I realized after I posted yesterday that I had more to say on the topic of Community. So today, I figured that I would finish that up and then talk about what I really wanted to. But if I think about it, the two different topics are actually quite related.
I mentioned how important it was to find community in order to get support and encouragement. The one thing that I did not get into is how oftentimes, finding that community also brings you access to treatments and therapies for your child that you didn’t know even existed. I have discovered most of the treatments I have tried for my child this way. I have also discovered which ones to avoid as well. Fellow parents can tell you the pros and cons and possible issues with each therapeutic approach you are thinking about trying. This can help you immeasurably and save you time. So not only will community help you by being your emotional support, it can also be crucial to the healing and quality of life for your sweet child.
Now for what I really wanted to get into today. I have to confess that I am AWFUL at thankfulness. Meet the queen of “I wish’s” and “if only’s!” The last few months have really been rough with regards to gratitude. Up until the last few months, my child has made obvious gains and kept them. I was very frequently finding myself gushing about how she did this or that. But recently, the gains have been very minimal. Any new skills have been things that slowly developed over time and are not what I could call , “Did you see what she just did?!” moments. Those were what I was getting used to. And frankly, I think I was taking them for granted.
And then there is the house. Sigh! This house is nothing to look at, and it is very small. Truthfully, we are outgrowing the thing, and there is an issue with certain folks in the house with letting go of stuff (i.e. had a crying fit because I took all of her older sister’s unneeded plastic spoons and put them into recycling…”Mama, do you think I’ll be okay without these spoons????!!!!!” Sigh!) We are surrounded by STUFF, and it’s making me crazy! But then I only have 24 hours in a day to handle all of the tasks to be done around here, so if a reader wants to come in and help, I am waiting with open arms!
Then I see the exciting posts on Facebook about how this person’s child is doing well or I see others going on vacation, going to neat places, seeing children doing varied activities (my child just likes to throw stuffed animals…..all. day. long.) All of these things make me really bitter and jealous, and I start to be ungrateful for what I already have.
But this week, something happened. Now my eldest (M) who has special needs does not like venturing far from her music or videos. She will hang out on the front porch in summertime, but she just sits on the chair and again, makes us throw her stuffed animals. Two days ago, something totally unexpected happened. My youngest (E) was outside playing in the snow with the neighbor girl (N). M had to go to the bathroom and had a pair of long pants in her hand. Up until that point, she had been in her underwear. She never hands me her pants, so I put them on her wondering if she had just been cold. I left the room for a minute and when I came back, she was outside standing barefoot on the front porch. I got her inside and asked her if she wanted socks and shoes, and she grunted, “Eah!” (yeah) I got her suited up for outdoors, and she grabbed her stuffed animals and headed out. Ok, this was very unusual as it was, but it got even more interesting. After about 45 minutes or more on the porch, she started making her way to the stairs. She bent over to pick something up off a step and then decided to just go for it. She descended the stairs and then reached for me to help her navigate the snow and ice. You have to understand M. She has depth perception issues and wears glasses because of farsightedness and isotropia. She doesn’t go onto any surface that isn’t completely comfortable for her and smooth. Even a boundary between the floor and a carpet makes her pause. So for her to want to navigate the snow and ice was unheard of!
She held onto me and walked all the way over to where the girls were playing and then started tossing her animals. She was totally enthralled in watching the girls playing and wanted so badly to be by them that she was willing to put herself in a very uncomfortable position. N asked me if this was unusual, and I told her that she was witnessing something that I will end up putting into the calendar (and yes, onto Facebook!) to keep forever.
This situation brought my mind back to M’s teacher conference the other day. I had expressed to her how sad I had been, that M has been working on the same skills over and over again for years. I was feeling so dejected. But her teacher reminded me how in the last year, M has mostly toilet trained, begun eating solid food and is now starting to be able to drink out of a straw cup after being on a bottle for 11 years. I had been so used to the overnight, “out of the blue” changes, that I wasn’t appreciating what she was slowly working on. But those things are just as important as the “immediate” wows.
I now see that I had been taking M for granted. I have been looking at all of the negatives and not stopping to look at what I DO have. I have an intact family with two beautiful children. Though M is medically challenged, she is not acutely ill like many children with Down Syndrome can be. The kids are happy. I have a squishy cat who amuses my kids and gives massages. We have a roof over our heads that is sturdy and keeps us warm. We have central air. Who can hate central air?! We have running water and warm carpet for our feet in winter. My husband has worked hard at a job that provides us with healthy food and clothing. We are able to afford a few of my daughter’s therapeutic needs. We have two old but reliable cars. We have family and friends, and I have that community who encourages me and gives me information to help my child. Most of all, we have God. Really, we are truly Blessed. I pray that God continues to push this front and center in my mind every day that I am on this Earth.
Happy Thanksgiving, Everyone! God Bless You!