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No more fight.

This year has been long

and horrible

culminating in the height of awfulness over the last three weeks

and especially yesterday where I was made to give Ivy an infusion in the hospital

while the nurses all watched.

They saw everything -

including my holding Ivy down to stick the small orange butterfly needle into her belly

and the intense pain that she feels

and then a most horrendous rigor episode (the forth in two weeks)

that I hope will fade from my nightmares eventually

and today I lost my cool with the new doctor

because she wanted to take away the subcutaneous immunoglobulin,

sending us back to intravenous and all of its problems and issues

and in turn

take any semblance of control I thought I had away too

and then I turned on the one nurse that cares about me as well.

I’ve tried to stay positive here

but the truth is I am a wrecked mess.

A hollowed out husk of the person I was

even just  twelve months ago.

A shell.

I want to talk about it all, hash it out here

but in the same breath I don’t.

This year

I’ve argued more than I’ve ever wanted to -

ever imagined I would need to with medical professionals

watched Ivy go through too much surgery

watched my family fall apart

and never felt more alone.

Most of the time Ivy is confused which place is home

and which is hospital.

It seems the two have blended together somehow.

I feel as though I have lost any control I thought that I had at home

and in the care of my daughter.

I’ve thought about giving in,

giving up

giving Ivy to somebody who could look after her better than I could

and tonight I still wonder whether I am cut out to be her mum.

I’ve fought

and fought

and fought this year

and now I have no more fight left in me

and so this Christmas (if I even manage to pull together something that remotely resembles a celebration)

I want nothing more than to be at rest

and for all of us -

Ivy too (because we came home today from the hospital – discharged)

to find a little peace in the season.

 

 

 

 

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36 Responses to “No more fight.”

  • Lesley Watters:

    Tiff, you are an amazingly strong woman and an incredible Mum to all of your kids, especially Ivy. Hope Christmas brings you some well deserved rest and time with your family. Thinking of you xxxx

  • corrie (8 comments.):

    oh I’m just wishing an easy road ahead for you. I can’t imagine the life you and Ivy have and the impact on your family
    I hope you get some rest and recharge those batteries and get to stay out of hospital for a while
    lots of love from here
    corriexxxxxxxxxxxx

  • Bec:

    oh Tiff..this is heartbreaking. But you are definitely supposed to be Ivy’s Mum, and theres no doubt her fighting spirit comes from you <3
    I've seen the briefest glimpse of Immys struggles in class this year also, but like you both she is a fighter, and comes from the strongest family I know.
    Stick together and stay strong.
    Merry Christmas x

  • Annieb25 (7 comments.):

    Tiff, you are the only mum who is perfect for Ivy, and the rest of your children. Never forget that. Ever. xxx

  • Dianne Nunn (24 comments.):

    I am so sorry you are struggling but remember no one loves or cares for Ivy the way you do. And Ivy loves you. All of your family are carrying a heavy load – I can only wish you strength and peace and certainty in your decisions.

  • Rachel:

    Tiffany, I am one of many who reads and admires and empathises and sympathises from afar. You’re very plainly doing a wonderful job in awful circumstances. I hope there are supports you can lean on in the coming weeks and that you and your family are able to have a calm and hospital-free festive season.

  • Immy:

    This year has been the hardest in a long time. So much hospital and so, so much sad. I hate the feeling of losing control and this year has been full of it. It’s been so incredibly hard to watch Ivy go through so much and you go through so much and watch as everyone falls apart. The worst part though, is watching you get knocked down by people who think they know what’s best for Ivy, and watch you pick yourself up again and again, fighting for Ivy and the whole family. Watching you grow more exhausted with each admission. You just keep going and going and all I want is to wrap you up in my arms and take all the pain and sadness away even just for a little while. Because its what you deserve.
    You are easily the strongest person I know, and I would never, ever pick anyone else to be Ivy’s mum or mine.

  • Vanessa (1 comments.):

    Tiff, I’ve often thought this, and never expressed it to you, because, maybe it’s not my place, but I feel the time has come to say it perhaps. You are more than welcome to dismiss/delete/ignore my comment if it doesn’t mean anything to you, but I’m one of those people when I feel something strongly, I need to say it, in the hopes that it will help you.

    You lost your beautiful baby boy Will. You have held onto him and his memory so tightly. I believe that Ivy watched all of this from above, pointed to you and the strong incredible love that you felt for Will and said, “That’s her. That’s the one. That’s the one who is strong enough to be my mum. I’m going to need her on this journey that I’m about to take, there is no other woman on this planet, who will be able to be my mum better than her.”

    Yes, I believe that as children in heaven before we incarnate on earth, we choose the ones around us who will best serve us on our journey ahead, in whatever form that may take.

  • Nicole Watson (1 comments.):

    Tiffany, I am praying that you would have a break in the constant stream of awfulness and that you have not only a relaxed and restful Christmas but that you can salvage the joy in it as well. Ivy is just so precious and no-one can do a better job than you because no-one loves her like you do. I don’t know why you have the life that you do and the hard road that accompanies it, but I want you to know that you shine despite of it. That your heart of love and determintation are a gift and you inspire others on their road of suffering too. Merry Christmas to you and your beautiful family. Nicole

  • Cathy (14 comments.):

    Oh, Tiff I don’t know how you do everything you do and I’m not surprised you feel worn out, beaten down and trodden on. But your Ivy’s champion – you always have been. You are the best Mum ever – evidenced by Immy’s comment above and by everything we read here on this blog. I hope we can all send strength out to you so that you can face the new year with renewed fight (even though you shouldn’t have to fight). I hope you all get your wish for a peaceful Christmas and here’s to a better 2013 xxx

  • Trish (588 comments.):

    What Immy said …so much better than I could have.
    Love and strength to you my friend.

  • Kathy:

    This is breaking my heart, if there was anything I could do to change all this for you I would do it in an instant. You are a wonderful mother to all your children, constantly there for them and fighting for them – you are a real inspiration. I am wishing you all a happy, healthy and peaceful Christmas together.xx

  • Di:

    Hang in there Tiff, David and all your great kids. You are all in our thoughts and prayers and we hope you all and the littlest ballerina have a wonderful and peaceful Christmas and break. XXOOXX

  • Jan:

    No wise words – just special thoughts and hopes for you and your family. Please know that you are in our thoughts every day.

  • SassyCupcakes:

    I’m so sorry Tiff. My heart goes out to you. I hope with all my being that next year is different in so many ways.

  • Rebecca:

    I wish you peace, peace, peace with all of my heart, and all of my hope

    x

  • Jodie:

    I read every single one of your posts & say a quick prayer for you, Ivy & the rest of your family each time, but I felt it was time I commented publicly.

    I don’t know you or your family but it would be a privilege to do so.

    I have a daughter around Ivy’s age and each time I think of you both, I think of my own ballerina girl. Tiff, I agree with these ladies commenting before me. There is only one person that was made to be Ivy’s mum and that lady is you.

    I can’t really comprehend the constant battles you face with the medical ‘professionals’ and the pain, fear and heartache that comes with advocating for you little girl day in and day out but know in your heart that you would be the one constant in Ivy’s world & that even as an outsider looking in, it is clear as day that every decision, comment, argument you face you do it because you need to and because YOU know & love Ivy better than anyone in the world. What more could she need in her mother?

    If it were truly possibly I would loan you all the strength and peace I have in me to help you through the darkest days, but seeing as though it doesn’t work like I would like, know you have my prayers & cheering happening for your corner.

    Your strength, determination & amazingness (is that even a word?) inspires me. Truly.

    I wish I could do or say more but what will get you through comes from within & I know no one could ever defeat the girls mother in you…

    Your family sounds incredible. With love, prayers & hope for a better future, Jx

  • kathryn:

    Tiff, I wish there was something I could say to make you feel even the slightest bit better.. I truly believe that you are the perfect mum for Ivy. I hope that this Christmas brings some magic, hope and health to you and your wonderful family. Sending love xx

  • Jeanette (18 comments.):

    ((hugs))

  • jeanie (224 comments.):

    Oh Tiff – I am praying for some miracles to work for your beautiful family.

  • robyn:

    I wish words could make it better. Praying you get a rest and sonehow have a good christmad. Xxx

  • Dianne:

    Tiff you are a wonderful mother to Ivy and all your children, Ivy loves you and needs you, keep going, I dont know how you do it, I wish we in the cyber world could offer you more practical help, but you are doing a great job, you are an amazing and loving person.

  • Carol:

    I’m so glad you have a space to vent here because you so need it. I love that you can be honest that you’re feeling shite, because you have every right to be feeling that way.

    Really hope you get some peace and rest and yes some joy this Christmas.

    You so deserve it, you’re one of the most amazing mums I’ve ever come across xx

  • tricia (170 comments.):

    YOU are the best mom for Ivy! NO ONE will care for her like you do! NO ONE will fight for her like you do! My prayer is that you find the rest and peace you are seeking in the next few days, that you all as a family will enjoy the moments you have at home and be strengthened to face whatever the next year holds. I hope it is a much better year and that the nightmares of this past year become distant memories. God bless!

  • Rebecca:

    (((((((Tiff)))))) Love and hugs and wishes that in the new year things will be better. You are the perfect mom for Ivy and she loves you. It may be hard to see it right now but you are doing a great job and she is very lucky to have a mom willing to fight the battles for her best interest. No “expert” knows your baby better than you or what she needs. No one else can take your place in Ivy’s heart.

  • Maryam:

    You are as strong as a rock, an you are by far the best mother I know!! Rest my dear, I am wishing you much needed rest!

  • Deb @ Bright and Precious (32 comments.):

    Oh Tiff. What an tough year. And so heartbreaking. No family should have to go through this. Praying for lots of healing and hope for the future. Sending love. xx

  • BW aka Barbara from Bostoncg:

    What Vanessa said, about Ivy choosing you to be her mum, that you are her perfect hope.
    To Immy: you are wise beyond your years. You will make a terrific doctor or any other type of profession you choose. You are one of your mother’s blessings. I am glad you are behind her.
    Tiff, there is no one else who could stay the course. Its not an easy road your whole family travels. No one else could love your kids so fiercely, or be the advocate a seriously ill Ivy requires. Any one of us would fall apart under the stresses. You have the courage of a lioness. I also wish we your readers could help out in a tangible way, but distances prevent it. You are amazing. I know how hard it is to advocate for myself with several chronic medical issues. I am an adult and sometimes i want to tear my hair out and run away and hide. You are the one who is constantly alert , and torn in so many directions while there are things you need to do at home and with the other 6 kids and husband. My heart goes out to you and yours.
    As for you having to infuse the little one while trying to comfort and restrain her while the nurses watched, why weren’t they doing their jobs of caring for the little girl. I can’t verbalize here how negligent I find that. As for disagreeing with the woman doctor, you know what has the best chance of working even for a short time with Ivy. You live with this 24/7.
    Try to rest

  • BW aka Barbara from Bostoncg:

    Sorry, this is the continuation of the above post. My computer has poltergeists and decided it was time to submit.Let me continue-
    Try to rest a little while caring for Ivy catching up with the family and the house, and trying to do as much as you can for Christmas in 5 days. You all are in my thoughts and prayers. Lots of love, Barbara

  • mum:

    I know this year has taken it’s toll on your brave heart and invincible spirit. I also know you hate conflict of any kind and much prefer to avoid getting involved but the very fact that you HAVE fought and fought and fought again for all that you know is right for Ivy, is living proof that you are the “best mum Ivy could ever have.” I know, too, that other conflicting family issues have weighed heavily on your soul and having to prioritise and sometimes make hard decisions that may not have been ideal for all concerned has impacted heavily on your feeling that you are alone and have lost control.

    In hindsight, though, you have tackled all this year’s hitches without fault and have maintained every important event and milestone for every one of the other kids without hesitation. Parenting is never easy and even less so when a chronically ill child is a constant, but you know you could not, nor would not, ever give Ivy over to any one else’s care, or for that matter, any of the other children, simply because that is who you are.

    Even though it all seems hopeless, you’ve had enough and are feeling ready to give up, as all parents sometimes do, you know that you will carry on regardless because those kids need you so very much. Without you to guide and care for them as you do, it would be so much harder for them to find their way and Ivy’s well being, particularly, would be sorely compromised.

    Your well being cannot be compromised either, so I so wish for you a long rest from all health issues, peace, togetherness, love, laughter and the joy of Christmas to restore your soul and raise your hopes for a much better year ahead. xoxo

  • Pixie:

    You can and will go on.

    You have strength you do not know you possess

    And we are all here holding you up

    Xxxxxxxxxx

  • river (194 comments.):

    After all that has happened this year, all I can do is hope for a peaceful quiet Christmas and New Year with no illness and no hospital admissions.
    Keeping my fingers crossed.

  • Danielle (23 comments.):

    Tiff I am so sorry this year has been so devastatingly difficult. I wish and hope and pray for our munchkins to be well and healthy and not struggle. You are worn out and exhausted because you ARE CUT OUT to be Ivy’s mum. You have fought hard to get her the best care she can get, and that is exhausting. Know that I am praying for you and your family, and that 2013 is a year that will be a much easier healthy year for all of you. HUGS!!!!

  • Jennette:

    I’m so very sorry Tiff, I’m in tears over your situation. I want to tell you that I’m 100% Ivy would rather have you with her, despite everything that you must “do to her” – I bet you are the reason she survives the awfulness. She loves you with every inch of her little being and wouldn’t be able to imagine her life without you at her side taking care of her in the best way you can. Please please please find a way to believe you are the very best for your daughter, and for all your family despite all the dreadful challenges thrown at you and them. I so hope you are able to find a little peace over Christmas, and even some joy in their smiles of which I’m sure will still appear despite…..
    HUGS

  • Lucy:

    You are an extraordinary woman. I have no idea how you do what you do & I could only hope to have half of your strength. Ivy has the best person in the world at her side. You’ve so much to be proud of.

    I hope beyond all hope that you catch a break for Christmas & have a chance to ‘park’ all the bad stuff for a while.

    xx

  • kelley @ magnetboldtoo (13 comments.):

    Sometimes you need to stop being strong and fall apart a little.

    I adore you my friend and always here if you need me.

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