Saturday, November 5, 2011



There are times when the realization that hindsight is 20-20 is frustrating, and other’s when it is enlightening, and the latter is the case this time.

Hindsight this time allows me to acknowledge a joyous, wonderful thing…..and at the same time, requires some processing for me.  Sometimes I process best by getting it “down on paper”, so here I am to share this journey with you all.

Last night, my precious Madison actually asked to wear make up and took some time finding an outfit to wear, and even accessorized said outfit for a dinner out with us, and her grandparent’s and great grandmother. 

For most this would not seem significant…..and for some they might even be saying “ugh” about their 14 year old daughter wearing make up….but in this house, for Madison to have the energy to even care about how she looks, is a huge gain!!  Miss Abby will always be the fashionista in this house, but the realization last night is that, when there is energy to do it, Madison DOES care about making herself up.

However, the greater realization is how bad things were before, and that we were in that “bad” place for a long, long time.

There is a whole combination of things that have changed to get her “here”, none of which, on their own seemed to do the trick, but together seem to finally have gotten her over a very large hump she wasn’t managing to get over on her own.  The only question at this moment is whether her body will continue to cooperate with the changes, and if we can keep future hits to her system to a minimum.

I don’t know how successful we can be, but do feel like we will ALL be even more proactive in the future with her…..we know how far she can fall now, and no one wants her back there if we can help it.

I am rejoicing in where Madison is right now!!

However, I’d be lying if I didn’t say that it’s a bittersweet joy.

To make last night happen, she rested all day, was tube fed the majority of her nutrition and fluids, and was on oxygen for the majority of the day.  She had enough spunk to get up at 5, get dressed and put make up on, make the trip across town to see family and have dinner, but was “done” about 8:30 and ready to head home.  And the effort last night meant that she just didn’t have it in her this morning to get up and make it to horseback riding therapy, and I suspect she’ll be low key through today and maybe even tomorrow.

All to say, it’s taking a lot of support for these rather brief moments of activity, but considering where we were not that long ago, this is still a huge success.  And we are ALL celebrating these moments with our girl!!

As sweet, or maybe even sweeter, are the moments in between the bigger energy expenditures…..the moments here at home when she is interacting with us all, bantering, teasing, laughing, and being a PART of things.  I have missed that the most this year….seeing that spark in her eyes, hearing that belly laugh of hers, and just watching the wheels in her head actually in motion.  So while the big expenditures of energy are still rather few and far between, are requiring a lot to make them happen, and are all too brief……these smaller expenditures are now happening most of the time, and are in reality, the ones that are the most important. 

In hindsight, I can see just how bad things have been this year…..and appreciate more the gains we are making now.  And that friends, is a huge blessing.

I want to finish with some words about my daughter, and I am feeling rather verclempt as I write them, so bear with me.

Madison has always been my strong, stoic child.  We have said since she was little that she was an “old soul”, and that it was as if she had been here before and just knew all would be okay.  She has endured more than most in this world, and always with a tremendous grace and dignity that clearly comes from some inner fortitude that was bestowed on her.  She has had to work harder for every gain, with less energy than others; and her bravery in the face of tests and procedures has been super human in my opinion.  She doesn’t whine about it, makes the best of every moment, and shows us all how one lives this life in the moment, appreciating it all.

Having said all that, the last three years have been HARD for her.  Harder than ever before, and at a time when she “gets” it all more than when she was little.  She incrementally was losing more and more, and feeling worse and worse, and nothing we were doing to try and address it really seemed to be making a difference.  I know how desperate I was feeling, I can only imagine how it has been affecting her.  By early August this year, she was as close to bed bound as one can be without being completely there, and the simple act of just interacting was more than she could manage. 

I cannot possibly express how inspired I am by how she has handled it all…..all of the struggles, all of the changes, and all of the new, worsening, normals.  She has maintained her positive attitude, shown us her strength and fortitude, and never, ever let what was happening get her down.  She has more than tolerated all of the new supports in place, has been handling it all herself since we started them, and has made the best of all the new equipment in the house by naming them all…LOL!!

She has shown us all a new level of strength and grace….and I could not be prouder of her.

I am sure Madison would agree that we would not have made it through this time without the support of our friends and family, so THANK YOU!!  Thank you for the thoughts and prayers, the phone calls, and for just being there for us.  Chance & Abby, as well as so many others, have been Madison’s cheerleaders when she needed them the most, and we cannot begin to express how much it means to us to know you all are out there for us.

Now is the time you get to REJOICE with us!!!

Love & Hugs,
The M’s
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