As a parent of a child with multiple special needs its tough to not have your typical Mummy surrounding who can relate to you and vice versa. People who can understand that what seems like an ordinary family on the outside, there’s a lot going on behind the scenes that nobody sees.
Due to Olivia’s neurological disorder she has medical & development issues. Requiring bowel surgery, Countless MRI’s, Olivia Sees numerous medical professionals and has required Countless tests. We’ve been in and out of Hospital’s and Drs appointments more times than I care to remember. She also has severe development delays and requires speech therapy, physical therapy, occupational therapy.
It’s incredibly challenging for obvious reasons and it becomes a lonely world. I have always had a small intimate group of friends. Over the years my group has stayed pretty much the same, true friends who I feel I could share my deepest secrets and concerns with. Most of my close friends have children, work full time or do both they don’t, however, have the same circumstances I do. As a special needs parent I don’t often share my feelings on this aspect of my life even to close friends and family fearing what may leave my mouth or how it’s received.
What I wish I could tell you.
I can’t help but feel a pang of jealousy towards your child. This is hard to admit because I’m so incredibly proud of what my daughter has overcome & accomplished. Olivia has made me a better person and probably a better parent. She amazes me everyday and no matter the set back she fights through it. I try not to compare my child to yours but it’s easier said than done. Feelings of enviousness will most likely always pop up but I always push them aside because it’s not fair to Olivia, to your child or myself.
Some days I feel like we’re the only family in the universe going through what we are. Of course, I know there are others I see them at hospital appointments, I see other Mothers when I go to my daughter’s nursery. I read about them online yet It doesn’t stop those feelings of loneliness.
I wish I had nearby friends where I didn’t have to explain what Periventricular Leukomalacia means. Know what an EEG means, Know what peg feeds are. Understand what were going through on a day to day basis. I want friends, I need friends who are relatable.
I’m scared, on a daily basis there are so many questions and decisions that will inevitably improve Olivia’s life but also can degrade it. Was that eye twitch an oncoming seizure? Has she spent enough time sitting in her equipment? Has she eaten enough to fully sustain her health? The list is ongoing. Constantly worrying about adaptions to the house and equipment she requires which is so incredibly expensive of course we’re lucky to have the NHS however funding is still needed & it can take months sometimes years to be “allowed” a piece of equipment. We simply don’t have £3000 for her wheelchair or £1000 for a ppod, £2000 Leckey chair. £75 per box of specialised formula, Special needs equipment is just so much more expensive than it should be and it’s worrying.
I’m constantly worrying about what will happen to our little girl when we’re no longer around. Most parents don’t have to think about who will care for their child but the truth is Olivia will almost certainly need care her entire life.
Fear of the unknown is unsettling.
I’m very good at hiding things. It took a lot for me to start this blog as I’m an incredibly private person. I don’t scream and shout my feelings from the rooftops simply because I don’t want to burden people with my problems. I never really wanted people to know how terrified I am or how difficult our life can be. I’m not even sure I still want people to know! It’s confusing having such conflicting emotions.
Each day passes and every new day is a fresh start. I see how far my daughter has come and I am incredibly grateful in more ways than anybody could understand. I myself have come so far and I have learned a lot along the way.
But there are still those days….
Some days I seem like I am capable, I am strong, but I’m not. Some days I sit around crying when nobody is looking. That is exactly why I created this blog. My little online corner, place I can vent and share what’s really going on with us. Most importantly to raise awareness and help other people.
My last thing I want to tell you,
I am human! I have been pushed beyond my limits more times than one. I’m still a Mother just like you, I get tired from sleepless nights, I get cranky and irritated. I still have my own dreams and aspirations. Some days i simply don’t want to talk about my daughter at that given moment it’s me not you, sometimes it can be hard discussing Olivia.
So what can you do? What’s the point in this post? Simply to understand us, not be offended if I’ve ever made you feel uncomfortable, don’t take it personally if I’m not a jolly person. Understand that today we might be having a rough day. The stress and strain of it all may have taken its toll.