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
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.
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 . . .
Sweet Sawyer (& Spam)
November 14, 2013 at 9:18 am | Posted in Grief, life lessons, Love, Sawyer | 6 CommentsTags: baby loss, child loss, dark days, death of a baby, hope, life after loss, new not so normal, thoughts
Last week Evan sent me a very wise email with the subject line “Charlie Brown knows. . .”
If only we could . . .
Miss you so very much Mr. Sawyer. Love you always.
P.S. So sorry if you recently received spam from me again. I have changed my password and hopefully I should be spam free now.
Wave of Light for October 15th
October 15, 2013 at 5:12 pm | Posted in life lessons, Love | 5 CommentsTags: baby loss, child loss, death of a baby, miscarriage, Pregnancy and Infant Loss Awareness Day, Wave of Light - October 15th
Every October 15th is Pregnancy and Infant Loss Awareness Day. We remember our children every day but tonight we will light candles.
Tiny Beautiful Things: Advice on Love and Life from Dear Sugar
October 14, 2013 at 10:26 pm | Posted in life lessons, Love | 5 CommentsTags: book review, child loss, grief, hope, life after loss, new not so normal, thoughts, Tiny Beautiful Things: Advice on Love and Life from Dear Sugar
The book, Tiny Beautiful Things: Advice on Love and Life, is a compilation of advice columns by Dear Sugar. It is written by Cheryl Strayed, who was formerly the anonymous online advice columnist, Dear Sugar. The book is a collection of letters written to Dear Sugar and her responses. Dear Sugar writes advice to questions about love, life, death and everything in between.
I previously wrote about one of Dear Sugar’s advice columns to Stuck. Stuck is a bereaved mother. Stuck’s baby died. Sugar offers some very powerful advice on how to get unstuck. In another post, in response to a letter from Living Dead Dad, Sugar wisely writes:
“I don’t know how you go on without your son, sweet pea. I only know that you do. And you have. And you will.”
“Your boy is dead, but he will continue to live within you. Your love and grief will be unending, but it will also shift in shape. There are things about your son’s life and your own that you can’t understand now. There are things you will understand in one year, and in ten years, and twenty.”
There was a time after Jake and then after Sawyer’s death that I could not concentrate long enough to finish a sentence let alone an entire book. Now, I am able to concentrate while I read, although I have to admit most of my “reading” is actually listening to books on CD in the car. I am so glad that I stumbled back upon the book Tiny Beautiful Things and listened to it in its’ entirety.
Weekend Walks
October 4, 2013 at 6:22 pm | Posted in life lessons, Love | 6 CommentsTags: Atlanta 2 Day Walk for Breast Cancer, Atlanta Walk to Remember, breast cancer, child loss, death of a baby, hope, life after loss, Pregnancy and Infant Loss Awareness month, thoughts, ways to honor the memory of your child
Do you know that along with Breast Cancer Awareness month that October is also Pregnancy and Infant Loss Awareness month?
There are so very many facts that I have had to accept are out of my control. At the top of the list are the facts that Jake and Sawyer are dead.
However, I am still here. I am going to do my best to bring awareness to Pregnancy and Infant Loss along with Breast Cancer. So, this weekend I am going to walk in the Atlanta 2 Day Walk for Breast Cancer and the Atlanta Walk to Remember. I will let you know how they go.
Hope that you all have a great weekend!
Control & Clean Clothes
September 26, 2013 at 9:53 am | Posted in life lessons, Love, normal?, venting | 6 CommentsTags: child loss, dark days, Jake, life after loss, new not so normal, perspective, Sawyer, thoughts
I wish life could be a bit more like laundry. You put the dirty clothes in the washing machine, add detergent and wait. After the clothes are clean put them into the dryer. Wait. Fold.
Okay, it is not always so seamless. I have turned a few white loads pink. I will also confess that I have washed more than one diaper. It is pretty messy. However, after shaking out the clothes and repeating the wash and dry cycles everything was once again clean.
Before 2005 there were plenty of situations out of my control but Jake’s diagnosis put them all into perspective for me. I did what I thought were the right steps. I gave birth to Jake at 26 weeks anyway. He lived for 2 weeks but I could not do a thing to prevent his death.
At the time I thought that I could protect any potential future children if they were not premature. I could be in control if I could just keep them out of the NICU. Sawyer’s death let me know loud and clear that I was wrong about that too.
Lately, life seems more out of control than I would like. I just need to realize that is all part of life and hold on.
I think I will go switch the laundry into the dryer.
Atlanta Walk to Remember
September 8, 2013 at 10:48 pm | Posted in Jake, life lessons, Love, Sawyer | 5 CommentsTags: Atlanta Walk to Remember, child loss, death of a baby, miscarriage, new not so normal, ways to honor the memory of your child
“A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his/her parents is called an orphan. But there is no word for a parent who loses a child, that’s how awful the loss is!” Jay Neugeboren
Losing a child is one of the most devastating and lonely events which can happen to a human being. I wish that none of us lived in a world without our child/children. However, the reality is that parents from every religion, class and country have outlived their children.
Every year since Jake (and then Sawyer) died we have walked in the Atlanta Walk to Remember. It is an event to connect parents and families together to express grief and remember our babies, and to raise awareness. It is not a fundraiser.
It is just a time to remember our lost babies together.
This year the walk will be held on October 6th. For more information and/or to register for the walk click the following link:
Jake
August 14, 2013 at 12:14 am | Posted in Grief, Jake, life lessons, Love | 13 CommentsTags: baby loss, birthday, child loss, death of a baby, Jake, life after loss, new not so normal, parenthood, premature birth, thoughts
Dear Jake,
Today you would/should have been 8. You are not. I am still so very thankful that I got to meet you. I just wish we could have kept you for longer. Below are the words that your dad wrote to you 8 years ago. They are just as true today.
We love you Jake.
You are our sunshine.
You are such a courageous and strong fighter, and we are so proud of you.
Jake, you are a miracle, and we thank you for choosing us to be your parents.
You are so wise for someone so young and so small. You knew when you had to come into this world Jake, and you knew when you had to leave us to be in a better place.
You are and were the perfect son for us.
Jake, please know that we felt all the love you gave to us during your time here.
We are sad that we could only spend such a short time with you, but we are so glad and thankful for every minute of it.
It is amazing how we could come to love you so immediately and so completely even though we were just getting to know each other.
Then again, we feel like we have known you all of our lives, and you will be in our hearts forever and beyond.
Jake, we also know that you are at peace and that you are being watched over by all of our loved ones who also watch over all of us from above.
Thank you, Jake.
Thank you for coming to us.
Thank you for choosing us.
Thank you for loving us and letting us love you with all of our hearts.
We’ll see you every night playing up with the moon and the stars.
I miss you every. single. day. Some days are harder than others. I love you.
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