Trigger warning – if you have lost a child or struggling with fertility, this post might not be for you xx
Grief affects everyone at some point in their life. Grief over the loss of a loved one, the grief over the loss of a relationship and we can grieve over the loss of our own identity, especially when we become Mums.
I have lived a very sheltered life in terms of grief. Sure there has been the ending of relationships, loss of job opportunities and some bloody tough curveballs but I don’t think I have ever really grieved until the last few months. .
I have grieved for what I thought life would look like when we brought our final piece of our family puzzle home, Miss Pippa. I knew that having a pre-teen stepdaughter and three kids under four was going to be tough. Lack of sleep, learning a new baby, hormones and living with a toddler that put the terrible in terrible twos; but nothing could have prepared me for the last 15 months (and counting).
I have already spoken in detail about our diagnostic journey with Pippa which you can read about here. It’s so hard to explain but when you are knee deep in that fiery hell of trying to work out what exactly is wrong with your baby, you don’t have the opportunity or even the capacity to reflect and I feel like now I finally have that space.
Seeing that Pippa was due in November I thought that by the time Autumn/Winter/Spring rolled around we would resume our usual camping trips. Sure camping with a baby can have its challenges but at least at four months old they still can’t move. Instead we had oxygen bottles, electric feeding pumps and a relentless chronic wet cough. These things don’t really align all that well with camping.
Sleep is always a contentious issue when talking with Mum’s but regardless of the method, I had imagined it would be safe for my baby to sleep in her own room in her cot from sixish months old. I had always followed “safe” sleep practices with my other two which just makes me laugh now. Yes let’s make sure your blanket is tucked in so it can’t go over your face but here are some oxygen tubes and an overnight feed pump which can easily wrap around your neck when you roll over.
Knowing that Miss Pippa was our final baby, I thought she would “learn” from a young age that sometimes, she would have to wait and god forbid, she may even enjoy time not being held. This has been one of the biggest and most frustrating challenges of this tiny human. When you feel like crap, who do you want? Mum. When you are in hospital for weeks on end, who is the one person you see all the time? Mum. When you can’t sleep because you can’t breathe or nurses come in to do another set of obs, who pats your bum and sings you back to sleep? Mum. Who is there to comfort you when the people with scary masks do things that make you uncomfortable? Mum. You get my point. I feel constantly torn between my girls and I am not going to lie, 8/10 times Pippa takes priority. I am always holding her. I just hope with every ounce of my being that my big girls won’t resent me for it as they get older.
There are times I grieve for my career, with all of Pippa’s appointments, there is no way I can possibly work full time or commit to further study. I grieve for the loss of alone time with my husband. Pippa still needs to be held to sleep most nights and has shared our bed for the better part of 15 months, we are yet to have a night of just the two of us since she was born. I grieve for the fact that I can’t give my baby something as simple as a drink of water during a coughing fit as she will aspirate and it sends us back to hospital.
But what did we get? Joy. Happiness. Laughter. Innocence. Humour and a strength in all of us that we didn’t know existed. Pippa has come through everything thrown at her with a great big smile on her gorgeous face. I mean look at the photo! She has this aura around her that draws people in, it’s something I can’t explain. She is the smallest member of our household but boy does she run the show. She is the loudest out of all my girls and even though she has limited speech boy can she tell us what she wants (or doesn’t more to the point).
So to the person reading this who thinks I sound ungrateful, I get it, I really do. There are women who would kill to be in my situation and I know there are families with REALLY sick little humans and my heart bleeds for them.
But this is my story. If a fellow special needs/hospital/medical mum reads this and thinks THANK GOD I am not the only one who feels this way, that’s all I want. To reduce that sense of isolation and loneliness that can come with having a non-typically developing child. To know there is someone out there that you say f*ck this hard and know you won’t be judged or deemed ungrateful.
I wouldn’t change Pippa for the world, she truly is a gift and I feel privileged that I get to be her Mum. However that doesn’t mean to say that this life is not the one I imagined 15 months ago and every now and then, it’s ok to not be ok with the cards you got dealt.
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