Being A Disabled Parent…

I thought I would explain a bit about daily life with a special needs child, along with caring for Penelope and making sure she isn’t getting into too much trouble.

Amelia has 6 tube feeds a day lasting over 1 hour and 45 minutes, as we need to feed her at a slow rate so that her little body can handle it. She then has two types of medication that are administered via her tube 3 times a day. Along with this we have to make sure she is not choking or aspirating on her feeds and secretions. This means that while she is feeding we need to be near her to check all is ok (as you can imagine this is hard when you have a very active toddler).

Managing a disabled child and a toddler is very hard work, but so rewarding. Watching their relationship grow is just beautiful. The way that they look at each other is just pure love. Amelia’s eyes light up when Penelope is around and Penelope cannot do anything without showing Amelia first. They want to be together all the time and it’s truly the most beautiful thing I have ever seen. As much as I try to be in the moment with them it’s hard as I remember that one day they wont be together.

For now I enjoy these wonderful moments and try to do as much to make them special for both of the girls.

So along with feeding and medication I also spend a lot of time on the phone organising appointments, medications, prescriptions, and home visits. We are part of two hospitals and Keech. Amelia has 7 different types of specialist care so it’s quite a lot of people that I need to remember. Along with being Amelia’s mummy I am also her nurse, physio and carer. Since having Amelia I have learnt so much and I am far more capable than I ever believed I would have been. If I wasn’t organised before I definitely am now! It’s a full time job and it’s hard work but it’s become my normal. 

Nurses become family and doctors become friends, you spend a lot of time talking to these amazing people they get to know you and your family, and they want what it best.

Honestly, if you had told me ten years ago, a young hopeful actress who just left drama school, that I would be administrating NG feeds and medication for a child who is severely disabled I would have looked at you with fear and complete shock, and then most likely laughed in a nervous way. I was always terrified of having a disabled child. Little did I know that it would be the making of me. Our whole lives were turned upside down. We thought we were going to have this perfect life with our two girls running around playing frozen together. We can’t have that but the life we do have is amazing. Of course if I could change it so Amelia could be here forever then I would, but I wouldn’t change the life we have now. Once you accept that this is the journey you are now on it becomes a wonderful life. Amelia has changed us all for the better. She has taught us empathy, hope and more love than we ever knew possible.

One of the hardest parts of being a special needs parent and family is the loneliness and seclusion you can feel, especially this year. Its hard to explain. I think sometimes people have a stigma attached to parents like me they think that we are constantly angry at the world and spend most days in tears. Don’t get me wrong we feel this all the time, but we have learnt to  control it. If I spent most of my days angry and crying I wouldn’t be giving Amelia the best of me. Yes there are times when Paul and I have bad days, but we know to just accept it and try to muddle through the best we can. We want to give our girls the best life we possibly can. We have to enjoy the moments now and make the memories, so we have them in the future.

There are also some extremely difficult sides of being a special needs parent, especially when you encounter medical professionals who do not share empathy or compassion and just see you as the ‘next job’. I recently had to encounter an awful surgery consultation with a very rude and abrupt surgeon. In Amelia’s short life I have met more medical professionals than I ever thought possible. As a family we have had to endure some extremely tough meetings and discussions, but every nurse, doctor, consultant, and specialist has always treated us in the most caring and empathetic manner, well up until a few weeks ago.

Now I have never been one to complain, I have always just got on with everything for an easy life. However this time I felt like I would be doing my daughter an injustice if I did not speak up.
Amelia has a special care plan added to her record, most palliative children have this in place. This means that everyone has the same understanding and parents (such as me) do not have to go into detail about end of life care, and why we have these decisions in place. This surgeon decided not to read and take this into account. Instead he decided to ask these questions before I even had a chance to sit down. I was alone, as only one parent can be in the room, being asked certain questions about Amelia’s end of life plan and I went into a meltdown. I was trying my hardest not to cry, I was angry, hurt, and just upset. I didn’t listen to anything this surgeon said to me, to be honest I was trying my hardest not to call him something rude. I basically ran out of that room and burst into tears with the nurse. I left there, upset, disappointed, angry and shocked.

Its always the way when you look back on a situation like that where you start to think of what you should have said and done differently. I found myself getting even more worked up. So I went home that night and had a few wines and decided I needed to complain. I did and nothing really happened. To be honest, I didn’t want to waste my energy on this person who really didn’t care. So we changed Amelia’s consultant and will move forward. I have learnt not to dwell on things that take up too much negative energy in your life, why waste my time when I could be doing other things and enjoying life.

This is one of the aspects of special needs parenting that I really dislike, but I have learnt to deal with it. I remember when Amelia first got her diagnosis, everyone said ‘you will know her and her condition more than anyone’ and its so true. I know everything about Amelia, her cues, her noises, certain movements. Like any mother with their child, but with Amelia its different. Its sometimes hard to watch anyone do something for her as we have our own groove. Now I notice that Penelope is trying to do more for Amelia and its just the sweetest thing to watch.

So next time you see a special needs parent trying to tube feed and master medication on the go whilst trying to make an appointment, or trying to handle a meltdown, maybe try and help them. A smile and a ‘can I help in anyway’ really goes far. We don’t want sympathy or ‘looks like you’ve got your hands full’. We already know all of that and have mastered the art of looking after a medically fragile child. We just want our children to be treated with the respect and love they deserve.