In the summer of 2012, life was idyllic. We had just come through a stressful time in life where my husband had been commuting 800 miles for his new job 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.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.
Let me say, the effects of this condition 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. The fatigue from the stress and lack of sleep was overwhelming.
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. It wasn’t that I didn’t love my kids and my husband, but I was tired, exhausted, and spent. I knew I needed to roll up my sleeves and work on recovery for my son.
I had no idea what was in store for us and I had no idea how it would end. I was scared. I was scared for my son. I was scared for his future and how this would effect my daughter. I was scared for our whole family. It was without a doubt the darkest time in my life. I felt lost and struggled with hopelessness at times.
Walking in Darkness… no more.
I hoped and prayed that things would turn out well. While we are not at the end of our journey we have made significant progress. My son still has some issues that we are working on healing but we have come a long way.
He now sleeps through the nights. He likes music and books. He plays well with his sister. Meltdown are non-existent. He is starting to mature emotionally and to handle disappointment well. He has friends. He is doing well in school. Academically he is at or above his grade level. Most of all he is happy. He is very happy.
The despair, fatigue and utter darkness I felt is such an utter contrast to the joy of having seen my son grow and learn to enjoy life again. I no longer worry about his future. Recovery is a hard road…a lot of hard work. It isn’t for the fainthearted. But if you want your kid to recover you have to get your work boots on and just keep going. In some ways our lives are still so different than that of other families.
When my friends kids are enjoying donuts, I am feeding my kid salad and small amounts of fruit. When my friends kids are playing sports, I am working on primal reflex integration. You have to think about everything. Easy and carefree does not describe the life of a biomed mom but the rewards are undeniable. When your kid thinks about what he wants to be when he grows up and talks about it with a smile, well…it makes all the time in the darkness worth it.