Wednesday, July 13, 2011

Preparation







I'm back in the hospital with Mireya and it's so good to see her laughing, playing and have better days. I love her so much and I want her well. Her innocence is heart warming, her discomfort is painful to watch, and her lack of 'full' understanding is difficult to work through at times. It doesn't matter how much you 'think' you've prepared someone or how prepared you 'believe' you are, when certain things happen it can still take your breath away, stop you in your tracks or shake you to the core. I want Mireya to be a happy 4 year old little girl without Severe Aplastic Anemia. I want her to be able to go outside and play, be around people without fear of infection or illness, I want her to be able to go to preschool, take a bath, or swim in the pool. She was really beginning to enjoy swimming again before all of this happened. Right now that is not my reality. I understand the 'why' behind most of this. She knows and understands the ultimate goal is to have her better. She's grown accustomed to the Hickman line and not getting it wet. She hates getting the dressing changed, but that line has made life a lot better (no more sticks)..happy, happy, joy, joy!! She gives us less of a struggle when it's time to put on a mask (donned with Princess stickers of course) because she understands even more about bacteria and how it is spread and that it can make you ill. She knows that despite how much she wants strawberries, grapes and apples that she cannot have those things right now.

What she still doesn't comprehend is how long she'll have to be here and why she can't just go home and be with her family. Jalen told me at breakfast on Monday morning that he couldn't wait until Mireya could leave the hospital and we could all be back together at home as a family . It's evident when I watch Makinley run into a room I'm in, just to 'make sure' I'm still there. Or when she repeatedly says 'I want Reya', the detachment is real for all of us. We're doing the best we can to remain connected. The hospital is not the place for your kids to hang out. This is the place that your sick child heals, recovers and gains the strength to go back out into the world. They don't understand why they can't see one another every day and we have several more weeks here to maneuver through. It's hard for Mireya to see a video of her sister monkeying around inside 'that green place you were in (Chili's restuarant)' because she wasn't there. She doesn't want to hear me tell someone how proud I am that Jalen swam across the pool without stopping because she can't swim right now and she wasn't there to see it herself. I dare not show her the pictures of Jalen and Makinley on the Slip n Slide, but it's equally important that they have some semblance of normal life and activities.

The one thing we contemplated before we arrived was cutting Mireya's hair. We were given a few scenarios on chemotherapy and her hair loss and we decided against cutting it ahead of time. Hair loss with chemo is a common. It's a physical reaction to a chemical process. We see it all the time, but when it's happening to your child it's difficult to watch. As I was freshening up her hair, it was hard to see all that was coming out. I thought 'wow' a few more times at this rate and we'll have little to no hair left! Our attending nurse saw the small pile of hair beside me and told me it would be all gone by next week. Apparently week two is rough. Doesn't matter how much forewarning you have, some things you are just not prepared for. I did a pretty good job of holding it together, but eventually I just broke. I've learned over the last week to be even more sensitive to how 'life outside these four walls' affects Mireya. She has moped and whined about wanting to leave here. I believe if we had not been here 24 of the 35 days prior to the transplant she may not be at this place so soon. Last night for the first time she cried and it was not a 'I just want to leave cry'. It was a 'I need to leave this place' because I miss my family, I miss my friends, I miss my life as it was before all of this. Actually she was sobbing uncontrollably and I understood, but all I could do was love her up and try to make her feel better. There are times it feels like more than we can bear, but we find the strength (God gives us the strength) to move through these moments.

“Great is Thy faithfulness, Great is Thy faithfulness, Morning by morning new mercies I see: All I have needed Thy hand hath provided, Great is Thy faithfulness, Lord unto me!” I believe God has something tremendous on the other side of this for us. Please keep us in your prayers!

6 comments:

  1. Your faith and strength is truly inspiring! You are always in our prayers and thoughts.

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  2. Thank you so much!!! It is appreciated more than you'll ever know.

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  3. Venus, my heart aches for you and your family. I'm not going to tell you how strong you are. That you already know, and it's because you have to be. You weren't given a choice. I know what it is like to have something 'wrong' with one of your kids (my middle child has Autism). It is exhausting and your heart breaks a million times over. Some days are better than others and even on a good day, you turn around and BAM!, there goes your heart breaking all over again. It hits you like a ton of bricks out of nowhere. That part I understand but I honestly cannot fathom the mental and physical toll this disease has had on your precious little girl, and your whole family for that matter. I know that we don't know each other all that well, heck we've only met once in person, but from one Mom to another....I'm very sorry you are going through this. While I hope I never ever ever have to go through what you are experiencing, if I do, I can only wish to have the level of fortitude and grace you have displayed during this whole process. Sending love, light and prayers for better days in your near future.

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  4. awww Angie thank you! I appreciate you reaching out. Thank you for your prayers and love and I know without doubt those brighter days are on the way. It's a up hill battle from here and we're taking it to the top one day at a time.

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  5. April's friend SusanJuly 16, 2011 at 11:11 AM

    Yes, Venus, great is His faithfulness . . . Great is YOUR faithfulness. You are an amazing witness. God bless you.

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  6. Thank you Susan. It's only by the grace of God that I am able to press through. I know on the other side of this is something great.

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