International Kindness Project Day or Day of love

RAOK , or Random Acts of Kindness is something that everyone is probably familiar with. This world could use more acts of kindness, more compassion towards others, less hate, more inclusiveness.

When Dr. Jo from the MISS Foundation decided to make July 27th International Kindness Project Day, well it was inspired. Not only is this an incredibly special day to Dr. Jo, but she found a way to unite all of the Random Acts of Kindness into one special day. In fact, she did such an amazing job, that the sun seemed to shine a bit brighter today.

My family decided to attend this special event and sat down as a family to decide what we would do. We wanted to make a difference in Nora's name and we wanted to give help where help was needed most. After many ideas were tossed around, the two local homeless shelters seemed to stick the most.

Research followed to find their needs and we spent the next month preparing for this special day. We decided to help both local shelters, one on July 26, the other on the 27th.

On the morning of the 26th, Corey and I pulled into the shelter with our goodies in tow. Corey went into the shelter to ask for drop off locations and handed them the card. He came back out to the car and said they wanted to speak to me. As I helped Corey carry the items in, I was not prepared for what would happen next. The two wonderful and amazing volunteers had questions about the MISS Foundation, about the child that the donation was in memory of, about us and what inspired this. As I answered the questions, a common bond emerged. One of the volunteers was a grandmother of an angel. Tears flowed from both of our eyes and we hugged. The ladies hugged my son and thanked us profusely. At that moment, I understood.

I understood that through each act of kindness we do in our child's name, our child lives in that moment. I felt Nora , I felt her presence , her love and I knew that in my own way, this is how I can be the best parent to her.

Last evening I received an email from the daughter of the volunteer. She was so touched by our random act of kindness, she decided she would do her own random acts. This amazing mom and her children had a wonderful time spreading love and kindness in her son's memory. I now feel blessed to know this amazing person and share her story.

Today, Abby and Corey went with me to drop off our donations to the other shelter. We stopped to pick up a few things and then went to the coffee house. Today is also the angelversary of a special friend's son. I decided to purchase a gift card to give to a random person in his name. After we were done, we dropped off our donations and again was surprised with a special gift.

Corey took the kindness card and ran in, again asking for where to drop off. When he came out, he looked at me and said that the person knew me. I have never been there so I had no idea what he was talking about. When I walked in, I was reunited with a dear friend whom I had not seen in quite awhile. As we hugged, again I am reminded that my daughter is everywhere.

I can't help but believe that Nora was smiling and proud of her family today. It was such an amazing , wonderful feeling to share our daughter/sister with random strangers through acts of kindness. I promised her ten years ago that I would not forget, that her life would not be in vain. I understand now. I understand so much better.

This has been a day that I will not soon forget. It has been the most beautiful day filled with the most beautiful love all inspired by the love we share for our children. What a wonderful legacy.

Blurred June

12:22 am - I sat up in bed, startled by a noise outside. I grabbed my cellphone to see what time it was and under the time, in what felt like a neon sign, I saw the word, June. In years past, this meant summer vacations, hot days, children running and playing, and so much fun. This morning the word sent me into tears. I just grabbed my pillow and hugged it. I realized that it is June 1, two days until Nora's tenth birthday.

June is forever tainted for me. June will never be the same. After two fall babies, I was finally going to have a summer baby. I was so excited. Nora died June 3. I was in a coma from the moment I pushed her out until June 11, in recovery another week. On June 18, I was able to meet my daughter for the first time in the funeral home. On June 19, we buried Nora. On June 21, her original due date, we were picking out her headstone.

June is a month that is so blurred, so confusing. June's memories and emotions...all blurred.

I miss Nora.

Right where I am 10 years later.....

The other day, while out with my family, I felt the need for a donut. Simple request. Just craved a donut, specifically a blueberry glazed. After four different stores, and a realization that they no longer carry this brand in the area, I sat in my car and screamed ,then cried. My family thought I had gone nuts which made me cry even harder. At first, I had no idea why I was crying and then it hit me. When I was pregnant with Nora, I craved, and I mean craved these delicious bites of heaven.

As I am typing this blog post, I am crying. Ten years later. A donut started the tears that won't stop. Nora's ten year birthday is next week, June 3. I am a mess. I imagine I will be a mess through the month of June at which point things will calm until the next wave of grief rushes through me.

I have come to realize this. There is no magic pill, nothing that can be done to change this. I have come a long way since 2001. Heck, I have come a long way since last year. Grief changes year to year, month to month, second to second and all it takes is one memory, one smell, one sound, or one donut to rush it back into your life.

Things were different in the beginning. I had a sucky extended family, most refused to come to the funeral. Ten years later, these people are no longer in my life. I have a better relationship with the farmer down the road than with my own father. I have been missing him so much lately but there is nothing I can do to change that. I miss my old friends but again they backed out of my life. My grief was too powerful for the normals out there.

It has been a journey with a steep learning curve. In the beginning , I wore lots of "masks." They were hot and uncomfortable. I hated to pretend, it wasn't me. I gradually started ripping them off , refusing to wear them in public. I was a person who lost a child , I was a person who lost the ability to have more, I was a person with surviving children , a husband. I was not able to handle pregnant women, newborns, commercials with newborns, shows with newborns, the list goes on. I didn't care what people thought of me. I just wanted to be real.

Than I went back to work. The mask had to come out because society couldn't handle the real me. So, off I went. One job, two jobs, three jobs- yea I had a hard time keeping the masks on. I kept encountering people who were clueless. I felt the need to educate. I needed to make sure that I did self care, take time to cry or scream. I needed to talk about my baby, my Nora, my experience. Sure I could do it online, in the safety of forums and blogs but that wasn't good enough. I wanted the world to get it. Just freaking get it. It didn't work very well.

At the five year mark, I eventually learned how to coexist in the world and share Nora. I started to pick and choose who I share Nora with. People, new friends, co-workers had to meet a special criteria. It was a protective tool I used to guard myself, my feelings from the coldness of the world. It worked. It took so much hard work, meditation, artwork, yoga, breathing.. any tool I could use to help me through this lifelong journey of grief.

Ten years. I am different. My children are different. My husband is different. Nora is a part of our lives. We don't try so hard anymore. Nora is just my third child, she lives in our hearts. We have finely developed rituals. She is remembered on each holiday, whether it be just lighting a candle, the angel tree, or her birthday party. Her name moves freely on our lips. We laugh when we remember certain pregnancy memories. We plant gardens in her name. We do acts of kindness in her name. We cry if we need to, sometimes we even throw rocks into rivers to release anger. We are in control and we know what works for us. We remember Nora however and whenever we want , in any situation.

Ten years ago I was told that my children would be messed up because I allowed them to know their full term baby sister who was born still. This year my son, 17 , spearheaded a walk for the MISS Foundation. My son and my daughter who is now 13 have helped children and parents understand loss. My son's mission in life is to help others understand how to help the bereaved. I could not be prouder. This is Nora's legacy.

As I sit here rereading this, I realize that I am all over the place. To the reader, I apologize. This blog post is very indicative of how my grief has been. There is no set timetable, no rules, no promises of things to come. It just is and I just am. June 3 will be here and I know tears will come. We have a birthday party, share steamed crabs, eat cake and let balloons go. My incredible sister in law, my mom, my cherished pre-Nora friends, my beautiful new friends, other amazing and wonderful bereaved mommies and daddies will remember, and for that I am blessed. I will go through her stuff, her few cherished mementos and hold them. I will mourn Nora..but ten years later, I know I am a better and changed person because of her. I will never forget because I will always love her.

Only time will tell what the future will bring. I am sure as I see my oldest off at graduation, watch my daughter in her prom gown, and all the other things I won't share with Nora, more tears will come. Its only natural , its part of the grieving process.

“To spare oneself from grief at all cost can be achieved only at the price of total detachment, which excludes the ability to experience happiness.”
~Erich Fromm~

Crohn's drug cocktails all around...

Today's altered book page focuses on the ridiculous amount of drug cocktails and their awesome side effects. I have been on no less than 23 different prescriptions this year alone. 23. That number alone makes me even sicker. I have sat through numerous doctor visits and drug consultations because of the side effects. I have been hospitalized twice because of a drug that gave me pancreatitis. The latest drug has given me diabetes, could give me kidney and liver failure, has made my face swell to a pillsbury dough boy shape, has given me a mysterious red dots, and has made my hair go running from my head. Any infection I get could lead to sepsis. Really I can't help but think WTF?

Stuck in hell

I have to say...if I were to sum up this year, my 40th year on this earth, it would be in one word, HELL. I have had some bad years.. the year Nora died is at the top but this year... I have been sick since January. I have had more tests, more doctors appointments, more hospital visits, blood tests than ever in my life. I have come to the conclusion that this year sucks. I keep looking for an out but I am not finding one. I have come to accept that I have Crohn's. I accept that I have a disease but what I don't accept is the lack of control of the disease. I am not understanding why the doctors cannot get a handle on this damn disease. And to add insult to injury, the medications they give me are inspiring other diseases to come to fruition. Its like a damn disease party in my body. Why not? Crohn's is all alone, so its decided to invite Diabetes, Mysterious Rash and Pancreatitis. Now they are just having the time of their life while ruining mine.

Something has got to change, right?

To celebrate the party of hell in my body, I decided to dedicate an altered book to Crohn's and its many facets. First pic posted is the disease party, second pic is the first pic digitally altered to represent how my life with crohn's feels.... pretty messed up.

One moment

One moment

a beautiful night in front of the fire

a day of enjoying the sun and gardens

dancing with your son to Strawberry Fields

dancing with your daughter to the music in our head

painting toenails

loving your precious Ellie ... the best lab ever

a quiet table with your hubby, enjoying a cup of coffee

sunday morning with the smell of flowers wafting through the house

Moments in time ....trying to remind myself that there are good moments and to take the time to breathe them in.

Altered book journey for Nora's birthday

I decided to try something different this year and apply the heART techniques I have learned to the grief journey..I find myself struggling every year as we approach Nora's birthday. It starts with Easter which was the baby shower we had for her and ends on June 18, the day I finally got to meet my angel. It was suggested that I do something to mark the passages of this journey so I decided to do an altered book. I never realized that altering books could be so liberating, a way of changing what was once never to be changed.

There was a time in the past that I was afraid of this time of year but now I find myself embracing it, like a dear old friend. I know it will come every year and I hope that from now on I will be able to just greet it and spend time with it. The altered book has allowed me to do just that. I find myself moved to alter pages, to take my feelings and put them on paper, to be as dark or as light as I feel in the moment.