Sunday, 25 January 2009

Foot in mouth disease

I was having a conversation this morning (not the conversation I was having with you, K, in fact not the conversation I was having with any of you Ks, just to be clear about that!), and just mentioned how much I was looking forwards to Helen House. We had been talking a little bit about how Mog had been ill, and I said I was looking forwards to getting her checked out by the doctors there, as well as having a break. And back came the response "sounds like you've bitten off more than you can chew with taking them [the girls] on then."

I didn't really know how to respond to that. I don't think I was complaining. And even if I had been, I'm not sure how I was supposed to reply - "Oh you know what, you're absolutely right, I'll send one of them back shall I?" It's odd, because I thought I was being enthusiastic about the break. And about the fact that Mog was getting better. I ended up saying that having just the two girls was much easier than having had three, but that felt fairly disloyal both to Goldie and to the baby who was my last number three. And then someone else came to say hello, and foot in mouth woman went away to annoy, upset or bewilder someone else.

So, for the record, and in case people reading this are also wondering whether I have somehow bitten off more than I can chew, I'd like to say this:

I love my girls. I love caring for my girls, I love being given the chance to parent my girls, and I love my life which has these girls in it. I didn't give birth to these girls, but they are nevertheless my daughters. And I love them with a mother's love.

My girls are fairly substantially disabled. They have complex medical needs. But I don't love them any the less for that; it doesn't mean I somehow consider them to be less human, less lovable. It does mean I spend a lot of time trying to juggle health needs, trying to unpick medical issues and trying to keep on top of things. But, although I don't enjoy seeing the girls unwell or in pain, I do actually quite enjoy teasing out solutions to their problems. It is really satisfying when I can figure out that something as simple as a scarf knotted around the neck will support Mog's head well enough for her to enjoy taking part in life again. It is a marvellous feeling realising that a new medicine is actually doing what it is supposed to do. It's also tiring, frustrating, frightening,and occasionally heartbreaking, when there are things I can't fix, can't change, can't get anyone else to take action about. More than I can chew? No - but definitely enough to make my jaw very strong!

Most of all though, I am a mother. I shouldn't have to explain that to people week after week, year after year. I don't have patients, I don't have charges, I have daughters, I have children. Children who, just like your own children, go to bed at night, go to school during the day, have likes and dislikes, are capable of being naughty and of enjoying a good joke, two small human children.

It is true that Mog has two mothers, and a father, and I am only 1/3rd of her parenting team. But that doesn't make me 1/3rd of a parent; it means she has three parents. If a couple have children, is the mother only half a parent because the father is also present? Little Fish is my adopted daughter, I am her only legal parent, and yet still people talk to me as though I am caring for her on behalf of someone else.

It's not just annoying and sometimes upsetting for me, it's also unsettling for the girls, especially for Little Fish. She is super-clingy at the moment; people querying my ability to parent her are not going to increase her confidence and sense of security.

I am a mother. I'm not some kind of superwoman. The things which upset you also upset me. Watching my child be ill is just as upsetting for me as it is for you. True, I get used to some of the things we deal with every day, but there's a fair amount I deal with with the help of a heavy dose of denial. Don't be taking that away from me unless I ask you to, please! And please do think about how you would feel if someone asked you the questions you ask me.

I'd also like to say this:

We have a good life. Whether it's small, every day things, like doing the washing up or watching the Teletubbies, or bigger things like exciting holidays and fancy sensory equipment, we aim to make the most of life. We aim to live deep, making the most of what we have, where we are, when we can. If Mog only has half an hour when her eyes are open, then Little Fish and I will try to make sure that she has good things to look at in that half hour. If Little Fish can only wiggle freely when she's in the shower then we'll give her a shower whenever she wants one. And if I want to eat large numbers of Whispa bars then I will!

Chew on that!
Tia

22 comments:

swift said...

(((((((Tia)))))) People can be so insensitive sometimes.

Anonymous said...

Can i go clouting people round the head with a wet trout if they do any more upsetting you?
Col

Michelle said...

Uggg, I just hate that.... Makes me want to snarl at someone. Our children are precious gifts. Once when I was particularly tired out I was also told to give her back to the state. How can someone say such a thing? I'll never understand.

Anonymous said...

Tia
As a lurker, and parent of a disabled child, I just wanted to say that no-one reading your blog would be in any doubt about how much you love you daughters.
Some people are just a waste of energy!

PMDPeter said...

I hate people like that, but finding the right sarcastic reply in an instant always fails me.

I know that all the children who you have looked after, on others behalf, as well as your own, have all had the same love, care and attention that other parents give their children.
Dont most parents enjoy a day or two away from the rigours of caring for their children whether they have a disability, and need a specialist respite unit, or not and go to a relative or friend.

Peter

Anonymous said...

chewing .. is overrated yknow .. I know both your girls would agree :-) I dont like the term "more than you can chew" because we have so many tools available to dissipate the need for chewing these days .. the hospice is just one of things. The doctors another .. a mothers love cannot be measured in mouthfuls.

sandy x

Anonymous said...

Just wonder if some people really think about what they are saying--even if one has not responsibilites for anyone else--don't they enjoy a break from their every day routine--work etc.?? So no matter who we are or how many kids we have disabled or not--I'd say we all like a break . Therefore that was a very insenstive comment to make--Because we all know how much you love and the good quality and quanity of care that you as there mother give them !!!
Debra

Anonymous said...

I do hope blogging that made it feel better. {{{}}} your girls love you very much too xxx

Cathy said...

Sadly I've never had a chance to meet you and your beautiful girls, but your love and devotion shines through your words and pictures, both here and elsewhere.

Put that insensitive conversation behind you, and enjoy Helen House.

Cx

Anonymous said...

well said. Funny how parents of non-disabled children are allowed a vent or moan but we aren't. We're either 'being a victim' or 'bitten of more than we can chew'.
Sigh.
Have a good break at Helen House. We're waiting to see if Celyn will be awarded hospice care. I'd be dreaming about a full nights sleep if I ever got any sleep to dream in ;-)

Claire said...

Those photos at the bottom are super cute! How could you ever give back your daughters?

Claire said...

The photos at the bottom are super cute!

Trina said...

I've been told a time or two that my mouth was much too full of food. Course I do like my food. You know we sure didn't get this way by lookin at the pictures! :0)

Absolutely NOT worth your time Tia. Let me just wave my magic wand and place a spell!

**Sparkle Sparkle lotsa magic dust** **A whole lotta magic words that sound really important**

Be gone evil mouthy one. May you get shingles on your hoo hoo!

There its Done!

Now enjoy your rest my dear friend :0)

Luv ya,
Trina and Jophie

P.S. Did you udnerstand me? My mouth might be too full :0)

Alesha said...

(LingOL hysterically at Trina's evil hex!!! "shingles on your hoo hoo" indeed!!!

Ok...(still laughing)...trying to get control...

there! Better now!

For what it's worth, in my not so humble opinion, ALL of us have more life than we can handle! Yes, God allows us to make our own decisions, choose our paths, etc., but ultimately He controls our little worlds. And they are all bigger bites than we can masticate in our own strength.

In a perfect world there would be no disabled children, no children who needed homes, no broken hearts, no frayed emotions, no chronic diarrhea of the mouth...

We all have more than we can do ON OUR OWN! If we could handle it all, then we wouldn't need Jesus...

And we KNOW how much we need HIM!!!

I'll bet a magnifying glass trained on your commenter would show some really BIG issues swirling around a chomping mouth! Since she couldn't chew her own troubles away, she decided to chomp on you.

Sad, huh? I suspect she really needs Jesus in a big way - Christian or not!!!

I pray THIS day is peaceful and that those around you are kind and nurturing.

:-)
Alesha

Alison said...

I've been lurking on your blog for months, but never commented before, because I have never felt I've had anything relevant to say. I read your blog because it gives me more insight than anything else I've ever read into a) what it must be like to parent children with multiple special needs and b) why someone would choose to do this. My own two daughters are older than yours and "normal", and I do not know how I would have responded if one of them had had serious medical issues. I can only hope that I would have done as good a job of it as you are obviously doing.
It's normal to want a rest from the demands of others, no matter how much you love them, and normal to want a break from the tedious routine of daily life, be it washing up or measuring out medication. Nobody could read your blog without realising how much you love and give your daughters. I wish you all the very best.

Mrs Pea said...

Oh why do people say such things. We've been told it would be better if we didn't have our daughter. I'm so sorry. What you are doing is a wonderful thing - being a mumma to two girls you adore.

Anonymous said...

Have just spat tea on my keyboard laughing at "may you get shingles on your hoo hoo!"

On a serious note though, I do know what you mean. Sometimes people speak to me as if I'm not allowed to be sad about a setback with S, or fed up with the tedious bits of caring, or wish some days that his disabilities would go away for a while. Yes I chose him - with full (well, full-ish!) knowledge of the 'extras' that go with him -but that doesn't mean I can't feel the way other parents do about their children.
Eat all the Wispas you like, my dear!
L x

Elinor said...

Hi Tia, I love that pic of the girls. Pay that person no mind. You enjoy Helen House and come back refreshed and rested.

Alison M said...

Hi there!

I hope you having a great time in HH - am jealous! We even "worser" parents than you, cos we leave A there all alone!! I have yet to understand how people who know absolutely nothing about how we live/cope with our lives feel they have the right to comment... LF and Mog are two of the luckiest little girls to have such a wonderful mum... keep smiling and see you on Friday I hope love Alison xxx

Anonymous said...

I'm another lurker too, I love reading about your girls (gorgeous pics btw). You've so summed up how I feel about mothering my daughter, I just wish I was able to put it as eloquently as you.

Hope you all have a wonderful, much deserved break at HH, and that they look aftr you really, really well. Thank you too Trina for the laugh about the shingles on the hoo hoo - brilliant! I'll remember that hex for future use....

Anonymous said...

Think I must be a lurker but as a parent of a severely disabled child you do a fantastic job.
I hope you have a well deserved rest at Helen House.I find your blog inspiring,thank you.Wish you could give my kid respite!

Jules said...

How could ANYONE doubt your motherhood. Your daughters are just that ..your girls..

but a little respite never did any mother any harm...:):):)

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