Nina: Mama, am I going to be like this forever?
Rosy: What do you mean?
Nina: Am I going to be sick forever?
Rosy: No, honey you're not going to be sick forever.
Nina: When am I going to be better?
Rosy: The doctors are going to tell us. You're taking medicine to feel better and you're tummy is feeling better right?
Nina: Yes, but I don't like feeling sick. I don't want to be sick any more.
Rosy: I know honey.
Nina: I don't like feeling yucky....all the time I feel like this...I can't sleep....I need it cold....I need cold stuff in bed and to sleep on you...
Rosy: I know honey, you can sleep on me as long as you want to....remember you have been sleeping well....just last night...I'm so sorry honey
Nina: I don't like how I look....all the time....I am scared....I'm scared of the people....I stare at them and they stare at me....I only want to be in the stroller....my feet hurt all of the time
Rosy: It's okay if you want to be in the stroller...I understand....
Nina: I never get to do anything fun....of the kids get to have fun
Rosy: What are you talking about honey?
Nina: All of the kids get to go to the play structure and run....I can't go to the play structure....I only do boring things....all I do is boring things
Rosy: We can go to the park and go to the play structure
Nina: NO!! (yells at me) I don't want to go to the play structure
Rosy: What would you like to do honey?
Nina: I don't know (very sad!)
Rosy: Do you want to go to the Zoo or to ZoDo's or to the beach?
Nina: I don't know
Rosy: You are so brave Nina....I know you're tired....how about we go to Michaels...we can find a Christmas decoration
Nina: Ya...Christmas decoration....can we buy one for Teddy?
Rosy: Of course! (at this point I wanted to slam the car door on my hand or at least cut myself somewhere!!)
I am not exaggerating. This is exactly how our conversation went. Somehow I did not burst into tears...I don't know how I didn't! I did what I do best....fucking redirect!!!
All I wanted to do was take the pain my precious, sweet, amazing, brave little girl was feeling and pour it onto myself. I have never wanted to hurt myself so badly!!! All I kept thinking was that no one would ever notice if I cut myself on the thigh!!! A small cut would feel so good, would release the searing pain that was inside my soul! Please,please, please, please don't worry!! This thought was in my head for a split second. I will not be cutting myself and I don't need to have 5,000 people checking my thighs for cut marks. It is perfectly natural for these thoughts to cross my mind. People experiencing severe pain like I am have these thoughts pop into their heads on occasion, it is normal, it's just that most people won't admit that they have these thoughts. Every one is so amazed at my strength....well I have little of it....I just control myself well because I have a daughter and son who desperately need their mama to be solid and have the mind-set to take care of them. I WILL take care of my children....nothing will prevent me from doing so, not even my own pain!
The most insane part of this whole conversation is that the hospice nurses literally had just asked me yesterday (Monday) afternoon if Nina was asking any questions about her illness. I had assured them that all she had been asking was how much longer she had to take medication. She had mentioned in previous weeks that she didn't like the way she looked but she hadn't done so in a while. Of course this would happen right after I had convinced myself that she was okay. How can she be okay???? She feels bad! She knows she's not healthy! She knows she is different, not the same Nina!!! She knows that we are all worried!!! This is not, NOT, not FAIR!!!! How can I tell my precious baby anything else other than that she is going to get better! I can't burden her with the reality of what is happening!!! And I am NOT lying to her!!! I am NOT!!! She is going to get better!!! She is either going to be healed from this monster and get to live a long and happy life with us here on this earth or she is going to be healed from a spiritual stand-point and go to Heaven a perfect angel!! Either way she is going to be healed and either way I'm not lying to her!!!
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| Our Beautiful Honey-Girl June 2010 |
My tears and heartache are over flowing at this moment knowing the pain that you express Nina is feeling. I believe with all my heart that God will continue to guide you and provide you with everything you need to help her.
ReplyDeleteLove, hugs and prayers....
Amy
Amazing that both you and your daughter are loved more than any of us can ever comprehend by our creator.
ReplyDeleteI pray that you can have a tiny bit of solace and comfort just by meditating on this truth.
You and your family are being covered in prayer by people who dont even know you. May we all rejoice in being a prayer warrior for your precious angel.
Her picture is a perfect reminder of how we are made in His image. He is perfect!
and so are His plans....
with so much love from a stranger,and sister in Christ.
I am so sorry for the pain you are experiencing. We will be praying fervently for you.
ReplyDeleteRobyn Berdino
Rosy, this is so strange because I hadn't read this until right now, but I was thinking about this exact thing today when I was with Nina, wondering if/when she might ask you these types of questions. Turns out it happened yesterday... As always, you handeled it with such incredible love and grace. Nina could not possibly have a better mother to love her and carry her through this.
ReplyDeleteHi Rosie, you don't know me but I've been following your story and praying for sweet Nina. Your post tonight really inspired me to pray fervently for victory. Nina will get better, she will be healed, she will overcome. Your words are powerful, they speak truth whether it is in defeat or in victory. I pray her mind will be filled with words that promise healing, promise overcoming this disease. No matter what happens she will come out being on top and her life will be the most beautiful of the most beautiful. That is not lying, that is truth and you must believe it. When she gets to heaven, 80, 90 years from now or tomorrow, she enters feeling healed, feeling victory, feeling complete.
ReplyDeleteRosie, You don't know me, but I've been reading your blog and feel so much for you, Nina and your family. You are such an amazingly loving, present and committed mother. Keep loving your little girl, and remember that she may benefit tremendously from the talks she is initiating with you. If she can ask you questions like she did, and if you can talk with her about all of her thoughts, feelings and experiences with calmness, acceptance and an open heart, she will feel relief. Maybe she's asking you to be able to hear her inner thoughts, fears and questions. Please don't think that you will cause her more pain by letting her voice these inner words. Don't feel you must quicklyy distract her, divert her attention or immediately remove her feelings. It might be that you will calm her fears by showing her you can be with her no matter what she needs to share with you, that you can handle this together, that she can be her real, genuine self with you even if she's scared, sad or confused. She knows she'll be okay if she can be with you, in all her different thoughts and feelings. It might be hard to sit there with her pain, but she needs you for that, along with all the many, many, many other things you are doing. You are a fiercely loving mother and a strong woman, Rosie, even though you are in SO much pain. You would do anything for Nina. You can do this too. Sending my love, Julie
ReplyDeleteThank you for your continued honesty, Rosy! Thank you for saying what goes through any sane, stressed woman's head. You are ministering to many I am quite sure even though I can tell you feel only ministered to by so many who are praying for Nina and your family! I pray for your heart to be protected and for continued strength! I know you need it! Continue to keep your eyes heavenward and when you can't, look to those who will gently tip your chin up. I wish I could be that friend for you, but since I can't, I continue to pray! Blessings...
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