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little miss lucia's lymphoedema life

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Over thinking…everything

February 28, 2014 by Jo-Ann Greene 2 Comments

Overthinkingeverything

Anyone who has children will understand what I mean when I say you worry – about everything. All the time. At different stages of their life your worrying changes. When they are babies you worry that they aren’t sitting/crawling/walking/talking/sleeping/singing/dancing/eating enough/properly/at the right time etc.

When they start school you worry about them making friends/not making friends/keeping up with school work/being happy/being tired/getting sick…the lists go on.

I am a natural worrier and automatically hit the panic stations before realising there was no need and pulling myself back to reality. My mind tends to go into overdrive and I do this with both Max and Lucia.

Big Boy Max

Max started ‘big school’ in September and is in Primary 1 – and I found it to be one of the most worrying and stressful times I have ever encountered in parenting. The first few days he went into school happy, until the novelty wore off for him. Then we endured weeks of him crying and screaming and literally having him prised off me in hysterics shouting ‘nooooo mummy!’ And I wanted to scoop him up and say, ‘it’s ok sweetie, let’s go home and cuddle’. This was my baby boy and it felt like my heart was breaking every morning.

Now, of course, he loves school, has his little ‘gang’ and happily skips in – sometimes forgetting to kiss mummy – which also feels like my heart is breaking but in a slightly different way.

Lucia – early worries

With Lucia  – not yet two years old – I am already finding myself worrying about what may happen five, ten, even 20 years down the line. When she was just a baby I worried about her learning to walk – would the Lymphoedema hold her back? I worried about her falling and cutting herself and getting a horrible infection that would land her in hospital on IV antibiotics.

I worried that the pressure of her weight on her right foot would hurt her and she would be in pain. I worried it would push the fluid up into her leg and make her leg bigger and the pressure painful.

But so far she has been mostly fine! The worries are still there and the odd time she has took a tumble I neurotically check for injuries but fingers crossed this hasn’t happened yet.

School worries

I worry about her starting school and being bullied for wearing her compression tights or being that little bit different physically. I worry about her teachers not understanding the condition and not looking after her properly. I worry about her hurting herself in school and not getting the attention she needs.

I worry that as she gets older she will start to resent her condition – which is inevitable. That she will hate the tights. That she won’t wear them. That she won’t let us do her Manual Lymphatic Drainage. That her condition will deteriorate because we can’t do what we need to do to help maintain it.

I worry she won’t want to go to school, that she won’t want to leave the house – that she will feel different from everyone else.

I worry that she will be angry at us. I worry that she will blame us. I worry that I won’t know how to deal with that. I worry that I won’t be able to reassure her.

Life and love

I worry that she won’t be able to wear nice shoes like the other girls and that the style of clothes when she is a teenager won’t be compatible with her Lymphoedema. I pray that wide legged trousers will be back in style by then and that short skirts are shunned in favour of maxi skirts.

I worry that she won’t meet the right person who will love her for who she is. I worry she will think twice about having children in case she thinks she may pass on the condition – even though we still don’t know why she has it or if it will even be possible to pass it on.

Mostly though I worry about the progression of the condition a lot. I have read so many stories that completely freak me out. No one knows how slow or fast the condition will progress – it is very much a day-by-day, week-by-week, month-by-month situation. And thankfully to date she hasn’t suffered much pain – and it makes my heart ache to think that she probably will in the future.

Beautiful babies

Ultimately, like any parent, I want my children to be loved for the wonderful people they are. As much as I don’t want Lucia’s Lymphoedema to be a factor in who she is, I have to accept that it IS part of her – though as a family we will ensure it is by no means a defining part of her.

At the same time, it is the part that I know is already helping to shape both her and Max’s beautiful personalities. It is the part that will make them both kind and caring people who will accept others for who they are – and that makes me the proudest mummy in the world.

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Comments

  1. Monique says

    March 18, 2014 at 8:57 pm

    Jo-Ann, thank you for sharing these tender thoughts you have regarding your children. I can definitely relate to your worry and anxiety concerning your children’s future and happiness. Through my struggles with primary lymphedema, which started nearly 15 years ago when I was 20, I have learned that life does not have to be perfect in order for it to be happy. You can’t control everything that happens to you or your family, however you can control how you react to what you and your family are faced with. Challenges bring growth and make us better people if we choose to let them. Life will not be easy for your little girl. It’s not easy for any of us, but you can teach your little girl by word and example how to fearlessly face the challenges that she must overcome. Her strength will make her even more beautiful than she already is, and that beauty and strength will draw great people to her. She will be an inspiration to others. Success is never giving up or giving in to despair. Happiness surely comes when we push forward despite the challenges. As your daughter grows up through her adolescence, her teenage years and her adulthood, please let her know that she is strong, capable and loved. As long as she believes that, she will be happy and courageous. Your children are precious and I know that they are blessed to have you as their mother.

    Monique

    Reply
    • Jo-Ann Greene says

      March 18, 2014 at 10:02 pm

      Hi Monique, thank you so much for taking the time to write such a beautiful message. You are so right – you can’t control everything in life (and I am bit of a control freak at times!) and everyone has their own challenges and issues to deal with. We truly count our blessings with our beautiful little family and we are perfect in our own wee way 🙂 Of course we wish Lucia didn’t have Lymphoedema and if we could take it from her we would. But she is an amazing little lady, she takes everyday in her stride and by no means lets her condition hold her back. She is full of confidence, love and joy and her feisty little personality will stand her in good stead as she grows up along with tons of love and support from all of us. I really appreciate you getting in touch x

      Reply

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a little bit about us

Hello and welcome to Little Miss Lucia’s Lymphoedema Life blog! Lucia is my beautiful daughter, born on 12/03/12 with all ten fingers and all ten toes. However, her 10 perfect toes were puffy, as were her feet and legs. After months of tests and hospital appointments she was finally diagnosed with Primary Lymphoedema. Read More

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