Most expectant parents have their worries about the health of their child. Usually from the moment that they see that little blue line. There is so much information out there that although is useful and in some cases life saving can also spiral a parents natural anxieties to a new level. For me this was no different. I would google a standard pregnancy symptom and end up on scary blog threads and convince myself something was wrong!
But
surprisingly I didn’t think about one thing; what if my baby had the same
condition as me?
I had talked about it theoretically before we were even thinking about having a baby. I would brush off the theoretical situation stating that if baby was born ‘like me’ I knew they would be absolutely fine, they would hit all their milestones and lead a normal life. So what’s the problem?!
Then we go
into the ultrasound room for our 12 week scan, I lay down and the technician
pulls up this image of baby and says “there’s hand one, and there’s hand two”.
Those 7 words turned me from fierce mama bear to a tearful puddle.
The Scan image showing both of Noah’s hands
Yes, no matter
what baby would have been more than ok, he would have lived a full and happy
‘normal’ life if he hadn’t had both hands – because I am!
But I know the
struggles, the stares, the grit and determination it takes to grow up in a
world where differences were unsightly and disabled had various negative
connotations.
Society in the
early 90’s was less than open to physical differences and although I am
confident that society has improved massively since then hearing those
words lifted a weight I didn’t even know was there off of my chest.
This is an emotive topic and I am conscious that if I word this incorrectly it might upset someone. Please know this is not my intention. What I am trying to say is that I have always seen it from the child’s side because I have never been a parent! I have spent my life campaigning for what I can do and dealing with others assumptions. I had not had to look at an ultrasound and listen to a little heartbeat and prey that this little dream would come to fruition until now.
It is hard for me to acknowledge the emotions that this
situation brought up let alone share them as I have been that child and defined
by my diagnosis. But to know that this little untouched life was going to be simpler, that he
could be a child a little longer, that he could do the little things that I took
longer to learn with ease meant more to me than I am comfortable acknowledging.
I wanted to
put this out there for the parents who have received a diagnosis for any rare
disease including Dysmelia/Limb differences either before or after birth and
had to ride the roller coaster of emotions that I can only imagine. Firstly its
completely normal and secondly your child has got this!
A few months ago I did a Q&A with Ralf from Thoughts On Difference. The Below was featured on his IG account.
Q: When you think about your self perception of your body. Which percentage of it does your right arm have and how much is this percentage influenced by society?
A: I would say that if it wasn’t for societies perception
of difference I would have had an easier transition to body positivity but this
is not a social issue exclusive to disability. I have never really identified
with my “disability”. I have always found my own way to carry out tasks and
they become second nature meaning I forget that I am doing them differently.
Even my family and friends say that they forget about my arm because it doesn’t
stop me doing anything. The only time I realise that I have “one hand” is when
I catch people staring when I’m out in public or I’m told that I “can’t do
that” or “will find that hard”, though this is something I have noticed less
and less with age.
Q: Has your disability been a theme when thinking or discussing about planning
life with your partner?
A: Not for him. I have always had my hang ups about
how society would see me as a bride and a mum but for him it’s not even part of
the discussion. He has never seen my arm as a disability, always reminds me
that I can do anything I put my mind to and if I find a task hard he will help
me find a way. In fact he is one of the people who tells me he forgets that I
am seen as “disabled”.
Q: You have a tattoo on your right arm. Was it a concrete decision to put it on
that arm and not on the left?
A: Definitely, once I hit my 20’s I began to accept
myself as I was born and chose to stop seeing the stares from the public I
wanted to celebrate the end of a long journey. I wanted to decorate my
difference to own it, celebrate it for myself and it also gives the general
public something to look at when they see my arm. I didn’t expect it but it has
been a positive way for people to start a discussion about my arm with “oh, I
love your tattoo” rather than it being the elephant in the room.
Q: When you see yourself on a picture, do you become more aware of your limb
difference than you are in your
everyday life? And would you decribe this awareness as more positive or
negative?
A: This has been a constant battle. In my teen years all I wanted to do was blend into the crowd and with a limb difference this is a hard task. So I used to hide it in pictures and if I hadn’t managed to do it well I would find it very uncomfortable to look at. This continued through until very recently. When we booked our wedding photographer I asked her to try and not take pictures with my arm in. she rightly responded by telling me that she would capture the day as it happens, in the moment. When I received the wedding gallery it took me a few looks through before I was comfortable looking at them but I eventually began to love them. Even if they show my difference they captured me in my element and surrounded by love. From then on I have slowly stopped trying to hide my arm in pictures and at our most recent photoshoot as a family it didn’t even cross my mind.
Q: Altough you are born with your limb difference, do you sometimes feel
physically incomplete (not compared to society’s standards, just by yourself)?
A: I genuinely feel that I have 2 hands a majority of the
time. I have to really think about it to comprehend and acknowledge that I’m
seen to have something “missing”. I have all the same sensations on both my
hand and the end of my right arm. As my arm is essentially an underdeveloped
hand I have 5 fingers, wrist movement and I have grasping motion so it feels no
different. Although I cannot compare this feeling to having 2 “normal” hands I
feel like I was born whole and the way I was supposed to be.
Q: When you meet people for the first time as a mother, how often do they react to you as a mother with a disability and in which way they do react?
A: I feel like I can see some peoples thought
process of “how does she do A,B,C…” but I just take peace in the fact that as
they see Noah and I interact they will realise that my arm plays no factor in
my ability as a mother.
Q: When you meet a person with limb difference, do you feel more connected to her/him in a certain way than to other persons?
A: Yes! Though this is very rare in the UK, I always feel that others that have grown up with a limb difference understand you on a different level.
Q: Normally when people meet they reach their right hand, does this cause sometimes confusion, when you greet people by reaching hands?
A: Hand shaking has always been a source of anxiety for me! I remember the first time I experienced the awkward moment of presenting my left hand to someone’s right and having to give an awkward upside-down handshake. I was only 5 years old and helping give a tour of my school to a governor and I remember even then thinking “wow, that’s awkward”! unfortunately the position I now work in requires a lot of these awkward moments so I have started trying to get my left hand out there first In the hope that the other person will adapt but this doesn’t happen often. so I am just having to embrace it and not let it bother me.
Q: What would you say you have learned or experienced, what you wouldn’t, if
you had no limb difference?
A: I feel like my journey has developed a resilience and strength within me that I perhaps wouldn’t have had if I hadn’t been born with my arm. It has taught me to persevere with tasks even if they are hard or seem impossible. It has taught me to ignore societies standards of “perfect” or “able” and defy others expectations rather than aiming to blend into the crowd.
Q: Since Nemo we know the term “lucky fin”, which is also name giving for the @luckyfinproject. Do you or your parents, friends have or had a special name for your arm?
A: Mostly I just call it my “arm” but we used to call it my “little arm”. when I was at school me and my friends used to name my fingers for some reason! Unfortunately I can’t remember what we called them now.
Q: Do you have any final words?
A: I just hope that through sharing stories like mine parents starting their journey with a child with a limb difference can see that it will not hold them back at all, it won’t impact their development or stop them from hitting milestones but it will teach them greater problem solving skills and give them a stronger sense of self. I hope that others like me will be brave enough to continue sharing their stories. Slowly but surely this will change societies narrative around difference and ability for future generations.
Does anyone else think that society needs to make its mind up about its approach to breastfeeding? after almost a year of breastfeeding I think someone needs to say something!
As a first time mum who wanted to give breastfeeding a go I got very caught up trying to please everyone when it came to feeding rather than focusing on just my sons needs.
I mean everyone says “breast is best” but when you are feeding in public you get disapproving or uncomfortable looks. They say you should “cover up”, that its “not a spectators sport” or I have even heard that some people have been told to “go to the toilets”!
I was very
anxious about my ability to feed in public discreetly due to my limb
difference. So anxious that I am ashamed to say I almost considered taking my
new born to the toilet for a feed while out. Looking back I want to shout at
myself for how much focus I put on strangers wants over my son’s needs. I used
to express before outings and in the early days even pump before visitors came
to meet Noah at home (We were still figuring out our latch and hold so covering
him up or hiding my boob was impossible). This resulted in a huge over
production of milk which was very uncomfortable for me! For anyone who has seen
The Hangover “THAT” scene was my reality…
** But its
important to say this is not just about breastfeeding. When I used to express
and bottle feed Noah I then felt like I was being judged for NOT breastfeeding
as there is also a stigma around formula. I then felt I needed to explain that
I was feeding him breastmilk.
Then one day I was caught short while in town and had to bite the bullet. I was so anxious. Was someone about to shout abuse at me? Stare at me and my baby? Leave the coffee shop in disgust? I had read all sorts of horror stories of people having bad experiences. But Noah needed food and I was over pandering to strangers needs.
I put a muslin
over my shoulder and let him latch.
He fed
happily.
And the world didn’t stop. (yes, I got looks but they were of support rather than disgust).
A sense of freedom hit me in that moment. I didn’t have to hide, I didn’t have to cut trips short to go back to the car and feed or excessively pump before my day starts. I got myself some huge muslins from Mama Rules (they are so cute!) and I never let societies very confused attitude towards breastfeeding get in the way of our days out again!
Occasionally I get looks but I hardly notice them anymore. I feel like by feeding in public I am participating in some kind of silent activism. The more its seen the more normalised it becomes. The more women will feel empowered to challenge those who feel they have the right to comment on how they choose to feed their child. Everyone’s situation is different and it’s the mothers and babies needs that are important not societies complicated relationship with breasts.
I wish I could
go back and tell myself this 11 months ago.
If you are feeling the way I did at the start of our breastfeeding journey, please remember this – A fed baby is a happy baby! Society will just have to get over itself!
IAmPossible Mama 