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Guest post: "No parenting manual could prepare me for Eva"

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MumsnetGuestPosts · 22/02/2016 16:20

When my daughter was born, instead of being faced with latching issues and colic I was told she was blind and deaf. She had brain malformations affecting the areas of her brain that help us think and process. She had low muscle tone and, I was told, might never sit up, crawl or walk. She had heart abnormalities.

Instead of worrying about whether I would be able to settle her to sleep, I was worrying about whether I was up to the monumental challenge of being her mother.

I sat in the the neonatal unit with Eva on my chest, knowing she could neither see or hear me, and I sobbed. I saw my career as a teacher disappear. I saw my relationship with Eva's father fail. I saw Eva and I together alone, isolated. I saw myself as the 24-hour carer to a daughter who never smiled, or talked or knew I was her mother. I saw my life stretch out in front of me in a way that felt so desperately sad. And I didn't want it.

As I drove to the hospital each morning, I thought about how simple it would be to turn the steering wheel into oncoming traffic. I didn't swerve - but I did give up in a way. Eva's father's decision to leave us left me without a place to live. Eva was due out of hospital in just a few days and I had no income, no place to live and nowhere to turn.

These all feel like excuses now. But then they felt like insurmountable obstacles. After six weeks, I put Eva into foster care for two months.

In the meetings leading up to this decision, I repeatedly asked what I needed to do to change my mind. Seven days notice was all I needed to give and I repeated this to myself like a mantra.

I needed to crawl myself out of the well I had been stuck in to see where I was. Eva needed a mother in control, who was not crying constantly. She needed a home where the power bill could be paid.

Within a week of Eva being in care I knew what I wanted. I wanted her back. So I set about making sure I could be the mother she needed. I went to therapy. I went on antidepressants. I signed up for benefits and investigated childcare so I could return to work. I moved into a very good friend's family home and bought Eva a crib.

When Eva came home to me, I was more than ready. I was excited. I had a new manual for being her mother. It involved learning to insert her feeding tube and creating a touch-based sign language system specific to her - I felt like I could do it.

When I had previously pictured that life Eva and I would have, I couldn't imagine how my love would trump obstacles. I couldn't see that she would be neither a burden or a struggle, but that she would be my greatest source of joy.

Eva learned to smile, and then laugh. She loved touch and being carried about constantly if she so desired it, and she did. She could lift her head and prop herself up in tummy time. She could sit with some assistance. And eventually it looked like she would crawl.

But she never got to. On February 25th 2015 Eva woke in the night coughing and crying, and instead of calming as she normally did when I went to her, she stopped breathing and her heart stopped.

Her death was a complete shock. Despite her medical complications I thought of Eva as strong. She was brave. So the fact that a simple cold was what took her away from me, after she had been so much sicker so many times, felt like a cruel blow.

Eva died at 10 and a half months. She had been back in my full time care for six months. It breaks my heart that in such a short life I missed out on eight whole weeks of it.

I know other special needs parents don't get this chance to regroup. Why should I have had this break when others are doing it tough right from day one? But why are they having to do it tough? After Eva's birth, I became part of a community of parents of children with special needs from around the world. As we shared our stories, I wondered, where was the formal support? Why aren't we helping these parents more? Why aren't we allowing them time to process their grief over having to throw away the standard parenting manuals for the special needs life?

There was no parenting manual that could prepare me for Eva.

That regret I have for the time we spent apart will always be with me. But I also remind myself that those two months meant I was the best mother I could be to her for the time I did have her with me. I was strong and confident and happy.

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Toraleistripe · 22/02/2016 17:17

That was a lovely and moving post. Eva sounds amazing and so do you.