Pipe dreams and the little things keep me believing

I see little things like this picture and I just suddenly realise how much I ache with missing Emmet. I want a little boy in my arms to look at this and smile and think off.

I miss both my babies but it’s hardest knowing that Emmet should be here in my arms right now. Just over 7 months old.

His was the only tiny tiny perfect little body I saw, and his was the only pregnancy out of the two I ever tentatively started to embrace. I briefly imagined a future with Emmet but I never dared with Reá. I was too terrified to get involved. I had just dared to love my first little flame before they were ripped away and I cut myself off from my second pregnancy almost completely.
I regret that now, deeply. But I was surviving. When I look back and feel disparaging towards myself I am reminded once again to be gentle with myself. Miscarriages are trauma. And they are loss. For me the deepest loss I have ever experienced, and I would never wish it on anyone. I would throw every life lesson I have learnt from my losses for one more second with my babies.

While Reás loss in some ways hit me emotionally the hardest, I spent the most time with Emmet, his loss was by far the most difficult thing I have ever experienced physically despite a lifetime of physical illness; and it having been a fully natural miscarriage.

I miss them both so god damn much it takes my breath away.

I absolutely ache to try again but also there is an gnawing, stabbing terror in the pit of my soul at the idea. I know that after my second loss, and the tailspin it sent me in, that right now another loss would be catastrophic. And I say another loss, because I honestly struggle to see myself with a living baby now. I try. I am really trying. But the only experience I have of motherhood is losses that have torn me right open.

It’s just a pipe dream really, having a biological child, and I know it. My body can make babies. Just not healthy ones.

In truth I am vividly aware if how very unlikely breaking the first trimester hurdle is for my body, especially in its current state. More than one of my conditions come with increased risk of miscarriage, especially early on, and then it’s still a genetic minefield if we reach full term.

I have researched and read books and asked in forums. There is screw all research being done on Ehlers-Danlos and pregnancy. And what little information there is honestly scares the living daylights out of me.

Either nobody can or will say for sure the real risk levels associated with Ehlers Danlos syndrome type three- other than that my kids will get it.

My genetic testing was re organised by the hospital so I am still waiting and honestly capping myself over it, but if it is a confirmation of classical or type one Ehlers-Danlos then my chances are even less. It has a 100% inheritance rate, although it is a spectrum disorder.

Mine is particularly severe if it is type three, and reasonable severity if is is classical/type one.

I await answers. If nothing else, even though I have made peace with our choice not to try for biological children, or at least I am trying too.

I don’t know if I will ever be able to close that chapter of my life until there is a child in my arms for good, or then again I may spend a life with what ifs in my heart.

This testing is full as much about getting the answers I need to have better informed treatment, as it is about finally knowing for sure. It doesn’t matter what the statistics tell me I need this proof. Solid and indisputable.

I don’t know what the emotional fall out is going to be. But I know I need to know.

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