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.
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
The unbirthday
November 20, 2013 at 10:22 pm | Posted in Grief, Sawyer | 7 CommentsTags: baby loss, birthday, child loss, dark days, death of a baby, new not so normal, perspective, siblings
There are many ways to celebrate a deceased loved one’s birthday. This year on Sawyer’s birthday I ran in a race in the morning. One of my close friends suggested the idea. I did not realize at the time that it was a 4 mile race benefiting Children’s Healthcare of Atlanta. So, it was a 4 mile race on Sawyer’s 4th birthday benefiting the hospital where he died. Seems appropriate, doesn’t it?
After the race we went to lunch with the twins. We had pie. Not birthday cake. The little girl at the table next to us asked me if we were having dessert because it was someone’s birthday. I said, “Yes, but the birthday boy is not here.”
Next we went to the cemetery where Sawyer’s sister decorated and sang happy birthday. It started to rain. I was thankful that the raindrops hid my tears.
Evan was a bit cranky which is more than understandable when you should be celebrating with your 4-year-old son but instead you are going to the cemetery.
Evan holding Sawyer
My broken heart was glad when the day was finally done (even though I know my arms will ache to hold Sawyer just as much tomorrow).
Tomorrow
November 16, 2013 at 10:40 pm | Posted in Grief, Sawyer | 8 CommentsTags: #WorldPrematurityDay, baby loss, birthday, child loss, death of a baby, hope, March of Dimes, new not so normal, perspective, premature birth
The March of Dimes along with other parent groups and organizations in countries around the world dedicate tomorrow to raise awareness about premature birth and how it can be prevented. It is World Prematurity day. Hopefully, awareness and support will lead to more healthy babies. No family should have to live in a world without their child/children.
Tomorrow is also the would be/should be/never will be 4th birthday of our sweet Sawyer. While he was not premature, there are still no words to describe how much my arms ache to hold this little boy. . .
All Hallows Eve
November 1, 2013 at 10:51 pm | Posted in Jake, Sawyer | 9 CommentsTags: child loss, Day of the Dead, death of a baby, Halloween, holidays, new not so normal, perspective, thoughts
October 31st is not only Halloween but it also starts the celebration of the Mexican holiday Dia de los Muertos (Day of the Dead). The tradition focuses on celebrating and remembering friends and family who have passed away. Unlike Halloween, the celebration honors those who have died with food, festivities and an elaborate altar. The observance is on November 1st and 2nd, which coincides with the Catholic All Saints’ Day and All Souls’ Day. November 1st is for celebrating children and infants who have died. It is called Dia de los Inocentes (Day of the Innocents) or Dia de los Angelitos (Day of the Little Angels). November 2nd is for remembering all friends and family no matter what their age. In some beliefs, it is a three-day holiday beginning on October 31st, All Hallows Eve, when some believe the souls of young children arise at midnight.
I have never made an altar but I am very thankful to one of my close friends who includes Jake and Sawyer’s pictures on her altar. Maybe one day I will try to make an altar. There is a part of me that wants to make Halloween (along with all days) extra fun and extra special for the twins because I cannot ever do these things for Jake and Sawyer. No worries, I do know that the twins deserve fun and extra special just because of themselves.
There is a house in our neighborhood that has crazy blow ups for every holiday. I try to drive the twins by the house often during Halloween. Here it is during the day:
Here is the house at night:
And here we are (minus Evan):
Happy Halloween!
Shifting
October 22, 2013 at 8:46 am | Posted in Grief | 4 CommentsTags: baby loss, child loss, Jake, life after loss, new not so normal, perspective, Sawyer, thoughts
Awhile back I mentioned that Jake and Sawyer’s nameplates, which are part of the headstones, have shifted. The bolts had become loose and then inexplicably disappeared but they were repaired. However, the cemetery grounds people explained that because these are not the original bolts they might not hold. I have been watching them shift again over the last few weeks. I really still cannot understand how it is possible so I brought Evan to confirm.
He took one look and verified that yes, the nameplates (mostly Jake’s) have shifted again. He did offer up the explanation that perhaps Jake and Sawyer are just like any other children giving their parents something to worry about. I sort of like this idea. It goes along with the theory that my very sweet cousin pointed out Jake and Sawyer are just being boys playing together and being mischievous. They could just be playing Halloween tricks.
We are going to call the cemetery to have the process started to replace the nameplates. This is still odd and not okay but we can get it fixed. I have to keep it in perspective. Jake and Sawyer are not in danger. Nothing can harm them anymore. This we can do something about.
Of course, all of this reminds me there are so many hard and heartbreaking events in life that we cannot control. Illness, accidents, disasters, bad things happening to good people. These things all happen, and seem to happen far too often. They will continue to happen too (though I feel like we have had more than our fair share lately). But a break would be nice. And fixing things that we can control helps, at least a little.
Fun Friday
October 18, 2013 at 12:08 am | Posted in life after loss, Love | 8 CommentsTags: hope, hugs, life after loss, new not so normal, perspective, thoughts, What does the fox say?
I have always wondered what it would be like to write something light-hearted. The twins have Fun Friday at school so I was thinking I should give it a try too. Here are two things that made me smile this week.
1. The Facebook page Amazing Things in the World posted this picture a few days ago:
Did you know that koalas sleep cuddled with their young to protect them at all times? I think it sounds like a perfect idea which would resolve many of my paranoid parenting tendencies. The twins would so not think it was perfect and they would most likely make a similar expression as the one on the baby koala’s face. Snuggling in a stationary position would not work for them because they prefer to toss and turn while asleep. Perhaps in my next life I can be a koala.
2. Have you seen the video “What does the Fox Say?” It is super funny. The brothers Vegard and Bård Ylvisåker, members of a Norwegian comedy group produced the song and music video “The Fox.” They created it to promote the upcoming season of their television talk show, Tonight with Ylvis. Disclaimer: If you watch this video, the song could get stuck in your head for days.
Just wanted to share the smiles with you all. Hope that you have a good 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.
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