I’m Scared (repost from my amazing cousin’s blog)
February 4, 2014 at 6:42 pm | Posted in Grief, life lessons, Love, normal? | 5 CommentsTags: amazing, family, fsh muscular dystrophy, hope, life after loss, new not so normal, perspective
I would like to introduce you all to my amazing younger cousin. She is my hero.
This is my life. It’s all that I know. Friends have said they think I’m so brave for just living my life, when I’m just living my life the best I can… just as they are.
The truth is I’m scared.
When I initially decided to start a blog, I intended to make it humorous by discussing the more amusing aspects of my life than the dark ones, but sometimes all I see is darkness. I can’t take a single step without being scared that I will tumble and smash my teeth into the floor. I sometimes feel like I’m spiraling downhill with no end in sight.
I have FSH Muscular Dystrophy, and I’m just scared.
“Courage is being scared to death, but saddling up anyway.”
– John Wayne
Going, going, gone. . .
February 2, 2014 at 11:18 pm | Posted in life after loss, Love | 5 CommentsTags: Atlanta + Snow = Disaster, Atlanta snow, hope, new not so normal
The weather in Atlanta has gotten warmer (in fact, today it was 70 degrees!!). We checked on our little snow family daily.
Going
Going
Gone
Do you want to build a snowman? Come to Atlanta.
January 30, 2014 at 5:30 pm | Posted in life lessons, Love | 8 CommentsTags: Atlanta + Snow = Disaster, Atlanta snow, baby loss, child loss, death of a baby, family, gratitude, new not so normal, perspective, Snowjam 2014
You might have heard about or are living through Atlanta’s snowstorm. Tuesday Evan and I both left work around 1 pm. After 30 minutes I had not left the parking lot. My stress level did not subside at all when finally I did leave the parking lot, because cars were not moving. . . not even a little bit. I quickly realized that I was not going to make it to pick up the twins from school at 2:30. I called Evan. My call did not go through. Bummer. Luckily, Evan called me and said he was in traffic but moving. He would drive towards school too. He was able to make it near the school within 2 hours. He parked and walked the rest of the way to get the twins.
By 4 pm Evan and the twins were all safely home. I for the most part stopped stressing about my never-ending commute. I had almost a full tank of gas, no kids or dogs in the car with me and I was moving (sometimes). My college days had prepared me for the no bathroom situation. I finally made it home after 6 hours. A friend who could not make it to her house arrived about an hour after I got home.
We were super lucky compared to lots of others. And, our friend made it home on Wednesday with no problem!
One of the twins has been a bit sick so he was not going outside. His sister, on the other hand, wanted to play in the snow! Meanwhile, he wanted to take pictures. He took a few pictures before realizing he should move his fingers. . .:
First, she wanted to build a snowman. After all, we have listened to the Frozen sound track 47,000 times in the last month.
Next, she wanted to build another snowman.
And, then she wanted to build a whole snow family.
In case you do not recognize us let me help you:
- Evan is the tall one in the blue hat with sunglasses
- I am wearing a cool pink hat our niece gave us
- the twins are the middle-sized snow people (she is wearing a hand me down hat from our niece and he is wearing a cool Star Wars hat from our nephew)
- Buddy and Baby (our dogs) are each wearing black and white polka dots
- Sawyer is wearing the brown hat (it is another Star Wars hat from our nephew)
- Jake is in between Baby and Sawyer
School just got cancelled for Friday too. It is supposed to be in the 60’s by the weekend. So, if you are looking for us we will be the one’s at home watching our snow family melt.
Bring soup, be there & other ways to help a bereaved friend
January 26, 2014 at 9:46 pm | Posted in Grief, life after loss | 6 CommentsTags: child loss, new not so normal, thoughts, tragedy
In a few different posts I have written about what people have said to Evan and I after Jake and then Sawyer‘s deaths. There seem to be endless opportunities in life to say the wrong thing. It is hard to put yourself in another person’s shoes and separate out your own feelings. We all have different experiences. We start from a variety of places. Who is to judge what is right and what is wrong? All we can do is try our best.
My mom recently sent me an article called The Art of Presence by David Brooks. It is about a family who has suffered enormous tragedy in their lives (including the death of one of their daughters). The family gives very practical advice such as:
- Be a builder. I had not read/heard this analogy before and I like it so, I am going to share:
“Firefighters drop everything and arrive at the moment of crisis. Builders are there for years and years, walking alongside as the victims live out in the world. Very few people are capable of performing both roles.”
A few other pieces of advice I have heard about but are also worth sharing (I may have also written about these before . . .):
- Do be there.
Even if you do not know what to say it does not matter. Just show up.
- Do not compare, ever.
There is no comparison contest with bereaved parents. Everyone has lost.
- Bring soup.
Love and compassion are necessities, not luxuries. Without them humanity cannot survive.
The Dali Lama
- Do not say you will get over it.
Grief changes over time but in my experience there is no “healing” from the loss of your child.
- Do not say it is all for the best or try to make sense out of it.
The death of a child is not for the best and there is no making sense of it for any parent.
Fun Friday – Sharing Smiles
January 24, 2014 at 5:22 pm | Posted in Grief, life after loss, Love, twins | 5 CommentsTags: baby loss, child loss, dark days, dogs, happy, hope, new not so normal, thoughts
I am struggling to find a happy place today. So, I thought I would try to cheer myself up by sharing some things that did bring a smile to my face this week:
- Seeds of Happiness – They are simple, small clay smiley faces. The twins have yet to give them to anyone but they do have a big time playing with them:
“Mark Borella, a sculptor, created small smiley faces from left-over lumps of clay. He gave these to his friends whose young son was dying of cancer. He told them: “I know there is nothing I can say or do to make you feel better so I thought I would bring you some smiles to help you get your smile back. ”
He called them Seeds of Happiness. And his hope is that sharing the smiles continues to grow as their customers plant Seeds around the world.
- Keeping our dogs warm in the Star Wars coats we found this week:
It is possible that Buddy and Baby are not smiling about their new coats . . .
- I recently found out that there is a Happy Movie and a Happy Movement.
The movie is all about happiness and what makes people happy. The movement “is a 28 day program that brings happiness to the center of our lives.” I need to end this post so that I can go sign up.
Happy Friday and I hope that you all have a good weekend!
A resolution (not the New Years kind)
January 2, 2014 at 9:14 pm | Posted in Cemetery, Grief | 3 CommentsTags: baby loss, cemetery, child loss, death of a baby, gratitude, Jake, new not so normal, perspective, Sawyer, thoughts
I found out that my friend at the cemetery might have made the call to get Jake and Sawyer’s markers fixed. I saw him the other day and asked him if he had anything to do with the new markers. He would not say one way or the other, but I said thank you and I gave him a big hug just in case.
He explained to me that the granite that the markers rest on and the markers themselves are made at the same time. When Sawyer died we buried him next to Jake, but in the same full-sized plot. There were no issues with the headstone following Sawyer’s funeral because we did not have Sawyer’s marker added until 2 years later. When we did add Sawyer’s marker the granite had to be replaced to allow for the 2 markers instead of just Jake’s.
The bolts that held the markers to the granite were not an exact fit which apparently is why the markers moved and shifted. The bolts have all been replaced now. However, there is a chance that the markers will shift again because the granite and the markers were still made at different times. If the markers move again, the next fix would be to replace the entire granite and both of the markers (then the granite and both markers will be made at the same time – and should fit together without being able to shift).
Even with all of these logical solutions, I still like the idea that Jake and Sawyer are playing practical jokes on us.
Wishing you all a Happy 2014!
Four Years
December 26, 2013 at 10:48 pm | Posted in Grief, Sawyer | 11 CommentsTags: anniversaries, baby loss, child loss, dark days, death of a baby, new not so normal, perspective, Sad, Sawyer
Four years ago today is the date on Sawyer’s death certificate. Evan and I last held him on December 25th. My mind knows that time has passed. Sawyer is dead today and he will be gone tomorrow too. However, my broken heart wishes I could go back to when I took this picture and change the ending of Sawyer’s story. I have no words tonight for how much I miss that little guy.
The last picture taken of Sawyer – 12/25/09
Wherever you are. . .
December 24, 2013 at 9:34 pm | Posted in Grief, Sawyer | 10 CommentsTags: baby loss, child loss, death of a baby, life after loss, new not so normal, Sawyer
Dear Sawyer,
The book, Wherever You Are: My Love Will Find You by Nancy Tillman says it best:
“I wanted you more than you ever will know,
so I sent love to follow wherever you go.”
I hope that wherever you are, my love has found you and that you know how much you are loved. I miss you so very much.
Fun Friday with Food
December 20, 2013 at 5:44 pm | Posted in Grief, twins | 4 CommentsTags: baby loss, child loss, dark days, death of a baby, happy, holidays, marshmallow dreidels, new not so normal, recipes, teacher gifts, teensy gingerbread houses, twins
Grieving during the holidays is complicated, so I am continuing my search for the happy. The other week we made some Hanukkah treats (they were practice for making them with each of the twins’ 1st grade classes). First, we made marshmallow dreidels.
Ingredients
- marshmallows
- pretzel sticks
- Hershey kisses
- frosting
- Unwrap the Hershey kiss.
- Spread frosting on the bottom of the marshmallow.
- Place the kiss in the frosting.
- Push a pretzel stick on the top of the marshmallow (for the dreidel top).
- Cover the whole thing with chocolate magic shell and wait for it to dry.
We did not have the patience for the drying so we skipped #5.
Yesterday we tried to make tiny gingerbread houses for the twin’s teachers. We found a recipe in Family Fun Magazine:
Ingredients
Houses
- Graham crackers
- Sprinkles and sweet decorations, such as, shaped sprinkles or gumdrops – we used Unreal Candy
(we bought pre-made icing but if you want to make icing below is a recipe)
Vanilla Decorating Icing
- 3 cups confectioners’ sugar
- 2 tablespoons milk
- 2 tablespoons light corn syrup
- 3/4 teaspoon vanilla extract
Make a Teensy Gingerbread House
1. With a serrated knife, cut the graham cracker pieces as shown. Tip: To create the pairs, cut one piece, then use it as a guide for the second.
2. To assemble, use Vanilla Decorating Icing (or the store bought icing).
3. Let the icing set, then use more to attach sprinkles and other sweet decorations, and let it set.
4. To place the house on a stick , trim a piece of brownie to fit inside the house. Slide the brownie onto a lollipop stick (we used a candy cane), then carefully slide the house on top.
They turned out pretty well:
My helpers were much more interested in the eating than the making. . .and everyone was happy.
Looking for the Happy
December 18, 2013 at 9:22 pm | Posted in Grief, life lessons | 5 CommentsTags: child loss, dark days, happy, holidays, new not so normal, Sad, Sawyer, twins
The dark days of December are always accompanied by holiday parties and cheer. The people of planet earth should be celebrating and happy because as it has already been established, not everyone lives on planet my baby died.
There are more of us than there should be on planet my baby died. My heart will forever hurt for those lost and left behind in Newtown. I also know that grief is not reserved for those of us who have outlived a child. There are so many tragedies that some days, it is so difficult if not impossible to find any happy.
A very wise friend once suggested to me that I just try to find one thing I like to do every day and do it. It does not matter how small the thing is – it could even be taking a shower. So, yesterday this is what I found to make me happy . . .
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