Posted to our ATRT support group

Our Madeleine, our sunshine, and now, our angel. For 13 of her 15 months of life she fought valiantly against the pineal tumor and won, though ATRT eventually metastasized through her spine, brain stem and abdomen. She earned her wings this morning (01.09.13) in her Daddy's and my arms peacefully after a long day's battle with intense seizures. Forever loved, truly missed, and thankful for God's mercy she is no longer suffering.

Madeleine Angela Vazquez

10.02.2011 - 01.09.2013

And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away -Revelation 21:4

At 12:35am our baby became an angel

Trying to find Joy everywhere

I have to apologize to those I welcomed to come visit and have yet to confirm. We've decided not to have any more visitors. Each day gets harder. In the last week we've definitely taken notice of Madeleine's changes as well her little victories. She's still getting up every day and interacting with us by eye contact. She enjoys watching cell phone videos of herself and her sister. She enjoys looking at pictures of familiar faces. She is still swallowing and taking all of her medicines. Dr Davidson came to visit last Wednesday and spent over an hour talking to her and holding her. She shared with us that she was pleased to see Madeleine's comfort level at that time, which did provide us with a certain level of relief considering what we've been witnessing. She may be coming back to visit this week since Madeleine does seem to be experiencing additional spontaneous pain and we have seen changes. We want to protect her and keep these days private among us; it is very important to Jeff and I that we and everyone remember Madeleine as she really is, a child of wonder, joy, laughter, silliness and sunshine, and not as she is in her current condition.  For that reason, I will not go into detail about her symptoms, disease progression, or our emotional health, but rather share a happy story, Madeleine's  birth story.

A mild autumn Sunday morning, about 5 am a very pregnant mama got up for the 100th time to use the restroom. The night before we attended a 1st birthday party for our little friend Sophie when suddenly I felt very tired that we left and came home. Luckily I was in the restroom when my water broke. I nudged Jeff from sleep to tell him the baby could be coming today, and I went back to bed. For months I had my heart set on an all-natural delivery and had focused my effort on my yoga practice and centering my mind "upwards and inwards." A half hour later, I sent my mom a text, saying "I think it's Labor Day :)" since Madeleine was not due for another week. Another half hour and the contractions were steady and manageable, considering I had recently learned the meditation practice in yoga, and I was able to keep myself half way between asleep yet cognizant of the contractions. By 9:00 am I was packing our hospital overnight bag between contractions and stayed on the phone with my mother, who urged me to get to the hospital as quickly as possible. Rather suddenly Madeleine decided she was coming, and the contractions were about 6 minutes apart. Jeff's father rushed over to pick up Annalise and I shoved myself into the backseat. We lived 12 miles from the hospital. The entire car ride to the hospital was humorous; during contractions it seemed to take everything to keep from delivering her in the car on the freeway! 
Jeff rushed me through the ER up to Labor & Delivery and in 10 minutes the triage nurse realized I wasn't kidding when I said, "this baby is coming now!!" Two nurses and Jeff then rushed me into a delivery room, and within 10 minutes and two big pushes, little miss Madeleine was born at 11:21 am. Her head was perfectly rounded :) We laughed at how quickly everything transpired and we got plenty of envious notes from other mothers at how lucky I was for such a speedy labor and delivery. It makes me smile now thinking about how empowered and connected to Madeleine I felt after her birth, a joyful memory I will have all of my life.

The other day two very dear friends of mine wrote very kind words on my last post about what Madeleine has meant to each of them. It was exactly what I needed to read on a day I felt so glum. We welcome personal stories of how Madeleine has affected people individually or special memories of her. It's just what we need at a time like now.

There is no Balance

New year's has always been my favorite holiday. To me there was something refreshing and truly reflective about starting a new year. I used to have insomnia for nearly two weeks in January deciding on whether I was happy with my life and my decisions and the efforts I would make to point myself in the right directions. 

Five years ago I fell in love with Jeffrey and some other very devastating things happened within my family; four years ago we were in a difficult place but we were together and expecting our first child, and so it went. Last year all our holidays were spent in confusing, desperate emotions as we had not a clue what was going on and what to expect with Madeleine's newly found health condition that was still a huge mystery (she was admitted 12/22/11 and spent every holiday in the hospital). And then of course, this New Year's. I'm just not sure I enjoy it anymore or that it has the same meaning for me. Now that I have reached a place in my life where I make a lot better choices and put my children before myself, nothing seems fair, or just, or appropriate in terms of a personal threshold. Jeff and I have never felt more pushed, more exhausted, more emotionally spent and wasted, and stressed, and anxious, and depressed, and at the same time, blessed. The hardest thing we have ever had to do has been this year; and yet, that still isn't enough. Because by far the hardest thing will be to let go and let Madeleine become an angel. I hate this New Year's. Please pray for us, for me- I feel like I'm gonna lose it anytime.

Because of how sleepy Madeleine was yesterday we made adjustments to her medication under the advisement of the hospice doc. She paid greatly for it, and so did we, as all night long it was screaming in pain and us feeling desperate that we weren't sure how to catch her up and make her comfortable again. We were on the phone with the hospice nurse at 5am, 8am, again at 3pm when we had finally caught her up and we slept. Such a difficult balance for us as her parents: to keep her awake and not sedated from her medication to enjoy what she can while controlling her pain. Yesterday we felt like maybe she was slightly over-medicated, making her too sleepy. We know now she's exactly where she should be for pain control. For personality, it could still be not enough. Madeleine stays relatively quiet during the day, unless she's completely comfortable and we get a couple of her little words. However this morning when she had had two doses of her morphine and was completely knocked out, she was TALKING in her sleep. Really talking, like she used to before the hospital stay, all the words she hasn't been saying since being home. This leads us to believe that she has the ability to still talk, just for some reason she isn't, and could that be because she's quiet while compensating for her pain. Praying for the right answers. 

We are not well emotionally. Every day could be the day, and trying to share her with people who love her is difficult, not for the sharing part exactly, but our little nurtured, cultured, small space for her and talking about her. We have tried for a very long time to establish boundaries for our emotional health; as hard as it is for any other one person, it is exponentially harder for us, her parents. 

Jeff is looking forward to 2013. Me, I'm trying; that's the best I can do tonight. December 31st brought the newest baby cousin, little Julian, bringing hope and beautiful life to the New Year. Hoping to remember the beauty in 2013.