Must Be Nice

                         
                  Must Be Nice

 I have heard this phrase many times and have said it even more. Someone tells me their kids sleep until 8 or 9 in the morning or take 2 hour naps during the day or they just won free pizza for a year..."Must be Nice". Yes, I've said it, and now I'm sorry I ever did because it just sounds rotten. 

Several months ago a new neighbor was walking her dog when the bus picked my boys up for school. After the bus pulled away, she asked if it went to their school. I said yes, it goes to "said school". She was amazed that the buses pick students up at their driveways, so I explained to her that it was a "special needs" bus and it picks students up at their houses. And then she said it.."Wow, must be nice." Now, I'm sure she wasn't trying to sound mean and snarky but...wellllll...she did! The nice prayed through person in me thought, yes it is nice. It is so nice, you have no idea. I love that I live in a county that can provide such wonderful resources to families with children who need it. I love that I can see my boys off right at the house and that when the weather is bad we can wait inside until the bus comes. Then there's that other person in me who wants to scream. I try to keep her subdued...only by grace do I manage this. I want to scream...YES! It must be nice that your kids can walk to a bus stop, can climb the steps on their own, can sit in a seat without having to be strapped in because they have little upper body control! Heck, they could probably walk to school if they wanted or ride a bike..MUST BE NICE!! See that, what I just did there...rotten.

So I never said anything, I smiled as I often do and carried on. Until...the most Amazing and Fabulous news came that the boys were getting their Make-A-Wish!!! I may have shared my excitement with the wrong people...you know how the Bible says not to cast your pearls before the swine..well I guess I just never expected that I knew any swine. No, I never expected to hear "Must Be Nice" from, well from anyone in regards to a MAW. It makes my throat tighten to think about it. 

It is nice! It's absolutely a gift that these programs exist. It is so fabulous that they plan everything out for you down to the last detail. They make it all about the child. These boys will feel like absolute Rock Stars! For a brief time they will not be those boys with A-T. A-T is never invited on these trips. We will make memories that we can look back on, we will laugh til it hurts, we will indulge in tons of ice cream, we will take thousands of pictures and videos, we will not think about the future, we will not think about blood draws, therapies, and Dr. appts. So when you say it must be nice, I say yes it absolutely is and I am so thankful for it! But, it didn't come across that way. It came across rotten.

You see, the reason my boys get a Make-A-Wish, and they get it so quickly is because they are terminal.

That probably didn't register with you, and that's okay. I smiled and carried on. You will have years and years of family vacations and memories as you watch your children grow older. You will attend their sporting events, school graduations and see them off to college. You will be there on their wedding day and be able to hold and love on your grandchildren. You had no idea what you were saying. You have no idea how I wake up everyday and need strength and grace just for this day because the battle is long and lonely. Or how hard we fight for equal opportunities in education. How just going to the dentist is mentally and emotionally draining. How exhausted their little bodies are after a half day of school. How they will never be able to ride a bike. How children stare at them because of the way they move and the helmets they wear. How the intense guilt that rises up can eat away at me, because they were born with A-T, they had no choice. How they are going to suffer because of our bad genetics. How at night I go in and speak over them and cry out to God to do a miracle. How BADLY I wish it would be me instead of them!! And how they are going to die without ever really getting the chance to live. But you didn't know that when you said that one little phrase, you just had no idea. 

But then, you may never experience the grace of God like I experience everyday. The strength that he gives when I need it. The words that he speaks when I'm confused and weary. Forgiveness and mercy when I'm lacking. You may never learn to trust God in the capacity that I have. You might falter in the storm, rather than rise up. You might not understand the sovereignty of God. Your first response to adversity might be to try to remove it, mine is to understand that, that is God at work in my life. Because knowing that my boys have a fatal disease and a life expectancy of teen to twenties did not break me, but brought me closer to God than ever before. My focus cannot be on the trial itself, but the purpose of the trial and what God is working within me. He renews me day by day and I only get through each day by his grace. Because now I understand what Job meant when he said, "though he slay me, yet will I trust him". God has given my family an Awesome responsibility, because he trusts us. I guess the Bible says it best...

1 Peter 4: 12-13

Dear friends, don't be surprised at the fiery trials you are going through, as if something strange were happening to you. Instead, be very glad-for these trials make you partners with Christ in his suffering, so that you will have the wonderful joy of seeing his glory when it is revealed to all the world.

And that IS nice.


 

Pot or Not

WHAT??? This image strikes fear in the heart of parents everywhere. This is a topic most people would rather not discuss. Marijuana is a drug..and it's illegal for crying out loud! Yes and yes, but what if it stopped your child's severe seizures and gave them a chance to have a better quality of life? What if it helped your child's neurological disorder? Recently CNN ran an article about the use of cannabis to treat a child's severe seizures. Read it Here. Now you may already have a vision in your head of a small child sitting in their booster seat smoking a joint. Not so, the oil is used from the cannabis plant, which is high in CBD or cannabidiol, which has medicinal properties but no psychoactivity. It is also low in THC, tetrahydrocannabinol, the compound in marijuana that is psychoactive. It is typically added to food and absorbed into the bloodstream that way.
      After each of my three cesarean sections I was given a drug called Oxycodone, for the pain. It impaired my ability to function, it made me feel really strange. It was also formulated in a pharmaceutical  laboratory with who knows what else in it and multiple side effects. It is also a drug that can be abused like any other drug that gets into the hands of humans. I fail to see how it is any safer than say...cannabis. I'm not pro or con on this issue...I'm just trying to gather more information because some of the results coming from the research and use of cannabis oil are very interesting to me.
     While at the AT (ataxia-telangiectasia) clinic at Johns Hopkins, the neurologist told us a story. He told us of a mom who went to pick up her son at a friends house. Her son has AT. Once he was loaded in the car, she began to ask him about his day and what he did and etc etc... Well, much to the surprise of the mother her son was answering in clear, concise sentences. She was so surprised and shocked she knew something had to have happened to make such a drastic difference. Come to find out, the young man had been smoking marijuana with his friends. The neurologist indicated that it effects a certain area of the brain that could cause speech to become clearer and to cease tremors and involuntary movements. This is very intriguing because my two sons have AT. If at some time down the road, research shows that the use of cannabis oil will drastically improve the quality of life for someone with AT, would I give it to my children? Hmmmm... My 5 year old had cancer..he's been pumped up with drugs that are meant to practically kill you..he was on 13 different medications when he left the hospital after transplant...he was on medications to treat the side effects of his medications. It just doesn't make sense to me why this is okay, but giving cannabis oil to a child to treat severe seizures is not.
    I'm not claiming to be at all educated about all the details surrounding the controversy of medicinal marijuana use. I grew up in California..I know pot people! I've seen it grown in dorm rooms in college, smoked openly in parks and beaches. I had pot smoking hippie parents. I may have even tried it myself...ha no...like Clinton, I never inhaled! I think more research needs to be done, but I'm not close minded on the topic. I think it will be very interesting to see how it all plays out. I'm curious about your opinion, what do you think?

The month of "GOLD"

I will never get tired of saying it, regardless if you get tired of hearing it. September is pediatric cancer awareness month. It's the one month out of the entire year where it might be possible to raise some awareness and raise some money to help fund research for pediatric cancers. Cancers..plural. One month...30 days. Every day, 36 children are diagnosed with cancer. Cancer affects all ethnic, gender, and socio-economic groups and more than 40,000 children undergo treatment for cancer each year. (Curesearch)
Pediatric cancer is so seriously underfunded and unnoticed it is positively shameful!!! These are children, and should be in the forefront of cancer research. But yes, I have to admit, I never gave it much thought myself until it took over our lives. When I became a mom I worried over things like colic and constipation. These were big concerns...breast or bottle...binky or no binky...co sleep or crib...then cancer hit and it became, Children's or Georgetown...Cisplatin or Doxirubicen...transplant or death. I'm not going to load this up with research funding statistics because it it HORRIFYING!!!!
American Childhood Cancer Organization It's true...kids can't fight cancer alone. The families can't do it alone either. So much more needs to be done. So please...let's not forget about it October through August...would you if it was your child? Go MOM On Cancer

Courageous, Overcomer, More Than a Conqueror!!

Back to School

The time has come for shamelessly posting picture after picture of children in their new "First Day of School" duds! I've done it before, and I will do it again.

My 4 handsome little men. Levi started 4th grade! Crazy, where has the time gone? Luke started Kindergarten...Yikes! Luke goes to a full day of school, which is just what he needed. He goes to his DHH teacher in the morning, then after lunch he goes to afternoon Kindergarten. Joshua and Jacob have started their last year of Pre-K. I can't even begin to tell you how I feel about this. Here they are..the Fab 4. So far, Levi is loving school, however; it's only day 3. Luke won't tell me a thing about what he does at school, who are his teachers, or any detail at all about anything. He did open up that he wanted to be friends with a girl and she said, I don't want to be your friend, I want to be friends with someone else. This was especially devastating for him. Ahhh girls...they start breaking hearts so early. Josh and Jake did well their first day. Josh went straight to the Lego's and played and Jake only cried without clinging to me. Not bad, if I do say so myself. Today is their second day at school and both went into class and straight to the table, no fuss! I was so excited that I forgot to let her know they are wearing underwear, but I guess she will find out one way or another.

The house is so quiet, I can hear my thoughts having thoughts. Time to wheedle down the stack of to do's on my desk....after a steaming hot cup of Decaf Earl Grey with a hint of sugar and a drizzle of cream. This time I will not forget where I left my cup, and will not have to re-heat it or drink it iced :)

Beach Bound

Well we are headed to the beach. What's that? Why yes, it is the week before school, t-ball and golf starts. Well ya know, only a man would plan a vacation during one of the busiest weeks of my summer! I am determined to block out all the open houses and parent meetings I will be missing, and just enjoy my time lounging on the beach. Wait! Did I say lounging on the beach? Hahaa NO..I have been reading a novel where people actually get to do that, and I must have still been in the fantasy. I will be chasing 4 boys around, making sure two don't get sucked out into the ocean and cleaning sand out of places I didn't know existed, several times a day. If I can avoid a sunburn, I am doing good!

Ahhhh...the beach! My idea of a grand vacation is quite different. I'm more of a cabin in the woods kinda girl. If it's snowed in, that's even better. A fire, comfort food, and a good book are all very appealing to me. A very close friend of mine had recently introduced me to books by Grace Livingston Hill. I was instantly addicted! I have read all the ones that are free on Ibook and Kindle, and am now in withdrawls. If you have any kind of a romantic notion in you, you will love them. They are of course Christian as well, so they are clean :) I'm glad I got all that reading out of the way before heading to the beach..this way I'm not disappointed. The boys are all so excited to go to the beach that I can't help but be excited as well. It's about making memories together, and sharing moments. Besides, I like to go cold turkey on the first day of school anyways! It gives us all a little JOLT!

A Great Honor

I'm very excited about Pediatric Cancer Awareness month that is approaching. The month of September is "wear your gold" month! I am so honored to have been asked to speak at the Joan Hisaoka Gala being held in Washington, DC next month. I feel very blessed to be able to represent the Life With Cancer center and help raise funds for all the programs they offer.  I am going to post the video that they will be showing. It's a video we made last Fall, and I choke up every time I watch it. It makes me think..hmmm..I never really knew all what Levi was feeling and going through when Lukey was sick.  Afterwards, I get to share a little of our journey through cancer.

http://bcove.me/fxcouv1e

September is a good time to make donations to organizations raising money for Pediatric Cancer. CureSearch, American Childhood Cancer Organization, and Candlelighters are all great organizations. If you have several hundred laying about and you're not sure what to do with it, well buy some tickets to the upcoming gala and raise some funds for all the great programs they offer.
Joan Hisaoka Gala 
The Life With Cancer center did so many wonderful things for my family. Levi had a place to go where he could relate to other kids and what they were going through. He called it "his other school". I'm very thankful to them for that, and for making a huge impact on him. According to him, they always had Awesome pizza!

A New Season

This post is dedicated to Missy! My faithful reader and friend who keeps reminding me to post! Well it has been awhile since I have posted. I think I have been trying to maintain some illusion of normalcy..although normal is completely overrated. What is normal anyways? I think it's different for everyone. Our normal is constantly changing anyways. School is getting ready to start again! Wow..I am so excited about that. This has been a great summer with lots of memories made, but the noise and bickering and boys tussling in the other room will not be missed. Levi is entering 4th grade, which is crazy to me! When did he get that old? Luke is starting Kindergarten, and the twins will start their last year of preschool. Once all those buses have pulled away carrying my precious cargo, I will be sad and think, well all that noise wasn't so bad. Fear not..it will start up again in the afternoon, so I will sit and enjoy my cup of decaf Earl Grey without having to reheat it 2-3 times.

I'll just update you on the status of the boys health. We had quite a lot of appointments this summer, trying to get things done before school starts. Luke had his complete blood workup done and an ultrasound of the liver. Everything looks great!! Thank you Jesus! The twins had a protein assay done that we have not gotten the results back yet and a full blood workup from an immunoligical standpoint. Their immune systems are holding. They have a low IgA..but it is still about the same as last year. They are doing very well at writing despite what I was told last year, they can almost write their names entirely by themselves! Thank you Jesus! We did find out that Luke is not a carrier of the gene, but Levi is. Our God is a healer though, that I know for a FACT!!

I am finally bringing a dream into reality. I have had a project I have been working on for the last year. Well, with a great partnership with my friend Missy, I am looking to have the first of a series published. I can't wait to share with you what it is all about. We have several more in the queue, that are works in progress. The idea first came to me when I was on a tour of the Loudoun County Landfill with Levi's cub scout den. I know you are chomping at the bit to find out..but you will have to wait :) Missy is extraordinarily talented and is bringing it all to life! I have been praying God's favor on this project and I believe it will be Awesome!! More news on this..I promise!