Thursday, September 22, 2016

If you have a friend who parents a child with special needs of any kind...this is for you

If you have a friend whose child has been given a diagnosis where special care is required, then please hear me. 

Your friendship is going to change. 


It just is. You can hang on for the ride and expect bumps on the track...or you can hop off this ride now. Our lives were turned upside down in 2008 when food allergies and asthma entered the scene. 



Looking back, I can see so clearly that so did our friendships.  Friends asking for dates to meet up, me not being able to commit, aggravation entering the equation and then silence. I can see now what I couldn't then because I was in the thick of it. I didn't even realize that I needed people to come to me and they didn't realize that either.  Of course we didn't!  It was so new and unexpected. It was no one's fault. It started a little around the time we had kids, as is sometimes the natural order of things, but right around the time we would have come out of it, the diagnoses started hitting. 

And now...now that there are so many more diagnoses (frontal lobe epilepsy and binocular fusion dysfunction, plus little sister Willow's issues) and therapists and appointments and questions and no money...we just can't be the ones who accommodate. Which sounds sucky on our part and maybe it is.  Maybe we're horrible friends. I know part of it is us, I just don't have a lot of energy to fix it. Which also sucks and for that part I'm sorry. 

Just...please don't make me feel guilty for that. Special medical needs parenting is filled with enough built-in guilt. Sometimes social media relationships are all I have within me to keep up. Or a text conversation here or there. 

I'm not writing this as a rant or a vent in anger, I'm not angry at all; I feel no need to vent, it's just not something that gets talked about. I'm telling you this because if you find yourself the friend of a parent/caregiver who has a child with any type of special needs, things may be different. Steel yourself for it. 

Your friendship doesn't have to end but a lot of the time, 
you're going to have to be the one who puts forth the 
most effort to keep it going.  

And I'm sorry. But if it's worth it, you'll do it. It takes so much effort and thought into getting us out of the house. And we already have to do it for things, so it doesn't mean we won't do it for you, but it may be harder and less often than you're used to.  Then the in-home therapies, planned doctor appointments and the unexpected ER trips...then making up for that lost time sitting in the hospital and squeezing in everything we missed that has to be done....it's just a different kind of life. Definitely not a bad life, but a life I didn't see coming so I didn't know to prepare you. I was busy coming to terms over and over and over with our new normal and I couldn't see anything else at times. 

Can you understand this and understand that your special-needs-of-any-kind parent friends aren't using the special needs as an excuse? Don't you think we'd rather things be different...easier? I wish I could bring Asher to anyone's house anytime without having to ask the awkward questions about the ingredients in their cleaning supplies or their eating habits or dog food lying around or whatever else insane thing I have to ask.  To go to a restaurant (I forget that people actually do that). Or bowling or skating where there are flashing lights that Asher can't be around. To go to a park--where people feed peanuts to squirrels--without thinking twice. To not think as hard about the spreading of germs while doing all of these fun things because Asher cannot get sick or he gets seizures. 

And I can't just get someone to watch my kids because they have to be trained in what to look for that would spell danger and then how to handle that danger and we HAVE to feel confident with these people.  Do you know how many people we have like that?  Two. And they live next door. Their names are Bibi and Papaw Shark and they are my parents. 

This isn't a complaint, but an explanation. We just can't. And we're so tired. It's a stage in our life where the effort it takes to get through a "normal" day with all of its abnormalities weighs us right down. But goodness we love and miss all of you like crazy. We also miss "normal" but we wouldn't trade Asher for it.

So what are some things you can you do, friends?
Don't heap on guilt.
Do tell your friends you miss them.
Ask where/how you can spend time together.
Offer to help.
Go to them.
Text and don't get mad if you don't get a return text, 
just text something funny or encouraging. 
If you need an answer, text again.
Forgive your friend. 
Forgive yourself. 
Start where you are, don't try to fix the past and 
how you got off track. Just start again.

I'm not saying this will be a one-sided friendship, that's not fair, it will just be different from what you're used to. And if you can't stick around for this wild ride, then please hop off now.  We miss you though we aren't mad. 

Our kids, though!!!  With all of the intense circumstances, THEY ARE AMAZING and worth knowing. We not only want you in our lives, but theirs. Equally.

As for the Hutchinsons, you're welcome back anytime. We really do love you and that love has no expiration date. If you can't, then don't. But if you can...close your eyes, raise your hands and HERE WE GO!

**Asher has an open group on Facebook called Asher's EPIc Adventures (Access it here).  Feel free to join for medical updates, laughs, and the kind of communication you'll only get from us on social media apparently haha!**

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