There are days when I contemplate (but not too much), "How am I doing this?" My answer always goes back to God's grace. That's all I can say. I know me. Naturally, I'm emotional, panicky, somewhat dramatic. My thoughts about how I would be doing trying to cope by myself--despair, a really dark place, a complete breakdown. In reality, everyday, I feel as if I am surrounded by this unseen protection. My mind is at peace. My body has strength that it hasn't had before. My heart has joy that doesn't make any sense. I know that's my Savior, my Friend. I rely on Him so heavily to be my all. There's been a couple of specific incidents where I stopped trusting in Him. The dark place I began to slip into was not at all where I wanted to be. These times were marked by crying without stopping, (I literally could not stop.) hyperventilating, panic, hopelessness so heavy it felt like a weight on my shoulders. I had to run to my Lord and in both instances, when I did, the darkness just fell away. I only give those specifics because maybe someone reading this has times like that and you just feel you have to endure them. You don't. It doesn't have to be like that. Here's the three things the Lord showed me I should do when I feel those times are coming (or before they happen is better).
1. Be still.
Find a quiet place, sit still, and make your mind slow down. Stop all the race of thoughts. The Bible tells
us in Psalm 46:10, "Be still, and know that I am God:" So this step leads directly into the next one. When
we are still we are automatically directed to God and who He is.
2. Remind yourself about who God is.
This can be as easy as reading a list of the attributes of God and thinking about each one of them.
Here are some: Faithful, Holy, Righteous, Good, Loving, Sovereign, Just, Unchanging, All Powerful
There are many more. When we remember that God is good, He is sovereign, He is always right, we are
compelled to realize we are not in charge. My pastor (and brother-in-law) often says, "There is only one
God and I am (or you are) not him." This step leads us into the next one.
3. Surrender all to Him.
When we realize that all things are part of a master plan, we can more easily give all to God. This means
all things about yourself, your family, your future, etc. There's no way I can hypothesize about God's plan
because I don't know it but let's think of one possibility. Let's just say one of my son's doctors has never
had any first-hand experience with NCL. However, this doctor has a background of experience in
neurological or chromosomal medical research. By monitoring my son or daughter through months or
years, they draw some conclusions about NCL and its treatment. Ten to 15 years from now, they develop a
cure or treatment that will help future cases of NCL. Does that help my children right now? No. But if it
could be a help to other families in the future, that could be part of God's plan. I don't know that's the case
but we don't think at all like God. His thoughts are higher than ours. Surrender all to His Master Plan.
I would be remiss if I didn't add that before you can start with step 1, you need to have a personal relationship with Jesus. This begins by asking Him to forgive your sins and become your Savior, realizing He took your punishment on the cross and rose from the dead after he was crucified.
Once I have contemplated these things, it is so much easier to continue with each day.
The Lord has also showed me some things about my son's life in particular. Most of the sadness or despair in situations like ours comes from thinking about what's not going to be. That assumes that my expectation is that a happy life happens when all things are "normal." If my children grow up, go to college, get a job, have a family, do something big for God. What the Lord has shown me is that my son is doing something BIG for Him. He is fulfilling the purpose God made for his life. He may have a shorter time here on earth. The time he has may not be with the same abilities as most people. However, he will influence people's lives. Hopefully, he can be a great picture of how good God is. He's already taught me many things about my life. The dependence he has on me everyday is the kind of dependence God wants me to have on Him. He is content or happy in less than desirable situations. Our friend, Jeff Copes, has nicknamed him Braveheart because he has handled so many difficult situations with courage. Really, I'm no longer sad for my son's condition. Yes, there are times of sadness. I'm still human. But overall, I'm at peace with the plan for his life designed by God. I try to take care of him to the best of my ability and bring joy to his daily routine. I'll try to do that with God's help until his purpose is completed and it's his time to go to heaven. Then, I know he'll be perfect and can enjoy that perfect state for the rest of eternity with Jesus. I'll get to enjoy that perfect state with him when I get to go to heaven. This time where he is locked in an imperfect body seems like such a drop in the bucket of eternity.
And finally, when I was twelve years old, at a church camp, I surrendered my entire life to do what God wanted me to do. At that time maybe I thought the hard things I might have to do would be go to another country as a missionary, move several times in my life, or other such expected things about serving the Lord. What my Heavenly Father knew at that time was that I was surrendering to do this. I was surrendering to walk the journey God had planned for our little family--to learn more medical lingo than I ever wanted to know, to navigate insurance companies protocol, to meet amazing people in the medical field, to change diapers for a really long time, to see how much God provides for His children, to persevere through medicine changes, to encourage others with difficult journeys hopefully, to understand in a deeper way how the family of God can support one another, to love my husband and children and get to know them in a way I might not have had we not walked this journey together. There are really difficult days ahead but there will be something to learn from those dark times. When I surrendered my life to the Lord at age 12, I meant it. I don't intend to take it back now just because my life is not what I thought He would make it. He's made so many more promises to me and He'll keep everyone of them.
All of this may sound so incomprehensible to you. You might think I've lost it or I have had a complete breakdown. You may shake your head and say, "Thinking these things is the only way she can cope." I'm not naive enough to think those thoughts don't happen. I don't know what all people might think of me but I do know what my Savior thinks of me. Jeremiah 29:11 says, "For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end." It may seem like bad things to those around us but our Lord says they are thoughts of peace to give us His expected end. Ultimately, my expected end has to be laid at the foot of the cross. Society and my own selfishness have shaped those expectations. Now, the Lord has more of my full attention to give me His expected end. It will be good. That's another promise. "And we know that all things work together for good to them that love God, to them who are the called according to his purpose." (Romans 8:28)
Ok, now that those thoughts are preserved for posterity!!! ;) Please pray for Philip to overcome his congestion problems. We have tried several over-the-counter medicines per his doctor's instructions. We are trying to make the situation workable for now by changing up his feeding routine but we would really like for the problem to be taken care of. Our family doctor says we just need a hard freeze and I agree. The problems are stemming from allergies and many, many in Oklahoma are struggling this year. Our fall has been a little wetter than normal which adds fuel to the allergen fire. I don't necessarily want cold weather yet but I do want poor Philip to be relieved of this nightmare. Pray the rest of us can avoid secondary infections as well--sinusitis, bronchitis, etc.
Time is approaching quickly for our Make-A-Wish trip. What excitement! Joyanna asks daily for the zoo or the plane. We're almost to the point now where we can start counting sleeps. (She measures time by sleeps--nap and night-night. Every day has two sleeps.) We would be at 15 sleeps now. Please pray we get all the logistics worked out. I'm sure everything will go fine. Just yesterday I started thinking, "occupying a 3-year-old and 20-month-old with about the same attention spans and behavioral problems on a plane or in an airport." Wow! You start praying. We'll do some planning. God's grace will do the rest when the time comes!
Thank you so much for loving our family and praying for us!