Wednesday, August 20, 2014

a delicate balance...


My girl is home. I thought that would make things easier. It hasn't. These new seizures still come with great frequency even though we are slowly increasing her medication.

The last thing any parent wants to hear is "There is nothing more I can offer you. We have done all we can." I have heard it way too many times in my daughters lifetime and I will admit that this time it really has hit me square in the heart.

When we were inpatient earlier this week, we saw lots of med students again and residents and attendings both in Peds and Nuero. I know we have a rather unique story to tell and I know it is my job to tell it. This is what Court does. She shows people that there is a person inside her skinny little self that deserves to be loved and respected.

But when you make a six foot four male physician cry and tell me what a good mother I am and that the only reason our daughter is even alive is because we have cared for her so well, I really can't take anymore.

Really, I am done.

I know it's selfish. I know it's breaking the whole "share Courtney's story and change how people look at the disabled" life rule, but you know what...this mother is hurting right now. This mother is scared right now. This mother just wants to curl up with her baby girl and protect her form all the suffering she knows will come.

This mother is tired of all the ER visits, hospital stays and med changes. This mother is tired of all the medical bills and financial distress that is making her older by the second. This mother is tired of adult diapers and nasty laundry. This mother is tired of worrying about her hubby being laid off and being without a paycheck or medical insurance.

This mother is just plain tired and I don't see any breaks in the near future.

For the first time in a long time I thought about life without Courtney today. It was pure hell. I do not know who I am without her. We have been a team for so long. I know when she's going to have a good day or a bad one from the first five minutes she's awake. I can get her meds in the right amounts in the dark. I know when she is hungry without her saying a word. I know when she wants to lie down or sit up.

I know her better than I know me. What the hell am I going to do without her? I know I shouldn't worry about it. The grace will be given when needed. God is in control here not me.

Not me at all.

Someone asked me how I was doing with all this. Not well I have to say. I am not in the mood to blow sunshine and rainbows up anyone's patoot. This is hard and I am sad that we have been asked to walk this road. I don't want to. I really don't. 

But then again, who does?

Yes, I still believe that God has my Courtney's and my best interest at heart.

Yes, I understand that God is asking us to trust in a brand new deeper way.

Yes, my knees are battered and bruised by the amount of up and down I have done praying for some clarity and a few answers.

No, I am not angry with God. I don't have time. He knows my hearts desire. No need to waste the emotional energy on anger. It won't change anything. All it will do is drain what little joy I can muster these days and that is not acceptable at all.

My daughter deserves more from me. She will get more from me.

So we will take this one day at a time. God has the timeline, I do not.

Just another day NOT in paradise...to God be the Glory now and forever...

23 comments:

  1. Mary. This is good. Say it and say it and say it. This is as much the truth as the sunshine and rainbows (which you do so, so, well.) We're here with you to listen and bear witness to the hard and heavy road you are walking. One thing I know: there's always enough grace for THIS day. Stay in that place. Love you and love your faithful, tender heart.

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    1. YES! Just this. Holding you in my heart and in my prayers, sweet Mary.

      ~Aimee (aimeekate79 on IG...you know, the one who loves your dancing :))

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  2. Mary - Oh - what can I say? My heart aches . . as a sister in Christ and humanity who cares . .as a mother who knows a mother's love. What can I say? I can say that I love you. I love Courtney. And I trust in Our Father. I trust that he holds you both in his hands and that he cares for you as he does the sparrows. Courtney is precious to him. I have no idea what the days hold for you but I keep you in my prayers and every morning as I meditate on my favorite verse of comfort and joy:

    Romans 8:38-39New International Version (NIV)

    38 For I am convinced that neither death nor life, neither angels nor demons,[a] neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

    Sending you my love.

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  3. What a road you have to walk to teach all of us! We do learn so much from you, Courtney and your family and send our prayers up for all your intentions. May we all learn to love and trust as you do!

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  4. Wrapping you up in a giant hug, and wishing I could do more. Will continue to send my prayers. And thank you for your willingness to share the downs as well as the ups. (((hugs)))

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  5. Mary, your witness and work means so, so much to me. Thank you for writing and sharing Courtney with us. Continued prayers for her and your family!

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  6. My heart and prayers are with you.

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  7. You are such an incredible woman, Mary. Your love and compassion and strength shine through every beautiful word you have written here...something every caregiver would be blessed to read. You and your sweet Courtney are in my thoughts and prayers.

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  8. mary, i read you posts often and reading this one has made my heart break for you. there are no words. you are right. the words, "we have nothing more to offer..." are difficult words to hear...especially when they refer to your child.

    you will be in our prayers.

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  9. My heart has been aching for you all, for you especially. I too understand the identity wrapped in our children, in our mission to guide them through life. Your mission has been all the more poignant, and now as the world is changing for you yet again, I cannot imagine the pain you are feeling. I ache to meet you and Courtney. I desperately want to honor you with a Hug, just a simple hug. I have no idea what good that may do, but it is for some reason pressed deeply in my heart. Grace is what is left to offer, grace, and you have done that so well for so long, Let HIM carry you and Courtney the rest of the way. I am praying...and praying,... and offering up every silly little thing I can for you both. For HIS is the Glory... +AMDG+

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  10. Mary, in the short time I've known you, you've taught me so much about love and devotion and trust in God. Thank you for that. Thank you for sharing your love with all of us. I'm praying for you now, and for your beautiful, precious Courtney.

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  11. Dear Mary, thankyou for telling it as it is! I really appreciate that! My life has some big messes in it at the moment and sometimes I want to just give up trying.
    You say you know Courtney so well, that is your job right now and you are so good at it having learnt humbly to care for her.
    When the time comes, God will form you for your new role whatever that may be.
    You said "I know when she wants to lie down or sit up." This is what God says about us in the scripture! He knows our sitting and our lying,mono thing passes him by, not one second of us lives goes unnoticed by him, it is all precious to him.
    Please, know that everything you are doing, the diapers, the laundry the worrying for your husband, is important to God and to all of us who are strengthened by your example and witness through this blog. We are all with you, cheering you on as you also cheer and support us. I love to read EVERYTHING you write! And it helps me so much, you will not know until heaven how much good you have done to my soul. Praying and praying for you all and God continue to Bless you. X

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  12. I've been storming heaven with my prayers for you guys! You are doing a hard job, Mary, and you are doing it well. I will continue to pray fervently for you all.

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  14. I have never dealt with long term illness and disability. I do know what it is to be terrified of losing your child. My youngest son had a life threatening disease at 5 months of age. We were fortunate that it was treatable, and that unlike many children who get this disease, he has had no long term effects. My oldest son has an autoimmune disease that he was diagnosed with at 17 years old. He has to take anti-rejection drugs every day in order to continue to live. He also had a severe brain injury when he was 19. He will be 26 on Saturday. It is a miracle he is still here with us. I do recall the long moments when he was comatose, though. Those moments of wondering if he was near the end of his life. It is not a good feeling. As a mom it is terrifying and nauseating. You wish you could switch places with your beloved child and take away all the hurt. Your heart aches with pain and sadness.
    Oh, Mary, how I wish I could take all your pain away. Courtney is loved and so are you, Jonathan and Jerry.

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  15. Love you and bless you and your dear baby girl. XXOO

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  16. Aww so sorry that you and Courtney are going through this trial.. Praying down here in Louisiana. May Our Lady hold you in the bend of Her arms

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  17. Beautiful you and your dear family are in my prayers, Mary...

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  18. You are so beautiful, both of you. It makes my daily struggles seem so insignificant and yet I feel strengthened knowing you ladies are going through this. Uniting my little trials with your big sufferings and offering them up!

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