Tonight

Tonight I got "kicked" out of the PICU. Not for bad behavior like some may think but because from 7-8 there is shift change. I went down to the cafeteria for supper. I chose a small table over in the corner so I could collect my thoughts & thank God one more time for the incredible blessings of today. As I was sitting there a mother with 2 smalls boys walked up to the table across from me. I noticed the boys had big brother shirts on. The youngest little boy smiled & waved at me. It made the mom turn and look at me. I could tell from the way she was walking that she had recently had a baby. I asked if they had a baby in the NICU. She said yes she was born Monday. She pulled her chair closer to my table & began telling me her story. Her baby was diagnosed with spina bifida at 23 weeks. Monday they did a c-section & brought her here. The mother was released from the hospital and came here to be with her baby for her first surgery. Tomorrow she will have surgery for a shunt.

As she continued to talk the baby's grandparents came up. You know I always wonder about someone's support system in this situation. In a few minutes the baby's great grandmother sat down. After that dad came walking up. He stood behind his wife in this large opening cafeteria and said the sweetest blessing. He thanked God for the blessings He had given them. The mother had told me earlier that she knew her daughter had spina bifida for a reason.

I don't know that reason. Maybe someone else in there saw & heard that daddy. Maybe that changed someone's life. I know from what I saw tonight that this family is going to be just fine.

Amazing God!

Color amazing! Sats great! Smiling & laughing! What an incredibly mighty God we serve! He went above & beyond anything I ever dreamed or wished for! So thankful & blessed!!!

Thank you to our nurses!

Here are the pins Marlee Anne made as a thank you for Mary Elizabeth's nurses. Praying for some awesome nurses to take care of her!

Prayers please

Tomorrow Mary Elizabeth will be admitted to Egleston for gtube surgery on Thursday. That is as long as the anesthesiologist says the benefits of the gtube outweigh the risk of her being sedated because of her mitochondrial disease & respiratory issues. We know the benefits first hand but understand how great the risk is. I have gone into defensive mode already & put my bulldog skirt on. Please pray for protection over Mary Elizabeth's body during the surgery, peace for us as we wait, peace at home for our children & those taking care of them. Please pray for God's will. Thanks so much for the love & support during this time.

I'm a Little Tea Cup!

I'm a Little Tea Cup
There was a couple who took a trip to England to shop in a beautiful antique store to celebrate their 25th wedding anniversary. They both liked antiques and pottery, and especially teacups.

Spotting an exceptional cup, they asked "May we see that? We've never seen a cup quite so beautiful."
As the lady handed it to them, suddenly the teacup spoke, "You don't understand. I have not always been a teacup. There was a time when I was just a lump of red clay. My master took me and rolled me, pounded and patted me over and over and I yelled out, "Don't do that. I don't like it! Let me alone," but he only smiled, and gently said, "Not yet."

Then WHAM! I was placed on a spinning wheel and suddenly I was made to suit himself and then he put me in the oven. I never felt such heat. I yelled and knocked and pounded at the door. "Help! Get me out of here!" I could see him through the opening and I could read his lips as he shook his head from side to side, "Not yet."

When I thought I couldn't bear it another minute, the door opened. He carefully took me out and put me on the shelf, and I began to cool. Oh, that felt so good! "Ah, this is much better," I thought.
But, after I cooled he picked me up and he brushed and painted me all over. The fumes were horrible. I thought I would gag. "Oh, please, stop it, stop, I cried." He only shook his head and said, "Not yet."

Then suddenly he puts me back in to the oven. Only it was not like the first one. This was twice as hot and I just knew I would suffocate. I begged. I pleaded. I screamed. I cried. I was convinced I would never make it. I was ready to give up. Just then the door opened and he took me out and again placed me on the shelf, where I cooled and waited and waited, wondering, "What's he going to do to me next?"

An hour later he handed me a mirror and said, "Look at yourself." And I did. I said, "That's not me. That couldn't be me. It's beautiful. I'm beautiful!"

Quietly he spoke: "I want you to remember. I know it hurt to be rolled and pounded and patted, but had I just left you alone, you'd have dried up. I know it made you dizzy to spin around on the wheel, but if I had stopped, you would have crumbled. I know it hurt and it was hot and disagreeable in the oven, but if I hadn't put you there, you would have cracked. I know the fumes were bad when I brushed and painted you all over, but if I hadn't done that, you never would have hardened. You would not have had any color in your life. If I hadn't put you back in that second oven, you wouldn't have survived for long because the hardness would not have held. Now you are a finished product. Now you are what I had in mind when I first began with you."

The moral of this story is this: God knows what He's doing for each of us. He is the potter, and we are His clay. He will mold us and make us and expose us to just enough pressures of just the right kinds that we may be made into a flawless piece of work to fulfill His good, pleasing and perfect.

So when life seems hard, and you are being pounded and patted and pushed almost beyond endurance; when your world seems to be spinning out of control; when you feel like you are in a fiery furnace of trials; when life seems to "stink", try this.

Brew a cup of your favorite tea in your prettiest tea cup, sit down and think on this story and then, have a little talk with the Potter.
God Bless You!

He lives!

I woke up this morning with these words on my heart & mind. He lives, He lives, Christ Jesus lives today!
He walks with me and talks with me along life's narrow way. He lives, He lives, salvation to impart!You ask me how I know He lives? He lives within my heart.

I was immediately taken back to when I was a child at Calvary Baptist Church. On Easter Sunday you walk in with your Easter best on. My daddy with his suit & tie, my mama with her dress, hat & purse, then me with my new dress, new shoes, hat, purse & gloves.

As I was thinking back to those days I thought how very important it is for us to always have on our Easter best. Not the clothing but you know that feeling that we have in our hearts on Easter. We are dressed in our finest and don't want to get dirty. We want to walk into the Lord's house and Him be proud of us. How true for our everyday lives. We want to look and act our best for God. We don't want to get dirty from the world and all the temptations.

Let's think of it for a moment. What if everyday we were able to go to God's house to sit and worship. Wouldn't that protect us from the world? Ok so everyday we can't literally sit in His house but we can certainly sit in His presence. Start our day out in His word. Allow Him to surround us, our hearts, our bodies, our thoughts, our homes and our work places with His love and protection from the world so we don't get dirty. We have now armed ourselves with Christ and are ready to go into the world to share the love of God that many may never know if not for us.

The other day as I was talking with someone they said they don't know how to witness and share Christ love with someone. I told them that I am far from an evangelist. God will use anyone that is willing & when He puts us in a place He will give us the words if they are needed. Many times it has been a smile I have shared, a hug, a meal or filled whatever need they had.

My prayer today is that I will carry this Easter heart and spirit with me through this year not only just today. I am overwhelmed when I think of what He did for me, for us. I am amazed that what He ask from us in return is so very simple and easy. I am in awe at what lies ahead of me in His kingdom of glory.

I trust that each of you had or are having a beautiful Easter Sunday filled with an overwhelming thankfulness of what Jesus did for you!!!

2012 Masters

Mike & I are headed home from the Masters so I will make this quick so I can spend more valuable time with him. I had to share this right now because I wanted ya'll to feel just a taste of what I experienced today.

First we were blessed with tickets to the Masters. Then everything fell into place for our children to be taken care of while we were gone.

Our Masters angel provided chairs early in the morning so that we had front row seats to see Jack, Arnie & Gary start the Masters. As they walked out I cried. I have seen them before but this was so very special. Really awesome men in my opinion.

Because we had such awesome seats we sat there to watch some more of the great golfers. We met some really colorful people that we enjoyed talking with. Internationally & domestic. One we knew right away was Canadian thanks to our wonderful friends from Canada. LOL!!!

We had our picture made in front of the clubhouse, had lunch & then made our way all around the course. It was an incredibly beautiful day that we are so blessed to have God lay put before us.

The only thing I didn't get was a green cup (cause it had beer served in it) but it was a cool green cup. Also I just knew I was going to catch a glimpse of David Feherty. Didn't happen this time.

Thanks so much to all of you that made today happened & for praying for us!

Kelli
http://nomatterwhathappens-kelli.blogspot.com/
http://m.facebook.com/kelliskreations

Appt update

Well we are heading home from our whirlwind appts. It's a long day but easier to do it in a day than getting a hotel room & having to pack all the medical equipment for one night.

Mary Elizabeth & Abe both were due for X-rays. Mike & Marlee Anne took them while Michala & I answered all the nurses questions to update everyone's charts.

Dr. Westberry saw Abe first. He said his X-rays showed the bones in his feet out of place from clubfeet. He said that if they started giving him trouble he would do surgery.

Michala was up next. Her spine looked good. When she checked her stump she could tell right away how sensitive it is. Michala has been having some pain with it. She suggested trying some neurontin but we have to check with Neuro to make sure it's ok with her other meds.

Mary Elizabeth's curve was slightly worse but she suggested just to watch it which we were perfectly happy with. Her hip is slightly more uncovered than it was & stretched but she said not too bad. She suggested trying some baclofen to help with the tightness in her hamstrings.

All in all good appts & we don't go back for a year. Yay!!!

On the way there we got a call from our sweet friend Connie. She said her friend owns a restaurant in Greenville & would like to have us there for dinner. Well if you are ever in Greenville stop by the Fitzpatricks Pub. The food & the service were great! What a wonderful treat & such a blessing.

If you read this before midnight please pray for our trip home. Mike driving & not getting tired. Please pray the children & I ride well without getting upset. So far that's not working so well because Michala is very unhappy.

Thanks for the prayers for a safe trip there & good appts!

Update

> While we are traveling to Greenville I thought I would try to get caught up on updates.
>
> Friday we met with the surgeon about Mary Elizabeth's gtube. She said that her part is no problem but she is concerned about her being put to sleep. When we meet with the anesthesiologist team if they give us the ok her surgery will be done. She is scheduled to be admitted on April 25th for fluids & pre-medication. Please pray the insurance approves that. Her surgery is scheduled for the 26th. She will have to stay at least 2 days so that the stitches can be removed. Please pray for God's will to be done. We have put a lot of prayer into this. As she gets older she gets very tired while eating. We know the benefits of it but want to be sure that outweighs the risk.
>
> Michala is struggling with teenage years & increased seizures, strength & length. We are increasing her vigabatrin.
>
> About 4 months ago Marlee Anne starting having episodes at night where she would throw up. Sometimes she wakes up before & sometimes not. She is also having joint, muscle & stomach pain. About a month ago she started having severe headaches that come on quickly. We are trying to figure out what is going on with her. Still waiting on more test results. Please pray for direction & answers & complete healing for her. She is up & about doing her regular schedule. We try not to talk about it unless she brings it up & wants to.
>
> We know that no matter what, like always God has this. It's just hard for me to accept that our only healthy child may be sick.
>
> As long as Abe is taking the new medicine his stomach is not bleeding. We have to discuss with GI how long he can be on this medicine before something has to be done. Again not sure the risk of putting him to sleep is worth it or warranted.
>
> This kind of feels like a heavy email. Sorry for that. I will share that Chris Tomlin's How Great is Our God has been on my heart & lips lately. Also this morning Aunt Nay reminded me of Mandisa's Stronger. Thanks so much to each of you for continuing this journey with us, lifting us up, standing in the gap & joining us in prayer!
>

I'm not home yet!

WOW! What powerful words!

We were purchasing one of Abe's seizure medications from Canada because it wasn't available in the US. Well now it's FDA approved & I was told today our wonderful (sarcasm) insurance is not going to cover it. Well I went to the pharmacy because this awesome pharmacist was being so helpful with it. (that part was just because I needed to get it off my chest & share why God took me out of the house tonight & was able to get my attention in a mighty way)

When we are all in the van together we usually don't listen to the radio but since I was alone tonight I did. This song came on. The chorus goes, All I know is I'm not home yet. This is not where I belong. Take this world and give me Jesus. This is not where I belong. The song is by Building 429 and it's called Where I Belong.

Mike & I often talk about not "fitting in" here. So many times I think it's because we are a different family. Family and friends go out to dinner, movies, & shopping. Couples go out together. Families get together. Families go to church or events. Often I feel the world goes on with their lives while we are just here.

As I listened to the words of that song God reminded me to be thankful for our differences. To be thankful that we don't "fit". The reason we don't fit is because we don't belong. We are here for a purpose. We are heading towards our home.

What an incredible peace to know this is not our home. Better things await. What a glorious day!

Kelli
http://nomatterwhathappens-kelli.blogspot.com/
http://m.facebook.com/kelliskreations

UGA Miracle Dance Marathon 2012

As I searched for a scripture that relates to what these incredible UGA students are doing I found Acts 20:35. In all things I gave you an example, that do laboring ye ought to help the weak, and to remember the words of the Lord Jesus, that he himself said, It is more blessed to give than to receive.

This morning in my inbox was a great devotion from my precious friend Courtney. The scripture was, Carry each other's burdens, and in this way you will fulfill the law of Christ. Galatians 6:2. So fitting.

Back in the summer I received a phone call from a precious UGA student named Calli. We had the most wonderful conversation. She wanted to know if 3 of our children would be miracle kids for UGA miracle. Apparently our sweet friend Kylie had given them our name. Well absolutely. If Kylie was part of it & thought we should be we were there.

The first event we attended was at the zoo in Athens. I know many of you are going there is a zoo in Athens. Well yes there is. Very nice one too. It's called Bear Hollow Zoo & it's filled with Georgia'a native wildlife. We saw several animals that had been rescued & were there for rehabilitation.

Soon we met our family partners Sara Bess, Emily & Kayla. What beautiful girls & precious spirits about them.

The big event was this weekend at UGA. It's called Dance Marathon. There are about 1,000 UGA students giving of their time & love for our children & all the miracle kids.

This was our first time so we weren't sure what to expect. Sara Bess was waiting for us when we got there. There was a family corner where we got settled & waited for time for it to start. Soon Emily & Kayla joined us.

Opening ceremonies included all the families walking in with their teams. Throughout the 24 hours the colors have different competitions. We were the silver team. When we walked through the 1,000 students minus family partners were lined up on either side for us to walk through. You know how the players run through with the cheerleaders lined up on either side. Well it was like that. The students were our cheerleaders. Well Mary Elizabeth was in her element. All eyes on her with lots of cheering & praise. She loved it. I have to say even daddy who doesn't like the limelight was so proud to be pushing his angel. Michala didn't care who all the commotion & excitement was for she just loved it. She saw 1,000 students that would clap with & for her for 24 hours. Marlee Anne thought it was cool & Abe was just not too sure.

Soon it was time to eat. Really?! We ate every 4 hours. I am telling you they thought of everything. Ok maybe not "real" coffee but besides that everything!

Throughout the day & night families shared their stories. Oh wait I didn't tell ya'll. UGA Miracle does all this For The Kids (FTK). They raise money that goes to all 3 Children's Healthcare of Atlanta locations to help the kids. Well we get to hear other families stories, meet new families & hang out with families that walk through this journey with us.

Some how, not sure when it happened Mary Elizabeth found a UGA student to fall in love with. She had this look in her eye, smile & giggle each time he walked up. His name is Michael. He is this big tall guy that towers over Mary Elizabeth is her wheelchair & she loved it!!! She recognizes those who have a special heart & she recognized him right off. I didn't even get a picture of the two of them together. Oh well next time!

Mike had to come back home midday for Celebrate Our Home. Our family partners were so great & such a huge help during this time. I even got to walk to Jittery Joes with my dear friend Rachel during this time.

It was time to eat yet again. Sandwiches from Schlotzsky's. Yum! I have to verify but I think all these places donated food. Our first meal was provided by Chick-fil-a.

Mike was back with guitar & drum in hand. Marlee Anne was going to play the guitar while Michala was playing the drum. Afterwards we were scheduled to speak. Marlee Anne got up on stage & froze but Michala had no problem rocking it out. She loved the attention.

As I began to speak I wanted to thank the students but the words didn't seem to flow. Over 100 students pledged to stand for 24 hours. 24 hours without sitting down. When I heard that Trey was doing that I was blown away. Then I found out most if not all executive board was doing that. Then more & more I was seeing the 2012 race numbers for those standing 24 hours for our children that cannot stand. Our 3 children that use wheelchairs are not using them because they get tired but because their legs are not strong enough for them to stand. Michala could if she had a prosthesis but because her seizures are so hard it would be very dangerous. So these students standing for 24 hours for kids that cannot stand had a huge impact on me. It meant more to me than they will ever know.

There was something going on the entire 24 hours. I missed some of the families sharing their story. The ones I heard were so touching & life changes even the stories I already heard before in the past from the families we are friends with.

At 6 the family partners stayed with the children while the parents went out. Abe was having a tough time so we hung around. Mike went & got sushi for he, Marlee Anne & our family partners but I chose Longhorns which was right beside there. Our longtime dear friends Shirley, Kaitlin & Ashlen who live in Athens came over to spend some time with us. They brought Gigi's cupcakes. I think they were for Michala but I limited her to one so we could have the rest for our 2:00 AM treat. Man they were good!

After getting the meds done & everyone ready for bed we headed to the hotel. Again something I need to check on but I think the hotel rooms were donated by local hotels. We were staying at the Country Inn & Suites. We got everyone settled & Shirley took me back to the college. After a stop for a "real" coffee to help me through the night.

Shirley & Ashlen stayed with us to watch the hypnotist. WOW! That was amazing & hilarious beyond words. I was so sore from laughing so hard.

There were times when I questioned whether Marlee Anne & I were going to make it the whole 24 hours. It never failed one of students would come up to help us get through. Maybe a snack, a real cup of coffee or a game of spoons. Every time I saw one of the students that had pledged to stand for 24 hours it helped encourage me in a big way.

Our friends came back to speak at 5 so that helped to get us through those hours. Plus an awesome dad went on a Starbucks run.

Throughout the 24 hours the students were learning a dance. They performed it for us at the end. Wow! It was amazing. Michala absolutely loved it!

At the end was the circle of hope. The students had hospital bands on their arms with the names of the Miracle Kids & children who were hospitalized right now at CHOA. The students made a huge & I mean huge circle around the room. The families were in the middle of the circle with scissors. We were to cut off the hospital bands. As I started cutting off the bands the tears started to flow. I cannot put into words very easily what an impact that had on me. I cannot tell you how many hospital bands I have cut off my children's arms. Each one meaning different things, different hospital visits, different results but with the same meaning. When the hospital band was cut off it meant something was over, something was accomplished. Hopefully with great results. Each band I cut off I prayed for that student that was wearing it. I prayed their lives had been changed, blessed & enriched by what went on this weekend & by what they had accomplished. I prayed for the child or children listed on that band. It was overwhelming in a big way for me & our family.

This year UGA Miracle raised $312,000 for Children's Healthcare of Atlanta. Over the past 17 years they have raised 3 million dollars. Wow! That's amazing. This was done by college students. Not that I doubt they could. It's just that to raise that much money & orchestrate such a huge event like Dance Marathon takes so much time. So much time they could be using to do college stuff. They could be thinking of themselves but instead they are selflessly thinking of & working hard For The Kids. Our kids! To say I am blown away by it & them is putting it mildly. They are awesome! UGA Miracle ya'll ROCK! Many of ya'll took time to meet our children, spend time with them & talk to them. Even though you may not have gotten a verbal response from them you hopefully knew what your time & attention meant to them. The pictures show it especially Abe's look on his face with all the attention he got from the pretty college girls.

As we were leaving some of the students confirmed that you could wear pjs to class so I think Mary Elizabeth is so there if she were going to college. That means I can buy her some DAWGS clothes! Woohoo!!!

Thanks UGA Miracle for all you do!!!

Kelli
http://nomatterwhathappens-kelli.blogspot.com/
http://m.facebook.com/kelliskreations

Relay

Many of you have asked why we don't do Relay anymore. I don't want to start a debate but I do want to share & I think this sums it up. I think the biggest thing is to know your causes & what happens to the money when you donate & raise money for a cause. Thanks so much to all of you that supported us so greatly with this over the years.

http://curechildhoodcancer.ning.com/profiles/blogs/my-thoughts-about-the-american-cancer-society

Kelli
http://nomatterwhathappens-kelli.blogspot.com/
http://m.facebook.com/kelliskreations

Need to share

Ya'll I haven't shared these feelings because I thought they would pass quickly as they usually do. I think they are lingering because I have been so sick & I am exhausted. 

Anyway I have this heavy on my heart feeling the older I get about taking care of my children in later years. Then I worry about what will happen to them if something happens to Mike & I. 

I know without a doubt that God has this under control. It's all part of His plan but sometimes, like now it's hard to let go. It's overwhelming to think of taking care of 3 children with extensive medical issues who are completely dependent as we get older & they grow. 

I try hard not to dwell on it & most times if it comes to mind it does pass quickly. I thought maybe sharing my thoughts & feelings might help them pass & get off my mind. 

This is lots of rambling because I can not get my thoughts in order. I think I need to sleep.

Heart thoughts

Just needed to take a minute to share some thoughts.

Having one of my moments. I dislike this time of year really bad. Not the thankfulness or celebrate the birth of Christ but just this time. I miss my daddy & brother more than ever during this time & it seems to me our children's disabilities are amplified & they miss out on so much no matter how hard we try. If you understand how I feel I am sorry! If you don't understand how I feel I am so thankful!

For my dear friends who are celebrating this year without a loved one especially a child, my heart & prayers are with you. Thank you for allowing me a minute to share my heart thoughts honestly.

Michala's day

Well it's September 21st. It's Michala's day as one of CURE Childhood Cancer 2011 CURE's Kids Conquer Cancer One Day at a Time. To those of you that contributed all ready thank you so much! For those that are interested in donating there is still time.

We really appreciate all the support. Thank you!!!!

Kelli
http://nomatterwhathappens-kelli.blogspot.com/
http://m.facebook.com/kelliskreations

Amazing day!

Today our family had the privilege of attending Sunshine Family Fest at The Park Tavern at Piedmont Park for Camp Sunshine. It was amazing!

Always Saturday was the band who hosted it. KittyWolf and Mommie performed. The Monkey Dr was there too. I cannot wait to share the pictures.

I have a huge favor to ask. Always Saturday is giving all the proceeds of the downloads of their song Love is Plural to Camp Sunshine. My challenge is for everyone to give up something for one day that you would typically spend .99 cents on & go to the link http://www.alwayssaturday.com/10k.html to download the song. It's quick & easy & really a great song. Always Saturday's goal is 10,000 downloads for Camp Sunshine. Let's see how quick we can help them reach that goal. Thanks so much!!!

Kelli
http://nomatterwhathappens-kelli.blogspot.com/
http://m.facebook.com/kelliskreations

Hayden's golf benefit

Ya'll Hayden is a precious friend of ours that has Lennox Gastaut syndrome like Michala & Abe. This benefit it to be able to get Hayden a service dog that will help him lead a more childlike life without so many restrictions. The dog will be able to sense Hayden's seizures and help keep him from harm. Please consider playing in the tournament or making a donation to help this wonderful family that is so dear to us. Thanks so much!!!

http://gak9.com/events/hayden_golf_benefit.html

My Concern

Good Morning,

 I just want to share with you a concern that is near and dear to me. My concern " childhood cancer" . As most of you know I have four children, three of which have special needs. Michala our middle child not only suffers from an extremely rare disease called Acardi Syndrome ( affecting less than 500 girls worldwide) but she was also diagnosed with Angiosarcoma  a form of cancer that typically affects the elderly. Thankfully I am proud to say that Michala is a twelve year survivor of this dreaded disease. The purpose of this e-mail is to let you know that September  is childhood cancer awareness month. Some important facts: cancer kills more children than any other disease, less than 2% of all federal  cancer research dollars are spent on finding cures for our children, and still today childhood cancer has an 80% percent cure rate.  

 As part of cancer awareness month Michala was selected  to be one of the faces of childhood cancer and September  21^st is her special day. Along with this great honor 11 Alive news reporter Julie Wolfe came and taped a short TV segment  that was aired yesterday morning at 6:30 am. If you are interested I have attached the  two links below ( 11 Alive and CURE ) that will give you more detail about our "special child" and the many other brave and courageous children  who fight this terrible monster called cancer.

 

 

http://www.11alive.com/news/article/203004/460/CURE-The-Faces-of-Childhood-Cancer  Michala 's video.

 

http://www.firstgiving.com/fundraiser/michalahopkins - if you have surfed this link – thank you. If you have surfed this link and made donations – thank you for providing support for the cure. The short video by Jeff Foxworthy is worth the time to watch.

 

Finally, the whole purpose of this e-mail is awareness.  I have no expectations and you are certainly not obligated to contribute in any way. I  certainly hope that I have not offended you with the expression of "my concern" .

 

Thanks so much,

 

Mike Hopkins

 

Blue rose

Yesterday my most precious heartfelt friend sent me this. I didn't make time to read it yesterday but I did as I was having my quiet time this morning. I love God's timing because I needed this right now. I will let you read this and then I will share my thoughts (of course!).

Blue Rose
Having four visiting family members, my wife was very busy, so I offered to
Go to the store for her to get some needed items, which included light
Bulbs, paper towels, trash bags, detergent and Clorox. So off I went.

I scurried around the store, gathered up my goodies and headed for the
Checkout counter, only to be blocked in the narrow aisle by a young man who
Appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently
Waited for the boy to realize that I was there. This was when he waved his
Hands excitedly in the air and declared in a loud voice, "Mommy, I'm over
Here."

It was obvious now, he was mentally challenged and also startled as he
Turned and saw me standing so close to him, waiting to squeeze by. His eyes
Widened and surprise exploded on his face as I said, "Hey Buddy, what's your
Name?"

"My name is Denny and I'm shopping with my mother," he responded proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is
Steve."

"Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you
Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over from
The next aisle.

"You're fifteen-years-old Denny; now be a good boy and let the man pass by."

I acknowledged her and continued to talk to Denny for several more minutes
About summer, bicycles and school. I watched his brown eyes dance with
Excitement, because he was the center of someone's attention. He then
Abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking the
Time to talk with her son. She told me that most people wouldn't even look
At him, much less talk to him.

I told her that it was my pleasure and then I said something I have no idea
Where it came from, other than by the prompting of the Holy Spirit. I told
Her that there are plenty of red, yellow, and pink roses in God's Garden;
However, "Blue Roses" are very rare and should be appreciated for their
Beauty and distinctiveness. You see, Denny is a Blue Rose and if someone
Doesn't stop and smell that rose with their heart and touch that rose with
Their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who are
You?"

Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love
Living in God's garden."

She reached out, squeezed my hand and said, "God bless you!" and then I had
Tears in my eyes.

May I suggest, the next time you see a BLUE ROSE, don't turn your head and
Walk off. Take the time to smile and say Hello. Why? Because, by the grace
Of GOD, this mother or father could be you. This could be your child,
Grandchild, niece or nephew. What a difference a moment can mean to that
Person or their family.

From an old dandelion! Live simply. Love generously. Care deeply. Speak
Kindly. Leave the rest to God.

"People will forget what you said, People will forget what you did, but
People will never forget how you made them feel!" 

We have been blessed with 3 beautiful blue roses, along with a glowing sunflower. I of course am a dandelion and feel so unworthy at times to be among such rare and strong flowers. I hope that next time you are in the presence of a blue flower you will allow God to speak to you through them. Most people would or have said, but your 3 blue roses cannot speak. I must beg to differ! Even though they do not communicate with words their lives speak volumes. I have learned more from their lives than I have from Billy Graham, Abraham Lincoln and the finest teachers Newton County had to offer way back when. I hold those people I mentioned in high regard but still I have indeed learned more from the blue roses God trusted in my care. 

Jason Heyward & Dan Uggla

> Jason Heyward asked if we wanted more pictures. Of course we did! I asked Mike to turn Michala's wheelchair around & Jason said oh no I will come over there. That might seem like a big deal to some people but to us it was huge. That was very nice & unselfish of him. Definitely not arrogant like some. Thanks to Jason & Dan!
>

Coach Dews

>
>> Here is a picture it Coach Dews who is 72 years old with Marlee Anne. Really nice man!!!
>>
>>

Michala

>

> This would be Michala eating a whole funnel cake by herself at the Braves game saying "what game?!".
>

Homer

>

Jason Heyward

>

> Marlee Anne is quite proud of this picture. Kinda like I am proud of my hug from him. This is a big guy. Marlee Anne said did you see his hands. He looks like a basketball player she said. Another very nice guy!
>

A night with the Braves

I know another email in the same week. Wow! We are heading to Michala & Abe's neurology appts so I thought I would type this as we were going. We are praying for direction for their seizures. Michala is still having 2 really hard seizures a day. In reality that's really not bad & we know it could be worse. Abe is still having lots of them. They are changing or rather having some that are different looking. He has one med left to take and we were trying to hold off on it but now maybe it's time. Either way I am praying for peace. 

Last night the Miracle League sent us to batting practice with the Braves. Even though it was 500 degrees on the field we had an awesome time. As we walked out on the field the outfielders came over and gave everyone baseballs. I just envisioned as soon as they gave Michala her's she would throw it back to them. We told her it was for her & she held it. 

Ross who is the catcher came over & talked to us & signed baseballs & Marlee Anne's hat. Conrad came over & was very nice. Heyward came & man that dude is big. I will try to send a picture of hey & Marlee Anne so you can see how big his hand is on her shoulder. I went to shake his hand and he hugged me. Really nice guy too. He offered to take a picture with everyone & I said we would turn the wheelchairs around. He said no I will come around. Very thoughtful! 

While Heyward was there with us Dan Uggla was talking to Mary Elizabeth. Everyone once in awhile someone makes a real connection with Mary Elizabeth and he definitely did. She was smiling & flirting with him. He took a long amount of time with her and even went back over a couple of other times to talk with her and ask to see her smile. I really hope the pictures turn out well of them. We did a group picture with Heyward & Dan & I have to say they quickly became favorites of mine. 

Marlee Anne wanted to see Chipper. Well she got to see him but that was it. He was in his normal Chipper form and attitude. I think she quickly forgot him after Jason & Dan were so nice. 

Our guide for the night was Steve and he was awesome! What an excellent host! After batting practice the Atlanta Journal Constitution did a video to go online of Homer giving us all souvenir tomahawks. 

We ended up having excellent seats thanks to the Braves, Steve and our awesome usher! Everyone enjoyed their night!

I knew it would be a struggle for Abe in the heat so I found these neat ice packs. They are still soft when frozen. It fits really well in his stroller which is what we used last night. Not sure how it will do in his wheelchair but it should work nice. It stayed cold for 4 hours once it was behind him. It's made by igloo. We haven't gotten him a cooling vest yet so this worked well for now. Plus this was $4 as opposed to hundreds. 

DC part 5

Ok it didn't take me that many hours to write part 4. Some really bad weather & seizures to deal with. 

What a wonderful day to rest! I am not sure how Mike made it through another day of conferences after the late night we had. After some of us (not me) had enough of being lazy we went to the pool to pass some time before dad got back. 

That night when Mike got back we had supper & spent the beautiful evening walking around the wonderfully accessible National Harbor. Another stop by the Peeps store. On the way back to our room we discovered Godiva now makes milkshakes. Let me tell you the chocolate caramel one is delicious. I walked enough this week that it was ok if I had one. LOL!!!

Next morning Mike was up & out early again for his conference. We torn between the zoo, Alexandria, & the botanic garden. Everyone said the zoo out of those 3. We knew we would have a couple of hours when Mike got done with his conference. I was getting everyone ready when Mike walked in & the fire alarm went off. We get everyone in their wheelchairs trying to figure out how to get down the stairs with them. We called the front desk. No answer as I am sure all of them had headed outside. Thankfully the fire was taken care of with no one hurt. I had just fed Abe got up to get his clothes & before I could turn around Michala had pulled his gtube out. Balloon still completely blown up. I search for a syringe to deflate it & put it in. Forgot how much water & so thankful my friend Mary Jane was by the phone to answer & help me. 

We get ready & as we walk outside the bottom falls out. We still head to the zoo but only to sit in DC traffic. Some how we made it & had time to most of it & definitely everything we wanted to see. As we are walking out of an exhibit I tell Mike the sky doesn't look good. We are at the very bottom of the zoo. My friend Maggie said the zoo is very hilly & boy was she right. Especially when you are  pushing a wheelchair while running in down pouring rain. 

We drive back through the DC traffic in the rain this time. It had cleared in National Harbor so we decided to try Grace's Mandarin for dinner. Very nice fancy restaurant with a beautiful view of the Potomac. We had just ordered & Michala flooded the beautiful marble floor with her daily episode. I get up & push her out. Our waiter was so kind & very concerned about Michala & me not getting my meal. She & I went left the restaurant just as it happened again. We get to the room, start the laundry yet again, finish a bath just as they walk in with my food. Perfect timing!

Friday morning Mike & Marlee Anne get up early to go get in line to see if they can get us tickets for the Washington monument. We had been trying to get them online but it was booked. They were 300th in line and were able to get 10 tickets. We were meeting my soul sista & her family that day & wanted them to get to come with us. 

We ended up meeting Cyndi, her husband & their 2 daughters at Mount Vernon. As we are looking for a place to park my phone rings. It's Cyndi saying did you not even see us? I laugh & say no where are ya'll. She laughs & says we are the only black people around. We are all cracking up & Mike says we don't see color. 

You would think it had only been a few days since we had seen each other. It's the most relaxing wonderful time with our families together. What blessings they are to us. Some of our most wonderful prayer warriors. We always giggle when we are together. This was no exception. At least we didn't know if the stares were for the wheelchairs or the 2 families together. Well ok one time we know what the stare meant. Nicki (black girl) was pushing Abe (white baby) & this older gentleman working there was too funny. His expression was priceless. At least Nicki was acting ok at the time & not being one of her aliases. 

George & Martha's home was really lovely. The land was incredible. Their graves were very nice. The slave memorial was very beautiful the way it was set in the trees. 

Again hills. Had it not been for Marcus taking over for me & Nicki taking over for Cyndi I do not think we would have made it back up the mountain. We were a hot mess!!! LOL!!! Quisha & Marlee Anne sat patiently at the top waiting on us. 

Oh I forgot to mention that we were all taking picture of this tree that no one wants to claim said it was an apple. As I got closer I saw it was actually an orange. The gardens were absolutely beautiful along with the huge majestic trees. 

We were not able to see it all in a day and would love to go back sometime to the museum.  We decided to all have dinner together at the country buffet. It was so good to have some real food while enjoying the fellowship together. More giggles as Nicki brought her aliases out. Quisha was sitting quietly & we figured out she was enjoying her food. 

They decide to start on their 3.5 hour drive home & skip the monument. As we walk out once again the bottom falls out. As we are driving we all see trees blown down over the fence into the street. Thankful that we were protected from whatever blew through. 

We get to the Washington monument & find a HC parking place right beside it. We have 4 extra tickets so Marlee Anne, Michala, Abe & I go look got someone we can give them to. We see a family of 4 looking at their map and ask if they had been to the top. They tell us no that they weren't able to get tickets. We asked it they would like them & the mom starts crying. The dad tears up and said are you serious. We explain to them that our friends were not able to come with us. They were all so excited & could not thank us enough. 

When it's our turn we go through security check & up the elevator. We go up 500 feet. When we step off the elevator & look out the window - WOW! That has to be one of the most amazing experiences in my life. 

Out one window we watched as a plane landed. Has anyone flown into Ronald Reagan airport? I think it would be really cool! Out one window we saw  Maryland & Virginia. We saw The White House, the Capital, pentagon & all the memorials. Oh and the mall with all the museums. On the way down in the elevator we get to see some of the walls as the windows open on the elevator. Very neat experience! So thankful that worked out. 

Abe's seizures finally stopped after 2 doses of Ativan. It's still raining & storming. We have just 2 more hours to go & we will be home. Thanks for letting me share our trip with ya'll! Now my journaling is done for the scrapbook. 

Love & respect to all!!!

Part 4

Well we love Virginia but after sitting in traffic for 2 hours on 95 we are now thankfully on 85 about 8 hours from home. 

After leaving the Capital we went back to Union Station for supper at America. It was really a neat place. Each state's shape was somewhere on the wall of the restaurant & taught me that I have several state shapes I cannot identify. A great project for Marlee Anne & I. 

Those of you that know us know that we make the most of any trip we take, trying to pack in the most possible. We decided to go to the Vietnam memorial. I knew it was going to take lots of deep breaths and prayers to get me through this one. As we walked up to the statue nearby to take a picture I was once again flooded with the disrepect. Three young boys maybe high school or older came running up screaming. They stopped in front of me as I was about to snap a picture of the statue & said oh look there's some homies. A very nice lady came up and said just what I was feeling. She said it's very sad. There are nice signs placed about reminding us to be respectful & silent. Perhaps these boys couldn't read. 

As we began our walk I heard my sweet child's voice say WOW look at how big that wall is. Then again saying look at all those names. Even as I type this now the tears flow. With every step I took my thankful heart grew. With every family member that touched the wall, was getting an etching of their loved one's name or a picture near their name I was grateful & prayerful. 

Our first several steps afterwards no one said a word. Later as we continued towards the World War II memorial we discussed the sacrifice those had made for our freedom and how often we take that freedom for granted. 

The World War II memorial was so large & really very beautiful. The gold stars reflecting in water along with the wreaths that were there were such a great remembrance. It was dark for our walk back down to the Lincoln memorial where we were parked. I enjoyed the quite peaceful walk just to reflect on my day, absorb & process it all. The kids loved all the lightening bugs we saw that we don't get to see at home. 

It was such a quick drive back to National Harbor. Really beautiful to see the city lit up. It was back to the room to do laundry because of Michala's daily flooding of her wheelchair even through the double diapers. The joys of life & the reminders that God is always good!

I think we all welcomed rest time while Mike was working. We took our time & got ready for our big day at The White. We were told to park at Willard Hotel. Once parked it was a short walk before our adventure into The White House began. This is not something I ever thought I would have the privilege to do. 

We got confirmation & instructions for our trip just a week before. First no strollers so we had to measure the double wheelchair. It wouldn't fit on the elevator at the White House so the secret service approved Abe's stroller. Because Mary Elizabeth was 18 she had to have an ID. Birth certificate would be ok. Oh no wait it had to be a picture ID. Thanks so some wonderful friends that was taken care of and hand delivered to our home the day before we left. 

Standing on the grounds of The White House you knew great things had been done there. Great people had graced those halls. Whether you liked or agreed with the present or any of the past presidents should not be a focus at this time. To me I was incredibly honored to be allowed to walk those same halls. Sadly others made it obvious they were not as honored. 

We were encouraged to ask the secret service any question we wanted. In the blue room Marlee Anne asked who was the first president to bring a Christmas tree into The White House. She first asked the secret service in the red room. She said she didn't know but she did know where they put it. She said they take the chandelier down in the blue room & it goes in the center. She said the secret service in that room could probably tell her. He couldn't answer but said if we would wait he would look it up. He pulled his phone out & began looking. We have been studying about the presidents in school but I wasn't sure exactly how much Marlee Anne remembered. The secret service said Andrew Jackson had a small sugar tree made but the first real tree was brought in by Benjamin Jackson. My sweet girl said thank you and walked on. Later she told us it was actually Franklin Pierce but she didn't want to tell us in front of the secret service. She had read that when studying about the presidents. 

Quick stop at Chick-fil-a because we haven't seen one in 7 days. More soon.