Monday, June 27, 2011

Storms~










We were gathered for an afternoon on the beach at my friend’s home on the ocean. It was beautiful hot Florida day. Perfect in every way. The ocean was amazing with it's radiant shades of blue with small waves crashing the shore, above us the sky was blue and clear. The kids were in the pool and on the beach. Tommy was overcoming his fear of water and holding his breath, putting his head under. Big stuff for “Little Man” I sat in a chair and thought what a perfect day.  Around me, friends, extended family, relationships, encouragement, and thoughtfulness.  What a treat after a very busy couple of weeks for us.

When suddenly about three o’clock a storm came swopping in from no-where. I looked up and the most amazing shades of  gray, and black loomed around the house, cascading the ocean on each side also. Suddenly even the color of the ocean changed. It was a perfect picture of the storms of life.  None of us saw it coming and it sideswiped the rest of the afternoon for us. It gave me a picture and reached into my heart the passage from: Job 37:14

Job 37:14
New Living Translation (NLT)
  “Pay attention to this, Job.
      Stop and consider the wonderful miracles of GOD”

I am arrested in my tracks in the moment to STOP and consider this miracle in front of my eyes. I grab my camera to capture the breathtaking colors swopping in over us. My friend is trying to get me out of harms way, but I sense a reflection in the moment and pay attention to that still small voice inside, urging me to stop for the moment.

Then in the message it reads:
A Terrible Beauty Streams from God
 14-18 "Job, are you listening? Have you noticed all this?
   Stop in your tracks! Take in God's miracle-wonders!
Do you have any idea how God does it all,
   how he makes bright lightning from dark storms,
How he piles up the cumulus clouds—
   all these miracle-wonders of a perfect Mind?
Why, you don't even know how to keep cool
   on a sweltering hot day,
So how could you even dream
   of making a dent in that hot-tin-roof sky?











In this hot, steamy Florida day that was perfect in every way. I am arrested to look at the storm in the natural around me and how he the supernatural, orchestrating God gets our attention in a storm, if we will STOP and pray attention to the moment. It’s easy to get caught up in the EVERYDAY that floods our minds and hearts and not notice him in the middle of it.
Four days later I was at the same place and again the very same scenario unfolded at almost the same time. I could not help but ask and say: “ Lord, I am paying attention to the you in the storm around me. I am stopping in my tracks to be aware and awake to your hand. “
In the hard stuff around us, our God’s hand is very present.  (Even if we don’t see it)
This past week, a couple of storms gave me a “picture”  reminder of his very active and powerful ‘moving” right there in the middle of my day. I am listening and noticing the very present God who always has me covered and protected in the storm, and you to!

Friday, June 24, 2011

Special!


 Every time we arrive at Wolfsons for a special procedure. I am reminded of the battle many face ongoing in the rare disease and special needs community. A mom who tirelessly fights, instructs, challenges and protects on behalf of her child. (Dads too play apart here) We are here for an MRI of spine to see how bad the damage is on Tommy's spine/neck. An  xray back in the fall revealed subluxation on his C1 and C2. There was what appeared to be a lot of slipping. (as best they could see) The MRI is a better-clearer picture of what could be a problem. Today will determine how serious is the damage and if surgery is needed. Big head little body for so many years.(Go figure)

 

Mmmm. Gas makes me talk funny

  We have to be the first procedure, because RSS kids tend to be hypoglycemic and are at risk in fasting situations. This mom has a set of gloves labeled "special procedures".  Although very good at what they do at Wolfson's, they lack experience, and understanding, to give the support a mom like me, and he needs. They argue EVERYTIME over this very important need. I'm starting to win..
insistent that we give him fluids immediately. This early morning was no different, except that our nurse happened to be a PVPV mom who attends another local church. The head nurse was dogging me behind my back. BTW: I heard every word you said and yes I documented it. You really showed behave more professionally when mom is in the next "stall" and can hear you. HELLO......

I want DR Helfrich....he says.  




   Little man is known now at special procedures. They think he is something else. He is special! I agree.  Unique and special with alot of special procedures due to his rare genetic disease he was born with. His miss-diagnosis locally has caused a back up off catch up procedures this past year. Teeth issues, pop-corn seeds in nose canal. Nothing is simple with him. It's always special. The dictionary says special is: better, greater, or otherwise different from what is usual.  Yep; That is Tommy and ever-other RSS kid in the country, well honestly all our special needs kids.

Other special needs friend. Josh
Pre- procedure physical yesterday













 The last few years has opened my eyes and heart to the very unique journey of moms with kids with disabilities and rare disease. Everyday challenges that are emotional, financial, and physically draining at times.  Unique and special is this walk and one that was ordained for us to do. If your tired today, tapped and need a reminder. You can fight this fight and win the race. You have one going before you and working on your behalf. Don't give up in the daily fight, tap into him and allow him to help you. Lean into the others who have gone before you. Thanks Ally, Amy, Heather, Stacy, and RSS moms who help me to know we can stay in the game and make a difference.  Where ever you are on the journey you and your child are special! Stay in the game and remember you are not alone. EVER..... May his peace keep you.








Monday, June 20, 2011

The fight continues and we will WIN.

5 years of data 

Mommy and me riding out the storm














 It's been a whirlwind of a month in my families fight with rare disease. Dr Saal (Tommy's Genetics Dr and researcher from Cincinnati Children's) could only see me the week before school gets out. So I had to leave for three days to get the following done: His yearly evaluation by genetics, the sleep study,  feeding team appointment, along with xray's,  and blood work. ONE week before school got out.  I am a mom of 6th grader, 4th grader, and our sweet Tommy who has Russell Silver Syndrome MAT UPD7.   All three kids have needs and the timing was not so great. It's a super pressed time of the year for our family, but it had to get done, so off I went.  But in the going I got jazzed up again with CLARITY of understanding the complexity of handling his care and advocacy.  PASSION to not take no for an answer and not accept the delays.

I got to fly de plane
My BFF George always does it first











* The sleep study showed no hick-up.  We hear him stop breathing at night, gasping for breath.  Another mom and fighter for rare disease- with loads of experience has heard him and is sure he needs oxygen. We'll guess what during the sleep study,  he is fed oxygen thru his nose and he does not hick up. DUURRRR. Jacksonville just give my kid a machine. This is our next battle.... I am taking on this week. I may get my friend who's gloves are bigger then my experience to help me out. SOMETIMES we need each other.
* His height had less then 1 inch of growth in the last year.  Go figure...  His GHT has only been injected a month now.  No surprises here. His weight is one big concern also. Only 1 pound in a year. Hopefully-prayerfully, The combination of GHT and aggressive family support at making him eat will change this. Oh and the threat of a mic button if he will not eat.
* Our visit with the feeding team, left my head spinning. MAKE him eat. I had just gotten tired of the fight, and stopped pushing. The great team there jazzed me to come back and win.
* The blood test revealed we need to start monitoring his blood sugars. He fatigues easily and is cranky also. Waiting for the monitor to test blood sugars. This will come any day. He also is dropping ketones regularly. All new levels of managing and monitoring. Lastly, he has cardinal signs of ADHD. This explains the rough morning's for the last six months.
* This week we have a MRI of spine to see how serious the damage to his neck is from the years of trying to hold up that head with such a small body. I am really believing that there is no surgery necessary. Thankfully that rocking local anesthesia. Dr. with RSS experience will be with my boy again cautiously putting him out for the MRI.


Not liking these wires mommy
Let me show you how- says Tommy











Rare disease is ongoing. Initially we had the mis-diagnosis and the injustice of went with this. Had it been handled the right way I would not have had 39 appointments since January. Two of them being out of city. It's exhausting to see how SOME would give up in one way or another. Become laden with grief or loss. I probably have moments of those but they are VERY temporary. Usually opening up his word or getting someone who gets it to pray with me pulls me out quickly from staying somewhere I don't need to be.
YES, I get tired from this race some days, but then a day will surprise me and I will find "my fight" again and get back in the game. It's true that most the time Tommy's rare disease is treatable. My hope and prayer is that the mistakes that occurred will be "restored" back quickly to my son. That the loss of time for him, myself and my family will be redeemed. He is a delight, amazing, captivating in some ways. But what you don't see in his precious self is the time, effort, family dynamic that are evolving daily. Beth over heard me cancelling the trip to Chicago due to financial set- backs, to be with the other Magic families. Convention is a four day gathering of RSS families go to get information and support for the kids and meet others on the journey. She offered to give us her money she was earning house sitting to help us get there mid July. In tears she asked " When will it get easier for us Mommy" Yes- rare disease effects the whole family, emotionally, financially, and physically. We are grateful for having God at the center of our storm when it is windy. always reminded that yes, he calms the storm and settles the waves and helps us to win the daily battles.

People committed to helping us win.

NEW RSS friends took us to ZOO

Saturday, June 18, 2011

Life is too short...


Life is too short....  To leave regrets, things left undone, to not live freely in the day that is right in front of us. Many days we find not enough hours in the day, often  we leave unfinished business for the next day. The details, and tasks of the day swallow us up and keep us in river flowing. This past week was VBS at our church. Every year it is a river with a strong current's of fast furious nature, waterfalls with free falls. This year we had 170 kids, 78 volunteers, 170 parents dropping off kids. ACTIVITY and MOTION in it's finest. Music almost non stop in your ears for 3+ hours for five days. It's super fast paced, busy, and I get to spend the week coordinating and playing firefighter. (Taking care of problems and solving the issues that come up) It has been my privilege and honor to have been director for my husband for nine years. This us one VERY busy week that leaves me thinking about many as I ponder life and families.


I have loved certain aspects of this role. Leading the volunteer team, that we have watched grow and develop over the years is one of the things I cherish. I have watched mom's who step up and into places that were not always their gifting, because it was the right thing to do. In the doing of that I have watched them grow in who they are in him. I love seeing people using their gifts and abilities. It's amazing to see the teamwork and flexibility with so many different personalities. There are also the many families who sacrifice many hours to serve and make it happen. This year I watched families really tight already make huge sacrifices financially, (gas monies) families w/4+ kids arrive at 7:30 to serve, deacons who just did whatever was needed, station leaders who stepped in to fill needs, (that were not easy or natural fits). The list could go on and on.  All to teach Pre-K - 5th grade that YES they can connect with God. This week is about teamwork(working together) and kids. What KIDS? The blind girl, the one's who's dad is in prison, who's parents are getting a divorce, the one who has instability at home, the one who has no friends, the one who lost a loved one, the shy one's.

Days go by and things take our attention and time that are often of great value or sometimes  meaningless. Last week I saw many embrace the daily life to make a difference in each other, kids, and families. This was of great value!  New friendships, new understandings, new eyes to see and ears to hear what he is saying and doing. Fresh perspectives and openness to see afresh the work happening around us. It was great work for an amazing cause for bringing others to and in him. Life is too short and the work around us is deep and wide. So embrace today, look around you at the many living loud and faithfully to proclaim a message.  Life is too short~ Embrace the day- be awake to the POSITIVE work around you.  All around us there is something we can be apart of. Embrace, live free, healed and ready to proclaim what he is doing in you. Cause it's good~