Sunday, October 13, 2013

Sometimes It's Just Hard

Being a special needs mom (dad, sibling, family) is just hard.  It is.  But not so much in the way that everyone imagines.  You hit your stride.  Feedings, diaper changes with cords to avoid, even suctioning, meds schedules and machines become second nature.  Just like anything else you do for a while, it just is what it is.

But the hard part is how you're "different" from what you used to be.  And sometimes, I miss it.  There is no more just jumping in the car and throwing the kid in the grocery cart. No, for us, it takes a good ten minutes to load OR unload Aaron and his equipment in the car.  That is on top of any time going or coming or shopping.  There's the trying to maneuver a fairly large wheelchair in and out of rooms, asking people to move so that you can be accommodated.  

This past week, I went to a gathering, and I got there late.  Yeah, that time it takes to load and unload, plus the general craziness of an evening with other people's schedules.  And when I got there, it was obvious that there was no way to come in, not without moving people around.  While I KNOW that every single person in that room would have been more than happy to do that, for me, it was just too much.  I stood out in the hall, trying desperately not to cry, and trying to decide how I was going to get up the energy to load him back up and go home.  And then explain when I got home that I just couldn't do this.

Another woman quickly noticed what I needed, and refused to take "no" for an answer.  In less than 30 seconds, she had things rearranged and gently, but firmly, guided me into the room.  And I was so grateful.

'Cause see, like I said above, it's not always the medical issues that make this hard (although those curve balls can really throw you).  It's the isolation, it's the memory of the carefree, independent, always-on-the-go person you used to be.

I needed this meeting, and not so much the information (although I enjoyed it).  I needed to be with other moms, other women.  I needed the chit-chat, the fellowship, the sisterhood.  And when I couldn't (because it was a "couldn't" not a "wouldn't") take those steps on my own, someone else did it for me.  And that is what sister-friends do.

After this downer of a post, I'll leave you with some fun pictures.  Aaron has been doing well.  He's been starting to retain some fluid, so I've added in another medication for a short time to help him out there.  He's actually made it through a full week of school, and then a shortened week last week because of fall break.  He LOVES it.

Hopekids is an organization we belong to that helps families experience those "normal" type of activities, movies, etc, that we just never make it to.  His shirt says: Hopekids, Restoring Hope, Transforming Lives.  And on the back it says:  Got Hope?  Love this.

We seem to have an escape artist on our hands.  Fortunately, after a long day at school, he was too tired to complete the process.


Aaron's seasonal tree. (Although, it went from 4th of July to this, oh well, sorry August).  I found two beautiful butterflies for all his angel friends.  

And watching General Conference with the family.  Such a blessing this was, what great counsel.  I love the spirit I feel when listening to these great men and woman.  I've got a goal to work with so many of these wonderful quotes and ideas.  I'll keep you posted as I get it done.

Though we may feel we are “like a broken vessel,” as the Psalmist says, we must remember, that vessel is in the hands of the divine potter.  Elder Jeffrey R. Holland


  1. What a beautiful post! It echos my feelings about why I now find this journey hard at times. Love reading your posts and I am so glad your son is doing good!

  2. I love reading your posts, especially the ones that describe my exact feelings, I don't realize I have these feelings until I read your words: when I have to go out with my son sometimes I sit in the car for several minutes mustering up physical and emotional energy. We have to be aware of everything and everyone around us--it's exhausting.
    On the happy end of things-- Aaron looks so happy!

  3. I remember all the extra prep time it took to get Lilly out of the house - even for just a stroller ride. When she died, I had all that time back. But it felt like big holes in my day. There were Lilly gaps everywhere. Some people - even family members - assumed that when she died that it would be a relief and I'd be happy to have all that time back. They were wrong. As hard as it can be in caring for them - we still want them. :) God is your strength!

  4. This "'Cause see, like I said above, it's not always the medical issues that make this hard (although those curve balls can really throw you). It's the isolation, it's the memory of the carefree, independent, always-on-the-go person you used to be. " is so well said. Many (((heart hugs))).