Where’s My Village?

I went to a mom’s support group a couple weeks ago.  The topic of discussion was “Finding Your Village.”  The older Max gets the stronger I believe in the fact that “it takes a village to raise a child.”  It’s hard, though, when you have a child with special needs, to build that village.  I’m sure it’s hard for every mother, but if your child has special needs there are other aspects to consider.

I’ve had plenty of offers.  I think people understand that caring for Max is difficult and draining, and so they want to help.  They say “hey, if you want to go out and get your hair cut, or have some acupuncture, etc. I can watch Max for you!” And I really appreciate that!  The problem is, it’s not that easy.  Max needs to eat every 4 hours, and with his pump feedings it usually takes around an hour and a half.  So anyone who’s going to be watching him for an extended time (even for a short time if it’s not planned right) will need to be trained on feeding via g-tube.  If he’s really fussy he will swallow air as he is eating and then he’ll need to burp during his feeding.  Since he is unable to burp through his mouth due to his fundoplication, he will gag and wretch and sometimes choke until you insert a tube to release the pressure in his tummy.  This is very traumatic to most people – we’re just used to it

Then there’s the stuff every baby deals with of  just not being used to someone new.  A lot of kids have a hard time being left with a stranger, and Max is no different.  This is a good thing.  It shows that he has developed attachments, and I am very thankful for this.  But when Max gets fussy he gets very stiff and tight.  He arches his back so that he is very difficult to hold on to.  So any potential baby sitter needs to be prepared to deal with this and know that it’s not abnormal for him.

Max also needs someone who can be on seizure watch.  And this is difficult because we can’t tell people: “this is what his seizures look like…”  because we don’t know.  We’ve never caught them on EEG.  He makes various movements that look like seizures, but many of them were proven to be CP related rather than seizure activity.  However, we still need to be on the lookout for seizures so we know if his medications need to change.

Taking care of Max requires a certain amount of training and experience.  And some people think that they can handle it, but I bet the training would scare them off.  My sister offered to watch Max so my husband and I could go out for Valentine’s Day.  So I went over to her house one day and demonstrated how to use the feeding tube.  My in-laws ended up watching Max when we went out for various reasons unrelated to my sister’s willingness, but later she told me that she didn’t think she could handle having a child with Max’s special needs.  I think most volunteers would feel the same.

The grandmothers are wonderful.  They have both spent a lot of time with Max and I – watching me take care of Max and taking care of Max while I’m watching.  And I couldn’t have made it this far in his life without them.  Our night nurse is another valued member of our “village.”  It took Max a couple of nights to get used to him, but they get along quiet well now.

The problem is, when you only have three or four people you can call, there’s a decent chance none of them will be available at some point.  And what do you do when that time comes when you haven’t gotten any sleep all weekend and the time that your child finally nods off is the time when you also reach the point of starvation and by the time you finish eating, your child has woken up again?  Who do you call when your house is such a mess that you can’t stand to be there anymore?  That is my dilemma.  Plenty of friends, but not quite sure if they’re “good enough” friends.  Will they be able to handle us at our worst?

I wish I had a handful of good friends who have older children with special needs.  Or a few CNA or Nurse friends would be nice too.  Someone who I can call without much notice who can take over just long enough to give me time to breathe.  I’m sure much of my problem is self-afflicted.  I need to learn to “let go” just like any other mother and trust someone else to take care of my child.  Really, the chances of something significantly life threatening happening is very slim.  I just need to keep reminding myself of that.

Anyone have any insights for me?  How did you learn to “let go” and trust someone else with your child?  How did you build that village of people to support you and help with the care of your child?

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