Accept the Journey
The two of us had completely different reactions when we were first told that our kid(s) had issues.
Martha: “What are you talking about?! F*ck you! There’s something wrong with you, not with my kid!”
Ruth: “Thank God! This finally makes sense! Now there’s something I can do that will cure everything!”
Looking back, we can see that we were both right … and wrong.
Our kids did have issues. But yes, there is also something wrong with the people who focus only on that, instead of focusing on our kids’ strengths.
And yes, it is important to identify those issues so that we can understand what’s going on, and then try coping strategies and/or therapies, etc. that will help. But no, identifying and addressing the issues will not get rid of them. It will only give you a little more of a roadmap.
But the journey you go on is a DNA-double-helix of criss-crossing hope and frustration.
There is no GPS all-highways “quickest way there” on this trip. You will be off the beaten track, on the side roads, taking a million detours and wrong turns that look like right turns, and then you’re right back where you started. Your air-conditioning will break, you will hit every pothole you see and many you don’t, and you will run out of gas.
Then you will get out of the car and trudge through the mud on foot, fall into a ditch, climb out, and keep going.
And through it all, you will keep thinking that the rainbow is waiting just over the next hill … only to find out, more often than not, that it is not a rainbow; it is a torrential rainstorm. With hail.
Here’s a description of a typical road-trip for us as we travelled on our journeys:
1. They’re telling me he has [… insert diagnosis here …].
2. (Depending on where you are with this …. ) Either – “F*ck you!” or “Thank God! Now it all makes sense!” (See above. We’ll follow the “Thank God!” path for now, and address the “F*ck you!” path at another point.)
3. Now all I need to do is take him/her to the […insert type of therapy here …] and/or cut out [… insert food/environmental factor here…] and/or give him/her […insert meds here…]. That is the answer to everything and all his/her/my/our problems are solved!!! Hallelujah!!!!!!!
4. Ummm … not so much.
5. Rinse and repeat.
Are we there yet?
(Note: This is assuming that you have the time and the money to go to all the specialists, get all the tests, and buy all the meds. This may not necessarily be the case, as we well know, and will discuss at a future point.)
Here’s the thing: As much as we may not like to admit it – because we all want to find ways to “fix” things and make them better – sometimes the only thing that is going to make it better is time … and there’s not much of anything at all that will change the course of the journey in the process.
What if you knew that before you started out on your journey?
What would you pack?
And who would you want to join you on the trip?
We will make one recommendation with regard to travel companions. (OK, it’s a lot more than one … but this is what has gotten us through.)
Look for people whose shoes are muddy, too.
Look for people who are walking along the same rocky road.
Look for people who will make you LAUGH!
And look for people who will cry with you.
Look for people who won’t tell you that it’s your fault that the road is rocky, or that what you really need to do is clean your shoes and just get back on the highway (because don’t you know that it’s just that simple?)
The truth is, there is no highway when it comes to issues; there is only a path … or is there even that? As the Spanish poet Antonio Machado said,
“Traveller, there is no path. The path is made by walking.”
Fabulous! Way to go! That’s what we need,honest feelings ,great insights,
opportunities to discover a new path within ourselves,as we share with integrity from the heart!
Isn’t this love?
I love you and support and treasure this adventure!
Great post, Ruth!
So I thought if I read this the fifth time, I could do so without crying. I did it, but barely. I am just starting on the journey. My special kid is almost 4. I am in the Thank God club. I have read more books, posts, blogs about SPD and related topics in the last 10 months than everything I’ve read in the past 10 years. I know deep down that we will be dealing with this for a long time to come but I can’t seem to stop myself from doing everything you mention here. We have been lucky that we can afford the therapies. I just want to make all of her pain go away. I am hopeful that I can one day find a travel companion. Until then I will rely on your posts to provide the laughs.
Oh my gosh, you made me cry! (And smile at the same time!) I empathize so much with your struggle and how you’re feeling. Please know that you are an AWESOME mom and your daughter will be fine! And you will find great travel companions along the way whose shoes are muddy too, and who will make you laugh and be that all-important understanding shoulder to cry on … and we are so glad we can be part on that group for you.
Welcome to the club! You know what? I totally know how you feel! Some days feel so overwhelming and just unbearable but you are going to be FINE! Better than FINE! My hope for you is that you can pull back and see the forest from the trees! So many of these issues are developmental and they will fall by the wayside and you will literally forget about them. You are doing an amazing job! Hang in there!