The head and the heart

Despair is trying to sink its claws into me once again.

I ask myself why? Why did this happen to my family? I’ve made mistakes in my life. I haven’t always been the person that I wanted to be. I have regrets. But in the end, I really try to help others, to care about others, to make amends for my mistakes.

None of that matters.

I am having the hardest time in the last few days. I am having a hard time making myself do the simple things that need to be done – making dinner, doing laundry. I want to sit on the couch, peruse the trisomy Facebook boards, talk to all the mothers on my vet mom Facebook group. Basically, I just want to sit with James sleeping on me – making his baby suckling noises while he dreams. I don’t know how long I will have to hold him, to cherish his warm baby body against mine.

My magical thinking allows me to believe (for a while) that he is getting chubby, and he is doing well. And then another trisomy baby dies, and I remember what this disease really does. Or I see another “normal” baby his age, and I realize all the things that he isn’t doing, the things he can’t do. I hear the lusty cries that a baby only 3 weeks older than him lets out, and I want to weep.

For some reason lately, I have been having to re-accept that he is going to die. There will come a time when whatever ails him will be his last ailment – when we leave the house for the hospital one last time and then come home without him. There will be a moment when I have to face an empty co-sleeper, an empty bouncy chair, a lonely Boppy pillow, waiting for the warm baby that will not return.

I want so fervently to believe that he’s going to beat the odds, be one of a tiny club of trisomy babies that live to their teens. The odds are not in our favor. He can’t have his heart repaired at this juncture, thus stacking even more against him. I know this in my head, but my heart will not accept it.

I don’t want my joy to be sucked away from me. I want to accept that he is who he is. His path was written before he was born. It would never have been any other way – not in this universe. My job as his mom is to walk beside him, hold his hand, comfort him, revel in his beauty -in his spirit. And when the time comes, to let him go, to not make him stay when he is too tired. To love him to the end and beyond.

Rest in peace, Baby Emma Grace. Though I never met you, I loved you and your sweet mother and grandmother, who both gave you so much love in your short 3 months here. I  hope you are somewhere beautiful and bright, smiling down on this often dark and dreary planet.

 

 

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