Wednesday, November 16, 2011

One Day At a Time

It is 11:37 on Wednesday night. Taylor has been in bed since 9:30. Over those 2 hours she has had 2 dizzy spells, needed her shirt changed, asked to be "made comfortable" 6 times, asked to have her socks on her knees (socks with the toes cut out to fit over her knees to help relieve the pain) and needed a drink twice because she couldn't get rid of the tickle in her throat.

Its a normal night. This will all continue through the night. I have become used to it. Its a good thing God made me to be able to survive on little sleep. I wonder though sometimes if Taylor can hear the exhaustion in my voice. Once tonight, she must have because she said "I'm sorry, mommy. This will be the last time I will call for you". I laid with her and told her it was fine but she knows better. No matter how many times I tell her differently, she feels like she is a burden.

It was much easier when she was little. She didn't ask me the hard questions.
"Mommy, will I be able to have a baby?"
"Will I be able to get married?"
"Will a boy even think I am pretty?"
"Mommy, can they tell that I am still in a diaper?"
"Where will I go when you die?"

Its heart wrenching. How do I even answer those questions? Is there a right answer? I pray. A lot. I pray God will give me the right answers as these questions arise. I pray God will give me strength because I know I could not do this with out Him. It would be impossible.

Ever since she was a baby she has suffered from separation anxiety. Its prejudice though. Its only from me. She has been going through a lot of medical things lately and it has made this much worse.

I remembered a quote earlier today from Mother Teresa...it is something like....I know God will not give me more than I can handle, I just wish He didn't trust me so much.

Ain't that the truth! He trusts me a lot more than I trust myself. I worry that I do not do enough for her or that I do too much. I worry that I can not care for her like I should. I worry that I do not give her enough emotional support. Worry, worry, worry.....the list could go on for miles.

I ran across this poem today....

God Chooses Mom for Disabled Child
Written by Erma Bombeck

Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity.
" Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see---ignorance, cruelty, prejudice--- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."

Obviously, that made me cry.
I get asked a lot of questions. One of the most famous is "How do you do it"? I ask myself this a lot but its not towards me, its about Taylor. How does she do it? How does she watch her siblings run and play and be ok to stay in the house with me? How does she hear me complain about my back hurting when every muscle in her body is so tight and painful? How does she feel safe with me when I am so poor at this parenting thing? How does she hear people ask me questions and talk about her as if she is not sitting right beside me? How does she trust God like she does when He has the ability to heal and she struggles so much to do anything? How does she wait patiently to be fed or given a drink because she physically can not do it herself? How can she hear siblings talk about the cars they will drive someday and instead of feeling self pity tease them that her wheelchair will always be able to beat them in a race?

"To the world you may be one person, but to one person you may be the world." - Heather Cortez

I am the world to her in more ways than one. My prayer is that I make this journey as fun, exciting, loving and safe for her as possible.

1 comment :

Charityanne said...

Miranda, I found your blog last summer, I believe...and I've been reading it ever since. I added your blog link to the side column on my blog & I get an automatic notice...when you update your blog. I did this because I find joy in reading about your family. I was raised with my two sisters who have/had a form of Muscular Dystrophy called Frederich's Ataxia. My parents were nothing like you & your husband. I know it's hard on you to look at your daughter & see her go through this journey. However I want you to know, from my seat, what a great life you have given her. I can see by your photos & descriptions of your every day life that you have given her so many wonderful things. most especially you have made her a part of your family life. I know from your point of view she is missing out on so much. However from my point of view she has so much more than my sisters were ever given. I was the "go to" person for my sisters. When the disease took the first one it was me who got the questions from my other sister such as "why was I ever even born". I understand your load. I understand, through my sisters words, your daughters load. I also understand the load your other three children have to carry as they were not effected as their sister was. Every time my sisters yelled "why me"...I had to question "why not me". It is something I've have to come to grips with over the years. I've also had to come to grips with the fact that I had to do my parents job in caring for my sisters. Which brings me back to what I want to say about your family. Your daughter is included as much as you can include her...that is a great, great thing. Also I am so sorry for your exhaustion and overwhelmed spirit. Please know that I am lifting you in my prayers.

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