We are the Spinda family (John, Shanna & Stella Mae) from Murray, KY... on February 1, 2011 at 10:27am our beautiful baby girl, Stella Mae Spinda, was born at 26 weeks gestation. She weighed 12.34 oz and was 9 in long - Stella suffered from Intrauterin Growth Restriction (IUGR) which caused both her extremely small size and her being born premature. Stella spent five days in the Neonatal Intensive Care Unit (NICU) at Norton/Kosair Hospital in Louisville, KY. She passed away late on February 5, 2011 from complications of her extremely small size. This blog was started when she was 23 gestational weeks old and we discovered her condition. It's original purpose was to keep family and friends updated on Stella's journey - we now hope to use this blog as a way to continue Stella's journey by honoring her memory and also as a way to support others who are struggling with infertility or have lost a pregnancy or baby.

Friday, June 17, 2011

What I Want

God never asked me what I wanted. If he had, I would have told Him to fix her, to make her all better so that I can bring her home and love her more than anything in this world. God never asks us what we want. We learn that the world just doesn't work that way, that He just doesn't work that way. I know there is a plan... I know that God doesn't "do" things to us - He does them for us. And when the things that are done hurt us, He is there to cry with us. This doesn't stop me from thinking about all the things that I want.

I have never been the kind of person who could ask for things. I am the one to meet others' needs and if mine get met in the mean time - great, if not - I muddle through. Lately I have been really struggling. (I laugh as I type that) That phrase is about the best way that I can express myself to anyone. My way of reaching out is to say "I have been struggling lately." Not a very direct way of reaching out, huh? Maybe it is because I'm not used to reaching out. Maybe it is because I don't want to be a bother. I think that part of the reason that I don't want to reach out is because I am afraid that I will be rejected. Not asking hurts much less than asking and being rejected. I guess writing my feelings in this blog and then hoping that people read it is about as indirect as saying "I have been struggling lately." (I laugh again at myself) Although I know that I'm being very indirect, that writing in Stella's blog is not the same as actually calling someone and telling them what I need - I feel that this will get a lot of things off my mind. I haven't written in a long time. I've let Mother's Day come and go, Stella's Due Date come and go, and all of the very bad and very good moments in between come and go without writing. I hope to write a special post for the love of my life on Father's Day, but today's post is just about me. My needs... what I want!

I want my daughter back! I want to hold Stella. I want to sing to Stella. I want to read to Stella. I want to give Stella a bath and dress her in a pretty dress. I want to wake up at 3am because Stella is screaming and hungry. I want to sit in Stella's room and feed her until she falls asleep. I want my daughter back. I want her to go to preschool and kindergarten. I want her to make her First Holy Communion. I want Stella to go to school and I want to help her with her homework. I want to watch my daughter grow up. I want Stella to graduate from High School and go off to college. I want her to come home on the weekends and ask me to do her laundry. I want to watch Stella fall in love, succeed at her career, and start a family. I want Stella to be a mother. I just want Stella back in this world!

I want my pregnancy back! I want to travel back in time, back to December 21, 2010 8:00am - the exact time that we were first told that something was wrong with our baby girl. I want to go back to that day in the ultrasound room. I want Stella to be the exact size that she was supposed to be. I want to finish out the next 20 weeks of my pregnancy without complications. I want to have a baby shower, to paint her room, to wash her clothes, to put her crib together. I never had a baby shower - instead I had a memorial service and a lunch at the restaurant where my shower was booked. We didn't get a chance to paint her room - we wanted to wait until after Christmas. I never had a chance to wash her clothes - I took all the tags off and put them in a laundry basket, but I didn't have any baby laundry detergent yet. Her clothes are still in the laundry basket waiting to be washed. We never had a chance to put her crib together - John was going to do that the week before he went back from Christmas break. We were in Louisville already during that week. He crib now sits in the box, in her closet. I want to have heartburn, swollen feet, and no energy again. I want to sing in the car at the top of my lungs and feel Stella kicking me again.

I want to feel something other than deep, painful sadness. Even when I'm smiling I can still feel such horrible pain. I want someone to come sit with me when I'm sad and crying. I want someone to hold my hand. I want someone to reach out to John and help him through this difficult time so that he doesn't have to be so strong for me. I want people to understand that I'm not "over it", I'm not "better now", and I never will be. I want people to understand that four months is NOT a very long time. I often wake up and think that it has only been a few days since I lost Stella.

I want people to know what this is like without actually having to lose a child. I have nightmares every single night. Every night! I haven't been able to actually fall asleep on my own (without medication) since I went into the hospital in January. I have to have at least one TV on, sometimes two, at all times. If the room gets silent I start to hear my screams from the night that she passed away. I replay the last few hours of Stella's death in my head at random times - while I'm watching tv, driving in the car, or even when I'm grocery shopping. I have to remember exactly what nurses where in the room, who was doing what, and what they said to me. If I can't remember I start to panic. "Grief comes in waves" - that's the quote that everyone uses to describe grief. My waves knock me over, punch me in the eye, and leave me for dead... if it wasn't for my wonderful husband, I may just lie there and let those waves kill me. I ask God to take me at least once a day. I try to bargain with Him - He can take me if He gives John Stella, or sometimes I just ask if He can take me so that I can be with Stella up there. I often just yell out "I don't want to be alive" or "I can't live without her" I feel that these statements are true. Please note: I do not have any plans on killing myself. I just do not feel like I can live without Stella. I do not have the ability to deal with anything emotional. I can't process and reason. Things get jumbled up in my brain and I can't get them sorted out. I can barely talk on the phone, I can't read books, I spend most of my time playing Farmville on FB because it distracts me, I watch the same cop shows over and over again and sometimes they are the only things that keep me calm. I want everyone to know that I am not nor will I ever be the same person.

I want people to know that I need help! NOT medical or mental help... I'm going to counseling, I've talked with my priest, and I'm pretty open about my feelings with John. But I need help! I need someone to help me take care of things. I need someone to just sit with me. I need someone to help me get back to working out. I need someone to tell me that sleeping till 3pm and then watching tv the rest of the day is okay and normal. I just need help!

I wrote at the beginning of this post that I am not able to reach out. My counselor suggested to me this week that I begin to reach out to "safe" people. I find writing a blog to be safe. This is about as much reaching out as I can do...


  1. Shanna, you are so brave! I love you! I"m so sorry for all you've been through the last few months. I want all these things for you too.

    Holly Strauss

  2. Shanna,
    Have you joined a support group of parents who have lost premature infants? Only they would be able to really understand your particular pain and grief. Love, Judy

  3. Shanna,

    You are very brave as the previous lady said! I am glad that you have a great support system around you. I know you said you cant read books right now but, maybe when you are able toagain you can try a book that really helped me in my darkest hours. My preacher at the time gave me when I lost my pregnancy years ago "Born too soon". It dosnt make it better but it helped get me to a better place if that makes sense.

    You are in my prayers,

    Nichole Banks

  4. I sit here, crying with you. We all needed to be reminded, Shanna. I am grateful that you are reaching out. I wish all the things for you that you want, and it hurts that you can't have them. I know that you will never be the same person. In ways, unimaginable to those who have never lost a child, you have been forever changed. I cannot imagine your pain, the void left in Stella's absence. And as hopelessly human as I am, I am terrified to try to imagine it. All I can do is be here for you when you do reach out. As far as not wanting to be alive? There is a huge difference in existing and living. I understand what you meant. You know, your need for remembering the details? It is fine. It keeps it real for you...to embrace the moments of her life. It keeps it all alive, and real. And when you are ready to let a little of it slip, you will know...maybe you never will. And that will be okay too. No one else can tell you about the steps of the grieving process. We are all different, and your loss, in my opinion, is the toughest loss any of us can ever know. When the universe is working just right, our children bury us--as elderly parents. But...to lose a child? Stella took things with her when she left, and in the place of the things that are gone, other things were left. Like a fear that the world will never be wonderful again, and emptiness, and fear of risking that pain again, and maybe even guilt that someday you will embrace a world full of joy and happiness without her. I wish I had a magic wand. She would be here with you right now...and I would get to meet her when you visit, and I would have smiled at the pretty baby-girl things at your shower. But, no magic wand, just my shoulder to offer, and hugs. Time never truly heals, I have come to realize. It just softens the edges of the hurt, dulls the pain, and teaches us how to live without the people we have loved and lost, by not thinking about them every moment of everyday. Love you and your dear hubs. :-)

  5. My beautifull daughter i would give my life to have Stella back and you all have yor family together. You don't know how much I also muss her. She was the most beautifull girl I ever saw. I wish I lived closer so I could hold you like when you were a little girl and you were sad and afraid. I know all the words I or anyone says can not take away the pain. You know I'm here for you and If you want and need me please I will move down in a sec if you know I can help. I love and miss you all so very much. My love and prayers are with you all.

  6. Shanna,
    i understand u need some1 and understand what u want and why u are 1 in a million so brave 2 speak about ur loss god alway's takes the ones we love and it will alway's be hard if we could turn back the hands of time then i would do it because u deserve the chance 2 be the mum u have alway's wanted to be my love is with u girl bless ur heart and soul girl.
    love kirsty xxxxxxxxxxxxxxxx

  7. Shanna, we've met through very difficult and odd circumstance, but it's because of those situations we share so much of the same emotions and struggles. Though I've never met you, I feel great compassion, love and pain for you! I can easily relate to everything you've expressed and truly understand the daily challenges of living again. Not just existing, but really living each day to the fullest. I don't know how, or if ever, I'll get that back or I would happily give it to you!

    I do know talking to other Baby Loss Mommas makes me a feel a little bit better because I know they understand. Through the Perinatal Grief Support Group we attend twice a month I've connected face to face with these parents and I've found parents who are much further (times wise) along in their grief process. Their perspective helps me see that even though life will never be the way I envisioned and hoped, I can survive. Even though they lost their daughters 3 years ago, they are still in pain, have emotional triggers and lack the family and friend support they need and that makes me even sadder and angrier knowing things will never get better. All I can do is be there for them like they are trying to do for me and hope that we can all help to lift each other up out of the pain and darkness, so we can learn to live again.

    I know our children wouldn't want us to suffer, just like we wouldn't want that for them. If our children where here they would want to see us giggle and smile with them, so for my Stella I will continue to try to find ways to make that happen even if I don't really feel like I have it in me. Our Stellas want us to live life to the fullest, love deeply and share our smiles and stories with the World!