Today I am thankful for the opportunity to be crucified with Christ and still:
- Be thankful!
- Count my blessings!
- Praise Him!
- Worship Him!
- Bless Him!
- Bless others, including my enemies! (of which the cross of Christ has many)
- See the light at the end of the tunnel:)
- Be a vessel for Him!
I keep a mental list of my "joy brothers and sisters in Christ"... you know... the ones who see the cup half full instead of half empty. They're the ones who encourage me. Today, I want to tell you about 3 of the 6 Joy Sisters who I have had on my mind recently. These three have children with great special needs! These three deal day in and day out with things that are not "the norm" for most people. I deeply love how I see Christ in each of these sisters. I will share them with you in the order that I came to know them:
BRENDA and I met in June of 2007. The church at Pitman was considering hiring my husband, Steve, to be one of their ministers and Brenda and I connected immediately. She has 2 children with special needs. Even before Steve and I made our final move here, Brenda was sending me cards and we were getting to know each other better. She spent many hours working alongside me, helping me unpack. I learned that Brenda knows a thing or two about really really hard times (death of her only sister, special needs brother, etc.). Yet, I quote Brenda, "It is what it is... it's not about me!" "I choose joy!" I volunteered to work with her children.. be an advocate with the schools. I "tutor" in exchange for John mowing our yard (I get the best end of that deal!) Last Tuesday afternoon, I asked Brenda and Marlene to be speakers in one of the three Human Exceptionality classes that I teach at a nearby university. I gave them both A's for their presentations: A for Amazing! A for Awesome! On Thursday, I asked my students to write some reflections or "Aha! moments" about listening to these two women. Here are four of the comments written:
- "Brenda put me in awe of how parents of children with disabilities completely change their lives to accommodate their children. She does an amazing job! I found all the sensory problems that go along with autism really interesting. I enjoyed hearing about the sensory therapies used to stimulate or calm children with autism."
- "Brenda’s speech really hit home for me. You can tell that this mother would go to the ends of the earth if she had to for her son. Brenda didn’t just throw her son in any school. She found the right one for him. Brenda’s speech and the way she talked about her son with so much love for him absolutely made my heart hurt. It hit home for me when she said, “They look normal from the outside but they’re not!” It made me think of my step-sister who has Asperger’s. We all have such a hard time interacting with her. I know in the past I’ve been harsh and I realize now that her autism has been the problem all along. She looks like us, so we just assume that she’s supposed to act like us. I have such a different perspective on her now and how I choose to interact with her, since hearing Brenda speak."
- "Children with autism take things literally and every child’s autism is different. As far as medication, Brenda said, 'it is not about what’s easier, it’s about what’s right for the child.'”
- "I find it amazing that the school did not help her find the right placement for her son. She had to go look at seven schools to find a place for her child to get into."
MARLENE and I met when I returned to South Jersey in August of 2007 to look for a house. I was there the night her husband was baptized into Christ. It wasn't too long after moving here that we began to talk about the overwhelming challenges of raising a young child with PKU. I volunteered to be an advocate for their family in any way that I could to bridge the gap in helping people to understand. There had been alot of judgment from others about diet, discipline, and behaviors of her son. Not too long after getting to know Marlene, their home burned and they had to live in a motel and, well you guessed it...life was crazy. Marlene is an overcomer who often gets discouraged (but who wouldn't), yet she bounces back. Just yesterday, she and I had some emails back and forth to each other and I got another glimpse at the heart of this woman. She ended her email with GIGATTAATTGIG! Here are 4 comments about Marlene's presentation in my class last week:
- I had never heard of PKU, so the entire presentation was an “Aha!” Moment for me. I knew about the pricking test infants receive but now I know it’s a newborn screening test for PKU. I learned how the disease affects the brain if wrong foods are ingested. Emotionally, the presentation was awesome. I loved hearing how involved parents can get in advocacy. The work and fighting parents will do to insure the best lifestyle for their children is incredible.
- I was unaware what this disability was. Marlene did a great job of providing informative facts to help me better understand PKU. One thing that stuck out for me was what a strict diet they had to be on, purchasing everything Evan eats from a special organization. I was also taken back that Marlene’s insurance doesn’t cover Evan’s food. It’s unbelievable the amount of money they spend per year just to make sure their son gets proper food.
- I thoroughly enjoyed Marlene’s presentation. The information was fascinating and something I had never heard of prior. I learned that with Evan it’s not just following a special diet. He has so many other needs and learning issues. I learned that as a parent you must be resilient. Marlene is so involved in her son’s life and school. I thought it was amazing that she goes out of her way to bring special foods to Evan’s class party just so he feels like a “normal kid”. What a great mom! Something she said stuck with me, “Mourn the losses!” She said that you have to realize that your child isn’t going to be able to do everything other kids do, and it’s okay to accept that.
- Aha! PKU affects the brain and can lead to learning disabilities or worse. Aha! Children with PKU cannot eat protein. Aha! Certain foods can affect brain cells in children with PKU... ...I enjoyed listening to both of the speakers yesterday. Both of them shared unbelievable stories and they are truly amazing mothers. No one knows how hard it is to have a child with PKU or any other exceptionality. Hearing about their stories instead of reading about them makes things a lot more emotional.
I have seen MARLENE repeatedly make conscious decisions to rebound... to persevere... to endure... after some quite discouraging circumstances. Forgiveness is a decision! Love is a decision! Joy springs from a thankful heart!
CRISTI and I met in January of this year. My niece Vanessa and Cristi attend the same church in Fairfax, VA and live quite close to each other. We live 18 miles SE of Philadelphia and Cristi and her daughter, 3 year old Lauren, came there to Children's Hospital Of Philadelphia (CHOP) to await a heart transplant for Lauren. It's been a long 3 months and still no heart. Well, there was one and at the last minute it was rejected because of a virus in it. (Oh, the raw emotions!) Both Cristi and Lauren are showing signs of the wear and tear. Lauren has been in and out of the hospital over 20 times in her young life. Cristi is one of the few mommies who stays round the clock in the hospital (Daddy Tim and grandmas and grandpas are caring for the older two kids). Did I mention that Lauren is not the only one of Cristi's children with health challenges? I have tried to visit Cristi at least once a week and I know that's not enough. Just when we had it worked out for women from church to relieve her on a regular basis, the hospital put a quarantine to keep all the flu type germs away. Last Monday night, Steve and I took Mexican food and we ate with Cristi from about 8-10 p.m. The food was fine! The fellowship was wonderful! She has sometimes had to go 10 day stretches without visitors. Yup! (our joke!) Here are four comments from Cristi's Saturday post, on her blog, as she made a conscious decision to count her blessings no matter the circumstances.
"Instead of focusing on all the little things around here that are starting to get on my nerves, I've decided to "count my blessings" and I'll share a few tonight.
- Internet: We have wireless internet throughout the hospital. That means that I can at least keep somewhat in touch with everybody. Tim jokes that I get all my news via Facebook. That's not entirely true -- sometimes I open the free Metro newspaper that I pick up in the mornings. Wireless internet also means that I can watch movies and TV shows after Lauren goes to bed.
- Child Life: I'm really not sure how well we'd be doing if we didn't have the Child Life specialists to help plan activities, provide toys, hold our hands during procedures, advocate on Lauren's behalf, and so much more. Last Friday night, one of them kicked me out of the playroom and stayed late playing with Lauren so that I could eat dinner with Tim.
- Awesome grandparents: Addison and Brennan are doing quite well, and we're very thankful for the help of Oma and Col. Opa, and Nana and Papa. Both Nana and Oma tell me how much the kids are learning in school, how helpful they are being, and how much they're eating.
- An outpouring of support from all over: It is such a comfort to know that there are people all over the world praying for Lauren, and we truly feel loved. We've received all sorts of care packages to make our stay easier. I could go on and on, but I'll just share one small story from this week. The other day, Lauren was coloring with markers in the playroom. I later realized that we had coloring pencils, watercolors, crayons, and coloring books, but no markers. I figured that I could pick some up the next time I went out. The next night, I was trying my hardest to keep Lauren on a mat in our room so that she wouldn't get hurt if she fell. We opened a package that contained not only markers, but also glitter stickers and jewels that provided enough entertainment to last for more than just that evening that I was trying to fill."
In the short 3 months that I have known CRISTI, I have seen her repeatedly make conscious decisions to bless others in spite of her difficult circumstances. Forgiveness is a decision! Love is a decision! Joy springs from a thankful heart!
- Each of these three sisters are on a journey (as you and I are) of learning to REJOICE in the midst of great trial and persecution...