JOYFULLY GRIEVING

Hello I’m Christine. My caregiving journey started when my son was born with heart lung and kidney failure. I was twenty years old at the time and he was my third child. Being a young mother had its challenges, yet nothing prepared me for the strength and growth it would require to evolve into the compassionate woman it took to embrace his diagnosis. Life skills became the foundation to my Joyfully Grieving. 

When my son was born he had no heartbeat and doctors told me he would not live throughout the day, once he was revived, I was unable to process at the time that I was supposed to be planning a funeral. Against all odds he kept breathing and surviving. This is when I learned the power of faith. It took a learned behavior to release the desire to want to control the situation. I in no way could control his health. It took experienced doctors five years to find a diagnosis and another twenty-five years for me to finally find a doctor who knew how to treat his syndrome.   

The first five years of him being undiagnosed were the most transforming for me. I had no idea how to balance my grieving. It was a constant battle to keep my mindset in a place of hope despite the reality of multiple doctors speaking end of life affirmations over him. I kept a jar of mustard seeds on my kitchen counter to remind me to hold on and believe he was going to get through the day. That I too was going to make it through the day. That I was capable of juggling my other two children, my job,and my relationships with family and friends. 

As I learned the tools needed to function forward, I was in constant search of making this journey an enjoyable experience for my son and his siblings. As tough as the days got we would focus on what worked, what didn’t work and what we do tomorrow to support one another. One day at a time was our motto. It was important to me to make sure all three children had a voice. That their basic needs were being met and more importantly, they knew what their basic needs were. We did not live the same lifestyle as those around us, so intentionally creating a circle of support was imperative.  Asking for our needs to be met, brought trust and endurance. 

When my son turned eight years old he also was diagnosed with visual impairment  and night blindness. Doctors told me that this was due to a brain tumor and needed immediate surgery.  Something in my gut told me to request a second opinion. In fact we got up and moved twelve hours away to the complete other end of the state. We met with specialists who were more experienced and more educated on his conditions. He had a total of nine specialists who were focused on each organ and knew in great detail how to treat what they were specialized in. They also had to focus on working as a team and with one another. It was quite challenging as most therapies counteracted with one another. Deciding what was most important and what to put at the forefront. Keeping Joyful and not fearful nor resentful grew even more challenging. Watching your child breath like a fish out of water and barely hold on is extremely difficult. 

This is when my child became aware that he was close to passing away on a daily basis. His awareness began to grow. He too found the doctor’s opinion of his existence to be hurtful. He learned it took an increased strength in his belief system to overcome the educated and confident doctors results. He kept praying and speaking to his inner self as to his truest intentions. He learned to find his own true joy within himself. He started focusing on what brought his hopes up and brought him purpose and life. He started focusing on who he truly was as a person and not his diagnosis. This in turn , taught me and his siblings to do the same. We started living our lives with purpose and intention. My son requested that we show him that we can be happy. That we show him that his health was not the reason we chose not to live our best life. 

Once we individually started our personal development journey of finding our own healing, we were able to grow stronger and happier despite the reality of what was to come. We were able to increase our pillars and our support systems. No one can ever be fully prepared for end of life circumstances. The emotions and processing that it takes is unknown until you are actually present in that moment. My son’s declining health brought us to this moment several times over. Many times the emotional rollercoaster often led us back to facing our worst fears , all to come complete circle back to stable vital signs and the understanding of knowing this cycle will repeat itself yet once again. 

Open Honest Communication played a huge role in our recovery. Being vulnerable and giving one another the permission to be on a different stage of grief was key. It’s rare to have every family member on the same emotional regulating cycle.  Incorporating fun , self-care and boundaries are essential to maintaining the Joyful Grieving process. It’s not easy balancing your basic needs during a crisis situation and it takes practice. Learning to be gracious and kind to yourself and others that are around you requires time to achieve when you are hurting, angry and confused.  We learned not to beat ourselves up for being in an uncomfortable situation that we are not used to experiencing. Grieving is not to be one’s norm. Joy was also a learned emotion that we grew to embrace. Joy took strength and courage. It was not forced or “faked” but it took surrendering to what is. Allowing acceptance to the circumstances and the willingness to step into forgiveness to not just my son’s illness but also to myself for not showing up the way I thought I should. The “shoulds” will destroy you if you allow it. Do not lean on your own understanding when embracing forgiveness. Trust the process. There is no wrong way to grieve or be joyful. 

My son’s last days were more healing emotionally than the thirty years he lived physically. We were able to come together as a family and lay all our fears at his bedside. As he left us we also decided intentionally what other belief systems we were willing to let go of. The hurt that no longer served us and the traumatic memories that we were trying to hold onto. Releasing the pain and suffering of the past has been an ongoing process. The end of one chapter has started a new one. We continue to joyfully grieve as we function forward. My two oldest grandchildren are also diagnosed with my son’s same syndrome as it is hereditary. Our best days are still ahead to create more loving memories to cherish. Joyful moments and Grieving will always be a part of our daily lives. We continue to choose to make it as loving as we possibly can.