My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Thursday, July 5, 2012

The Miss makes all the Difference

by Joyce:  It's been awhile since I've written.  We have been letting Sarah's "A Week in the Life of Me" series take priority. I think it really does tell the story so well from her perspective.  What you see, is what you get. For her, life just is. She doesn't over process.  She doesn't over analyze. She doesn't wallow over what is not.  She doesn't question why things are not what her fantasy wishes they were. She doesn't get caught up in the daily drama that can often define the direction life takes.  And truthfully, I am jealous at times. But that is not really the point of this post.

It's summer. My husband and I have been receiving invitations to special events.  Just this past weekend we could have been in Atlanta.  We were not. And that really bothered me.  We talked about it until we could talk no more.  We just could not make it happen.  The crazy thing is, we finally have gotten to the point where we could afford the plane tickets, the hotel stay, a little sight seeing on the side.  Our businesses now have the staffing in place that they could survive without us for a few days.  So what's the problem?  Sarah. 

It's not that SHE is the problem.  It is the logistics of caring for Sarah while we are gone.  We have very few resources for back up.  Our oldest son has moved out. He is twenty four. Working full-time. Engaged. He deserves time for himself. Still, I know if TJ and Julie were in town, they would have dropped everything they were doing and would have stayed with her.  It just so happened Julie's sister was getting married in Nicaragua and it is impossible to be in two places at once.  Our youngest son is fifteen.  He is too young to shoulder the responsibility of caring for his sister while we are traveling.  My parents are just not strong enough for the requirements of caring for Sarah anymore.  I was racking my brain trying to come up with a solution. I encouraged my husband to go alone. He would have no part of it.  He said we are a trio. Plain and simple.

If you do not have a child with medically fragile conditions, I know what you might be thinking.  Hire someone.  Who, I ask?  We've been down that route a few times. Utilizing a few different sources.  One respite worker arrived so smokey, I nearly gagged (even though we requested a non-smoker.)  From experience we know smoke, even second hand, quickly sends Sarah into a spiraling asthma episode, which could result in her being retrached. So I did only what was necessary and came back home within a few minutes. We hired an RN once. At a rate of $25.00 per hour x 28 hours, it's not cheap. And no sooner did our plane land in Baltimore, when my cellphone rang.  Sarah's respiration's were erratic.  The nurse was panicked. I was eight hours away while my husband was in Buffalo with our youngest at a hockey tournament.  Not a good situation.  Sarah used to go to camp. But once she became an adult, the opportunity decreased to one session a summer and not the week we needed.

Then just this week, another invitation arrived.  Sarah was jumping up and down when she saw her name...



...and I was jumping up and down with pleasure.  The inclusion of Miss Sarah Ely makes all the difference.  We thank the sender for recognizing this. Sarah is after all, nearly 23 years old. She is not a kid. In a different life she would perhaps begin to receive her own invitations. Yet in our life, we are a trio.  A very happy trio.

I write this not to be a complainer or critical of anyone, rather to educate.  If you know someone with an adult child who happens to have a developmental delay or a medical situation, are you quick to exclude them from your plans? Or do you take a moment to think before you invite?  It could make all the difference to the family you are addressing.  It has to us.

13 comments:

The VW's said...

Great lesson for those who can't possibly "get it". Have fun at your function WITH Sarah! : )

Kristen's mom said...

If only I were closer! I'd stay with Sarah in a heartbeat.
Richard and I went through the same thing, only our problem was that Kristen didn't want to go anywhere, she wanted to stay home. We finally started taking turns. Not ideal, but it worked for us. I loved seeing Sarah's smiling face on facebook this morning. I'm glad she is feeling better.

Chromosomally Enhanced said...

I love ...Trio...how perfect...thank u for this post...it gives Chad and I talking points and to help educate and prepare us for what is next...smiles

Rochelle said...

Great lesson Joyce! Thanks for sharing.

Lacey said...

Us too, if we were closer, we would take Sarah in a heartbeat!
Even with Jax so little, there is really no one I trust to watch him. My caseworker was just telling me he would get respite if he gets on the waiver. I'm not so sure there is anyone I trust to care for him. I'm just not ready to let anyone care for him except me or his Auntie Boo!

csmith said...

What a well timed post for me. There is a family at our church with a developmentally delayed daughter around Sarah's age. She loves my little girls and I having been meaning to invite her over as a "mother's helper" one day. Her mom is sure she would enjoy it, but it never occured to me that maybe these parents could use a little respite.I am going to make concrete plans with them. Also, I am sorry you missed the trip to Atlanta, but we are having a record heat wave and it is miserable here, so maybe it's a good thing :)

Talley Images said...

thank you for posting this... I wish more people realized. We dont have an adult yet, but we do have a 7 year old with Down syndrome and b/c its not very common around here, people are scared to babysit (and to be honest, we are scared to leave him for too long as well)... so our social life has been clipped, but our at home time has been richer... :)

Anonymous said...

Perfect just what I was looking for!

The Blitz said...

Hi--Do you mind if I share this on our program's facebook page? It is such a real look at being a parent to a young adult with special needs. Please let me know. I wanted your permission first. sblitzstein@jfsla.org or hamercaz.org.
Love your blog, thanks!

My name is Sarah said...

Comments from Facebook...


Dawn B. Thank you for sharing.
Thursday at 9:58am · Like.


Janet A ‎:)
Thursday at 10:21am · Like.

Karen Allen: Well said, I often feel like Randy and I are not asked / invited to a lot of things. But the truth is we are also a trio, we travel in packs of three and if my brother is not included, then I do not really care to be either.
Thursday at 11:09am · Like.


Robyn Day. Thank you for sharing.
Thursday at 2:28pm · Like.


Ellie Jacobsen Beth just recently received a wedding invitation, in her name, and I am going along as her guest. It's from a former classmate, and she was thrilled! :)

Suzie said...

I love this post. We are a trio with Lily and generally speaking we have a better time with her than without her.
Great reminder for people.

tile indianapolis said...

Great lesson for those who can't possibly "get it". Have fun at your function WITH Sarah! : )

JaybirdNWA said...

Hello Joyce, I can identify. This week my wife has been gone to be camp Doctor for a camp here in Northwest Arkansas along with 2 or our children and it has been easy for me to feel discouraged because I haven't been able to get some honey-do tasks done that I had planned because I have John to watch and take care of.