Monday, December 31, 2012
Friday, December 28, 2012
Tonight she decided she didn't want to but changed her mind a few times. That's what the multiple trips were for. Actually this post doesn't have much to do with that.
Because I made 6 trips, 5 of those all alone, I had a lot of time. I was in the van for 2 hours & 5 minutes with just me, just my thoughts, my heart feelings and a lot of God.
During one of my trips I heard the song While I'm Waiting. I don't know how many times I have heard that song before but tonight it really spoke to me. Remember that "peace that passeth all understanding" that I was talking about the other day? Well it found me. Boy did it find me.
I walked in our home & Mike had everyone settled. Abe is back on oxygen but instead of overwhelming me or getting me down I was reminded that God's got this. It was so incredibly peaceful.
I am not only thankful for the sweet friend that invited Marlee Anne over but also for the wonderful new friend I met tonight. I am so thankful for the time that God planned for me & that I didn't let it pass me by.
Wednesday, December 19, 2012
There seems to have been more damage to Abe's lungs than first thought when he had that bad seizure & aspirated. That seems to be why it is taking him longer to recover. Not like a virus or a bacteria he picked up. Another reason we are being so cautious with everyone so we don't put something else on top of his little body to fight.
He is back on oxygen. It happened right after I sent out the "Praise The Lord" email. He came off for a brief time & is now back on it.
This roller coaster ride is so very hard on our bodies, minds & spirits. A precious friend said 2 steps forward & 1 step backward. Then her daughter dropped off cookies in our mailbox. Don't tell Mike though because I ate them all. Yes the stress eater is back!
Thank you to those that sent emails yesterday letting us know you are praying. I don't like how going through this makes me feel & pulls me down. I try for it not to. I am thankful for those of you that let me feel this, talk & cry through it as I need to.
Lack of sleep and other daily stressors are making this harder. We know that this too shall pass & we will soon be able to catch our breath. Many have said they don't know how we do it. Well it's only by the grace of God. Dear family & friends who lift us up & help carry us through. Thank you so much!!!
Tuesday, December 18, 2012
This morning I am breathing a little lighter and the world looks brighter. Ok some of that could be because the sun is shining. Mostly it's because our sweet boy went all night without oxygen.
That little boy scared us so very bad. We are set up like an ICU unit basically but just not in the hospital. This has been a tough week in our home. I am sure it will continue but so thankful he had a night off oxygen. Not sure Mike or I slept at all so overlook us today if we are acting a little loopy. LOL! More so than usual I mean.
As we continue to work on getting Abe better & keep everyone else well please pray God's peace & protection over our home. Please pray for strength & grace for Mike & I. A little rest would be nice also.
We thank each of you for keeping our family in your prayers.
Sunday, December 16, 2012
Twas' 11 days before Christmas, around 9:38 when 20 beautiful children stormed through heaven's gate.
their smiles were contagious, their laughter filled the air they could hardly believe all the beauty they saw there
They were filled with such joy, they didn't know what to say they remembered nothing of what had happened earlier that day.
"where are we?" asked a little girl, as quiet as a mouse. "this is heaven." declared a small boy. "we're spending Christmas at God's house."
When what to their wondering eyes did appear, but Jesus, their savior, the children gathered near.
He looked at them and smiled, and they smiled just the same. then He opened His arms and He called them by name.
and in that moment was joy, that only heaven can bring those children all flew into the arms of their King
and as they lingered in the warmth of His embrace, one small girl turned and looked at Jesus' face.
And as if He could read all the questions she had He gently whispered to her, "I'll take care of mom and dad."
then He looked down on earth, the world far below He saw all of the hurt, the sorrow, and woe
then He closed His eyes and He outstretched His hand, "Let My power and presence re-enter this land!"
"may this country be delivered from the hands of fools" "I'm taking back my nation. I'm taking back my schools!"
Then He and the children stood up without a sound. "come now my children, let me show you around."
Excitement filled the space, some skipped and some ran. all displaying enthusiasm that only a small child can.
And i heard Him proclaim as He walked out of sight, "in the midst of this darkness, I AM STILL THE LIGHT."
Friday, December 14, 2012
Monday, October 29, 2012
Saturday, October 27, 2012
We were so blessed to have this beautiful little baby. We would soon take our perfect little baby home & play house. No going to Eglestpn Children's Hospital with her like we did with Mary Elizabeth. We were going home.
There was nothing wrong with Michala except for the dark spots on her foot. We were told that it was a birth mark.
Three weeks after being home I was nursing her in the middle of the night & she had her first seizure. I sat there & held my baby & cried. I prayed that I was just tired & what I was seeing was a result of that. It couldn't really be happening. The next night same time same thing. I still didn't mention it to anyone. On the third night she was sitting in her bouncy seat. I was on the phone with my sister & Mike asked what Michala was doing. I knew then it was real. I knew then it was true that she was really having seizures.
The next day we walked into Egleston with our perfect little baby. The EEG confirmed the seizures. This was the beginning to my holiday blues as I call them.
Soon after this Mike noticed a new type of seizure. I was in such a fog I couldn't even think through the seizures. He figured out she was having something called infantile spasms.
On December 21st while the world was getting ready to celebrate Jesus birthday we were back at Egleston having an MRI. We got the diagnosis of Aicardi syndrome. The first thing the doctor said was not to go home & read anything on the Internet. HA! He knew us too well. The information was promising so he didn't want us to read it.
On the way home someone hit our van & put us in a tailspin. My mama was in the back of the van & it knocked her tooth loose. Everyone else thankfully was fine. As I type this I remember those feelings so well.
We spent Christmas worried about our baby's future. We didn't have internet so we went to Aunt Kim's to read up on it. That's the day I emailed my first mom of a little girl with Aicardi syndrome. Soon Anna from Hong Kong & I were emailing regularly. She became very dear to us.
Our wonderful neurologist Dr. Holt got us in touch with Dr. Bebin, a neurologist in Alabama that would forever change our life. Michala was admitted to University of Alabama at Birmingham hospital. She was going to be put into a study program for Vigabatrin which was a new seizure medication for infantile spasms.
Pretty soon we were traveling back & forth from Alabama a couple of times a month. I never understood while our dear friends Spence & Danisa moved to AL but soon realized one of the reasons. They were there for us for years. Opening up there home each time we traveled over there so we would have a comfortable & loving place to stay.
Within days we had our sweet baby back. She was smiling again thanks to the medicine. You see when the infantile spasms started all that stop. The Vigabatrin (now Sabril) brought that back.
Last night we celebrated Michala's birthday with a fundraiser for The Miracle League. If any of you would like to make a donation to a great cause in honor of Michala's birthday that would be awesome. Donations can be mailed to the following address:
Friends of Newton County Miracle League, Inc.
c/o Newton County Recreation Commission
6185 Turner Lake Road
Covington, GA 30014
During the party Mike said this time 14 years ago we were struggling with a decision. You remember that birth mark? Well with this first year lots of changes in her foot took place. It was diagnosed as a hemangioma then a lymphangioma.
On her first birthday while wearing her first birthday dress we went through Taco Bell drive thru to grab some lunch before her birthday party at the park. I hit her foot & once again her blood filled, golf ball size cyst began to bleed through her sock.
The next week we flew to Boston Children's Hospital to have some of the top specialist look at her foot. We were taken to a huge room. Soon there were at least 15 doctors surrounding us. All with different thoughts & opinions. After what seemed like days it was decided we would schedule sclerotherapy to try to shrink it.
As with anything in our life we take it all in & make the most of it all. We drove into Maine so I could see a lighthouse on the rocks beside the ocean. I saw my first ever real snowflake. You know the kind you used to make out of paper when you were little? That's what I saw falling from the sky. We saw so much during our visits to Boston.
We went back for surgery the next month. Yes that would be November. You know when everyone was preparing to give thanks for all their blessings. Do you detect the sarcasm there? It wasn't that I wasn't thankful for life & for my precious family but I wasn't thankful for what my heart was dealing with.
As we were in holding waiting for Michala to be taken back for surgery a doctor came by & saw her foot. He asked what was going on with her. We told him & he said no I will be doing surgery on her to remove this. We soon found out that one of the top surgeons in the world would be performing surgery on our baby. If we had scheduled this surgery with him it would have been 8 months out when it would have been done. A definite God thing.
In the summer of that year we went to our first Aicardi Syndrome conference. That's another story all it's own. We met a mom named Maryellen. She was very bold when she saw Michala's foot & said do not wait around on this. She said be very aggressive. From then until October was how long it took to get to where we needed to be with this.
Four hours later Dr. Mulliken came out to talk to us. He said it was very nasty & he didn't know what it was. He had sent it to four different pathologist all over the world. Mike asked him did it look like cancer. I remember standing there wondering where Mike got that from.
My most vivid memories of that hospital stay was Mike holding the oxygen on my baby's hip to help the skin graft heal where they took skin from her hip to go on her foot. Also my dear Internet friend Hilda & her precious family coming to visit us while we were there. Mike also gave platelets there for the first time.
We flew home & that Tuesday I received a call from Dr. Mulliken. I remember his words Angiosarcoma cancer, rare, another surgery, clear margin. I don't remember speaking a word, hanging up the phone or hitting the floor. I remember Mike & my mom being right there with me within minutes without me even calling them.
The next week we were in a hospital room at Egleston. The doctor said everything went great & our spirits should be lifted because he got all the cancer. Everyone except me was celebrating. I knew in my mommy heart the cancer wasn't gone.
A phone call in a few days confirmed that. The next step was amputation. We met with the surgeon at Crawford Long that would be doing the surgery. He came in & said it's her life or her leg. Putting it that way made it easier. Not easy but easier.
I carried her to the operating room door for them to cut off her leg. The fear, the anger, the unknown weighed heavily on my heart. As we waited for her to come out of surgery the anger got worse & worse. As I watched our baby being wheeled to her room I felt some relief. She cried & cried & was in so much pain. Soon we would find out there was nothing that could be done about this pain. It was phantom pain. The first time I held my baby without her leg. The first time I nursed her without her leg. Everything was without her leg now.
I thought we had been through a lot with Mary Elizabeth but for some reason this towered over all that. Our dear friends Gene & Sandy came to the hospital that night after everyone had gone home. I remember trying to keep Michala's stump covered up so they wouldn't see that her leg was gone. Yes they knew it but I thought if they didn't see it it wouldn't be real.
Our first outing after coming home was a Christmas party at Brooke & Stewart's. We were with dear friends but that didn't make this any easier. I put tights on with Michala's Christmas dress & covered her leg with a beautiful blanket. We kept her in her carrier. Every time she moved her leg her blanket would move & I would cover her back up. Without saying a word Don came over & sat on the other side of her. He gently placed his hand over the blanket so it wouldn't move. That was the first time I walked away & left her side. Never underestimate the power & impact of what you might think is a small gesture. That is something my heart will never forget.
We went to see Santa Claus at Phipps like always. As I was standing to the side I heard Papa Ray ask mama how Michala was doing. I had to listen to my sweet mama have to tell him about her granddaughter.
I remember sitting on the couch holding Michala while both of us cried. Kim came over to help Mike decorate the tree for Christmas. All I could think about was meeting with oncologist. My world had stopped but everyone else's seemed to continue on. I felt numb.
Sitting in the oncologist office I remember seeing his lips move but not hearing any words. I was in that fog again. Maybe I never got out of it. I made out the words cancer, rare, stage 4, prognosis & chemotherapy.
In a few days we were back at the hospital. Michala was being admitted for her first round of inpatient chemo. As I watched the nurse hang the chemo all I could think is she was putting poison in my baby's body. She asked if I had any questions. Through my sobs I asked how long before her hair would fall out. Every time I tried to close my eyes I saw God chopping her leg off with an axe. God & I had a lot of come to Jesus meetings that needed to take place.
The story doesn't end here but it's a new year & we made it through the holidays. Every year this happens to me. I relive every anniversary. I have given this to God & I am so thankful for His grace & mercy for carrying us through. I need to relive this so I am reminded of the feelings those new families that get an Aicardi syndrome diagnosis or a cancer diagnosis feel. This is my charge in life. A compassionate heart for others. However it's wasted if I don't follow through.
For those around me that live with me daily & through the holidays I am sorry there are times that hit me when it just hurts too bad to breathe. Chances are its the anniversary of one of these so very hard steps in our life.
These past 15 years have been filled with so many challenges. Without God's grace & loving kindness we would not be here today as a family. The world has tried so many times to tear us down. We are so incredibly thankful for Michala and all that she has taught us.
We hope that many of you have had the opportunity to meet Michala & have gotten to know her. She speaks volumes without any words. She has an awesome personality.
Thanks again to everyone that came last night & helped with her fundraiser for Miracle League. Thanks to everyone who has walked with us, carried us & prayed us through this journey for 15 years.
Tuesday, June 26, 2012
Wednesday, June 20, 2012
As I thought of it more I realized how God was using this friend in such a huge way. A meal yes, but love & friendship that goes above & beyond because she is taking time from her busy schedule & doing this for us.
It made me stop to think of who I could minister to today. Maybe with a phone call, text, email or letter. It's so easy for me to get wrapped up in me & mine that I miss the opportunities God places in front of me. I am trying to remember I may be the only sign of Jesus that one person ever sees. Saying I am a Christian doesn't do any good if others can't see it through my actions.
Never underestimate the influence you have on another persons life.
As every man hath received the gift, even so minister the same one to another, as good stewards of the manifold grace of God. 1 Peter 4:10
Monday, June 18, 2012
Friday, June 08, 2012
Thanks for letting me brag!!!
Thursday, April 26, 2012
Tonight our precious friends Katie & Uncle Buck came to see us. I was telling them about our friend Lindsay being here. I sent Sara a text to see if we could go see her. I thought nothing about where we were about to go. I walked through the doors of Aflac where I first walked through 13 years ago. Behind those transplant doors I saw that little room & heard Dr. Olson's words when he told us Michala had cancer. I was brought back to today when my dear friend Sara - Lindsay's mom walked out with that smile of her's on her face.
Ok I have to take a minute to tell you about Sara. Here is the mom whose daughter was days from survivor clinic relapse with Leukemia. Here is a mom whose daughter gave bone marrow to her sister Lindsay to save her life. Here is a mom who hears that her daughter has relapsed for a second time. Still she walks out with a smile on her face.
While she is catching up with Buck my thoughts creep back to those horrible chemotherapy days. As we get up to go see Lindsay and we walk through those dreaded doors my legs get heavier & heavier. Two doors down from Lindsay was where Michala was when she had her very first chemo. Four doors down the other direction was where we sat as we were told our baby wouldn't make it through the night. Her body had handle all it could & it was shutting down.
Then I am standing in front of Lindsay's door. My heart breaks into a million pieces. No one could have prepared me for what I saw. Sara had told me she was so very sick. Sara told me that she was weak. No where in my mind & heart was she this sick & this weak.
How many times do I get caught up in me & mine. How many times am I so overwhelmed with life, with seizures, with medical issues? This week I even used the words self absorbed. There is a world around me that is hurting. No amount of money, gifts or even coffee & Krispy Kreme donuts (a story for another day) that will take away Lindsay's pain & heal her of leukemia. However those extra minutes I have stopped at a light, waiting on meds to dissolve, waiting on Abe's second beep on his pump, I can say an extra prayer for Lindsay, for her mom, dad & sister. God reminded me why I am here. Am I caring for others? No not like He wants me to be. Who is your Lindsay? Who does God want you to reach out to? I know it takes time. I know your time is precious. When we stand in front of Him and He ask was "this" more important than "them" what will we say? My prayer is that MY "this" will get out of the way so HIS "them" will be first & foremost in my life.
As I finished this email Sara text me that Lindsay had a nose bleed & platelets were on the way. Please lift sweet 13,year old Lindsay up in your prayers. These are times I don't understand why this happens for a reason.
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.
Wednesday, April 25, 2012
Tuesday, April 24, 2012
Wednesday, April 18, 2012
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!
Sunday, April 08, 2012
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!!!
Thursday, April 05, 2012
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!
Monday, March 26, 2012
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!
> 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!
Sunday, March 11, 2012
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!
Monday, March 05, 2012
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!!!
Thursday, March 01, 2012
Monday, January 09, 2012
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.