Choosing to end the battle doesn't mean admitting defeat, rather it's giving hope a whole new direction.
It's always amazing to me how life is a series of circles. Life hasn't been lived, the battle hasn't been fought, the victory won until the circle is completed. The circles in life are everywhere. Generations of people overcome the same struggles as the generation before. The moon is a series of shapes leading to one big full circle, before starting over. The wreaths making their way to my door each season signify a pattern of changing seasons. The clock ticks by from 12 to 12 365 days per year, never waivering.
David and I are currently working on closing the circle. Essentially we're back right where we started this journey four long months ago. If you ask either one of us if this is how we thought the circle would be closed, if this how we thought it would end, the answer is a resounding, "NO." If you ask if we're sure of this decision, you'll hear "Yes" ringing loud and clear.
In real life, without the philosophy, all of these analogies translate to, "We're back in our hometown hospital with our usual doctor."
This wasn't a decision we took lightly. We've been to countless doctors. Every file has been read, the research has been combed through all in a valiant effort for some miracle cure; for some answer that would allow us to wake up and have the whole situation be a distant memory.
All we found were eight doctors with eight opinions and no general consensus. More questions and less answers. There was the doctor that didn't read my file before sending us off with more scare tactics. There was the genetic specialist who saw the precious little baby on the ultrasound screen as insurance money. There was the doctor whose miracle cure was to prolong the inevitable. This was no longer an issue of "saving" Little Angel but one of life vs. quality of life.
David and I realized months ago that there is no miracle treatment for Little Angel. We had hit a breaking point where we just want to be in control and at peace with our tough decisions. This doesn't mean we've given up. We just wanted to return the whole situation to God, rather than doctors playing God. We still have our hope and faith, after all it is the greatest treatment.
Nice sentiment right? Makes sense in our heads. However, try finding a doctor that won't call you every shade of crazy for saying it out loud.
After touring Children's Hospital last week, we did find a kind-spirited doctor with a big heart to agree with us. This doctor told us he could perform every heroic measure there was, but the only "save" to this baby was to love her while we had her. The best best place to love Little Angel was back at home in the comfort of everything we know. After all, if this was going to be a miracle baby, it didn't matter what hospital. If this was going to be a baby born with Angel Wings, it didn't matter what hospital.
This wasn't how we meant to close the circle of our little family. However, this is what gives us the most peace and comfort. The lesser of two evils. The best of two bad choices. It's this sense of peace and leaving it to God, that will allow the circle to flow with love, long after it's been closed.
David and I have faced some tough questions from people trying to make sense of our decisions. It's okay to wonder and even judge us. We understand. We've judged ourselves more than anyone else ever could.
Last week we were posed the question, "If you won't let the doctors determine life vs. quality of life, who are we to make that call?"
Well, we're Little Angel's parents. That's who. As parents you just know what's right in your heart. It's amazing how in times of struggle, when faced with decisions you only read about on other people's blogs or see in the movies, that strengh gives you all the answers needed. The answers may not come right away, but they will come to you. They will be the right ones. It could be God. It could be Intuition. Very well a combination of both. Whichever, David and I have been guided through this battle with on outpouring of allies in faith, love, hope and support.
It's not defeat if you can see the hope in the circle.
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In my darkest hour, I turned the situation over to God; 6+ years later I look back on that time and am convinced it was that decision that got me through it. I admire you very much and pray you get your miracle. It takes a very special person like yourself to never lose sight of the fact that, no matter how hard times get, God loves you!!
ReplyDeleteYou are loved so much, by people who know you and by those of us who have never met you, but follow this blog and pray for you regularly. You renew my faith, and I pray that you never lose this ability to give hope to others even as you seek comfort for yourself. God bless you, your husband, and your Little Angel.
ReplyDeleteI don't understand why anyone would want to judge either of you. You didn't choose this situation and you are doing the best you can with what you have. I think you must have an incredible amount of faith and strength to have made it this far. You should be so proud of yourself for handling this with such grace.
ReplyDeleteContinue to place your faith in God and he will lead you through this. "Trust in the Lord with all your heart and lean not on your own understanding." Proverbs 3:5 You will get through this somehow. God Bless you and your family. I'll keep you in my prayers.
I'm sorry for your situation, it's so not fair to have to live with the news you have been given. But I think you are on the right path, going back home and leaving it in God's hands.
ReplyDeleteWe were blessed with a child that has a congential heart defect, and when I was almost 29 weeks along & hospitalized for Pre-e, we were told by several drs. that the baby wasn't going to make it. They also were pushing for more testing, etc. and when I said "it's in God's hands" they sent in the social worker because they thought I was crazy. The thing is, I've never been a very "religious" person. I always believed but was not a church-goer/bible thumper. But I was not crazy either. :) The social worker understood that we had just had enough of all the doom and gloom news and we were choosing to focus on the postive.
Prayers to you and your family.
I also don't know you, have never met or spoken to you, yet I follow your blog and pray for you regularly and want you to know I send all my love to you and yours and hope you know how many people are sending their prayers to God for you. You will be okay, no matter what. We're supporting you, more than you will ever know.
ReplyDeleteMany prayers for you, Dave and Little Angel. God knows all and loves all. May you find hope, love and strength in each other in the coming weeks, Little Angel knows how much she is loved already =)
ReplyDeleteOne suggestion I have - see if your local hospital or local community has a hospice center. Many people equate hospice with the elderly, but many centers have facilities for children and there are some that are willing to provide pre-natal hospice care. In cases where death at or immediately after delivery is possible and no heroic measures are planned, thinking about what you want done (or not done) helps. Death comes to all of us and not everyone has the benefit of planning a loving and graceful exit.
ReplyDeleteThat was so beautifully written. I believe you are doing exactly the right thing for you and your baby. No matter what the doctors think, hope, or say, they won't be the decision makers in LO's fate. God will take care of everything. It sounds like you two are very at peace with this conclusion and that is the very best situation you could ask for to bring your LO into.
ReplyDeleteAlthough we have never met, I pray for you regularly. Your strength, devotion, and faith is so encouraging. God bless all three of you as you embark on the last leg of this journey!
ReplyDeleteYou have to make the decisions you can have peace with. The decisions I made the day of my son's birth and death haunt me. I am eaten with guilt over some of them, even though ultimately my choices were to trust my caregivers to do their best for me and the failure was not mine.
ReplyDeleteSo you do what is best and have no regrets. Peace be with you.