Tuesday, February 2, 2010

Regrets

When we found about Sydney Grace having Trisomy 18 at my 19 week ultrasound and about her severe heart defects, we started planning. We did not want to have any regrets. We talked to all the doctors about our wishes. We talked to the funeral home about the service. We planned for our friend, a professional photographer, to take pictures at the hospital. We bought Sydney a christening gown to be buried in, and we even had a few other outfits for her to wear just in case she survived a few hours. We thought we had everything planned and ready to go whenever Sydney decided to be born.

However, Sydney decided to surprise us all. She was not ready to leave us right when she was born as we thought. We never imagined we would actually be able to take her home with us. Most of the plans we had made before she was born were now changed. And we were so happy to change all our preparations. We had to buy clothes, diapers, wipes, a bassinet, and all the things we never thought we would need. Let me just say, Sydney Grace had every preemie outfit from all the stores in this county.

When we did bring her home, I think my head went out the window. We all were so excited to have Sydney Grace home, all we did was hold her. She was rarely put down. As a matter of fact, the last few days of her life, she would get so upset if she was put in her bassinet or glider. We spoiled her rotten, but she deserved it.

Here is my big regret... We never took video of Sydney once we got home from the hospital. What was I thinking??

I was looking at the videos from the hospital this morning on my computer for the first time. It occurred to me that there was no video of her at home, at all. I physically felt ill. I was so upset with myself. When Rafe was born, we have so much video of him the first few weeks. From his first bath, to changing diapers, to laying in his bassinet, to just being held. Why did we not do this with Sydney? We knew that we probably would not have her for long, yet I never once thought about videoing. Sydney took her first and last bath in a little tub about six hours before she passed away. The only thing I have is a picture from my phone camera. She was so cute in it too. She did not cry, like her big brother Rafe did with his first bath. She was so relaxed. She had her little legs crossed and propped up on the side of the tub.

I guess the reason why I am so upset is that we only had her for 20 days, which I realize is a wonderful gift from God, but I am really afraid I will forget things. All her little sounds and cries, her expressions, the way she would do her mouth when she was hungry, the way she would put her hands to her face, the way she would move her arms and legs... Basically everything that photos will not pick.

I realize that some people will say that I should be thankful for all the memories I do have. Aly took approximately 3000 wonderful photos. I have all her clothes and blankets to smell. I have her foot prints, some of her hair and many other things. Most importantly I had twenty days more that most T18 parents have with their babies. And I am extremely thankful and grateful to God for letting me have all these memories. That being said, when I found out about Sydney, from the very beginning I would say over and over, "I do not want to have any regrets," but unfortunately I do.

20 comments:

  1. I know that must be hard, You just don't think about some things when you are so excited to be able to spend more time w/ her then what you thought. You will remember her, you will never forget those wonderful things that she did, the way she cried, and smelled. You won't because she is your angel and you can not take those things from a mother. Don't feel regret, only love for you angel, she does not regret anything. Stay strong, I will never forget your family, and you will never forget your sweet baby girl.

    Stephanie Kolasa
    Nc

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  2. Hey sweet Lindsey,

    Could there be a gloomier day than today? Cold, wet, dark, winter... I know this has added to your feelings of regret.

    Yet- rest assured that you have amazed us all with your calm and peaceful acceptance of what has been a most trying time. Perhaps there is a reason that you did not take video of Sydney at home- you will have your perfect recollection of those little things that your precious daughter did- those times are truly yours, and Joel's. She is flesh of your flesh- for all eternity.

    This time we call "life" is so short when compared to the eternity you will have with Sydney. Sometimes you may just have to have the attitude, "I didn't get video at home..." but it just doesn't matter. Or "Why didn't I ... (fill in the blank)" but it just doesn't matter either. What matters is that you and Joel are her chosen parents who gave her life and who will always be her parents.

    Do not be discouraged or overwhelmed. Our Father in Heaven knows your heart, and He prepared a way that Sydney will be yours forever. He sent His son- a perfect man, to die not only for our sins, but for our heartaches, and pains, and even our regrets.

    I know how much your mother loves you. If she could take this pain from you, she would. I know that our Savior loves you more...even though that doesn't seem possible with our limited understanding. He can take this pain away and give you the peace you desire. Trust in His love, and by and by- you will feel better, and your burden will be lighter.

    You and Joel and all of your family are still in the prayers of friends and new friends.

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  3. Pictures and video can capture a lot and trigger memories you had, but they still do not always capture all the feelings you were having at once. Write down the little things now when they are fresh in your mind so when you are feeling like you are forgetting you can remind yourself (add it to your scrapbook perhaps?). Having said that, this clearly this won't replace a video or extra pictures that you are missing, but it may help you feel reassured that you won't forget.

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  4. Hi Lindsey and family I just wanted to let you know that i am so sorry for your loss. I am a mother of an 8 month old so your story has really hit me hard since I am a new mommy. When I found out about Sydney I didn't know about Trisomy 18, so I did some research. All the sad stories I read brought me to tears and literally cried all night, I stayed by my sons crib and watched him sleep and since then I have been taking time to apreciate all the little things good or bad. When I read about what Trisomy 18 was all I could think about is how angry at God and depressed I would be. And as I watched Sydney grow durring her 20 days and the attitude you and your family had towards everyone including God, I began to see things differently. I just want to say thank you so much because Sydney and your family has really put a change in my life. Every breath we get is a gift from God. Thank You.

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  5. Lindsey- I have never met you nor have I ever walked in your shoes, but somehow I feel your story and the life of Sydney Grace has helped me to continue living a hopeful life. Tomorrow will be the one year anniversary of my husband and I losing a baby when we were 13 weeks pregnant. Unlike you, I had not planned on the arrival of this baby and I didn't plan on having a baby at that time in my life, but once the baby was not an option I mourned for all the little things I would miss out on. Since that time I have thought everyday why God had given us such a precious gift then taken it so quickly when everything appeared to be going good. I still don't know all the answers that I often find myself searching for, but after following your story since the day Sydney was born I now know that God does have the ultimate plan for all of us and everything he creates. During Sydney's journey I prayed like I had never prayed before that God would show me a miracle with your baby and now I realize he did. Thank you for sharing all of the moments...triumphs, obstacles, and your unwavering dedication and love to your daughter. You have touched more people then you will ever know.

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  6. Have no regrets for taking the time to hold her instead of laying her down to video her. Have no regrets that you comforted her instead of capturing her crying on video.

    Although it is nice to have the video of a bath or cry or smile and laugh, it is much more rewarding to know you were holding on to every moment and every breath she had.


    Remember how very special your decision not to abort your pregnancy was and how unselfish you were in sharing your story to touch the lives of so many. Every time you feel regretful think of the blessings that you and little Sydney placed on the rest of the world.

    You are a remarkable woman... So loving and unselfish. Thank you for touching so many people in sharing your experience.

    I pray that God keeps these images fresh in your mind daily and sets you to rest the regrets you are having.

    In our prayers and thoughts!!!!

    Karina

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  7. Lindsey,
    It is human nature to think of all of the things we could have and would have done differently when we lose someone we love. You did what any parent would have done and that is you spent every waking moment taking in every little detail about her, holding her, making her comfortable... praying for you tonight. Love you, Jessica

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  8. I have to say upon reading your post that I immediately thought that you would have had to put her down to video her. I know someone else would have held the camera or held Sydney, but that was just my first thought. You would have had to put her down to take the video. I think it was more important to Sydney for you to just hold her, focus on her needs. I know you wish you had a video, but it just makes me admire you more...the fact that you were less worried about yourself after the time came, but only concerned with making sure Sydney was happy and "spoiled" for her time with you. What an unselfish person you are.

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  9. Wow, I just read through the comments and yours and Sydney's ministry is showing fruit. I will pray that God's plan for you will be revealed clearly. You have such an awesome attitude. I am sure that sometimes it might cross your mind to not have such an awesome attitude, but we are all human. You are not expected to be perfect. Trust in and follow Him and He will guide you. Things will get better. Sometimes "get better" may seem to stand for "forget.". You will never forget Sydney, but you will begin to remember the good things, more and more often. Soon the good things will overwhelm the grief and it will BE better. You are covered in prayer.

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  10. Dearest Lindsey,
    Don't look back that way. You and the Family were too busy living life and enjoying your gift. What a joy! It's making the memories in your heart that counts not being able to rewind them on a machine. Close your eyes and dream...it will all be there, always. Just as it is written..." Never will I leave you never will I forget you.' God will provide all for you.
    Love and Prayers,
    Ann Powers

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  11. Video is great, but it also requires that someone be behind the camera instead of in the moment. I agree with another commenter, write it down. Write how you felt, the little things she did, write it before you forget it. Our little girl is 1 year old and I started writing letters to her when she was in my womb to help me remember what it was like being pregnant with her. I write her a letter every month discussing her milestones and personality and even special memories that were created that month. I sometimes look back at the first letters and am reminded of things that I was too busy enjoying to capture on film. A mother's mind is a strong box for memories, so I think that writing down whatever you can recall will trigger more feelings and memories than even those that you write. I will continue to pray for comfort for your family, for healing. Stay strong, you can't expect yourself to remember everything, such as videotaping, when you are trying to enjoy every moment with a child, especially one that you aren't sure how long you will have. I am sure that Syndney is happy that you spent your time holding her and loving on her instead of behind a camera. You spent those 20 days with her focused on giving her all the love and attention you could instead of video taping the memories for yourself, that is the ultimate in selfless acts as far as parenting goes.

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  12. Sometimes we spend too much time behind a camera and not enough time in reality. You gave Sydney Grace your arms and your heart - a gift to her of your love.

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  13. I am sorry this has hit you so hard...it brought tears to my eyes reading it. However, I think the reason why you don't have a video of Sydney is because she was being focused on by her loving family. I believe that says a lot about how loved she was. You took ALL of your time to show Sydney how much she was loved and that is what she needed. God Bless you!

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  14. Bless your heart. I will be praying for you to find comfort and peace. May Jesus continue to hold you tight to Him.

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  15. There will never be enough of her. I lost my trisomy 18 daughter in April '08. We, too, found out at 19 weeks. I had had a 39 week still birth in 2005 and vowed, this time, I would do everything I didn't know how to do/couldn't do the last time. Our Libby surprised us too. Even though she had severe spina bifida and heart defects, she, too got to come home. She lived 9 days and 22 minutes. It was amazing. We took over 1000 pictures, we have hospital video. NILMDTS was there. We also had nothing at home, but I had bought outfits beforehand to have as keepsakes. She actually got to wear them! But, I still have regrets, not enought pictures, not enought of her a certain way - eyes open, naked, with others...I thought I had covered everything. We didn't get video at home either, and only a little in the hospital. I didn't get to make the 3-d molds of her little feet and hands either, because I didn't want her to get cold. The list goes on and on. There plain will never be enough. So I try very hard to focus on what I do have of her, I'm so blessed to have known her and her little personality. I try so hard to hang to our very special moments...it is never enough. Your Sydney was beautiful, I relived my Libby while I followed your story. I cried when she left. I know on some level how you feel. Your memories will give you the joy you need in the coming days.

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  16. No matter how long and hard we prepare we always have regrets. I don't think they are avoidable! It is human nature! I know how I feel not having video from the hospital when my son was born and I got to keep him. I cannot imagine the feelings you are having! Justify it by realizing that you and your family gave her 100% of your attention while she was here instead of witnessing it from behind the camera! Those precious moments can never be taken away from you and knowing your were "there" 100% of that time is special!

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  17. Lindsey and Joel,
    I think my heart aches for you now more than ever. I can't imagine how slowly time must feel for you right now. "Time heals all wounds" may be true, but living through the time is the hard part. We will continue to pray for you and admire your strength, courage, and faith.
    Love and Prayers,
    Mary Jo Edwards

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  18. You are a dear woman!
    I am the mother to three children, my youngest was initially diagnosed with trisomy 18 soon after birth. We made plans to take her home, give her to God as we thought this was the right thing to do. We were blessed with a miracle. It's a long story - but along the way I have tried to think of every moment with my children as a gift, to treasure every little thing. But this is hard - because you can't savor everything and still live. I took videos of my first child, a few of my second, but just one or two now of our littlest, who has had some severe medical problems. You think I would do everything to record everything. The truth is, the regret is that they get bigger, the babies that we give birth to change and grow into toddler and then little children - if we are lucky. I have regret about each of my children, that I didn't appreciate them as much, or savor the moment as much. I think it might be part of the heartache of being a parent. Your heartache is something I have imaguned and prepared for but never experienced. I am so sorry for your loss. Sara Knowles sariasar@yahoo.com (writing from my husband's google account)

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  19. Lindsey, Would it be ok if I sent you an email? I couldn't find your email address on the blog, but would you send it to me at
    magdalenasmommy@gmail.com

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  20. Trust me. You won't forget. My James Collins Fitts, Jr. died May 2, 1975. That is over 35 years ago. I haven't forgotten one moment, one smell, or the hurt. He was stillborn so he never saw me. But he knew my voice as I sang to him for 9 months. I also lost my daughter, the same way in 1980. Both died from cord mishaps during birth. You learn to live with it, love more from it, even counsel others in time. I keep the clothes washed in Ivory Snow to keep that fresh smell. God bless all of us mothers who have had to endure the lost of our babies.

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