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She's been gone for nine days now

skylersue - 07:08pm May 22, 2012 EST

My daughter Skyler Sue passed away nine days ago. The feeling I can't describe - but the pain is like this tightening in the chest, wherein it's so hard to breathe. My eyes are already dry from all the tears I've been crying the past 9 days. I'll be normal at work or doing chores, then I'll just break down and cry. Going to get groceries is so difficult, anywhere I look is a baby - and going thru the infant section is torture.

Skyler Sue is born with a rare neurological disorder called Lissencephaly. She stayed in the NICU for 51 days, we were told she will live for at least 2 years. But at 94 days she passed away. We were not prepared, it was already painful for us to accept she only have a few years, but she only lived a little over 3 months. I keep reminding myself to be thankful for the 3 months, but I can't avoid but feel anger for having so little time with her. She was our love and joy - how I wish I can just hug and kiss her one last time.

If you have 23 minutes, below is a link to a tribute I made for my little girl - Skyler Sue

www.youtube.com/watch?v=ZCuilmr_bEI

Attachments:

Skyler-tub.jpg

Skyler-Cardinals.jpg

Skyler-Patrick.jpg




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*fingers crossed* - May 22, 2012 8:05 pm (#1 Total: 17)  

mom of 32 weeker ~Kaitlyn Eliana  

Hi and Welcome to SHARE. First, let me say that I'm so sorry for your loss. Moms shoud never have to have empty arms. Please know that you're not alone. I hope that you find support and friendships here that can help you in this hard time. We're all here for you. You're in my thoughts.

Julie

imani'smom - May 22, 2012 9:14 pm (#2 Total: 17)  

 

Welcome to Share. I watched your video of your precious little girl. My heart aches for you and your family. I am so sorry for the loss of your little girl.

It seems like you have a lot of support from your family and I hope you find comfort here as well.

Hugs
Cathy

skylersue - May 22, 2012 9:24 pm (#3 Total: 17)  

 

Thank you Julie and Kathy, your supportive messages means a lot.

It's nice to know there is a place where I could share and connect with other parents going thru trying times.

brookeg - May 22, 2012 10:54 pm (#4 Total: 17)  

 

Hello and welcome to share. I am so sorry for the loss of Skylar Sue. I am also a angel mom who lost my son 2.5 yrs ago... I felt many of the things you describe. I can remember those moments thinking my chest would burst with sadness and feeling like it was suffocating. It would pop up at random moments and that would mean a full blown melt down. It's like a rollercoaster that you want off of. It is so much for us to process. No one ever wants to bury their child. I can say that while I still think of my son every day the pain has eased with time. I can still have " triggers" that bring me back to first few months but I try and do things to honor my son. It helps me in my grieving process, along with this site.
We are all here for each other
Thinking of you
Brooke

mrsmaxson - May 22, 2012 11:46 pm (#5 Total: 17)  

Heartbroken  

I'm so very sorry to hear of Skylar's passing. Nine days is much too soon to feel any kind of normal. I can't believe that you are back at work! I lost my twins almost two and a half years ago and not a day goes by that I don't miss them, but the pain will ease. You will one day be able to take a deep breath again and, believe it or not, go a day without crying.

My best advice is just feel what you feel and don't try to hurry through the grief. Every day is just one breath after another. Please visit us often.

Wishing you hope and healing,
Shannon

skylersue - May 23, 2012 3:41 am (#6 Total: 17)  

 

@ Brooke, you described perfectly how I am feeling. And I am sorry for your loss too. I know we are always told to look at the positive, but it is still hard. I just wish in time I will remember more of the happiness than sadness, but like Shannon just mentioned, I am still in the early stages of grieving -- it's just so hard, and not a lot of people can understand...another thing I can be thankful for is this site. And, thank you for sharing your story too.



@ Shannon, I am so sorry about your twins. Losing one child is already too painful - I can't imagine losing two.

I went back to work exactly 8 days after my little girl passed away. Staying home is driving me crazy. I could use a little distraction, work does the trick. Though it is hard to face everyone at work, I can't help but feel awkward or just plain out of place. But at least work allow me to escape a bit from the pain, it will keep me busy and distracted.

brookeg - May 23, 2012 12:01 pm (#7 Total: 17)  

 

I found work to be difficult and helpful as well. I really had to force myself to leave the security blanket of my home but going back gave me structure and allowed me to think of other things. People were strange but eventually it did go back to "normal". My co workers knew I was really sensitive to seeing babies so they allowed me to have mini melt downs in private when needed. You are still so early in your grief. I remember thinking the pain will never ease..... But it does. It will never go away, there is always an ache in your heart but it gets easier and you can smile thinking of the moments you had with Skyler.
Be patient and give your self time and space to allow yourself to grieve. We all do it differently but there are so many emotions it takes a while to process everything
Brooke

Replies to this message
  • skylersue (May 24, 2012 4:50 pm)


  • KHolley - May 23, 2012 9:50 pm (#8 Total: 17)  

     

    My heart just breaks for you. This is a great place to find support.

    Hugs,
    Katie

    Replies to this message
  • skylersue (May 24, 2012 4:50 pm)


  • skylersue - May 24, 2012 4:50 pm (#9 Total: 17)  

     

    Replying to: brookeg (May 23, 2012 12:01 pm)
    I found work to be difficult and helpful as well. I really had to force myself to leave the security...

    Work is indeed helpful, and like you I do have my breakdowns whenever coworkers talk about babies and it cant be avoided. One of my co-worker have a great niece born about a month ago, and another girl who works in same building will give birth soon to a baby girl. Everyone is just excited and happy, I feel so alone feeling differently and I wish I dont feel this way. I just do my best to stay unnoticed, I don't want them to feel bad talking about babies around me. I just wish I can fast-forward time, so the pain is not as hard. I also cant help but feel angry sometimes - I'm just envious of most mothers. I tend to question - why does it have to be my baby girl, why cant she be alive and healthy like those other babies. In the end I just pray the Serenity prayer, its also a good way for me to overcome my negative emotion with a feeling of thankfulness.

    skylersue - May 24, 2012 4:50 pm (#10 Total: 17)  

     

    Replying to: KHolley (May 23, 2012 9:50 pm)
    My heart just breaks for you. This is a great place to find support. Hugs, Katie

    thank you and yes this is a great place - another thing to be thankful for.

    christianmyangel - May 24, 2012 8:34 pm (#11 Total: 17)  

    Precious in the sight of the Lord is the death of his Saints  

    Hi, i am so sorry to hear about the loss of your beloved baby girl, it is something no one would want to go thru, but unfortunately too many of us know the great pain of losing a child. i lost my first and only baby boy in January, he only lived 45 days in the NICU and i too wanted to be thankful for those 45 days, but i couldn't help to wonder why he had to leave so soon, i wanted to go be with him and felt like life just had no meaning anymore, he was my life and words could not even begin to explain how i felt, i miss him everyday, but i know he is in heaven free of any pain and sickness, i know you miss her but just try to picture her smiling down on you always, she is your angel and only because she is not physically with you doesn't mean she is not there in spirit. it still hurts, but God gives us the trenght to go on, time will help you heal, but for now just cry whenever you feel like it, talk about her all you want because all that helps us in the grieving process. hope this site can help you in your journey just as it has helped me, to know it will take time, but you will recover and one day you will be able to smile when you think about your precious angel.

    Many hugs to you,

    Claudia

    Replies to this message
  • skylersue (May 25, 2012 1:47 pm)


  • skylersue - May 25, 2012 1:47 pm (#12 Total: 17)  

     

    Replying to: christianmyangel (May 24, 2012 8:34 pm)
    Hi, i am so sorry to hear about the loss of your beloved baby girl, it is something no one...

    First, I am very sorry about your son - my heart aches for parents who loss their child and weren't even able to bring them home. I admire your positive thinking of being thankful for the 45 days. I am having a hard time thinking positively right now, I do my best to do so, I always remind myself to be thankful for the 94 days...the happy memories, the experience ... but then, I always revert back in the question - why her?..why not another month or year?... or why does she have to have that disorder and limit her life? Eventually the sadness, anger, grief takes over. But you're right she is in a better place, I just cant help but feel angry/deprived, I love her so much and would give anything to cradle her in my arms again. New moms should be enjoying the new life, not grieving a loss life. I wish time can go faster, and hopefully soon I can have more positive/happy feelings than sadness and grief.

    NathansMom13 - May 27, 2012 11:57 pm (#13 Total: 17)  

    Come to ShareUnion 2012: It's the BEST weekend ever!!!  

    Hi and welcome to Share. I am so very sorry for the loss of your precious Skyler Sue. I hope you are able to provide some comfort and support from those of us here on Share.
    Laura

    shameka hodges - May 28, 2012 12:08 am (#14 Total: 17)  

     

    iam so sorry for you lost my daughter been going for one week and two days and it is killing me deeply in side so i know you pain i had a incompatance cervix she was born to soon her lungs hadn't develop and i am so hurt why me why iam sorry for your lost

    Replies to this message
  • skylersue (Jun 11, 2012 4:45 pm)


  • Oangelaola - May 28, 2012 2:38 pm (#15 Total: 17)  

    Ariyanu's Mom  

    Hi and welcome to share. There is plenty of support here and after watching your video I am glad you have the support of family as well. Going through the loss of a child is very difficult. Keeping you and yours in my prayers.

    Blessings
    Busayo

    Replies to this message
  • skylersue (Jun 11, 2012 4:43 pm)


  • skylersue - Jun 11, 2012 4:43 pm (#16 Total: 17)  

     

    Replying to: Oangelaola (May 28, 2012 2:38 pm)
    Hi and welcome to share. There is plenty of support here and after watching your video I am glad you...

    Thank you for watching my daughter's video and for the support and prayers. We are indeed lucky to have support of family and friends.

    skylersue - Jun 11, 2012 4:45 pm (#17 Total: 17)  

     

    Replying to: shameka hodges (May 28, 2012 12:08 am)
    iam so sorry for you lost my daughter been going for one week and two days and it is killing...

    Hi Shameka, I am sorry for your loss too. I hope you can find comfort knowing you were chosen to be the Mother of one of God's angels- knowing that gives me so much strength to get by during this difficult time. My thoughts and prayers are with you.



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