My apologies for the confusion in this blog update (which was posted on Tuesday, Sept. 24). In my haste to update and my flurry of thoughts, I realize what I wrote was misleading. I have amended the area of confusion and marked it (below) to clarify. Thank you for your grace!
Happy Autumn! It’s certainly feeling like Fall here in NE Ohio these days. I started transferring the summer/winter clothes last weekend but with 7 of us now, it’s no longer just a weekend project! If I complete the change over by mid-October I’ll be feeling good. 🙂
It’s been a little bit since I last updated, so this could be a doozy.
I actually drafted a post a few days ago with a video but never published it. I was having a low moment after a very dark week (last week) and just decided to leave it private…for now. I will just say that it started last Monday after a doctor’s appointment with Karolina. In the world of IEP’s, you learn to operate and think in terms of what skills and abilities your child has already mastered, is currently working to achieve, and short-term goals to come. You can’t allow yourself to think of all the things your child can’t do or may never do. Well, at an unexpected moment I was hit with that oh-so-ordinary milestone chart you receive at the end of every well-baby visit. The doctor just handed it to me, as is routine, and I just read it, as is habit. That brief skim of the paper knocked the wind out of me and was like a punch in the gut. I saw just a few points like ” should have vocabulary of 1000 words” and “uses pronouns easily, can follow simple instructions, etc.” ** These milestones are listed as the “ideal” for a typically developing 3-year old. Karolina’s vocabulary is currently 1-3 words for example.
As a parent of five children, I’ve looked at these papers dozens of times, but never got discouraged or took them too seriously if my child wasn’t mastering a certain skill set just yet. But this. Was. so. different. That paper was like a neon sign I couldn’t escape, and I wasn’t prepared for. To see the gap widening and those milestone goals drifting further away, is a hard thing to accept. It’s hard to cover in much depth in just a brief blog post. At first glance I may just seem like a paranoid parent whose child is falling a little behind but will catch up. We have been informed that is not the case, and to prepare for the possibility that Karolina may never live independently. However, miracles happen every day and medical advancements and research are changing the outlook all the time.
Because Karolina doesn’t “wear” her disability per se’ (meaning don’t instantly know she has special needs when you look at her) people often don’t know what to expect, or understand the scope of the challenges.
I feel like we’ve come a long way since K’s diagnosis, but every once in a while, I’ll have a day like last Monday. That one day turned into an entire week of feeling helpless, frustrated, and grief-stricken. I didn’t post about it because I don’t want to seem negative or dramatic, but I also don’t want to pretend that everything is perfect. So..that’s where my heart has been.
The GOOD news, is that the last week allowed for some awesome moments with the Lord that has since brought much peace. Take the blessing of this bodacious Saturday sunset:
I was gratefully gifted with a little time to go for a run. As if that wasn’t great enough, THIS was the view! It was so inspiring I had to snap a pic and share a little Instagram prayer:
of the autumn sunsets, you love us so much! What gift to witness such
beauty. Running tonight, I feel the Holy Spirit-breeze at my back,
giving strength to my stride. Father, sanctify my steps, give me a
breathless faith, and let my heart beat after You always.
Guess what else? I just happened to receive a special package in the mail (at the radio station) from a very special listener. He knows Karolina has autism and clipped several articles, and collected brochures, etc. The timing! The touching articles! His thoughtful heart! All of it was like an enormous hug. Never underestimate the power of small acts of kindness. An angel from heaven named Jim. God bless you!
The other day I was talking to the Lord and asked Him “Teach me how to master my moods.”
How is it that I’ve gotten to this stage in my life, but at times I still behave like a child when I’m in a bad mood?! If you have an answer to that, I would LOVE to hear it! I’m still trying to figure it out. 🙂
In the meantime though, the Lord did lead me to a beautiful thought from Blessed Mother Teresa. I started reading her book again “Come Be My Light” and this passage jumped out at me:
“When I see someone sad, I always think, she is refusing something to Jesus. Cheerfulness is a sign of a generous and mortified person who, forgetting all things, tries to please her God in all she does for souls. Cheerfulness is often a cloak which hides a life of sacrifice, continual union with God, fervor and generosity.”
Wow. I could ponder that for ages. Beautiful.
I hope to be back to update the blog in the next day or two, but if not, have a GREAT week, enjoy the sun and be on the lookout for God’s gifts..he loves surprises and is the Master Gift-Giver!:) #ThankyouLord