Faith is different for many. For some it’s a belief in something larger than themselves. For others it is defined by a long history of exposure to church. I’ve even read some define faith as a feeling. And there are some who see faith as just a word. It has no significance for them. Faith for me has been an evolutional process. Not sure as a young girl I understood faith or the value of having faith. I’m fairly certain people do not give faith much thought until it is tested.

My first test came when my mom died. I was living in Dallas at the time and attended church regularly, even taught young children about Jesus. I thought my faith was strong. I learned I was wrong. Maybe that had something to do with being seven months pregnant. I was finally pregnant and my mom so excited to see her first born give her a grandchild. We spoke daily during my pregnancy and especially after she had found a lump and was diagnosed with Breast Cancer. It was so aggressive that it took her life before she could ever see her grandchild. My world shattered into pieces. I became depressed and felt like the air had been sucked out of my lungs and I would struggle to just take a breath.

I went into counseling with the pastor of my church and we spoke about the anger I had towards God. And often the conversation would be about how I may not ever know the reason why my mom was taken from me. I resented God for a long time. My entire life has not been easy. For some reason I felt like I was being punished for just being born. In reality, I was feeling very sorry for myself. I look back on that time with my pastor and I know he helped me tremendously but still I felt victimized by life. My childhood was not easy, my teenage years had not been easy and it now seemed that I should come to expect bad stuff to happen. But giving birth to my daughter changed that….for a while….then the world falls apart again.

My faith was tested again after my daughter was diagnosed with Demyelinating Leukoencephalopathy. Disguised as a high fever that resulted in her losing fine and gross motor skills and having to relearn all of those skills. So the floor fell out from under me again. My faith shaken as I could not understand why. For many years we dealt with many doctors, diagnoses, medications, hospitalizations, trips to ER and bad news after bad news. I was disappointed in God. And I felt He had to have been disappointed in me because how could anyone deserve such horrible things happen to them. I felt even worse for my daughter. She did nothing to deserve the pain and sorrow that came with being different. The many years of dealing with schools where teachers didn’t think she was very smart, to administrators that deemed her a troublemaker. In all honesty life got very grim for her during her middle school years. She struggled with her emotions and mostly in part because she did not feel accepted by her peers. We spent many days crying and wondering why.

As Brittany matured she showed her faith and was such an inspiration for to me. She instinctively knew she had been created for something greater than any of us understood or would ever know until long after her passing. Honestly I admired her faith. In high school she came into her own and grew into this beautiful soul inside and out. I was so proud of her and how she dealt with all of the craziness about her illness. She got comfortable with who she was and no longer felt like she was broken. I attribute most of that to the camp she went to during her high school years during the summer. Camp Oasis, a camp for kids with Crohn’s and/or Colitis. It was there she found others like her and that she was not alone. She met her boyfriend there and that changed her view of herself.

She loved to read to kids and got involved with her church and was invited to go on a mission trip. On this trip they would build a classroom for children in Costa Rica. She wanted to go and I was so worried for her. I really did not want her to go because we had just gotten her stabilized from Epilepsy and her Crohn’s disease was finally under control. But the leadership of the group assured me that she would be well cared for and they would make sure she took her meds and ate well. I was so proud of her that she wanted to go on this trip. She was growing up into the young woman I always hoped she’d be. Then she returned from the trip and she was changed. She was less materialistic and more about helping others. But something else was different too.

She began to show odd symptoms that led me to believe she was having issues with her Epilepsy. They were symptoms I had not seen before and my heart just sank because as a nurse I knew this may be bad news. And it was. Within a couple of months we were at Cleveland Clinic trying to find out what happened. Did she contract something in Costa Rica or was it progression of her disease. No one could ever really tell us what happened. All they could tell us was that she was seizing 70% of the time, even when we could not see it. That we could not leave her a lone ever again. The doctors did not give us much hope. Just sent us home and keep trying different medications. My faith tested again.

Within a few more weeks she had a bad seizure and we never got her back. She died 12 hours later in the pediatric intensive care unit. That whole night I stayed by her bed and prayed to God. I held her hand while she laid quietly in an induced coma to keep her on a vent so that her body could rest from the seizures. I was so restless that night. I paced, I prayed, I cried and I cried. Each time she began to come around, her vital signs would get concerning and the nurses would come in and adjust her medications. But I could see it all. I knew what they were giving her and understood we were in a very serious situation. 

At one point during the night as I sat there with my head laying next to her praying, I looked up at all of the monitors and medication machines and it hit me profoundly – she was not going to survive. She had already been resuscitated three times and her body was giving up. But why? Why God? Why take her from me? What could I have ever done to deserve this? I just continued to pray and asked God to not let her suffer and if it was her time then take her but don’t let her suffer. It was soon after that she began to code again and this time she did not come back to us. Her body was beaten down from the assault of CPR. Her brain was gone due to the lack of oxygen and her body was failing. My eyes met the nurse who was on top of her doing compressions and hearing the doctor tell us there was nothing left for them to do. We had to make a decision. I looked at that nurse again our eyes met again. I turned to my daughter’s father and said “it’s done” it’s time to let her go”. Then from there I cannot remember much but collapsing over her body and breaking down. I had been up all night and exhausted, but that did not keep me from staying by her side. I helped the nurses prepare her body by taking out the very IV’s and tubes that failed to keep her alive. I ever so gently cut her hair from the pony tail. It was up in a pony tail because of the vent tubing. I carefully placed her hair in an envelope as a keepsake. We took plaster prints of her hands and still today after 9 years when I touch them I cry because the ache in my heart is still painful. 

My faith tested to it’s very core as I began the preparation of my daughter’s Celebration of Life just a few days later. I was a walking zombie. I was not able to comprehend what had just happened. It was like I knew it happened, but when I got home, it just did not seem possible that it had happened. That she was not coming home. In the coming weeks my faith took the biggest hit of all. When the reality of my loss became more apparent, I found myself on the floor more than I was standing. I was flipping through the bible looking for help. I called on my core church support because I was beyond finding any morsel of comfort from the bible. Time and time again those who God surely put on my path help set me upright and helped me take one step at a time towards healing. My faith bruised, but not broken. Faith is a process but most of all it’s necessary to soften the hard blows of life that will come regardless of your faith. Faith is the measure of God’s footprint on your heart. Something to think about.

Until next time,

Mal

  
Her candle light is bright and shines for not only her spirit but all young spirits who’ve left us too soon.

RIP Brittany Boothe – 11/30/88 – 10/13/06

Brittany used to make me laugh all the time. She had that uncanny way of bringing people out of a bad mood. She really did not care what people thought about her, but she cared deeply for the people in her life. She, like her mother (the apple did not fall far from the tree), was a maniac for justice. When she saw an injustice, she would often speak up. Even when it may have not been the most opportune moment.

She had no problem speaking her mind when she felt compelled to say something she knew was not right. I suspect that too she got from her mother. She would often ask why people were so mean. I really never had a good answer for her, but she would always ask and I would always fail to provide an answer that satisfied her. When she witnessed someone suffering from bullying or unkind words, she would step up and either provided solace or protection.

One particular time comes to mind when during her high school years she came home demanding to head to the store so that she could buy a card and flowers for someone. I asked who it was for and she said a classmate. As we drove to the store she looked at me and with this uncanny way she had about herself said “I feel for her mom because she passed out at school and the ambulance came and I know how that feels”.

She quickly picked out a card and flowers and off we went to find this girls house. As we drove up Brittany collected the card, signed it and walked up to the door as if she’d been there before. But I was fairly certain she’d never been there before. I knew all of Brit’s friends, the few she had, and I knew this was not someone who she hung out with. Nevertheless, she felt compelled to do this kind gesture.

Her classmate opened the door and Brittany offered her the card and flowers, exchanged a few words and left the house and got back into the car. We drove home in silence, but she had this tiny smile on her face that spoke volumes.

We never spoke about that again. At Brittany Celebration of Life, I received a card from that classmate. Inside the card she wrote about that day when Brittany brought her that card and flowers and said how touched she was that she would do that for someone she really did not know well. She also went on to say that no one else, not even her close friends, did anything like that for her. She said she would never forget that.

That is how my Brittany was. A sweet, funny spirt that loved and wanted only to be loved in return for who she was and not turned away because she was different. Really she was not that different. She looked beautiful, she was smart, but she had a disease that made her feel like she was damaged. But that was the farthest from the truth. She came to understand she was not damaged, but she was a gift from God to others. What she needed to do was spend that gift and touch lives. And she did just that until her light flickered for the last time and went home to her Heavenly Father where He welcomed her with open arms and said “well done my child, well done”.

Until next time

M

Chapter 7 from Grieving Forward – Embracing Life Beyond Loss by Susan Duke

I’m actually passing some of the material in this chapter as I’ve visited the topic of gifts many times before. Decided I’d review something I believe is so very important for a grieving parent. A topic Duke talks about mid way through this chapter – dealing with special occasions. I think it continues to be a very source of anxiety for me even after nearly five years since Brittany’s death. The longing for things to be as they were and knowing they cannot be is often so painful that there have been times I just wanted to sleep through them.

I’m about to enter what I call the dark days again…..they just keep returning each each around September and stay until New Years. It’s a time of great memories and great heartache. Some days the memories are so profound and magical that I find myself so thankful I can recall them. Then there are days when the memories are so hard to handle. Duke relates so well to this issue that she states “Even years after our loss, despite how much healing has occurred in our lives, certain events often make us wish we could cancel these dates from the rest of our lives.” I too feel that way – still today.

There are things we can do to help ourselves and others during these times and I would encourage you all to be mindful that the holidays are the worst time for those who have lost loved ones. It can be a lonely time. And it can remain that way for a very long time.

While attending Grace Community Church in Indianapolis, I enjoyed the Remembrance Service the church put on each fall to help remember those loved ones that had gone on to Heaven before us. It was a bonding experience with those, like me, who had to deal with the on-going pain of the upcoming holiday season. I will miss that this year. Now I find myself having to find another way to release that memory, that pain for it overshadows everything I do during the holidays.

Making new memories has been hard for me, moving back to Indy helped me reconnect with family that I had lost touch with over the many years of being away. Now I find myself in a new city, facing this holiday with an uncertain plan. I must however have a plan. It’s so important for me to ensure my ability to make new memories, while respecting my past life with Brittany. It’s a delicate balance and one that I can’t afford to be without.

It is so important to bring a season of celebration and love from the one who has been lost because it marks the blessing that enriched your life for a different season in your life. Creating a sense of celebration and new traditions allows you to incorporate the blessings of the old life with the blessings of the new life.

Some of the traditions I have today are from the great woman who raised me. I choose to light a candle for Brittany on her birthday. I eat macaroni and cheese because it was her favorite food. I wear the dog tags that were made by her friends for her Celebration of Life for the month of October and her “Brittany” bracelet for the month of November, her birth month. For Christmas I hang a special ornament or two just in memory of Brittany.

It’s all bittersweet sometimes and I have to allow the tears to fall. But I would never, ever trade one day of those memories of my life with her. It’s the days without her that are at some times unbearable, but it’s those moments with her wonderful smile or her funny wit that I am reminded of a beautiful spirit that surrounds me everyday and that spirit is my daughter.

until next time

m

“In my darkest hour God reached down to me and pulled me out from the mess and lifted me into His lap and cradeled me until I stopped crying. That was when I knew I was going to be ok. Not that I wouldn’t stop feeling the unrelenting pain and absence of my daughter, but that I could go on to fulfill my purpose. – MalMoss”

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In my darkest hour God reached down to me and pulled me out from the mess and lifted me into His lap and cradeled me until I stopped crying. That was when I knew I was going to be ok. Not that I wouldn’t stop feeling the unrelenting pain and absence of my daughter, but that I could go on to fulfill my purpose. – MalMoss