People have asked me 'How do you cope?' 'How do you manage to stay cheerful?'. The answer is simple. Its that little sparkle of silver, that tiny piece of reflected light. You keep looking til you find it and you grab it, hard, with both hands and you dont let that sucker go until the cloud has passed.
Since 'getting' SPD, being stuck here on bedrest, and being in varying degrees of constant pain, ive learned a lot. About myself, my priorities, my family and my friends. About how i see the world and who i am as a person and a parent. Thats some deep shit. But its true.
Ive made a sort of list, (i like lists - they help make some sense of the tangle of threads that passes for my brain) and I'll go with the cloud first, just to depress you, then i'll show you my silver - all the positives that have, so far, come from this experience. It doesnt matter to me which list is longer, because its the second list that counts, thats the one i will carry forward with me as i recover from this, and on as life becomes a new kind of normal.
Imagine the weight of being everything to four children. Not only that but having a quite suddenly disabled wife to care for. Then all the responsibility for the house falls to you too. Its a pretty hard wake up call, and a lot for one person to take on. Husband has had to do a lot of growing up in a very short space of time, and he is all worn out, the poor bloke.
Not only has the relationship with Husband been affected. My children have suffered too, all of them in different ways have had to give up, go without and make do because i just cant do those Mummy things any more. I think though, that this has been hardest on Chickin. She was only 18 months old when the SPD started affecting me, i was her whole world then. She followed me everywhere and we were together every waking moment. I was the only person she would settle for at bedtime and i loved how close we were. Then, out of nowhere, Mummy couldnt pick her up. Not long after that Mummy's tummy got big and she couldnt snuggle on my lap any more. Soon it was too painful to have her on me at all. To her it must have felt like rejection, and so cruel. It matters not how much you try to explain, to a child that young, all she knows is what she can see.
Being a mother and watching yourself become redundant is awful. From being the go-to person to really not much more than a burden, a lump in the corner, is pretty hard. Ive felt useless as ive been able to do less and less. Powerless and vulnerable at times too. Now, being dependant and incapable its hard to get through the day without becoming frustrated and angry.
You can almost get used to a base level of constant pain, its a hum that never goes away and it becomes part of the soundtrack of your day. This is dangerous because you almost forget how much has changed, ive done it - woken up and forgotten im like this - and tried to turn over or sit up, causing myself more pain or embarrassment. I guess somewhere in my head im still the normal, capable me. Actually, i think thats a good thing.
I feel plenty of guilt. My family have suffered because of me. I was the selfish one who had to have another child, to fill some perceived hole, satisfy some need. I wasn't grateful enough for the four amazing, wonderful children i had been blessed with. I needed more.
At times ive felt i deserved the physical pain, payment for my greed, for changing everything, for being selfish. Astroboys pregnancy was the only one i didn't enjoy, and i thought i deserved that loss as well. Adamant that he wouldn't suffer too, i refused pain relief throughout the whole pregnancy, right up until that first crack. A 'small' risk of him coming to harm just wasn't good enough, i wanted him and i should protect him, even if i had already failed everyone else.
Depressing, huh? That folks is my cloud. Or, as much of it as i can bear to show here. Now to the good bit, the bit we hold on to....
Ive learned that Husband loves me, beyond all doubt, really loves me and that my family are far and away the most important thing in my life - Ive known those things all along of course, but to have them reinforced so strongly and deeply has been an education.
Being away from the busy part of the house has afforded me a kind of retreat status. One of the children will come up to see me and we will have some really good quality, one-on-one time together.
Without the concerns of housework and day to day running of the house i can afford the children my total concentration and because of it they are becoming more relaxed and more confident.
I wont to make sure i never treat my children as burdens (something i think we all accidentally do from time to time when we are stressed), - i want them to know, always, that they are loved and valued.
Ive found a depth of patience i never knew i had.
I am able to concentrate on my breastfeeding relationship with Astroboy, and together we have mastered the tricky boob!
Being on a crapload of painkillers has had the side effect of drastically reducing my appetite. Im no longer constantly hungry and have gotten used to smaller portion sizes. Im also making healthier choices in what i eat.
As a family, i feel we are closer now. Not just those inside our house but extended family too. Everyone has pitched in and helped where they can and its made Husband and me feel so loved.
I have a new appreciation of Husband. I no longer panic that should the worst happen they will all perish under the washing pile/look like street urchins/die of scurvy. He has grown up a lot and, though still evil for the first half hour after waking, he has shown what an amazing husband and father he can be.
We have a new life among us, new love in our home, a fresh new person to mould and cherish. Amazingly, there has been no jealousy or resentment toward Astroboy, and i am so proud of my children for that. They all simply love him.
This, is my piece of silver x
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