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.


1 comment:

Jodi said...

Beautiful, Kelli. Thank you for sharing your experiences. I've never heard all of Michala's story like this before. It touched my heart. We love your family! Happy birthday to sweet Michala!