Happy Birthday Brian!

“You make me glad by your deeds, O LORD; I sing for joy at the works of your hands.”  Psalm 92:4

Brian had an incredible weekend from start to finish. It started with being able to get to school “early” on Friday 5/30 to take his SOL test and then playing well that night in a baseball game with no itchfests.

We woke him up at 7am on Saturday (previously unwise) to get to Williamsburg by 9am to play in a 2-day tournament. His team played a doubleheader and were done with Saturday games by 3:00pm, so we and some friends went to Busch Gardens for a few hours.  After a late dinner, we got back to the hotel, and Brian fell asleep around 11:30pm.  His scratching was minimal during the games and did not require cold packs or ice cubes.

Miraculously, he slept from 11:30pm to 9am Sunday morning without needing help to manage his scratching! Thank goodness for late games! Warmups for the 12:15pm game started at 11:00am. After winning the first game, we had a surprise birthday party for Brian between the first and second games. Brian turned 11 that day.

Happy 11th Birthday, Brian! June 1, 2014

Happy 11th Birthday, Brian! June 1, 2014

This weekend we were blessed with good sleep, minimal scratching, absolutely glorious weather, cool temperatures, perfect timing of the games, lots of shady areas at the ballfields, and great company.  In between games, Brian was able to run and laugh and play with his teammates and their siblings. It couldn’t get any better than this.

Well, it did get better: Brian’s team beat three more teams on Sunday and won the Virginia State Championship! Happy Birthday Brian!

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“Best birthday weekend in my entire life!”–Brian

For those of you who are undergoing topical steroid withdrawal, you have hope. Stay strong; keep the faith; persevere. Life does get better!

“‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future’”                                                              Jeremiah 29:11

It’s Not All Bad

Despite the itching, flaking, burning, stinging, redness, swelling, cracking, oozing, fatigue, temperature dysregulation, insomnia, and messed up sleep-wake cycle that comes with stopping topical steroids, it’s not all bad. There is some good stuff in this nightmare–I mean experience–that is topical steroid withdrawal (TSW.)

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 are grateful for the prayers, love, and support of family and friends. We are grateful for ITSAN and Juliana‘s blog, which gave us hope for healing from “incurable eczema.”

(If you are alone and going through TSW or are a single parent of a child with TSW, please considering visiting and joining ITSAN, a support network of other people experiencing TSW. It has been a big help to us for information as well as for just knowing that there are other people out there with Brian’s symptoms, and that this condition is real, even though many dermatologists and physicians do not acknowledge its existence. It is a long, rocky road to recovery; get some support to help you through it.)

Another good thing: Brian and I actually have conversations and interact with more than one or two words. Before TSW, it was “Hi” and “Bye” or how was school? “Fine.” Now, I can’t get him to stop talking. 😉

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.

Finding Nemo: Ocean life, ecosystems, letting go (for parents)

Journey to the Center of the Earth: Geology, rocks, schist, volcanoes, basic physics principles

Pacific Rim: Plate tectonics (kinda); Pacific Ocean floor

Pirates of the Caribbean 1-4: Use of levers, leverage, Spanish Armada

Sound of Music: European geography, the Alps, Austra/Switzerland

Robin Hood (with Kevin Costner): Middle Ages, feudal system, crusades

Jack the Giant Slayer: Middle Ages, The Plague

Toy Story 1-3, Cars, Sandlot, Up, Avengers, Captain America, Lord of the Rings Trilogy: Friendship, loyalty, say “no” to bullying, good over evil

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.

Lent 2014

Brian: “I would like to give up scratching for Lent.”

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.

The other morning as he lay sleeping, Brian awoke suddenly and groggily asked me to get him a hot pack for his feet. I got one ready and put it on his feet, but he was asleep. About an hour later, he calls out a bit miffed, “Mom, I asked you for a hot pack 15 minutes ago!”

I say, “I brought you one.”

“No you didn’t.”

“Yes, I did,” my voice rising, “it’s on your feet!”

“You couldn’t have just brought it because this one’s cold!”

That’s because I gave it to you an hour ago, and you fell asleep!”

“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!

Well, it was Ash Wednesday, and after my blood pressure came down, I realized what I needed to do.  This year for Lent, I am going to allow the other person (especially my son and my husband) to have the last word. I am going to try to keep my mouth shut and give up “always needing to be right.”

For me, that is a true sacrifice.

What will you do?

“It’s better to be kind than to be right.”   Anne Lamott

Taking the Good with the Bad

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!