A round-up to the present day.
The day Lily was released from Special Care to stay with me in the ward was the day Oxford had an earthquake! I remember drifting off and I noticed that the television bolted to the wall was swaying, and the bed was shaking. I thought I was having a funny turn and just went to sleep, only to wake up in the morning to be told that it was an earthquake. I wondered if it was a bad omen suggesting I was going to have a shaky entry into motherhood.
The day Lily was discharged from hospital I was warned that she would have some developmental delay because of the extent of her brain damage, but they couldn't tell me what she would or would not be able to do. I just wanted her home. I do not have to vocabulary to explain how much I hate hospitals, although it was most likely the only place I could get away with my hygiene OCD.
Lily was a well behaved newborn. She fed well, for the first month she had her last feed at 11pm, woke up at 4am for a feed, then up at 8 for breakfast. At 5 weeks she slept through the night.
She had no noticeable problems apart from colic, but I couldn't complain. The health visitor noticed that she was lacking muscle tone, and that she was severely floppy. I HATED the health visitor. It felt like I was always being watched, was always being asked questions like I was expected to fuck something up.
The truth was that I was sitting on a massive problem, and was lying through my teeth to everyone.
By 8 weeks old, I still hadn't bonded with Lily. I didn't even feel like a mum. I had my duty to make sure Lily was kept healthy and happy, and that was it. I would watch other mums, and I could see the love in their eyes for their children. It made me sick. What was wrong with me?
I'm not going into details about the relationship with Lily's Dad, but that broke down during the end of the pregnancy.
I felt completely alone, I was caring for a baby I couldn't bond with, and I had no idea what kind of future she would have.
The health visitor gave me a questionnaire to fill out asking me "How I was feeling." It was an obvious attempt to try to detect any symptoms of postnatal depression. In complete fear of having Lily taken away from me, I lied and said everything was peachy.
I started finding it difficult to get up in the morning. I didn't want to wake up, I didn't want to eat, I didn't even want to leave the house in case people started asking me about Lily, and how she still couldn't hold her head up by herself at 4 months old. I'd have to say, "I don't know why". I felt like everything was my fault, and I was ashamed of myself. I couldn't even birth a child without extensive medical intervention.
At 6 months old, a physiotherapist was called in to help Lily with her physical problems. She was finally able to sit up at 10 months old. (In contrast, Leah walked at 10 months old!)
So time went by, and we plodded along.
More issues with Lily's development arose as she got older. By 2 years old, Lily still couldn't walk. She couldn't even stand up or crawl. She would have physio every fortnight.
Lily's speech was very limited. By 2 years old she would only mutter a few words, so a speech therapist saw her every 2 weeks.
Leah arrived when Lily was just over 2.
I felt really guilty when Leah came along. I had such a strong bond with Leah from the moment she was born. Leah ate well, slept through the night at 8 weeks old, never had colic, and was generally an early developer. I could feel my chest ache out of pride when Leah would walk up to me and steal my sandwich.
As a result of the guilt, I spent more time with Lily than I did with Leah to try and compensate.
We did lots of speech exercises together, which she enjoyed, and physio exercises which she despised, but I had to play doctor and push her as hard as she would let me.
The turning point in our relationship came when Lily was 2 1/4 and had to have an MRI scan on her brain under general anaesthetic. The doctors needed to see how much damage to her brain was present and if it could be attributing to her speech delay.
I walked her into the anaesthetist's room feeling very little fear. Maybe I was putting on a brave face? I was annoyed at myself that I could fear such an everyday procedure.
I held Lily as she was put to sleep. One second she was awake and stiff. The next second she was heavy and limp, with her eyes half open, and I put her onto the bed. The last 2 years flashed before my eyes to the moment of her birth where she was heavy, limp, and her eyes were open. I couldn't hold it in any longer.
I burst into tears as I tried to leave the room as fast as I could. It wasn't that I didn't love her, I did. I just didn't want to admit I did. I feared for her future every day. I thought if I could distance myself from her, then it wouldn't hurt as much.
That day I admitted I loved her. As Lily was wheeled into the ward still fast asleep, I looked at her innocent face and hoped she knew I loved her.
The results of the MRI was a miracle. Lily's brain had completely regenerated.
... more to come!
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