Tuesday, June 19, 2012

The Heart of The Children

So much has transpired in the last few months.  The love and support of many is still so amazing.  Over this 11 month period, Mireya has been an exemplary patient and a true fighter.  She presses through with a resilience and a flow that is beyond words.  We try not to place a lot of emphasis or focus on her illness.  We do what needs to be done, have our checks and balances and keep it moving.  God is working it out and we're pressing toward the mark of victory over this diagnosis.

Mireya was 3 years old when this all began, about 4 weeks before her 4th birthday, and a brand new 4 when she was diagnosed.  She has been a trooper.  There is a lot about this journey she does not have 'words' for which has presented itself at times as what I'll describe as melt downs.  Something very different from a tantrum.  It's apparent in those moments, she is overwhelmed with her emotions.  For all she has gone through, I think she is entitled to a few breakdowns.   I've certainly had my share throughout this ordeal.  Please pray for Mireya's emotional well being and the ability to continue to do all that is asked of her as we work our way to better.

As Mireya gets older she is more 'aware' of things and has been more vocal about things upsetting to her. We had not realized how sensitive she's gotten about her hair until a recent melt down involving her sister. I took Makinley's hair down as I prepared to wash it.  Mireya's hair is growing back beautifully, but when you have a three-year old sister with hair down her back sashaying around you just might have a moment.  Anyone remember those 'You Just Might Be' books, a lot of those points were hilarious.  This not so much. It struck Mireya like a freight train.  She started crying and sobbing that she wanted her hair back.  She wanted long hair.  It broke my heart.  She asked me why I had her hair cut.  I sucked back the tears and explained to her that one of the medications she took last year made her hair start to come out and we made a decision to cut it so we didn't have to watch it fall out. That was a hard day, but I'm glad we did it that way.

We've never made a big deal of Mireya's hair.  She's gotten into wearing hats, which I could never get her to do before.  We've tried a few neat things with her hair as it grows, which she's liked.  We have cool hair accessories, but deep down in her heart, she misses and wants her hair.  That is a very real emotion.  It's just not one she has voiced until now.  I tried the whole your hair is still longer than Mommy's (enter the Family Feud strike gong) that does not work anymore, because Mommy just keeps cutting hers every month or so.  It hurt to hear and see. We are believing Reya will attend school this Fall.  It's definitely different going from a program with other kids in treatment that look like you to the big wide world of public school.  Keep this in your prayers. We hope highlighting individuality and her uniqueness will reinforce how she feels about herself as opposed to focusing on hair.

Summer has always been a time for us to to enjoy water activities.  It's something we've obviously had to curtail due to Mireya's Hickman Catheter.  Mireya asked me last night if she could have a pool party when she got her line removed.  Again my heart sank at the innocence of the question and the huge milestone she realizes it is.  I told her she would 'absolutely' have a pool party when her line is taken out. The first of many parties and celebrations.  So we definitely have that to look forward to.

My Super Hero boy/brother Jalen has also been walking around with a heavy heart.  When his sister went into the hospital, he was worried if she didn't get better that he was going to have to 'do something' again.  Jalen and I talked at a base level about his having to 'do something' and he began to get physically uneasy just speaking about the possibility of being his sister's donor again. Since then, we've broached the subject with Jalen very gingerly. There is no need to discuss something that is merely a 'maybe', but also Jalen is the kind of child who would be consumed by reliving in his words what was 'a good thing for his sister and her life, but he didn't have a choice about doing it".  Jalen did great during the transplant process, but how a child processes events varies and obviously can be a frightening place.  A transplant via the boost would require more this time and it is likely we will only share with Jalen what we deem necessary when we have to.  I don't want him internalizing what appears to be a concern for him through his own deducution of information.  Bless his heart.  

The one thing Jalen has wanted or asked for over the last year is an Ipod Touch or an Ipad.  I was surprised to see that several of his classmates had an Ipod Touch.  He has asked a billion times about the possibility of him getting an Ipod Touch or an Ipad.  I told him maybe he could get one for Christmas, but that it was a really big gift for little boy, but just maybe.  I still happily live in the world of the Blackberry, but after investigating the Ipod Touch as opposed to the Ipad, I'm inclined to go a few hundred more for the Ipad.  It just seems to make more sense because it would be a gift that they all could use.  I am making a confession....IF Jalen has to go through being a donor a second time, I'm going to do all I can to have an Ipad in his possession as he recuperates.  The gift he is giving his sister is priceless and I will do what I can to make that happen.  I'm proud of him.  Even in his fear, he knows what he is doing is helping his sisiter's life and even if he feels he doesn't have a choice he knows it's a very good thing.  So if your in the know or have a connect, that is definitely my hearts desire for him should we have to repeat this process.

I've spent a few nights mulling over these conversations and instances with both Jalen and Reya, all of it filling my eyes with tears and my heart with sadness, but I will delight in the day that Reya's hair has grown out and she can take a bath with more than a few inches of water or she can jump in a pool.  Well I'll be delighted, but with a different appreciation for doing two little curly heads.  I will relish the moments where she is free of all issues and Jalen can relax without rotating a thought in the back of his mind about being a donor for his sister.  If he happens to be downloading an app on his new Ipad, more power to you big brother, you more than deserve it!


  1. Amen. Once again, you've said it all.

  2. Wow. So much to process. You'd think its all just about beating the illness but you've opened our eyes to all of the other challenges that come with illness and recovery. Thank you for your openness and candor.

  3. You have excellent writing skills. This is an amazing article. You should post more often....