Forever in our Hearts ~ March 17th 2010 - May 14th 2010
Laura, I think the real problem here is how little ANYONE knows. No one knows what caused Gwen's heart defect in the first place. No one knows what other kinds of problems could accompany it. If she had had a Q22 deletion (did I get that right?), then they know that there are all these other things that go with it--seventy things, I think it was? Things that have nothing to do with the heart at all. Maybe whatever caused her heart problem caused lots of other little strange things. You told me that she had a genetic duplication and that doctors are just now finding out that people have those at all, and they don't know what the effect of them is. In particular, auto-immune disorders are weird sneaky things that the medical profession still hasn't figured out, at all. They often co-occur with other odd medical things, and no one knows exactly why. You followed your doctor's advice--you asked your pediatrician about the probiotics; you told everyone how serious it would be if she got a cold, so they took all necessary precautions. JC didn't come over with me to meet her that one day because he was on the tail end of a cold. He wouldn't have known that was an issue except that you were so careful to tell everybody. The fact is that there is so much that no one could have known--that her doctors, who went to years and years of medical school and had tons of experience, didn't even know. How could you be expected to catch up in a 4-month crash course?This is what I do know, though. I know that you did everything in your power to give her the very best chance possible. I know that you loved her with the depth of your being, and that she felt that. And I truly believe that no parents on earth could have done more for her than you and Myers did.
Laura, I'm fully in agreement with Alisha. And I'm praying for you sweet friend.
I'd like to second Alisha's comments as well. Laura, you and Myers are model parents, with tremendous dedication. It is an honor to know you and to stand beside you. Keep talking, keep working through this, and know that we are all here for you.
I have never met a more loving and more compassionate parents than you and Myers. There is nothing that you could have done differently. You can't take responsibility for this tradgedy. You are an amazing mother and you protected Gwen, but there are some things that are just out of our control. My daughter had seizures that started when she was 4 months old. We took her in for lots of painful tests and procedures to understand what was causing the seizures. The doctors never found a cause which was devasting. When she stopped breastfeeding at 10 months, the seizures stopped. After that, I found a ton of similar stories online - and the seizures may have been caused by tilt of her head while breastfeeding. I felt a ton of guilt for putting her through all of those painful tests. I wish that we were all given a play book at birth to help us through all of these tough times.
Amen to what all these other dear friends have said, Laura. This is not your fault! I know you need to know why this happened so that you can stop endlessly replaying the what ifs. Blaming yourself is a natural reaction: you feel like somehow as a parent, you should have been able to protect her. But this is truly NOT your fault. To think we can protect our children from everything dangerous and scary in the world is the greatest wish of every parent. But it is foolish. We are so very limited in what we can actually control in life. In this day of portable hand sanitizer, 100SPF sunscreen and vaccination, it is hard to come to grips with that reality. You are NOT a negligent parent! And finally, even if you did make a mistake, which I firmly disavow, God is still sufficient. He forgives you. Forgive yourself for your perceived shortcomings. He has forgiven you for what needs forgiving. He will continue to do so till the day you are with Gwen again.
Laura, we don't know each other, but I know Myers and his family from when we were children. I have been reading each of your postings since I learned of you beautiful baby Gwen before she was born. I want to thank you from the bottom of my heart for the beautiful openness of your heart. My uncle (my father's younger brother) died unexpectedly on Sunday of a heart attack he suffered on Friday while riding his bicycle to work. He was only 52. It seems so wrong, so unfair, for people to die too young and unexpectedly. There is no understanding. Thank you for being vulnerable enough to let us see and share in your struggles to make sense of this. I have struggled with a continuous sense of loss since leaving PNG and coming back here to the US. In some way your words help me understand a little more my own sense of loss and that none of us are alone. Thank you.
Oh Honey. How I ache for you. I know you miss Gwen dreadfully and that you want her back. Even as far as we have come with medicine, there are still few absolutes. As a Mom, you want to find where the problem is and to put the blame somewhere. Don't lay it on yourself. You are not omnipotent. (If you become so though, let me know though, because I have some questions I would desperately like to have answered.)Yes, you let everyone share in her story. And I, for one, am richer for it. I loved her without ever meeting her. I loved, and hoped, and dreamed for her. And I have been feeling guilty too. While she was in the hospital I thought of her frequently, and prayed for her to grow healthy and strong. After she came home, I grew complacent, and thought less and prayed less, because I thought she was doing well. would you condemn me for this?
Guilt can and will eat you alive, Laurie. *hugs* to you. Guilt is not God's tool. I believe that. But I can also relate to you - I still replay all the things about Madison and wonder what I did that led to her loss. I still replay all the things I did in regard to my son and wonder what I did that might have given him Tourette's and Asperger's. When I say these things out loud, others reassure me those are senseless worries, senseless guilt, and on some level I know it's true, but I also know the guilt is always there. So I can relate. But although I don't know you as well as many of the people posting on here, I know you enough to know you are a wonderful, concerned, loving parent, and you did the best you could and took excellent (and I do mean excellent) care of Gwen. You did. I hope sometime when you are home if you want to talk you will consider me, even though we are not as closely connected as some of the other wonderful friends I see here. I pray pray pray that you can let go of the guilt and remember the love - yours for Gwen, ours for Gwen, ours for you.