This Is My Truth
An important value to me is changing the outcomes of children born with sickle cell disease. The person who taught me that value is my Mom.
I hate sickle cell disease and I hate the suffering it has caused my Mom. She is slipping away and it hurts. The last few months with her has been nothing short of an emotional rollercoaster. In just a matter of weeks I've watched her go through many physical and mental changes. It is hard to recognize the strong, feisty superhero anymore. One minute we’re having a fluent conversation, next she’s having outbursts of laughter, misdirected anger and then comes the vacant stares. 73 years of constant complications from the disease she is chronically fatigued. We’re both losing it.
I’m grieving the loss of a living parent. On her difficult days I crave the smallest gesture of my Mom recognizing me. I desire to hear her call me “love bug” and I respond by calling her “lady bug.” I want to be held in her bosom and familiar arms. I want to see her smile to brighten the day; tell me the not-so funny jokes only she laughs at; and ask me the routine question of the day “hey love bug, whatcha doing?
I miss my Mom. I grieve the loss of her even though she is still physically here. In her moments of clarity, she hints to me with her eyes, that she is still fighting her best, but is tired. Not talking much anymore and when she tries to speak, the words don’t always form like they use too. So, I talk to her. Read scripture. Play gospel music she grew up with. I comb her hair. Hold her hand. Watch a cowboy movie. Hands down, all episodes of Bonanza are her favorite.
Mom has lived 40 years longer than expected with Sickle Cell Disease. I understand her weariness. I know I can’t expect her to continue like this. Through thick and thin, we’ve been riding this train together as long as I can remember. I want to ride with her longer. I feel we both have been cheated. Although she has always bounced back from a health crisis, I’m afraid this time is different. I recognize I’m being selfish. I don’t care. She is Mom. This is my truth. I am not okay with her pain or struggle. And yet I see a greater purpose.
GROWING PAST THE PAIN
In a rare moment of absolute stillness and clear thinking, Mom asked me to pick out a dress for her burial. She went on, Do you have everything in order? Will you take me home to Birmingham? Or am I going to stay with you? I realized she needed these answers so that she can be at peace. Even though I’m not 100% at peace about any of this, I will honor her. And so, I’ll complete the details. It’s not enough to have life insurance, but what she’s asking me to do is plan every single detail through to the end. I’ve completed plans before. But this one is by far, the hardest …...I can’t catch my breath. I tell myself that my superhero needs me, and I ask God to give me strength. I remind myself it’s not about me, it’s about her.
The truth is Mom wants me to be ready. Prepared to do the difficult thing when the time comes. She also wants me to continue the vision burning for Tastefullydone Hometique. She reminds me, “keep the candle lit ….” I smile to myself because she loves the logo image. The flame draws her attention.
I remind myself that God provides us grace for every moment and every need. Grace that turns confusion into clarity, fear into courage, and trouble into triumph. I remind myself of my supermom; my personal living role model and example of the goodness of the Lord. When I do this, I can rebuild, regroup and rebound! Hot tears, snotty nose, migraines, chest pains and all. I pull myself together one hour, one day, and one week at a time. Her disease reminds me that her living is not in vain. Others with sickle cell disease need help. If I can share a word of encouragement, speak my truth, raise money to benefit children born with this disease; and help caregivers who will board this same train and travel similar paths like my Mom and me, then her suffering has not been in vain.
PARTNERING FOR A SOCIAL & MEDICAL DIFFERENCE.
In my last post I asked you to keep your eyes peeled for my next blog to learn more about Tastefullydone Hometique’s buying with a purpose to benefit Sickle Cell Research. Well I am happy to let you know that Children’s Hospital of Philadelphia is a proud supporter of Tastefullydone Hometique. Tastefullydone Hometique is raising $1000 for Children's Hospital of Philadelphia through an online event called Campaign for Sickle Cell 2019. The Campaign is open now through December 31, 2019.
Tastefullydone Hometique will donate 10% of proceeds, up to $1,000, from the sale of products, including sales of home fragrance collection, T-shirts, and handmade marketplace items. Follow the link below to learn more about children with sickle cell disease. To donate log onto my website. Check out my products and purchase with a purpose Or simply click on donate to sickle cell.
Funds raised will benefit the Sickle Cell Center at Children's Hospital of Philadelphia (CHOP). Will you join us? Join us in making the difference in the lives of children to help find better treatments and provide patients with much-needed programs and services. And most of all, help all children reach their potential.