Thursday, 27 December 2012

Letter to a newer mother: what I wish I'd known earlier.

A new mum has introduced herself to a mailing list I follow. She has a newish baby, who probably has cerebral palsy, following a pretty rough introduction to this world. She seems pretty set in some ways - paediatrician, early intervention, therapies and referrals all happening or being chased. But she's asked for advice from more experienced parents, wanting, of course, to have some kind of glimpse into this strange new future, some idea of what more she could or should be doing, and especially, what we parents wish we had been told sooner.

So that got me thinking. My answer will of course be different to yours, and ours will be different to hers, once she's in a position to look back. And mine as an adoptive parent will inevitably feel different to anyone struggling with the whole birth/genes/gestation/whatever bits. But here's my list.

I wish I'd known

  • that time passes so quickly. And that tiny babies become toddlers, and toddlers become big school girls in the twinkling of an eye. 
  • And that infancy and childhood are really important, and should not be allowed to get lost in the endless rounds of medical appointments and therapies. 
  • That I am the expert in my child; I am the only person who gets to see the whole child. And that therefore I can and should advocate for the whole child, rather than allowing them to be swallowed up in any one particular form of therapy. 
  • That friendships will change. Some people will fall away, others will deepen. And that I will have a group of wonderful women who I wouldn't know at all, of it weren't for us all having our own special children. 
  • That it is ok to need help, and ok to accept help. And that it is useful at times to be able to be very specific about the help I need. And that it is also ok to turn down unsuitable help. 
  • That what I may find helpful may be completely different to what someone else in the same position would find helpful, and that neither of us are wrong. 
  • That my life would become so immeasurably richer and deeper as a result of sharing it with Miss Mog. 
  • That celebrating inchstones can become so much more satisfying than celebrating milestones; that every tiny step of progress made becomes something to share with the world. 
  • And that true friends will be right there cheering for you and your child when that happens. 
  • That you can get used to anything - seizures, stopping breathing, giving multiple medications, tubes and lines and holes in parts of the body which didn't ought to have them. 
  • Everyone has a poo story. But not everyone needs to hear it. 
  • The world won't fall apart if you reschedule a doctor's appointment to do something really important, like feeding the ducks. 
  • One wonky smile can say more than the longest speech in history. 
  • A largely immobile child really can "accidentally" clear tables with a well-timed spasm. 
  • Problems which seem insurmountable now will disappear, and will be replaced by new problems. Which will also either disappear or be absorbed into the new normal. 
  • Competitive parents really can be thick-skinned enough to brag about their marvellously advanced child whilst dripping with fake sympathy as your precious gem lies twitching in your lap. 
  • Conversely, you can be a great comfort to parents who have also been stung by the competitive  Mum, because your child is still lying across your lap, not crawling off needing to be chased across the room. 
  • People will feel compelled to tell you their own stories, including abortions, or relatives sent away and locked up, or how their pet dog had to be put down. You don't have to listen. And it's ok too to play special child bingo, giving points for "I couldn't do what you do." "You're such a saint." "Innit a shame?" and whatever phrase drives you up your own wall. 
  • Lack of sleep will destroy your memory. Everyone knows how tired new parents get; doing the waking night thing for a decade or more brings whole new layers of exhaustion. Write things down. And get used to being late. 
  • It's ok not to be perfect. It's also ok to go all out to present the perfect image, if that's what's important to you, and it gives you strength. 
  • Guilt lurks everywhere. Beat it down. 
  • People will always question your judgement. And give you titbits of advice which will make you want to strangle them slowly. Don't. 
  • Equipment takes up space. A lot of space. If you're thinking of moving, factor that in. My girls currently have seven wheelchairs plus two wheelchair sized shower/toilet chairs between them. 
  • You probably can do just about anything and everything you would have done if your child weren't disabled. But some of it may simply be toouch like hard work. So sort put what's important to you, and what's not. 
  • Abuse and neglect aside, there is no wrong here. Your choices will be different from mine, and that doesn't matter. What matters is that we work as a family. 
  • The future won't happen all at once, but one day at a time. So don't lose sleep over how you will manage years into the future but concentrate on finding the right balance for today. 
  • Wheelchairs are great inventions, and the right chair for the child can be life changing. 
  • Seizures suck. 
  • I can do all things through Christ who strengthens me. 
  • Love is completely overwhelming. 
  • You can do this. 
So that's my list. How about you? 


Claire said...

Everyone has interests and things they like, even if it is as simple as looking at sparkly things

It is fun to mock people who patronise you! (But better to wait until they have gone!)

Chain shops are generally more accessible, but independent stores are more likely to drop everything to help you get inside comfortably.

Queue jumping rights at amusement parks rock!

Cinema passes rock! but wheelchair pedestals for accessible viewing suck - find the best local cinema for you!

The best softplay centres are big enough for adults to go around with their children.

Everything will be ok, you and your child are awesome!

Tina said...

There is much amusement to be gained in the downfall of those staring do hard they don't look where they are going

A good Church accepts your child because of who they are not in spite of it.

Being a sibling to a child with special needs makes for a more compassionate child. But can also make them fiercely defensive. You will experience great measure of pride.

Anonymous said...

Make time for coffee, cake and laughter with your friends.

Respite is not for sissys. It's to give you back your parenting perspective.

You can never give too many cuddles.



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