Monday, July 30, 2012

Medication Transitions and Hope Transitions

The LORD thy God in the midst of thee is mighty... 
and He shall reign in the midst of thee with power and strength and authority...

Edmond's First Family Vacation to Groveland, CA
(near Yosemite)
Found myself singing this song to Edmond this morning. The prayer that was on my heart was simply, "Have Your way Lord." Lately, I find myself completely avoiding praying for Edmond for days at a time. It reminds me of when my father was dying in 2008 of liver cancer. We wanted to pray for him to live and not die and to be healed, but just praying this prayer would open the flood gates of emotions to possible eminent loss of someone who was just too dear to us to lose, that I would actually avoid praying for him, unable to face the wave of emotions that would overtake me.  It's the same with praying for my son, the moment I begin asking for God to have mercy on Edmond, to take the seizures, to restore chromosomes, this huge wave of sorrow, pain, grief, overtakes me and I become too overwhelmed to pray a long drawn out pray, so I simply say, "Lord, have Your way." Sometimes it's even too hard to talk about it with God, especially when I believe He knows all my ways and all the details of everything we are going through with Edmond and with Adonis and I in doing our best to care for him daily. 

I'm reminded of the scripture in Psalm 61:2 
From the end of the earth will I cry to You, when my heart is overwhelmed and fainting; lead me to the rock that is higher than I [yes, a rock that is too high for me]. (Amplified) 

Edmond having physical therapy with Alyssa and Bethany
Having faith through the storm daily is not poetic, it's not stoic or an ideal picture of heroic, it is tears, sweat, hope, pain, sorrow, grief, messy, struggle, it's being brutally honest with how mad you are at God, and still telling Him that you love Him anyways at the end of the day, because as I love to remind myself, "If God don't do nothing else, for me, He's already done enough."  And not only has He done enough, He, Himself IS enough. So, we continue to trust in Him, though we don't like it and we don't know where this road is going to lead, but we choose to believe God has given us His very best, although we cannot comprehend how it is best for our son to have this disorder, by faith we accept it and are waiting for God to reveal to us daily His plan for our good. Much easier said than done, believe me! 

Edmond's seizures have increased to 15-20 small episodes lasting 30 seconds daily. This is due to his transition from getting off of Topamax and staring a small dose of ONFI for the last two weeks. He finally starts the full dose tomorrow (Tuesday) feels like we have been waiting forever as we slowly increased it daily. The hope is that the seizures decrease and stop on this new drug ONFI and he also is continuing to take the maximum dose of Keppra that his body mass can handle per day. Both ONFI and Keppra are anti-seizure medications.   It's been hard to watch him in the transition, makes you wish we just kept him on the Topamax, where he was having mild seizures 6-10 a day but sleeping through the night. He hasn't slept good through the night during the initial doses of ONFI and has been having seizures through the night that awaken him. But we have to give it a try and keep taking steps to try to stop the seizures. 
Giants fans fitted out

Light in a messenger’s eyes 
brings joy to the heart, 
and good news gives health to the bones. Proverbs 15:30

We had a substitute therapist for the past few weeks for Edmond who was able to share with us that she had grown up with a child who was diagnosed with Lissencephaly as Edmond is. She shared that the doctor's had given a pretty bleak prognosis for the child, but that the family continued to care and believe for the best for him, and he was able to be potty trained at 10 years old, walks and talks and is now 17 years old. I believe this story inspired hope for Adonis and I where we had lost it. And even though the extent of lissencephaly on the surface of the brain varies from person to person, and Edmond's brain may not be comparable to this child, the good news was very much welcomed. I felt as if a little seed of hope was planted in our hearts and over the next weeks, I felt that the seed grew into strength to continue on.  This has brought me to the ultimate conclusion that a little hope can go a long way, and it is far better for us to hold hope in our hearts to make it through each day, than to live each day too afraid to have hope for Edmond. I think in our human mind we try to protect our hearts by rejecting hope, but hope is the ultimate protection for our hearts and to help us to live each day able to enjoy what we can. So thank God for the good news that was brought to us. 

I'm reminded of another scripture. 
God's word promises that through struggle we will find hope and that hope will not disappoint us.  Romans 5:3-5, 

And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.

Hope will not disapoint us. 
So keep Edmond in your "hopes" and prayers. 
- Candace 

1 comment:

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