For one thing, I am more thankful for my husband, who shares the privilege of caring for our son and is my nightly tag team partner in wrestling the sleep-scratch beast. After almost 25 years of marriage, it’s easy to take your spouse for granted. Now, I am more appreciative of the person he is and of all the little (and some very big) things he has done in an effort to help Brian heal and to keep me sane. The latter may be a lesson in futility, though.
We’ve been able to watch a lot of movies. Movies helped us while away the hours in the early phases when Brian barely left the couch. They helped distract Brian from scratching so hard during the “itching hours” of 9pm-3am. In addition to their entertainment value, some of the movies helped illustrate topics he was learning for school and life. Some of the examples are a stretch, I know, but he got the picture.
Meet the Robinsons, Robot, and other movies: The past is gone, and it’s okay to make mistakes. Learn from both and move on. “Keep moving forward,” and never give up.
TSW is a long, dark, scary roller coaster ride, but there is a very bright light at the end of this tunnel: healing. For this, we give thanks as we keep moving forward.
A long time ago, I decided that for Lent, I would give up “giving things up for Lent” because everything I ever gave up was self-serving: chocolate or desserts (so I could lose those Christmas pounds) or diet coke (I’d save a lot of money if I just drank water.) This type of “sacrifice” was not in the true spirit of Lent. So instead, I tried to do something extra like spending more time on devotions or writing an encouraging note or doing a good deed daily, which was way more successful than giving up chocolate.
“It’s been an hour? Really?” He says slightly amused. “Then can I have another one? This one’s cold.” z-z-z-z-z ARRRGGGHH!
Why did I have to argue with my sleepy, sick puppy? Why did I have to make sure he knew he was wrong? Just so I could be right or have the last word? He was half asleep, for goodness sake! Take a chill pill!
For me, that is a true sacrifice.
Every thorn has its rose, so here are some of the positive things about this ordeal.
1) We get to use ALL the sheets that once sat in the closet unused for years. I used to feel sorry for them because they were never used, but by the time this is over, they'll be threadbare and will have had a meaningful life.
2) Because I've been going out on the deck to shake out sheets, clothes, etc. 1-3 x per day, I've used the deck more in the past 5 months than I have in the 16 years we've lived in this house. I've never really appreciated what a cool, high deck we have until now. Yes, I felt sorry for the deck, too.
3) Since we can't sleep anyway, we can watch the trilogies–Lord of the Rings, Toy Story, Pirates of the Carribbean–and get some itch relief during the “Itching Hours” of 9pm-3am.
4) I get the opportunity to actually talk and spend quality time with my son during the Itching Hours, talking about TSW, life, faith, Lego Movie….
5) Having to say “no” to a lot of other demands on your time (because with TSW who has the time/energy?) and focusing more on what's truly important: God, family, friends.
6) Knowing that despite the living hell that is Topical Steroid Withdrawal, my child is no longer on topical steroids, and he WILL HEAL.
7) After a long, itchy night, it feels awesome to see the first rays of sunshine streaming through the clouds, promising a brand new day of health and healing.
Stay strong, keep the faith. May God bless and heal you all!