In Samuel's memory, I created All That Love Can Do:
All That Love Can Do: Support for families who are carrying
a baby to term with a fatal condition. We offer support and encouragement
during the pregnancy and love and hope after they are gone. Any family who is
currently carrying to term after a fatal diagnosis, or has lost a baby after
carrying to term, (plus, of course, anyone who supports carrying to term) is
welcome to join. Like ATLCD at https://www.facebook.com/AllThatLoveCanDo?ref=ts&fref=ts,
and find help and resources at http://allthatlovecando.blogspot.com/
. You are not alone. We’re here to help in anyway we can as you courageously
face this journey. <3
We also have private groups for mothers, https://www.facebook.com/groups/allthatlovecando/
fathers, https://www.facebook.com/groups/564656533557968/,
grandparents, https://www.facebook.com/groups/556440507701165/
and babyloss parents who are TTC, carrying, or raising their rainbow, https://www.facebook.com/groups/508254959214516/
There are websites for parents choosing to give their baby life:
Cherishing the Journey
Be Not Afraid
Below is the blog post I wrote about this topic.
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I've been looking online for support a lot in the last few days. There is a HUGE "baby loss" community out there. So many, many mommies without their loves. But there are not many mommies who experienced the same thing I did. Not many mommies who decide to keep their sick babies and allow them to live for as long as possible. I guess people just kill their babies if they are sick. It's made me think, "I wish people would know that you don't have to terminate...there are other options!". When he was first diagnosed, they made it sound like the next step was termination. They didn't offer another option, it was just like "ok, when should we schedule the procedure?" (By procedure, you mean the killing of our son?) They suggested it over and over again until we finally said, "This is not an option for us, please never ask us again and make a note in our chart." (It's sick that we had to say that so forcefully).
I was thinking the other day, "If I could go back and do anything differently, would I?" (Obviously, if I had some way of making Samuel well, then a million-times yes, I would go back and change things). The answer is no. As much as I'm sad now, I'm so glad that we chose life for Samuel. I'm so happy we had eight months to love him and know him. We could have ended his life and then had to live wondering what might have happened. Instead, we saw it though and got to see him, and touch him, look in his eyes and hold him close. Yes, there are hard moments (and by hard I mean nightmarish) and yes, it's very hard to say goodbye. But I can't even begin to imagine the pain of never knowing what he looks like, or having thoughts of "what might have been". If you or someone you know has been told to end the pregnancy because it's not "compatible with life", just know this: you're not alone and you don't have to! You can make the most of the time you have! You can sing and read to your baby. You can take pictures and make videos of your time. You can choose life. No matter what is wrong, this is your baby. You can love them fully, even if you can't hold them outside your womb. And the memories of the time together will be priceless.
me: Good morning my love!
Samuel: kick...kick...wiggle...wiggle (Good morning mama!)
me: Mommy loves you, Samuel!
Samuel: kick...kick ( I love you too mommy!)
me: Samuel, Daddy's home from work! He's going to read you a story.
Samuel: wiggle...wiggle...kick...kick..kick (Yea! That's my favorite. I love daddy!)
Times like that were the best moments of my life. <3
I love this. Sometimes I hate that God has to use us in ways that are so painful. But for me, if people can gain ANYTHING from our situation, then Hannah did not die in vain.
ReplyDeleteI walked the same road you did. Mu daughter, Gemma, was diagnosed at 18 weeks with fetal hydrops. She was born still on August 14. Those months in between were so filled with love... and I am so glad we had her for that short time.
ReplyDeleteThank you for sharing your story. Your son is beautiful. I am so sorry for your loss.
I'm so sorry you have to live without your sweet little Gemma <3. It sounds like you guys did your best to show her a life of love while she was here. Thank you for reading and commenting <3
DeleteThank you so much for sharing. We said hello and goodbye to our son, Quinton Liam, June 1, 2011. At our 21 week ultrasound we learned that Quinton had multicystic kidneys and would not survive long outside of me, if he was even born alive. My husband and I knew that termination was not the path we would take. We prayed and hoped for a miracle. The hardest part of this decision was explaining our love for our baby and that we just couldn't be the ones to stop his heart. People would ask why I would do this to myself, I don't think they can ever understand the love I had even before physically meeting my son. I will never regret the decision we made and the hour and 19 minutes that we were able to spend with our son before he entered Jesus' sweet embrace.
ReplyDeleteQuinton Liam <3. He sounds like a special little guy! Thank you for sharing his story. You absolutely did make the right decision to carry him with love. <3 Thank you for reading and commenting.
DeleteHUGS! My first child was also a little boy with PUVs. We didn't know until the first ultrasound at 30 weeks. We were told he would die and there was nothing they could do. Somehow we were blessed with a miracle and the NICU doctors were able to place him on a vent and his lungs had formed enough for it to work (we were told his lungs could not have formed). He only needed that vent for 4 hours! I didn't get to see him until later when he was off the vent and only on oxygen. I'm so so sorry that little Samuel wasn't able to stay. My son should have died so many times, he should have so many more problems, but he's still here, almost 21 years later. He has autism and my kidney and more surgeries than anyone ever should have to go through, but he's here and for the most part he's happy.
ReplyDeleteSadly our little girl was not so lucky. It took us 8 years to get pregnant with her. At our 11 week ultrasound she waved at us (just like little Samuel did to you!). Went back at 15 weeks and found her heart had stopped. I didn't want to have a D&C, couldn't even fathom what would happen to her for that, so the doctor induced labor the next week. She was born April 15th, 2003. They did chromosome testing and an autopsy, but couldn't find anything wrong. Of course she was really tiny, so they couldn't see everything, but she had kidneys and they looked normal. The pain of loosing a child is something no one can understand unless they've been there. I wish no one every had to understand it.
Anyway, we've gone on to have one more son, he gave us quite a few scares during pregnancy and then had breathing problems at birth, but he peed all over the doctor, then all over the nurse. I was never so happy to see someone get peed on! He also has autism and some other developmental issues, but he's such a joy.
Our babies are all in Heaven playing and running around and watching over us.
Beautiful post! It is like telling a mother of a 2 year that has terminal cancer that you are going to kill her today since she won't make it to see 3. STUPIDITY! Thank you for making such a loving and WISE choice!
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