For a good portion of Champion’s life, I’ve allowed discouragement to reign when it comes to getting out and enjoying life with him.
It’s a lot of work to get places with him (Meghan gave a very good picture of what its like here) and sleep deprivation has always been my go to excuse.
The past few weeks though sleep has been getting better around here, which means I have more energy to actually do fun things, things outside of going to therapies and doctor appointments.
For a long time now I’ve told myself that once I started getting more sleep we’d go enjoy life a bit more. Well now that sleep has somewhat returned to our house, I still find myself making excuses.
For too long I’ve been stuck in this place with a discouraged mindset.
Discouraged by Champion’s diagnosis, discouraged by how hard it is to go places with him, discouraged by not having very many friends to enjoy life with (somewhat self-inflicted isolation has been happening here). I’ve been living discouraged by whatever excuse I can come up with at that moment, as I continually decide to let life pass right on by.
Then last week Paula left this comment on my post about special needs parenting being hard. And I couldn’t get these five words of hers out of my head, “I refuse to feel guilty.”
Those words stuck with me. The more that I mulled them over, the more I began to hear them as “I refuse to be discouraged” , the thing that has been holding me back, the thing I need to refuse.
I need to refuse to continue to allow my view of Champion’s diagnosis and the very real limitations that are a part of our lives to dominate and deflate our family’s ability to have fun. I need to refuse to allow discouragement to steal Champion’s childhood from him, and from me. I need to refuse to allow discouragement about the energy and effort having a little fun will drain and take from me to be the deciding factor in my decisions to not participate fully in life.
I need to refuse discouragement.
So this is my new resolve: I refuse to be discouraged.
We will have fun, enjoy life, and get out and about in spite of. We will make good memories together as a family. We will not let life pass us by.
Sure it might take a good amount of effort to get going. Sure, its hard to come out of isolation and build new friendships. Sure it’s easier for me to keep coming up with excuses as to why we can’t than it is to just go and do.
But I’m ready. I’m ready to refuse discouragement, to cast it down every single day till refusing it becomes a part of me, just like deciding to accept discouragement made it a part of me over the last few years.
I’m ready to get out and really enjoy life with this beautiful son that I’ve been incredibly blessed to mother.
This past Sunday evening we had our first successful, unplanned, spontaneous outing as a family. Champion was on a break from his feeding so we jumped in the car and got a yummy decadent treat of frozen yogurt. It was really fun and invigorating I must say.
Even though it was just a trip to get some yogurt, it felt like more than that. It felt like it was the beginning of us throwing off the weight of discouragement that we have been allowing to rule us for so long and instead we were saying yes to enjoying life.
(I really liked this sign and wanted to fit the cherry on top concept in some way so I tried, but this last line is all I could do 🙂 )
So here’s to refusing discouragement and instead choosing life with all the sweetness of a cherry on top!
Let’s Talk: What thoughts, attitudes etc do you find yourself needing to refuse? How have you dealt with discouragement?
Linking up with: Pour Your Heart Out
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There was so much in what you wrote about how I used to feel when our son, Robbie, was much younger (he is 34 now). Just the thought of loading him up in the car, messing up his schedule, etc made most outings undesirable for us. In addition, he wasn’t really into long car rides, changes in his schedule, and going to unfamiliar places. We (as you also mentioned) began to isolate ourselves from our close friends….they tried hard to be supportive, but our closest friends had a child just a few months younger than Robbie and it was almost painful for us to watch him develop “normally”, while each year the gap between Robbie and normal became more and more obvious. When friends had babies, it was all I could do to visit them in the hospital. It just hurt too much and I questioned to myself why their baby was perfect and our’s wasn’t. We quit attending church because people who kept the nursery weren’t really comfortable about taking care of a drooling 4 year old whose speech couldn’t be understood and who didn’t really know how to play with the other children. These people weren’t mean; they just had an understandable fear of the unknown. But it still hurt.
All of this to say that I am so glad you have decided to refuse discouragement! I was too busy feeling sorry for myself in those days to even think that way. By choosing the route you have, you are allowing yourself to take Champion to public places, on family outings, to the movie, to the beach…all the places that we were too timid to try. As my husband says NOW, who cares what other people think? Even at Robbie’s age, it’s still a crapshoot….if we take him grocery shopping, he wants to push the cart and speaks to every single person he sees (“Hi, my name is Robbie. What’s your name?”). We find if we take him to the same places over and over (for instance, a certain convenience store) the clerks there get to know him and when he goes in they say, “It’s Robbie! Hi Robbie!” and he feels like a million dollars. My biggest regret is that we didn’t do it years ago. We are still learning, even at our advanced ages! LOL
Champion (love that name!) is absolutely a cutie and I love his smile. He is lucky to have parents who love him so deeply and who want to make him the best he can be!
Thank you so much for sharing Paula! It always feel really good to me to know that I’m not alone in how I feel, the isolation, quitting church (working on getting back there now) and just so many of the other things you mentioned. This is really good for me to read to help me to remain encouraged and to keep getting out and about and not slip back into discouragement.
I’m really glad you enjoy reading my blog. I enjoy reading your comments!
I know EXACTLY how you feel. There are times when I feel like I’m not being fair to my daughter (who is 6 and typically developing) because it’s just too much work to take my son (age 7) out and about. But I’m also not being fair to myself if I just stay in the house. Yes, it IS a lot of work to go somewhere rather simple, but it’s worth it (as you found when you got to go get yogurt). I wrote a post about my difficulties going places with our son (http://www.notjustanyone.org/2013/07/09/bridges/)
I’m so glad you are refusing to be discouraged! Keep making that choice…it will keep you going and enjoying life despite how difficult it is! Loved reading this post!
I am finding it is really worth it. Very challenging but I’m with you, its just not fair to allow the difficulty of it to keep us from enjoying life. Thanks for sharing the link to your experience with the bridge also, it looks like you guys had a ball playing on the bridge and that it was a really good moment and memory for you family!
What a wonderful attitude to adopt!
Thanks Shell! I’m finding its definitely a decision I have to make daily.
I must admit that I do have my discouraging moments. The longer I sat at home, the harder it was for me to get out and go. Sometimes even still, I prefer top be the one who stays home. I have to fight it. It’s really hard (and dangerous) taking a 140 pound two year old who can instantly go into a kicking and screaming melt down out in public, yet it’s in our nature to never give up trying!
I found that to, the more I stayed inside and isolated the easier it became to just remain there in that place. Even with how challenging your situation is, I am glad that you are fighting the discouragement also. Its encouraging to hear of you never giving up trying!
I know that feeling of discouragement. I get discouraged when handling behavior. For us, it can be frustrating to feel like we’re getting nowhere. I wrote about it here: http://embracingthespectrum.blogspot.com/2013/07/my-explosive-child.html
We’re still struggling with the yelling and self-injury and hitting. But I refuse to give up. I refuse to let go. I refuse say, “this is just the way it’s going to be.” It’s going to get better. It will. I will not give in. I will not get discouraged, either.
Thank you for sharing your experience with your son Teresa. I read it and as one commenter on your post said thank you for being so honest. I admire and am encouraged by your attitude to not give up and I think your perseverance is going to really benefit your family, even though I know its so very hard.