Two weeks ago I was making this drive in the opposite direction. I was so worried about Abe & what was going on with his little body. What was he fighting? What was causing so many seizures?
On the way I started praying that God was ahead of us. Literally making a path through traffic for us. The wind was blowing the van so hard. I prayed that the wind would stop. I could still see the trees blowing but the van was no longer swaying. No longer hard to control.
Those of you that have experienced the hospital, ER or any doctors & nurses know how important it is for God to go ahead of you & put the right people in place. As soon as we pulled into the parking lot I could see he had gone ahead of us because of the parking attendant & the parking place.
I walked through the doors of the ER carrying Abe & a trauma nurse walked out. She took one look at him, made a quick call & we were in the trauma room. Like a well rehearsed play the doctors, nurses, respiratory team & techs moved about working on Abe.
After what seemed like an eternity of labs, X-rays & test the doctor said I am stumped. He was stable enough to move to the PICU.
Same thing there. God's steps ahead of us were in place & very visible. The PICU team got to work right away getting him settled & getting him comfortable.
The next two weeks were one of those roller coaster you would like to skip even if the wait time is short. Thankful that God carried us through.
On the drive home 2 weeks of tears flowed. It was a mixture of scared, worry, fear, joy, blessings, peace & so much more mixed in. After only a few minutes of crying I began to sob because the joy of The Lord & the love of God overwhelmed me. This is so not the perfect life I had dreamed of. God is so much bigger than that. On the way home I could not wait to he with my perfect family God created.
I cried also for the 2 little lives that were lost on either side of us while we were there. I pray for their families. I pray for Jack & Kemper as they are still in the hospital fighting a good fight. I pray for Mackenzie as she had another blood clot this morning but survived it. I pray for the families that went home while we were there. I pray for the families that are still in their struggles. I pray for the doctors & nurses & the rest of the medical team as they help to heal these children. May the feel God's guidance & allow him to use them.
The amount of thank you notes that I need to send out is unreal. Sadly they will most likely get placed on the back burner for now. Please know that our thanks is great to those of you that love, supported & prayed for us during this struggle. We are thankful that after all these years we have family & friends that haven't walked away & haven't given up on fighting with us. We couldn't do this without ya'll!!! Thank you so very much!!! Now go hug your loved ones. Tell them that you love them & make sure they know God as their personal savior.
With much love & gratefulness!
Wednesday, March 20, 2013
Wednesday, March 06, 2013
It's me again God
Well here I am again. Sitting in the PICU watching Abe's numbers on the monitors. Every doctor that comes in says they are baffled. They just don't know.
His seizures have thankfully slowed down some. He is on 10 liters of high flow oxygen in hopes of giving his body some rest. It's working so hard to fight whatever is going on in there. His temp is 103. There is a war raging on inside.
As I watched his body have seizure after seizure back to back I wondered if their is peace in his soul while all of that is going on within him. I wondered what he was feeling & what he was thinking. Could he hear me tell him that I love him? Could he see me beside him? Could he feel my touch?
Each day I ask God to use us. To use our family to minister in some way to someone. On the way up to the ER today I asked God to use us.
Not sure if he used us for the nurses or the doctors we have seen but I hope He did. I had to move the van & coming back up to the PICU I rode the elevator with a dad whose 14 year old son had a stroke at school on Monday. He is being transferred to Scottish Rite tomorrow to the rehab unit. As we stood out in the hall talking my heart was breaking. It all happened so quickly which I am thankful for because I had no time to get in the way or think about what I was going to say, who else was around or who was watching. God's words, God's timing, God's plan & God's will. My heart is heavy tonight for this 14 year old boy named Jackson & his family. You may have seen it on the news. Please lift them up in your prayers!!!
Well I am about to ask for another blanket. I don't know what the temp is in here but you could hang meat. They are keeping it cold because of Abe's fever. I am freezing. Please keep Abe in your prayers. Also please pray for Mike & the girls!
At least they gave Abe a Mickey mask. He wanted me to take a picture so his sissy could see it. They also gave him Cars diapers but I don't think he wants me to share that picture with ya'll!!!
Thursday, February 14, 2013
5 years ago
From Mike
Dear God,
Thank you so much for my son –Abe. He is such a blessing. I am honored to be his father. He is so special. Touching lives and inspiring souls all according to your plan. Last night, late last night I heard a group of people singing and when I asked what was going on lo and below Abe was getting a happy birthday song sung to him by the UGA Miracle Students through the internet. They love him, must be those blue eyes, long hair and beautiful smile. Father God thank you for allowing me not to dwell on the obvious, but to be thankful for what you have provided. It is more than sufficient.
Abe another year- good. Son I know your struggle, hang in therewe know how the story ends. The Apostle Paul wrote in 2 Corinthians "Therefore we must not lose heart for outwardly we are wasting away but inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we must fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." God's words of comfort to me Abe. They help me to keep my focus on the greater things to come. Abe keep up the good work.
Happy Birthday
I love you my son,
Dad
Monday, December 31, 2012
Happy New Year
Well 2012 is coming to a close. As it ends I love thinking back on all that has happened in our lives. That could be a book in itself.
Over the past year our family has grown stronger in The Lord & He has blessed us beyond measure. We have made new friends & rekindled some old friendships. He has given us time together as a family & carried us through some rough patches.
Mike has continued to do an incredible job for our county while juggling school and family. I admire him so much for his continued diligence in getting his masters even though I know it has to be a challenge. He has won multiple tournaments on the Golf Channel Amatuer Tour and continues to use that as a way of witnessing to others. We are so very proud of him. He loves us and never fails to put our needs before his.
Mary Elizabeth - WOW! Just look at her! You can not look at our amazing 19 year old and not know what a mighty God we serve. So thankful!
Michala is becoming more & more of a teenager each & everyday. Still our amazing God gives us the love & patience to care for her.
Marlee Anne bless her old soul. The other day when we left my mom's her concern was how does she get her mail from the mailbox. Before we reached the top of the street she wanted to know what happens if she falls in the bathtub. Oh my! She is constantly keeping an eye and a heart out for someone in need or someone that she can help. What a beautiful child she is. My constant reminder that God's got this.
Abe oh my sweet boy Abe. I know I have said it before but I never understood that love a mother has for her son. It's so incredibly powerful. Even in his most recent struggles we have caught glimpses of his precious personality.
I look back over the year & right now I see all the incredible blessings that could only come from our loving God. Those blessing include so many of you that have helped brighten up our days with a text, an email, a visit, diapers, wipes, a CD, a coffee or a meal. You will never know how much each of you mean to us.
My prayer for each of you for 2013 is that you know our awesome God & have a personal relationship with Him. I do not want to be in Heaven without a single one of you. I pray that it's filled with so many blessings. I pray any struggle that you endure you feel God's loving arms in some way.
My wish for 2013 is to let Jesus shine in all I do. Bless others, create more smiles than frowns & have more happy tears than sad ones.
However you bring in the New Year please do it safely. Please do not drink & drive. Let those you love know that you love them. Start the New Year off right.
Our love to ya' ll!
Friday, December 28, 2012
While I'm Waiting
Tonight Marlee Anne was invited to a friend's home for her birthday party. In an effort for her to have a night of being a child I made 6 trips back & forth to Social Circle. It was a spend the night party but Marlee Anne doesn't spend the night away from home. Anytime she has tried she didn't make it all night. Just once at Aunt Staci but that's because she could stay up all night & do whatever thanks to Aunt Staci.
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.
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
Update
I didn't think ya'll would want an update every time things change but my heart needs to share now if ya'll don't mind.
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!!!
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
Praising God
How many times do we (that means I) ask for prayers, have them answered then carry on. Well I am praising God this morning & wanted ya'll to praise Him with me.
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.
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
11 days before Christmas
I don't know who wrote this. If anyone does please share.
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
Dancing with Daddy
Saturday, October 27, 2012
A Mommie's heart 15 years ago.
Wow! It was 15 years ago when God rocked our world in ways we never could have dreamed of. I just knew that Michala was going to be a boy. We were going to name him Shamus. Well plans changed & she became Michala Jo. Thanks to my sister for the name!
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.
Kelli
http://nomatterwhathappens-kelli.blogspot.com/
http://m.facebook.com/kelliskreations
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.
Kelli
http://nomatterwhathappens-kelli.blogspot.com/
http://m.facebook.com/kelliskreations
Tuesday, June 26, 2012
Thanks Covington News!
Just wanted to share this video about Camp Sunshine, Camp Twin Lakes & our friend Jessika for anyone that may have missed it. We would love someday to have some of the handicapped features you see in this video available to our children and others that could benefit from it at Chimney Park. This is awesome! Thanks to the Covington News!
http://www.covnews.com/m/section/1/article/30273/
http://www.covnews.com/m/section/1/article/30273/
Wednesday, June 20, 2012
Comfort
Isn't it funny how certain things stir up feelings & memories. This morning I received an email from a precious friend asking us if she could bring us Henderson's for supper. Well this hit me in the form of a warm rush of peace that came over me. Silly I know but Henderson's is such a comfort for me. It holds so many precious memories for me. My daddy, mama & I went there every Friday night to eat catfish. Mike, Mary Elizabeth, Michala, Marlee Anne & I went there every Sunday after church. Funny how life changes but some memories we hold on to forever. So as I am struggling with my ankle pain & this "taking it easy" idea along with Abe's seizures & Michala's most recent issues, this was peace to me.
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
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
Wendy's and Camp Sunshine!
Purchase a Wendy's Frosty Key Tag
for Camp Sunshine!
Dear Kelli,
Cool off this summer with a FREE Jr. Frosty from Wendy's by purchasing a $1 Frosty Key Tag!Proceeds will benefit Camp Sunshine and the Dave Thomas Foundation for Adoption.Please feel free to share this with your friends and family - the more tags that are purchased, the better!Thank you so much for your support of Camp Sunshine's year round programs for kids with cancer!- Camp Sunshine
Friday, June 08, 2012
Brag moment!
This week Marlee Anne went to Creative Kids Camp at Oxford College. She learned songs, did crafts & made new friends. My proudest moment was just now when she told me a specific counselor of her's was a Christian. I asked her how she knew that. She said she asked her. Be bold & let Jesus shine is a prayer of ours each day. So thankful she was bold & let Jesus shine.
Thanks for letting me brag!!!
Kelli
http://nomatterwhathappens-kelli.blogspot.com/
http://m.facebook.com/kelliskreations
Thanks for letting me brag!!!
Kelli
http://nomatterwhathappens-kelli.blogspot.com/
http://m.facebook.com/kelliskreations
Thursday, April 26, 2012
One more email
Ok ya'll please bear with me as I share my heart one more time tonight. Each day I pray that God will prepare my heart for what He wants me to learn & how He wants me to grow more like Him. I also pray that He will use me & my family, our children & Mike in any way he sees fit. I think praying that is not enough. It has to be more than words. My eyes & my heart have to open & be aware of all that I have sincerely prayed for. Sometimes I am so aware of why God chose me, of why we have to be in this place right now.
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.
Kelli
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.
Kelli
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.
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!
Wednesday, April 25, 2012
Thank you to our nurses!
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