Guest post: "No parenting manual could prepare me for Eva"
In a moving post written a year after her daughter's death, Tessa Prebble reflects on how we support parents whose children have special needs
The One in a Million Baby
Posted on: Mon 22-Feb-16 16:20:03
(37 comments )
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.
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 felt like a cruel blow.
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.
By Tessa Prebble
That was a lovely and moving post. Eva sounds amazing and so do you.
Wonderful post. The photograph of you and Eva smiling is just beautiful.
I'm so sorry for your loss.
I'm so sorry you lost your beautiful daughter.
Someone must be cutting onions.
It takes great strength to admit you need help, op. You got help and were as strong as you had to be for Eva.
So sorry for the loss of your beautiful Eva. There is nothing to compare with the indescribable pain of losing a child no matter what age they are or how they passed. Take care of yourself
What a gorgeous little person - she will have felt your love and I hope your happy memories will always sustain you. X
How strong you are
You were a wonderful mother to Eva.
Hi Tessa, I read your blog a while ago and just want to tell you how inspiring I found it.
Your writing really explains so well the depth of your love and care for Eva . I work as a midwife and writing like yours truly helps me to support parents facing similar times, thank you x
Tessa, you had alot of losses all at once. The daughter you thought you'd have, your marriage, your job, your home. But you were brave and kind to yourself and made yourself well enough to spend the rest of Eva's life with her. I think that's inspiring and wonderful you know I'm so sorry for you but so proud you managed it too xxx
I mean, I'm so sorry for you that Eva died she sounded lovely x
Thankyou for sharing the special time you had with you gorgeous little girl.
As a parent of 2 ds with SN your post is very relevant. My boys are physically very well butvthey both are developing complex mental health needs.
There are days, even 8 years after releasing my oldest ds has SN i feel like totally overwhelmed & exhausted by the momentous task of raising him & now my 7 yr old ds.
Do not feel any guilt. Keep being positive. You have the ability to understand & appreciate the difficulties faced by parents of SN dc.
Very best of luck for the future.
So sorry for the loss of your beautiful baby girl You sound like a lovely person who did all you could in such a difficult situation. I can't imagine how tough it must have been, and still is no doubt.
Please don't feel guilty about the time apart, it was necessary and I'm sure she forgave you instantly, like children do. Sending you strength, in my thoughts.
Being a good parent isn't about time spent in sole charge. Being a good parent is far more complicated that that. I don't think you should regret those 8 weeks. That was part of your journey together and you were just as much a good parent to Eva then as you were when she was in your home with you or in hospital.
I'm very sorry for your loss.
Desperately sad given how you'd turned it around and were a happy team of two. Can't imagine how hard your early decisions must have been and how sad it was to lose your lovely little girl. Lovely pic of the two of you together and in her very short life, I'm glad you got to see and experience smiles and laughter together X
Thank you for sharing your story - the messages are really important and you made such brave decisions. Sorry for your loss of such a beautiful girl. The photo really shows what joy you brought each other.
I followed Tessa's blog from the beginning. You have amazed me at every step with your strength, and provided Eva with so, so many happy times. That infectious smile of hers is proof enough of that. Words will never be enough to express how sorry I am for your loss
I'm so sorry you lost your lovely daughter. I have to say that your partner is a prick of the highest order. It's one thing to break up with you but to make you and your baby homeless is unforgiveable.
Thank you for sharing this. You are so right in your words about the parenting manual and brave for all you've gone through.
I'm crying as I write this trying to imagine the grief you must feel and I hope you continue to have lots of special people around you to support you and for you to talk about Eva with.. But oh what love your daughter will have known and she was so lucky to have such a strong and loving mummy xx
What a beautiful post. I'm so sorry for your loss.
I'm sorry that you missed out on those weeks but you acted out of love, pure love and the desire for Eva to have the best possible care.
No-one is 'built' to deal with a child who has extra needs, heck, no-one is 'built' to deal with babies full stop. It is a challenge every day (and it doesn't stop when they're teens/adults). You were acutely aware of the challenges your beautiful Eva would bring but you chose to give her what you thought was the best chance in life. The fact that you dealt with it head-on and made huge steps to prepare yourself for a life with her in it speaks volumes.
You were blessed to have each other.
Eva sounds so very special, you write about her so eloquently, it feel I can picture her perfectly. A little treasure of a girl.
Warmest regards to you
I've just followed the link to your blog and read a few posts. I've had to stop reading for now (too many tears) but I'm so glad I've found it. The similarities to my own story makes your own very hard to read but I know that I'm going to find it inspirational from the brief parts I've read. Thank you.
I'm very lucky that my lo is still with me, fighting and struggling and I'm going to make the most of every day I have with her, however long or short that is.
I'm so sorry for your loss.
Had to go and check on the dds before I could properly read this. Incredibly brace and honest post about sn parenting. Really hoping there are new pastures for the op x