An Idealistic Life
In the summer of 2012, life seemed really good. We had just come through a stressful time in life where my husband was commuting 800 miles to a church in another state while we waited for the house to sell. We finally decided to rent the house and move. Our son was almost three at the time, and the idea of the three of us being together again on daily basis was exhilarating.
Drastic Change
However, our world changed suddenly when right after we moved, our son changed. I don’t mean that he seemed a little different. It was like someone kidnapped our bright, adorable little boy and gave us some street urchin to raise in his place. The changes were dramatic. He went from loving books and music to wanting nothing to do with either. He screamed a lot. He seemed spacey and “out of it.” He suddenly got frustrated easily.
Fast forward almost one year later when our daughter was born. At that point, he fell off a cliff. He screamed in terror when “Thomas the Tank Engine” was on, a favorite of his. He had major meltdowns if I needed to go to the bathroom or take the dog out. Everything was a battle. Every day felt like war. Imagine the spirit of a rebellious teenager in the body of a three- or four-year-old. Traditional discipline did not work. Non- traditional discipline did not work. Nothing seemed to work.
Not long after that, he was diagnosed with PANS, an auto-immune disease that strikes between the ages three to thirteen and is torturous to children and devastating to families.
Far-Reaching Effects
Let me say, the effects of this disease are far-reaching. There is no aspect of life that this does not touch. It has affected our relationships, finances, family life, marriage, physical health, and spiritual health.
Going out with friends for a casual evening at a restaurant is no longer possible. Having friends over is almost equally as difficult as well.
When our daughter was a baby, it was a nightmare. I could rarely feed my daughter without my son having a major meltdown. That made parenting my two children very difficult logistically. It is difficult to describe a marriage as enjoyable when you both feel that you have been in a battle all day and at the end of the day you barely have enough energy to say “good night,” and some nights I didn’t even have the energy for that.
Physically, I was spent from getting up in the middle of the night to feed a baby and also getting up with a screaming four-year-old every night — sometimes two times in one night. By God’s grace, my daughter slept through my son’s midnight screaming sessions.
Imagine a fire breaks out in your kitchen. You put out the fire, and there is no major harm done, but it was a little scary. Now, imagine that happens every day of your life. After a while that would take a toll, and you would become quite fatigued from daily having to put out the fire.
Spiritually, this was absolutely the hardest hit area of my life. I no longer had the luxury of getting up early to spend time alone with God in His Word. My son woke up early and woke up several times in the night, leaving me utterly exhausted. The joy of daily entering in fellowship with God was severely limited. In addition to that, I went almost two years without being able to sit through an entire church service. Being able to be involved in church ministry was quite limited.
Why, God?
I asked God, “Why? Why are you hurting me?” All the things that brought joy in my life had been cut off or intensely limited — not one thing, not two things, but all the things. Even the joy of raising my new baby girl was marred by the overwhelming stress of dealing with all of this.
Why would a sovereign God allow this? Had I sinned in some way? Had my husband sinned in some way? While our lives were not perfect, I cannot say that we had some unconfessed sin that God was chastening us for. At times, my anguish, stress, and grief was so great I often identified with Jeremiah in Lamentations 3:2, 4-9, 17-18. Consider what he wrote:
2 “He has driven me and made me walk
In darkness and not in light.
4 He has caused my flesh and my skin to waste away,
He has broken my bones.
5 He has besieged and encompassed me with bitterness and hardship.
6 In dark places He has made me dwell,
Like those who have long been dead.
7 He has walled me in so that I cannot go out;
He has made my chain heavy.
8 Even when I cry out and call for help,
He shuts out my prayer.
9 He has blocked my ways with hewn stone;
He has made my paths crooked.
17 My soul has been rejected from peace;
I have forgotten happiness.
18 So I say, ‘My strength has perished,
And so has my hope from the Lord.’”
The Compelling Desire to Quit
I wanted to quit. I wanted to quit so many days, but I knew there was no way I could do that and still be in God’s will. It wasn’t that I didn’t love my kids and my husband, but I was tired, exhausted, and spent. It is somewhat like being on a roller coaster. Once you are on the cart and it is moving, you aren’t getting off until the ride is through — whether you like it or not.
I had no idea what was in store for us when we moved, and I have no idea when this will end or how it will end. I have no choice but to keep going, to keep walking, to keep trying to reach out to God in the ways my life will allow me to do so. At times, I feel put on a shelf by God, cut off from God. It is hard when you want to serve God, to honor Him, to raise your children to love and honor Him, only to have Him allow circumstances in your life in which you feel distanced by God.
Walk and Pray
I hope and pray that things turn out well — that our son recovers, and we look back at all of this one day as a distant memory — like Job, we see God returning to us everything that has been lost to us and more. However, I cannot bank on that. I pray for that, but I cannot demand that of God. He does not make guarantees like that.
All I can do is walk and pray…Pray that God gets some glory from this, even though I cannot for the life of me see how. Pray that He will draw my children to Him — both of them — and they will love Him and walk with him on obedient faith as well. Pray that God will not let me go (I know eternally I cannot be lost) but in terms of finishing the race well that God will give me strength, because I am at a point in my life where I deeply realize — apart from God’s divine intervention — I do not have what it takes to finish the Christian race well.
How do you tell people what you’re really feeling when they ask how you are: “I feel really fragile and weak and feel that I am barely hanging on?…I feel that God has forgotten me and sometimes I even feel that He is my enemy, even though I love Him.” Their response will probably not be, “Wow, bless God!”
My greatest goal in life is to bring Him honor and glory and that my kids would love the Lord and faithfully follow Him. I cling to that goal because I know that is close to the heart of God. I don’t know what that will look like and that can be scary (think of Jeremiah), but I can trust that even in the midst of it — even if it is scary and maybe even horrifying — that God Himself can comfort me and give me joy.
The Lessons
So, what have I learned through all this? I have learned that God is with me even when it feels that He has abandoned me. I knew this intellectually, but once again God has taken what I know intellectually and enabled me to know it experientially on a deeper level.
I have learned that when I am spent and hurt and do not feel like loving, I can ask God to fill my heart with love and He will do just that. He will give me what I need in the hour I need it and not before. I have had to flesh out the Biblical concept of love to act for another’s best interest and good even when I do not feel like it. I have learned this on a level I never thought that I would know.
I have learned to hold my family more loosely. In other words, I believe that God (in a good way) has loosened my tight grip on my family. On the flip side of that, I have learned that God is the prize. He is the one for whom my soul longs for. Fellowship with Him is the trophy in this life as well as the next.
Through all of this, God has shown me on a deeper level He is the greatest thing my heart could long for. I can identify with the Psalmist who wrote “as the deer pants for the water brook so my soul longs for you oh God” (Psalm 42:1). I can also trust God that through it all, somehow He will not only give me strength for the journey He uniquely has for me, but ultimately He will fill my cup. In the power of God and through His Spirit I can choose to trust that I will not ultimately feel cheated by God in life. By God’s grace I can identify with the prophet Jeremiah when he later writes in Lamentations 3:22-25:
22 The Lord’s lovingkindnesses indeed never cease,
For His compassions never fail.
23 They are new every morning;
Great is Your faithfulness.
24 “The Lord is my portion,” says my soul,
“Therefore I have hope in Him.”
25 The Lord is good to those who wait for Him,
To the person who seeks Him.
