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Pregnancy after loss was a mind game. But I thought once she was out, once she was pink and breathing, once my body had successfully sustained her life right into my arms, then I would be able to finally exhale.

That was true for all of about 20 minutes. 

And then came the realization that things could still go horribly wrong. In spite of the all of the time I have spent in therapy and on-self care, the realization that I could still lose my daughter seemed to undo all the progress I thought I had made.

The truth is fear is like a tick burrowed deep under the skin. It clings on, spreading disease right to the soul.

I thought I needed support only through my losses. Then I thought I needed support only through my pregnancy. As it turns out, I have counted on a lot of support as I parent my rainbow baby while trying desperately to keep fear from stealing all joy. 

Here’s a list of what kind of support I’ve needed:

1) Real, live friends also parenting rainbow babies.

I’ll get to online relationships in a minute, but what has saved my sanity on more than one occasion is to get together with one of my closest friends who knows what parenting afer loss is like. These friends listen and don’t remind me I’m being irrational (I already know this), but hear the worry underneath and affirm my love for my kids. They also believe a shared cup of coffee or wine goes a long way. I heart these people.

2) People who love my kid for the miracle she is. 

I have a hard time lightening up. 

Embracing joy has become sort of an unused muscle I’m relearning to stretch and flex. So watching my loved ones oooh and aaah over my baby, and tell me in a million ways how perfect she is for our family, reminds me to breathe in and savor the goodness of her. 

I need these people to help me embrace the good.

3) Online peeps who get it.

I am a part of a group online where we all come from a background of secondary infertility. Our past has skewed our psyches just a bit, and for the most part, we are trying to walk the tightrope between grief over our past and joy in our present and future. Most of us get knocked off balance and need a hand to hold. 

I am so thankful that when I struggle I can post there, knowing there are friends who are supporting me. And because it is online, it doesn’t matter if I’m struggling at 3 am. Online friends are amazing.

4) A proactive doctor.

You probably noticed I’ve posted a few times on my Facebook page, and here on the blog, that Ellie has had a few hiccups health wise. Each issue has been very stressful for me. While most moms might be able to take a really laid back approach to their child’s medical care, I need a pediatrician who will both LISTEN to my concerns, and take appropriate action. I’m not saying she needs to test my kid for everything my 4-am Google search popped up. What I am saying is I need her to be proactive. And to trust me as Ellie’s mom.

5) Medicine.

It’s true. I ended up needing medicine. The anxiety of whatever is going on has gotten me stressed to the point that I can’t relax even when everything around me says I can relax. 

6) An understanding partner.

I need my husband to understand that there will be times I will not get things done around the house because I will be holding my sleeping baby. That I might need him to check on her a million times during our movie. That I won’t be ready to transition her to her own bed yet. That I’m going to parent differently than I did previously. And that I need him to be OK with that.

So that is what I have needed in this gig called parenting after loss. I asked a few of my friends what they were looking for, and here’s what the had to say:

I need people around me who recognized that my babies were truly a miracle and understood how hard it was to get them. The ones who could see how disconnected I was from them (the twins especially being my rainbow babies) and didn’t judge me for being disconnected or want to know why I wasn’t just over the moon to have them. I was but the connection wasn’t there because I still lived in constant fear they would be taken away or it was all a dream that would end.

— Brittanie

Transition support. I need someone who understands what I’m feeling, and can help me transition away from the world of TTC, loss, pregnancy, etc… and help me see what’s ahead to look forward to.
— Fallon

I still want to talk about my baby and how she changed my life in so many ways. I want others to understand that she’s every bit my child … just like my 3 loving children.

— Adrienne

I needed recognition that the pain of infertility and pregnancy loss might reduce but never goes away after having a living child.
–Louise

I needed support for the anxiety that goes along with infertility or miscarriage which is normal, as well as resources for these types of issues.
— Kelli

I think the best support was the gentle listeners. My emotions were all over the place and I appreciated those who acknowledged my loss and then allowed me to speak on it when needed.
— Monica

I needed people to not brush me off. Like the “she’s here now so you can forget all the pain, emotions etc.”

— Leanne

The best support I’ve had are the people who truly “get it.” I hated hearing “miscarriages are so common” and “at least you have a child already.”

Because of online support like our parenting after infertility group, I don’t talk about our struggles much with other people because what sounds kind to them often feels hurtful to me.

— Bianca

What about you? What did you need when you raised your baby after loss?