Letters to Taylor: On Dementia
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Letters to Taylor: On Dementia
You are an expert.
My Girl,
It’s almost time to turn the lights out once again. Night has come and after preparing you for bed, I’ve paused with my usual thought.
Is there anything else you need?
I wish you could tell me, but we’ve passed that hurdle long ago. Words no longer come to your lips and now, the only sounds you make are the occasional painful outcry or an uncontrolled gasp or groan.
I hope you sleep well tonight. On nights of your restlessness, I’m tempted to just sit and cry. We’ve tried so many things to help you. Medication, essential oils, all-natural sleep aids, light routines. You name it; we’ve tried it to help you rest. But your brain simply doesn’t turn itself off. I can’t imagine how exhausting that is for you! The few times I’ve struggled with insomnia, it certainly left me struggling.
You keep shifting your head from side to side tonight and I am wondering:
Do you know who I am?
I’m your mama.
Sometimes you look past me into the distance, seeing things that I can’t. I know you don’t always recognize me and that’s become more common over the years. Some have compared your disease of MPS to a childhood Alzheimer’s because of the way that your memory and abilities are gradually stolen. Dementia keeps both of us guessing and it’s a nightmare.
It’s tormenting me; I can’t fathom what it must be like for you.
I’m so sorry. I wish I could something. Anything.
Your brain is pervaded with destructive disease and there are parts of you continually clicking off and on. How frustrating that must be. Since I don’t always have physical indicators for when you are “on,” I simply trust that these messages are getting through in some way.
I began writing these letters to you to tell you what’s on my heart. I know you’ll never read them on this side of heaven, but after I write each one and read it to you aloud, I feel a stronger sense of connection radiating from you.
Now people might think that’s a little crazy. They would see you and not know how to talk to you since you can’t participate in a conversation. They would stare at your uncontrolled eye movement or arms and legs that randomly do their own thing. They would think “I don’t know how to communicate with someone who can’t control her own body. She’s not going to respond to me, so I won’t say anything.”
I feel badly for folks like that. They are missing out on getting to know the real you.
There is so much more to life than bodies. It’s strange how humans can get distracted by physical differences and miss the beautiful spirits of the world. It’s a shame that we can be so self-centered that we think our method of communication is the only one that exists. We are so bold to think that our means of processing life is the right one and anyone else’s is plain wrong.
I refuse to let a disabling, degenerative disease force me out of knowing who you are.
You are an incredible spirit. You are kind and sweet. You are a fighter and a lover in the deepest sense of the words. Oh, I understand that there are all types of people in the world. They may not understand you. They don’t understand or communicate well with each other either. But there is something you should know about yourself. You are an expert on priorities.
You know how to inspire the things that matter most.
I’ll pray for you and we’ll turn out the light.
Dear God,
Please be with Taylor tonight as you always are. Let her feel your mercy and grace surrounding her and please give her rest. Amen.
Good night, Sweets. See you in the morning,
Your Mommy
I am always praying for your family. I know chronic pain and suffering all too well in my own body. Pain is a heavy dense cloak that I have been praying for relief from since I was eleven years old.
But I have a broken heart for not only Taylor, but also for you. I know the pain and heartache of caring for a loved one who cannot communicate. My gramma had Alzheimer’s and Huntington Chorea. She lasted fifteen years past what they gave her.
Just know that are not alone. Love you bunches and I will continue praying for you and your family.
—
Dear Heavenly Father,
I am so thankful for the love and compassion for Rachel and her family. But today Lord God Bless Taylor with the relief from the pain, silent suffering, and the seizures.
Father, grant the family members with your peace, love and strength to be with Taylor until You call her home to be with You.
On the same page Father, help Rachel to rediscover her true identity. For so many years her roles have been Mother, Wife, Caregiver, Nurse, Christian Blogger, Advocate, Event Planner, Just to name the ones that I am seeing as an Outsider. Lord, somewhere in the mix of her roles, I am sensing that she has lost her own self. Guide her back to be simply Rachel. Help her to know that she is precious and priceless and a treasure trove in just being herself.
Loving Father, if it is your will, then please allow sweet Taylor to sleep the eternal sleep and be the softly singing dancing Angel who is eternally loved by you. Lord, May You bless The entire Family.
I ask that you meet all of their needs and that because of having to work as a team they become even closer to not only You, but also with each other.
I ask this in Jesus Mighty Name,
Amen
You are such a blessing. May the Lord bless you and your family in this journey you are all going thru. My deepest prayers are with you all.
Rachel
Your beautiful mamas heart❤
All of my prayers for your precious Taylor and His exceeding comfort and strength. May his arms hold you continually.
Vickie
Hello Rachel, I am praying for your family. But I am especially praying for you as Taylor’s mommy and Taylor as she is going through this journey. I have a son with special needs and he never really rests either. After a horrible surgery they had him on pain meds but he still wouldn’t relax so they tried muscle relaxers and it’s the only way he could. Now they help his muscles sleep so he can. You may have tried them for Taylor but if not they may help her rest. He takes Zanaflex. Thank you for your letters to Taylor, you are a great mom!
God bless you rachel and give you more strength. Thank you for sharing your letters
Rachel, what an inspiration you are to so many. I thank God for you and your family. Keep the faith. God bless and keep you.
Thank you so much Rachel for sharing with your strength and your compassion with Taylor she is listening to you in her own way that God let’s her hear what you are saying to her. God will continue to Bless You and your family with lots of love and comfort in the days, weeks and months to come, Thank You and lots of prayers and Love ❤️????
I work with special needs students and I know where you are coming from. When you say people say or think “she’s not going to respond to me so I won’t say anything “ . They are missing so much if they would just stop and talk to her. They would figure out that she does respond in her own way. She is there and hears everything and feels everything. Keep writing her letters and reading them to her. She is listening and feeling her momma’s touch. Just like that one day last week she smiled . Hugs to you and your daughter. ??
Thank you for sharing with us your journey. I know how it feels to love someone so much with an illness that they can’t communicate. My husband passed from Alzheimer’s and it was so painful to watch other family members not accepting. He was not the person they knew but could not bring themselves to know the person he had become. Hang in there. You are being blessed as you are a blessing
Thank you for demonstrating how to love someone who can not actively “love” back. For demonstrating that just because a person is non-verbal it does not mean they do not have the ability to spread joy. For sharing your heart and vulnerability in which it holds. Thank you for living your faith in a way that shines a light on Gods love and grace. In your weakness you are made strong. ?
Thank you Rachel for sharing this journey with all of us. You and your sweet daughter are so so strong and I see Jesus so fully in everything you write. You are a blessing. I wish I could just come to you amd hug you. Please know that you all are being prayed for.
Thank you so much for the kind words and prayers!!
I ?love? you Rachel, and am praying for you and your beautiful family. I do believe that your sweet daughter, Taylor, feels her mama’s love even though she may not be able to respond. I keep thinking of the scripture that says, Underneath are the Everlasting Arms of the Lord, and am praying that Jesus will continue to hold you and your family in His big, strong arms of ?love? and that He will supply all of your needs and continue to give you His strength daily. In Jesus’ name?
amen
You are a hero to me, God bless you and give you peace ❤️????
Bless you.