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Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged and understood.

Thanks to photographer Xin Li and to artist Stephanie Sicore for their respective illustrations and photos.

parenting after loss > Rainbow son with Apraxia

Our son, our rainbow baby, will be three next month. He and his sister are the light of our lives. We have know for some time that he has a severe speech delay and now are pretty sure it has a name, apraxia. An incredibly rare speech delay where his brain doesn't communicate well with his mouth and he can't make the correct sounds to make words. It will take years of intensive speech therapy to help him. It is a strange place to be. He is our rainbow. I feel already so protective of him and this just compounds that feeling. I prayed and prayed for him. It brakes my heart to see him struggle to communicate. I see other kids his age speaking so well and I wonder what the future holds. Will he struggle with friends, with bullying, will he act out as he gets older. At the present he handles things pretty well but I see the frustration in his eyes. He is currently in speech therapy and will start a preschool specific for kids with a speech delay in the fall. I just want him better. I ache to hear him say mama or I love you. I have put on a brave face for him, my husband and the rest of the family but it is so hard to see him struggle. I know that he will improve and that I just have to be patient and it will be on his own time but I just wish I could make it go away. :(
March 14, 2016 | Unregistered CommenterTT
Hi TT,
I am so sorry for your loss, and so happy for you that you have your rainbow boy. I know it is hard to witness our children struggle, especially knowing how dearly bought life is after having lost their brothers and/ or sisters.

I have a brother, who passed away last Easter from ALS. He was diagnosed at the age of 18 months with profound autism. Life wasn't easy, but my goodness what a beautiful gift his unique being turned out to be, to himself as well as to others. There were certainly times I hurt for him, was anxious about the future, and questioned why the hell life was so unfair to him, but in hindsight I can also identify the opportunities, the grace, and the strength that led him to grow to be an absolutely amazing man.

My oldest child, now 21, struggled with bi-polar disorder in his teen years. He is doing well now- I hold my breathe even as I write this- but it was so terrifying to contemplate the worst his future might hold, so heart breaking to see his struggle and pain. But- he is my son. I truly think we are sent the soul we are supposed to parent in the package it is supposed to come in. He is smart, beautiful, and a joy to witness as well. His unique mind is a part of who he is, and I love him in totality.

It sounds like you are the perfect mom for your sweet boy. You are empathetic, and you see him, and you are getting him everything he needs to succeed. You are setting a good example for him by being accepting, loving and proactive and giving him the security he needs to learn to handle this. You are a loving mom, and you will always have his back and that is what he needs. Take heart, you are playing the long game and you have so much going for your son, his biggest asset being you!

I really liked this essay I read in Brain Child magazine a few years ago by a mom who's daughter began to stutter. I put the link below. She speaks to many of the things you brought up.

Keep breathing Mama, and remember to enjoy your beautiful boy! Remember you both need to laugh and have fun!

With love and big hugs,
Jen ( Joseph, AdiaRose and Imani's mom)
March 15, 2016 | Unregistered CommenterJen W
Hi TT,

I am really sorry for the loss of your baby. And I'm sorry that your rainbow son is facing challenges. I have no experience with apraxia and I'm not quite sure what that means for his future. I sincerely hope that your love and support, combined with time and therapy will help him master communication over time.
I do, however, completely relate to your feelings of anxiety, sadness, anger, vulnerability... My rainbow son was diagnosed with food allergies when he was a baby. I flipped out. My mind kept going to worst case scenarios, the stories of children who died of anaphylaxis. Maybe that's PTSD, or just the knowledge that that one in a million could easily be you... And I was so angry. After losing a child, it only seems fair that the one after that should breeze through life without serious issues. Recently, my son has also started stuttering... I'm hopeful it's just a phase, but i'm also imagining a lifetime of struggle, bullying, isolation (just like the mom in the story Jen shared). It breaks my heart. I don't know, I imagine any mom would feel that way. But when you've lost a baby, the pain seems to compound. And the anger and vulnerability are of a different scale.
Again, I hope your son's problem resolves in the best possible way. And I'm sorry you're going through this. I can very much understand your heartache.
March 17, 2016 | Unregistered CommenterMira