonstrates an awareness of his surroundings and sounds. For example, right now he will only sleep if I come and lay next to him in our bed, as soon as I leave or come into the front room, trying to type this update, I can hear him cooing and calling for me. We are unsure of what he is able to actually see, but are praying for his vision. At times it appears he sees very well and tracks momentarily, but mostly his eyes are not focused and do not completely connect on persons or objects. Edmond is outgrowing his infant car seat and will be in a regular car seat very soon. We need wisdom about how we can best transport him comfortably and with equipment that will support his needs well and not injure our own bodies while moving him around. He is already 21 pounds, and to tell you the truth, I'm hoping he loses some weight and thins out as I whine him off of breast milk, he's hard to get around the house, let alone around town. Those type or decisions come along with a very difficult thing that Adonis and I have to face, which is that these are concerns that parents have to navigate through for children with "special needs," which is a term that we have not been able to come to terms with nor can we even begin to want to identify with, but here we are being forced to. Pray for us on our journey, we have moments of joy and great discouragement each day. Here's some pics I took today of Edmond and Eden. 

I've been clinging to Isaiah 40 over the past few months. Some of you know I have a tattoo on my shoulder that references this chapter. The past few days I've been meditating on the end of verse 11  ....

"He gathers the lambs in his arms and carries them close to his heart;  He gently leads those that have young." 

So many times I feel that the Lord is not really paying attention to what we are going through, and how can He be putting us through this. I have to admit to you, I did believe that I was "too special" to God to have something like this happen in my life and now that we are going through this with baby Edmond I wonder at God and his plan. I wonder if He is really there... really paying attention to us at all. "He gently leads those that have young".... Yes! that's me! I have these young babies and I need the gentle touch of the LORD, because He knows that my heart is tender for these little ones who are depending on me and whose little hearts are still so innocent and fragile. This process doesn't seem gentle at all though. But this verse reminds me, God has not forgotten me... then in the conclusion of this chapter that is themed as comfort for the people of God it says.... 

 27 Why do you complain...Why do you say... “My way is hidden from the LORD; my cause is disregarded by my God”? 

um... me again... does God see us? Why is he disregarding us??? 
And then here comes the HOPE!! 

28 Do you not know, (Adonis and Candace)
 Have you not heard?
The LORD is the everlasting God,
   the Creator of the ends of the earth, including Edmond.
He will not grow tired or weary,
   and his understanding no one can fathom.
29 He gives strength to the weary
   and increases the power of the weak.
30 Even youths grow tired and weary,
   and young men stumble and fall;
31 but those who hope in the LORD
   will renew their strength.
They will soar on wings like eagles;
   they will run and not grow weary,
   they will walk and not be faint.

Lord make this scripture alive in our hearts that we can carry on the task at hand and trust in YOU no matter what, it ain't easy Lord, so please help us.