another star in the sky

Yesterday, God took back one of his angels. After four months of gracefully endured battles, Annie returned to heaven. I am grateful for the time I was able to be in her presence. I first met her mom, Amy when I was speaking in PICU parent hour and we have been connected ever since. Amy and Cameron, you are all in our prayers. I hope you can find some peace in knowing that you will be together again. Until then, Bridger, keep and eye on this sweet little girl.

Yet another anniversary.....

One year ago today, Bridger and I set out for the miracle that he needed to be able to keep living. With tears in my eyes and hope in my heart, we said goodbye to daddy, the grandparents and all those we love. It was scary to go, but we knew what must be done in order to give Bridger every possibility at life. This was the last day that Danny was able to hold his baby boy alive. I know that the upcoming weeks will be difficult, but I never would have imagined the overwhelming sadness that strikes hard and heavy at any given time. When it does a wave of exhaustion takes over my body and I feel as though I have nothing left inside of me. I try to keep busy, but at the same time I don't want to erase the pain because that means I am erasing the happy moments as well. Bridger, mommy loves you. P.S. give daddy a special kiss tonight

One more thing, sweet Annie continues through her struggle. Please keep her and her family in your prayers.

Pioneer Day 2009

Okay, so Bridger doesn't look totally thrilled right now, but he was too busy watching the other children outside with us to pose for the camera. I hadn't really thought about it until that night, but up to that point, Bridger had never really seen any other kids or babies. Our little family, along with about thirty other hospital families were out on the third floor terrace to watch fireworks. I didn't talk to the other families out there, but I am sure no one would complain because being there to celebrate meant that our children were still alive. We didn't stay out for long as it was way past mine and Bridger's bed time, but we were able to see different fireworks from all over the valley. This was a GREAT night together. Bridger, mommy loves you and misses you so....

Strange......

Even after many months, I still find myself feeling as if none of this is real, as if my child didn't really die almost a year ago. I continue to perform as my "functional self" (sometimes) with intermittent moments of coming to my reality of being an "angel mom". I have cut way back on my obligations in preparation for what is coming, but even that is not always enough. Again, I have been sorting through some of Bridger's things, many still have the tags as we never had a chance to use them. I am hesitant to pass them along because we got them for our son and he never used them, but I remind myself that someone else could be using these things for their baby who isn't sick. And so I place them in the pass along box. Now, I am not giving up the things that were most special to him, but I still feel a pang of guilt giving away the items we picked out with him in mind. Our "adopted son", James will be moving into our house soon. I say "adopted son" because he is our age and we have known him almost twenty years. He does, however, help us to be a little more functional in the world. In a strange way, we feel like we need to take care of him although he absolutely does not need us to. We are better about cooking meals and participating in life when he is around us. So hopefully his living with us with be beneficial to him too. At least this way our house doesn't feel quite so empty. He will be staying in our office and I have moved the office into Bridger's room. This is nice because now I can do my homework and be surrounded by even more memories of him, I feel at peace in this room. Lately, I am noticing many children about the age that Bridger would be and it is difficult to be aware of the reality that we will never see him walk or swing or play in the sprinklers (not on earth anyway). Next weekend will be one year from our last holiday together (Pioneer Day), out PICU nurse escorted us out to the terrace so that we could watch fireworks together. We were surrounded by many other children and families who were on similar roads, celebrating holidays in the hospital. It was a nice night together, but of course ended all too soon. Bridger- I miss you.......

The fog is rolling in......

A couple of topics on the table for this post:

This weekend marks another anniversary, this is the last weekend that Danny, Bridger and I were home together as a family. We weren't foolish enough to think that we would not return to the hospital, however, I did not expect our next admission to Primary Children's to be our last. Danny and I have both been moving into a fog as this weekend gets closer. Last year on the 4th of July, I had the fireworks in New York on TV so that Bridger could watch them before he went to bed. But, he had no intention of disturbing his routine by staying up late for such things, so as our usual, we went to bed at 8:30 pm so that we could be up for 2:00am meds. Truly, this was our best 4th of July to date. This year, I am working in hopes that the holiday will pass quickly. I will ask for forgiveness in advance for the upcoming weeks. I am sure Danny and I will remain in this fog as we approach the one year anniversary of Bridger's death and funeral along with his 2nd birthday. These days will not be easy for us.

On the second note, another heart hero is deciding whether to continue her journey on this earth. I met Annie and her mother, Amy a couple of months ago when I was speaking at PICU parent hour and have been keeping an eye on them ever since. Every time I meet a new heart hero, I can't help but have the thoughts that this might be THE one to overcome the many odds that are stacked against them. Annie was no different, in meeting her and feeling her sweet spirit I couldn't help but think that she would be THE one, the medical miracle to prove us all wrong. And though her life to this point has been one miracle after another, I still want so badly for her to be the one in twenty years to stand up and say "I did it and your child can too". You all know that I had these same thoughts about Bridger. I know that every moment of life for these amazing babies is a miracle, but that doesn't mean that I wouldn't be grateful if another moment were offered. Please pray that Annie, Amy and their family have the strength and courage to follow the paths that have been set for them. Just as Annie's life has always been, these next hours and days will not be easy for this amazing family. Amy- I know that your family will have the grace that is needed for the trials that lay ahead. You are in my heart and in my prayers.

And as always, Bridger, Mommy and Daddy love you and miss you every moment of every day!

the funeral

Well, I went to that little hero's funeral on Saturday. I had been asked to speak and graciously accepted. I didn't realize it before hand, but this was the first funeral I had been to since Bridger's. I walked into the building and found the parents to offer what comfort I could and was keeping it together quite well until I walked over to this little one lying there peacefully in the casket. I lost it- again another flashback, but also the reality of the pain and sorrow that these parents are only just beginning. As I sat in the chapel, waiting for my turn to speak, my heart was pounding. I didn't know if I could keep myself collected long enough to say the words I needed to say in order to honor this sweet child and offer some kind of comfort to the parents. I began pleading for strength to help me through the upcoming moments and quickly, I felt my baby boy at my side. My heart slowed and I became composed as I began to walk up to the podium. Up until this point, I have always known Bridger was not far from me, but until this moment I have not yet felt his presence so clearly. My sweet boy, I try not to ask much from you. Only for your happiness and peace where you are, but I am grateful that you held my hand so that we could do our part to honor another hero who has moved on. I love you.

Another fallen hero.....

Wednesday, I received a message that another amazing heart baby decided not to continue his battle with Congenital Heart Defects. I first met this amazing boy at the hospital, not long after Bridger died and was drawn to him because of his sweet spirit. I began to get to know the family and become quite attached to this little guy. It breaks my heart every time another mother has to join the "club" of being an angel mom. Words can not express my sorrow for the trials she is about to face. Please keep this family in your prayers and Bridger, keep an eye out for this new angel.