My friend, Brandy with My Epilepsy Story, reached out to me and asked if I would write something that might help others like me, who have experienced the tragedy of loss. Something that would help them be able to get through the holidays with a little comfort in knowing they are not alone. Something that would help make the season a little less painful in the midst of joy! I have delayed her request for 5 days because I’m not sure there is anything I can say to you that will ease your pain or make this experience better. The circumstance is not understood. The situation is not fair. The pain does not get easier to bear. You simply learn to walk with the flame of grief in your hand and let the light from that flame guide your way through this world, rather than letting it burn you.
The first year is always the hardest because you are learning how to navigate and construct a “new normal” for yourself and your family. You have to “be comfortable being uncomfortable.”
Our youngest daughter, Harper Elle Howard, lost her battle to CDKL5 Epilepsy Disorder at the age of 5 years old in January 2016. I had the blessing of getting through her last holiday season in 2015 not knowing that 8 days after the New Year she would no longer be with us. Having 10 months to prepare for our first holiday season without her DID NOT make things any easier. I hated social media memories because they reminded me of what I felt I should have seen coming. The guilt ate at my heart and soul every single day. My nights were sleepless but no longer was it because I had a special needs child to care for, it was now because she was gone! Forever gone!
But I did not have the “luxury” of sitting in this place of darkness and pain, under the covers in my bed. I had two other children and a husband who suffered as I did and needed me. This doesn’t mean I had to be strong and hide my pain. No No! It meant I had to be real! I had to be, as I said before, comfortable being uncomfortable. When my mind was thinking of Harper and my kids would interrupt my thoughts I would snap at them. I had to regroup and be honest with them and tell them I was sorry. Explain to them I was thinking of Harper. I had to connect with my feelings and expose them. I had to be okay being sad and even more so be okay being happy. Even though Harper was no longer physically with us I had to learn it was perfectly okay to be happy. There is a way to be happy and sad at the same time. If you have not yet gotten to this point, don’t worry, you will.
The best advice I received when Harper passed was to try and do everything just a little bit different than you did when she was here. If Thanksgiving was always at your house, have it somewhere else. Keep traditions but tweak them slightly. This helps you remember the joyous times you experienced with your loved one when they were with you but helps you to enjoy that same difficult time with them no longer present.
This journey is a gift. It is an opportunity to experience what many do not get to. Compassion! A new beginning. A new understanding of what life is about. Yes I absolutely wish that I had this level of understanding without having to have a child with daily seizures, without having to have lost that child but the reality is you can explain these feelings to someone all day but until they live it they do not truly understand it! You now have the blessing of understanding. Use this information wisely my friends. May your holidays inspire many!
Penny is a wife, mother and advocate for children living with epilepsy and CDLK5. Penny founded Hope4Harper in 2011 to help seek answers for Harper and fund research for CDLK5. In 2013, after searching for years to help Harper, the Howard Family found an answer to help their daughter with her seizures with RSHO (Real Scientific Hemp Oil). Despite their ability to have better seizure control for Harper, in January 2016 Harper lost her battle to CDLK5…. Harper’s Family donated her brain to science and she lives on with being the first brain having CDLK5 to be studied. Harper will continue to change the lives of millions for years to come. Hope4Harper has been partnering with My Epilepsy Story since 2012 and have become close friends of The McFadden Family. In fact, Lily the oldest daughter of the Howards and Hannah-Kate, the oldest daughter of the McFaddens are now best friends. In addition, the two youngest boys of the Howards (Seth) and McFaddens (David) are now best pals. So Harper and Samuel have forever joined these families.