just give me today…

by

Just give me one day for irrationality, one day to shake my fist at the sky and declare it is not fair. Just one day before I pick myself up, brush myself off and simply get on with things.

BB has a dislocated hip, she has what is commonly known as Hip Dysplasia (ddh). She needs surgery and a cast and in all honesty she needs a bloody break. Last year was spent happily growing from baby to toddler but broken up with MRI’s, EEG’s and hospital stays. As her epilepsy started to settle it seems my beautiful baby misses the ward and has found a way to get back on it.

Its curable, it involves more anaesthetic, complicated surgery, time in hospital and a half body cast. But it is curable, many mums with poorly kids would trade their all to be able to say that.

But give me just today, to sob for my little beauty who just learnt to walk and soon will have that taken away. Let me wallow in a bit of “why us” and let me chastise myself for taking so long to see there was a problem.

My beautiful girl, she giggles when you touch her side, she kisses with a perfect pout, she signs please when she smells chocolate and she loves to torture her older brother and sister. She can say dog, baby, mummy and daddy, she can climb stairs, she can give you a cracking right hook. She can light up my world with a simple toothy grin.

She has epilepsy, she has hip dysplasia.

She is defined by neither and she copes perfectly with both.

Just give me today for irrationality and tomorrow I will match her strength.

92 thoughts on “just give me today…”

  2. Wow, poor girl, she has had a lot to go through and I wish her well with her journey over the coming months and hope it is as pain free as possible.

    I understand what you mean about other parents wishing that is all their child suffered from, but as a parent I also understand you’re wishing this hadn’t happened to your precious angel.

    By all means take today to shout, scream, cry or whatever will help you through the day, I think you’re being particularly unselfish, as I think I would have asked for at least a week!

    There is no doubt you love your daughter, your description of her brings a smile to my face, especially the ‘right hook’ line and I look forward to your future posts telling us how well she copes and how she makes light of the situation.

    In the meantime have a ‘virtual’ hug and I hope her problems get lighter.

  3. Ohh Jane, so sorry to hear that but like you say there is hope and it can be fixed but as for today of course you can take time to nurse yoru wounds. Being a Mum hurts like nothing else.

    Mich x

  4. Really sorry to hear this, and hope all goes as well as it can. How long will she have to wear the cast for? She sounds so gorgeous, development just like my little girl, her ‘twin’ (Olivia however screeches for chocolate rather than signs thank you, so well done on that). Good luck to both of you x

  6. thanks for putting things in perspective for me after I bawled after having to deal with the 2nd ‘pant poo’ of the day by 10am….

    poor BB…..she will be fine….and you will too, in time and supported by good friends and a few bottles of gin
    x

  7. Oh ffs – the tears have started here too. I know what your feeling and I’m feeling it all again on reading these words. If you need to talk or email me do. Its not easy by any means (10 weeks 4 days in!) but you will be surprised at how they adapt. I broke my heart over this but Erin is testament to how they cope.

    Do you know the treatment plan yet?

  8. ((hugs)) I’m sorry. You don’t have to apologise – yes, there are poorlier babies but that doesn’t mean you can’t cry, shout, and be angry for her. No baby deserves to be sick, no matter how severe

    xxx

  9. Oh Jane. I am so sorry. You will get through this, you will be a better person for it and BB is a wonderful girl and she will thrive with you as her mum.

    Sending lots of love and hugs

  10. Oh sweetheart, big hugs. In fact you must take a day to do just that, get it all out, it’s much better for you and your family if you don’t leave it all pent up inside.

    It’s horrid for you all. The good news is I know a little girl who had the same and you’d never know now. Stay strong, it will be ok. Xxxx

  11. I want to say something to make you smile like you more than often do to us, but it sounds like to tomorrow you plan to smile and not today.

    Big hugs, BB, you and your family sounds so strong and think how many signatures you can get on that cast. See trying make you smile, poor attempt I know.

    Be strong lovely Lady xxx

  16. Jane, sending you lots of love from all of us. You have such a lovely way of writing which puts others first and your needs and worries second. Take some time to put YOUR worries first and have a good cry. It helps.

  19. I am so sorry, shout, scream and cry your her mum of course you are entitled to do that. Whenever your child is poorly it is the worst thing in the world so you are allowed to wallow.

    Big hugs to all of you xxx

  21. Oh Jane, I am so sorry to read this. Poor BB. Poor you. Shout and cry as much as you want, anything that makes you feel better, is good.

    Hugs and kisses to BB. Hugs and wine to you.

  22. Jane, I wish I could write something amazing that could take your pain away, I wish your gorgeous Family but most importantly BB weren’t having to go through this. I am so gutted for you. Please feel free to scream, shout, cry and drink *offers shoulder*. I know BB is a little ‘fighter’ and this is curable but its not bloody fair!!! Anything I can do to help I will. Thoughts with you, BB and your amazing Family xxxxxX

  23. I would need more than a day! Poor BB, poor you. I can only echo what Middle-aged Matron said up above – BB is unlucky to have health problems to deal with, but lucky to have such splendid parents to help her through it. Lots of love, chips and gravy xx

  25. So sorry to hear this, but you must not chastise yourself! My mum, my GP, my health visitor, the hospital where I was xrayed aged 2yrs and 10 months didn’t spot it! You can’t see it if you don’t know it is there to look for. Please do not feel guilty. It is incredibly hard to diagnose – mine, as I have already told you in an earlier post, took 46 years. Just make sure you have a good surgeon. A hip surgeon is one thing, a specialist in dysplasia is another. There are groups now on-line (one being the Hip Women Yahoo Group of which I am a member and which has been a life saver in the last three years) where you can chat with others in the same situation, Happy Hips (I think its called is a teens group, and there is there is a facebook group, too). Email me at annickhollins@hotmail.com and I will give you as much information as I can on groups, surgeons etc. if you want. It is hard to come to terms with and you deserve a day to be angry. I have often wondered why I ended up following your blog which I randomly found a few months ago – perhaps this is why. Now go and open that bottle and raise a glass to yourself and your beautiful daughter!

    • Thanks Ann, I still cant believe you have ran marathons

      we are going to the John Radcliffe which is meant to be good for open reduction – will keep you informed when I know more 🙂

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  28. Sending virtual gin, cake and hugs your way.
    You’re allowed to huff, wallow and complain any time you want- you can get a special extension past the one day limit 😉

  29. Beautiful post. I think you deserve a day for all that fist shaking! What a strong and lovely little girl you have! X

  30. Sending you lots of hugs ((())) – it sounds as though you have a wonderful little girl, whom is adored by all. Keep smiling as these challenges only make us stronger and it sounds like she is the strongest of us all x x

  31. Oh how awful poor BB has something else to contend with. She has a fantastic family around her and I’m sure she’ll take it all in her stride. You on the other hand should take as long as you need to scream/shout/stamp your feet!

    Much love xx

  33. I think you can take today, tomorrow and whenever else you need.

    It sounds similar to a condition my little cousin had as a 3 year old and she is now a happy, wise 20 something year old who fulfilled her dream of working with horses even though ‘they’ always told her she’d never be able to – her Mum swears it was the making of her even at such a young age!

    I send you love and many hugs X

  34. You are right, she will cope brilliantly and still run you off your feet once she gets used to it. And you will get used to it too, and she will still be happy. But it always does feel unfair when it happens to you.

  35. Oh Jane you should have a whole week to shake your fist and ask why me? You’ve been through lots – I’m sure that the epilepsy and the ddh must be worse for you than for BB, otherwise she wouldn’t have got on with it all so well. She will come through it again and so will you. But no-one can deny you the odd rant or wallow x

  39. She will show you what true northern grit she is made of and come through this as yet another example of strength and no-nonsense complaining. She has you as her mum and a wonderful family to help her through it. But in the meantime, shout and wave your fist all you want, we’re all listening. Wine also helps. x

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  43. Since life is not easy sometimes, a story by Erma Bombeck
    The Special Mother
    Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year 100,000 women will become mothers of handicapped children. Have you ever given thought to be selected according to what criteria the mothers of handicapped children?
    I visualize God hovering over the earth, and his instruments for propagation with great care and deliberation. He observes, then his angels in a giant ledger.
    “Armstrong, Beth, son, patron saint. Matthias.
    Forest, Magerie: daughter. Patron saint: St. Cecilia.
    Rutlegde, Carrie: twins. Patron saint ? Give your straight, it is usual that is cursed. ”
    Finally, he mentions a name to an angel and smiles. “Give her a handicapped child”
    The angel is curious: “Why this one, oh Lord, she’s so happy?”. “Exactly,” smiles God. “Can I give a handicapped child a mother who does not know laughter? That would be cruel.”
    “But has she patience?” asks the angel.
    “I do not think they have too much patience or she will drown in a sea of self pity and despair. Overcome the initial shock and the anger has died away, she’ll handle it. I watched her today. She has a sense of autonomy and independence that is so rare and necessary in a mother you understand. the child I’m going to give her has his own world and they must make it live in her world, it will not be easy.. ”
    “But, Lord, I do believe they are not even in you.” God is smiling.
    “That’s nothing, that’s okay. No one is perfect. She has just enough selfishness.”
    The angel gasps. “Selfishness? Is that a virtue?”
    God nods. “If they do not sometimes be separated from her child, she’ll never survive. This is a woman I will bless with a non-perfect child. She does not realize it yet, but it is to be envied. She will never a spoken word take for granted. Never a step ordinary. If your child for the first time mom says she will be present, that they witnessed a miracle. When she describes her child a tree or a sunset, it is him so to see how few people see my creation it ever. I will permit her to see clearly, things I see. ignorance, cruelty, prejudice, and I allow her to rise above them. You will never be alone. I’ll be with her, every day of her life, every minute, because she is doing my work as surely as if they are here next to me. ” “And what about her patron saint?” asks the angel with drawn spring. As God smiles. “A mirror will suffice.”

  44. Oh Jane, I commented a few days ago but it doesn’t seem to have appeared. It went something like this…..
    Wow, FFS, and loads of further profanities. Jane you are amazing. Even after your long hospital stays before BB’s diagnosis, you were cautious to take time for yourself. You rarely mention her epilepsy. And now this. Please remember to take time for yourself. And never forget “my cut finger is worse than your broken leg”. You can wallow in the dark days. It would be madness not to.
    BB is a very very very lucky little girl to have a Mum like you. Love you loads
    xxxx

  45. Thank you for your reply , its nice to know someone felt the same ,at times now i feel like im not bonding with my daughter because there’s something wrong with her. I feel i’ve lost all faith in God as almost everyweek of my pregnacy i would light a candle and pray that everyting would be ok with my baby and yet it wasn,t. My daughter was born with the thyroid but it failed to work , i love her to bits but feel sick in my stomach with worry of how she’ll develop. Is your son doing the normal things that a child his age will do , and will he go to school as normal Thanks Again !

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  48. We’re all allowed ups and downs, for any reason really, so of course you can have your day 🙂 and your week, month, whatever it takes. Life is tough, but the rewards from having any children are amazing. They are little fighters and it probably hurts us psychologically more than them. I prescribe wine and chocolate for you (or tea and biscuits if you can’t 😉 ) xx

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