Sunday, October 23, 2011

Grace's Angel Day

It was one year ago today that we lost our baby girl. Unlike today, it was a cold and rainy day. As we held her tightly we watched the rain streak down her nursery window like tears. It was undoubtedly the worst day of our lives.

There hasn't been a moment that's gone by we don't miss her. She meant the world to us and her loss has hurt us deeply. I wish I could say it's gotten easier but it hasn't. Losing a child is simply too great a pain to get over. So we learn to live with our pain and go about our lives surrounding ourselves with memories of her.

We're grateful to have so much support from our friends and family who have helped make this last year a little more tolerable. Their willingness to share in our memories of Gracie has been a godsend.

Today, we're going to visit her gravesite like we do every weekend. We will be releasing balloons with hand written notes to her attached. Perhaps the winds of God will carry our messages to her. We want her to know how much we still love her and miss her.

Saturday, October 22, 2011

Money for Nothing

Here's a picture of Grace with her first purse, given to her by Sarah.

Several months after Grace passed away, we received a bill from the fire department for emergency services. Imagine how shocked we were, it was like saying “here’s your bill for you daughter that we couldn’t save.” I know someone has to pay for it, but the thought that it would be us was just devastating. I sent the bill to Kaiser and they, in turn, then directly billed us for it as well. Luckily, I called and got a hold of a nice lady named Lori in the claims department who was able to get the charges written off for us. We felt a little better knowing that someone listened to our concerns and appeared to generally care about making things right.
A few months ago we finally paid off all of the Kaiser bills that were related to Grace’s care and that was a relief. Finally, no more reminders would be coming in the mail. Then, a week before her angel date, we received another Kaiser bill. This bill was sent under my name (because Grace had passed they couldn’t bill under her name) and it was $250 for an office visit we had with her geneticist long after she had passed away.
In March, we met with her geneticist to go over all of the tests that had been performed with what blood samples we had from her before she passed. He handed us a list of tests and then basically told us that no cause was identified so we had to assume a one in four chance of having another child with EMEE. We learned nothing new. Imagine my shock getting the bill for $250 for basically…nothing. All it did was remind me that we still have no answers and no reasons for this reoccurring nightmare. The fact that it came right before her angel date was even more gut wrenching.
I was going to just pay the bill, as it seemed easier that way. Brien told me no, that I needed to get on the phone and dispute it, find out why they were charging us so much for a simple follow-up office visit where no new results were learned. We had to continue to advocate for her, and for us, long after her death.
So, this week I did so, and once again, tried to go through the story with the Kaiser representative without anger in my voice and trying not to completely break down. The person on the phone told me they would escalate the claim and we would receive an answer in two weeks, just like last time. I hung up the phone hopeful that maybe they would reverse the charges. Within a few hours I received a phone call from that nice lady Lori, who I spoke with months ago about the ambulance bill. Again, I had to explain the whole story, and luckily, she indeed remembered me from before. She genuinely apologized to me and told me she was going to expedite the claim to help out as much as she could. I can only hope that was her own angel deed for the day. I don’t know Lori but I am sure thankful that she handled the situation with compassion and grace.

Saturday, October 15, 2011

Light a Candle Tonight

Today, Holly and I placed pink and blue ribbons on all the grave sites in the Garden of Angels. We wanted to show our support and to let others know that October 15th is Pregnancy and Infant Loss Awareness Day. It's something we recently learned about and felt compelled to help spread the word.

Pregnancy and Infant Loss Awareness Day is part of a month long Proclamation signed by Ronald Reagan in 1988. It's goal is to Support, Education and create Awareness for grieving parents worldwide. Too many families grieve in silence, sometimes never coming to terms with their loss. Our goal is to help others relate to our loss, know what to say, do or not say, not do and to help families live with their loss, not "get over" their loss.

So tonight at 7:00 pm, we invite you to light a candle for one hour in memory of Grace and all the other babies who left us far too soon in life. Thank you.

Thursday, October 13, 2011

The Hardest 10-Days of our Lives

It was a year ago today when I found Grace unresponsive and I had to administer CPR for the first time to save her life. Over the next 10-days I would resuscitate her several more times to prolong her life.

I will never forget that terrifying day Our first call to 911 when I found her not breathing. It has forever changed me and is the root of so much anxiety when I think about the last 2-weeks of her life. Not to mention those early mornings when I was awoken by Holly screaming "she's not breathing, she's not breathing!" I would fly out of bed like it was on fire and run into the nursery to start resuscitating her. Such horrible and painful memories. Events that no parent should ever have to face.

I know the next 10-days are going to be very difficult for us. There are so many memories both good and bad. One of the best memories we have took place two days before she passed away.

Our last bath together
Holly's sorority sister and dear friend Stephanie had come into town to meet Grace for the first time. Holly was so excited to see her that night and introduce Grace to Stephanie. Before Stephanie arrived Holly and I bathed Grace. We loved doing bath time together. Grace was so happy during her bath, it was one of the few times when there were no seizures and you could see the happiness and peace on her face. I think the warm water and gentle touches from us made her so comfortable.

When Stephanie arrived Grace was just glowing. You could see it in her eyes and the smile on her face. Perhaps it was Stephanie's trademark big earrings or neckless that garnered Grace's interest, either way she was clearly enjoying being held by a new friend. Holly told me last week she thought that was the last happy time for Grace.

Sadly, what started out as a happy evening ended with a living room full of paramedics attending to Grace. A few minutes after we all sat down to dinner Holly saw that Grace had stopped breathing again. I was having a hard time resuscitating her so Holly called 911. Grace never fully recovered after that night. For the next two days it was about care and comfort for her. There was very little we could do for her at that point. This was the beginning of the end and the worst time of our lives. To this day it is a vivid nightmare I can't shake.

Holly and I never left Grace's side for the next two days. Our friends and neighbors fed us and took care of us during this time so we could be by Grace's bedside. We slept on the floor in her room and talked to her endlessly. We must have told her how sorry we were and how much we loved her a million times. I fondly remember kissing her head and feeling her soft silky hair on my nose and smelling her innocence.

Last week Holly wrote a blog entry about Grace's Angle Day. And quite honestly, that's the only thing keeping me together right now. If it wasn't for that different approach to dealing with her death I don't think I could do it. The anxiety would be eating me up. But somehow thinking of the day she died as the birth of an angel is making it tolerable. I know the next 10-days are going to be tough for Holly and I. But we have each other and we'll make it through this difficult time together.

Sunday, October 9, 2011

Angel Month

Shortly after Grace passed away, a friend put me in touch with another local mother who had lost an infant daughter. One of the things she told me was that each year, on the day that their baby passed, they light a candle in honor of her and call that day her “angel day.” That term has stuck in my mind, and I think it’s very sweet. Rather than calling it a “death anniversary” or “anniversary of passing”, the term “angel day,” is much more uplifting. All babies are precious little angels sent to us from heaven. I don’t know why some have to return to heaven early, it just doesn’t seem right.

Brien and I have been discussing what to do when Grace’s angel day arrives on Oct. 23rd. We had planned to start her butterfly garden, however it now seems that spring would be a more practical time for that. We also thought about having a gathering of friends, however we are very hesitant to plan that, as we just don’t know exactly how we will feel on that day. What we know for sure is that Brien and I will definitely spend the day together, visit Grace, and include a special gift for her. She will forever be our angel.

Today I was shopping at Kohl’s and wandered into their Christmas section to look for angels. We wanted to find a special one for her day. As I was looking around at all the ornaments and figurines, I found these blocks with angels on them that spelled the word Grace. Next to the blocks was also a beautiful snow globe with an angel and her name on it as well. Of course, I had to buy them even though Christmas is still some time away. The discovery of the angels got me thinking….maybe I should think about angels all year round and how they are always among us. Grace gave me an idea.

I’ve decided that October will be Grace’s angel month. I think she deserves more than one day of commemoration. The enormous life lessons she has taught me I will hope to carry with me always. For the remainder of the month, and the days leading up to her angel day, I will try and complete one angel deed per day. It may be something simple like taking out the trash (which is usually Brien’s job) or calling up an old friend, or it may be something requiring more thought and preparation. Today, I thought of a friend and bought her a small gift. Who knows what tomorrow’s angel deed will be? I hope that others will join me in some small angel deeds during October, and think fondly of our angel lessons.