Summer

I'm struggling with this summer. I miss quiet, and I miss being stuck in my house because it's below freezing and who really wants to go out in that mess. I miss my kids actually wanting to snuggle in bed and read or play board games. I miss hanging out with Isabella. She dashes out the door in the morning and runs two houses over to play with her friend every evening. Mainly, I miss togetherness, because it feels like we are separate this summer, and it's driving me a little crazy. Don't get me wrong, I love sitting outside and I love not having to bundle up in layers of bulky winter gear, but our nightly family dinners are rushed because the kids can't wait to get back outside and bedtime is incredibly late because the fireflies just haven't gotten my memo to turn out their lights at a reasonable hour! And no, I really can't deny the catching of fireflies because Isabella, already in pajamas and past the point of being tucked into bed, tells me they are calling for her. The fireflies will not leave my daughter alone! And then, Isaac hears all of this debate about firefly catching and he chimes in, "Me too! Mom, mom, mom, me catch fireflies too!". A year ago he couldn't put all of those words together, so out they go, cupping one firefly after another in tiny hands. 

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The last of our vacation pictures: 

*Isabella turned seven. To me this is unbelievable. It sounds completely ridiculous that I should be surprised that she is seven, but it's also completely ridiculous that every single week I am surprised and annoyed that I have to wash and iron all of Walter's clothes...again. And every single day I am annoyed that I have to clean my house...again. Why? I must be in denial. 

*Every time we say, "Who wants a hamburger?" or "Who wants a donut?" Isaac shouts, "Me, me, me!" Sips of water from a sippy cup and reluctantly putting a Cheerio to his lips--this is the progress we have made. Actually, the drinking of water, is quite a significant gain.

*Next week I am attending a writer's retreat. My friend asked if I would facilitate a discussion and I chose the topic, Writing for Healing. I am planning to discuss how reflection in the form of writing (journaling, prayer, poetry--any written form) can aide in one's processing of emotions and feelings. This blog has been an opportunity for me to share my struggles and joys in raising a son with special needs. I believe God uses many avenues for healing, and in my life, He compels me to write, and I look forward to discussing that with other writers and hear their own experiences. If you're interested in attending (women only), there are a few spots left, so feel free to contact me.

*Isabella's end of year homeschool evaluation went really well. Now that all of the paperwork is in the mail, we're just waiting to hear that we are approved for another year of home education. Even though Isabella says she never gets a break from school, after almost two months off, we began our school year on Monday. We are taking a fairly different approach to learning this year, which I will share in another post.

*Isaac's speech is exploding by the day. One morning as he stood in his room, he said, "Mom, mom, mom, you help me choose new shirt."

I think after next week, our summer is going to finally slow down. We had our trip to North Carolina, two trips to Columbus, family in town several times and business trips for Walter. I'm done! At least the weather has been amazing, and even though I miss that togetherness I wrote about, I do love the fact that my kids play outside all day and find so many ways to explore and be creative in our own backyard.

Six to Eight Weeks? Try, Three Years.

On Sunday I was talking with my mom and reflecting back on our journey with Isaac, and it hit me that I have finally found my stride in this world of special needs. It has taken three years, almost four, actually, but here I am, more awake than ever. I've spent the last three years tired with my eyes half open. That's not to say I am bursting with energy, because I'm not, but I'm happier with the energy that I do have. 

When I was pregnant with Isabella, other parents used to tell me: Just give it six to eight weeks, and things will get better! Before she was born, I had no idea what they were talking about. Then she was born and, well, I was in the club and they were right, around eight weeks things got better and I found my footing as a new mom.

That wasn't the case with Isaac. At eight weeks we found out that instead of needing a laproscopic surgery that would require a very small incision into his skull and a very short surgery, he would need a full blown cranial vault reconstruction and orbital advancement which would require an incision going all the way from ear to ear, and would be a six to eight hour surgery...but actually ended up being a twelve hour surgery. Add to that the fact that he spent almost all of his waking hours screaming, or crying (I'm sure you know the difference if you're a parent). The screaming went on for over two years.

I feel like due to his medical history, I've bonded and re-bonded so many times over the past few years with Isaac, that I know him inside and out. I have probably grown to over-calculated his needs or responses to situations and I'm just beginning to loosen the reigns and give up a little bit of control at a time. Preschool has helped a lot. I know that I can leave him in a safe place and he will be able to manage just fine without me. But I am always so eager to pick him up from school because he has grown from a screamer, to a really funny little guy.

Maybe when special needs becomes a household word in your home, it takes three years, instead of six to eight weeks to find your ground. For the most part, we have our plan, we know what appointments are necessary and what goals need to be met. This morning as I was talking with a mom in the waiting room at Isaac's therapy appointment about friendship among children who have special needs, I shared that I worry about the future for Isaac and whether or not he will be accepted. I told her how much I love to see that his preschool classmates interact with him and get excited to see him join the class in the morning, but I don't know what that will look like in five or ten years. Conversations and topics like that, still bring strong emotions to the surface.

I never thought I would love to live in a bubble. But I love the safe bubble my home provides for me and for Isaac. In our house, I forget that he has developmental delays, and I forget that a three year old not using his mouth to eat is abnormal, and I forget that he's almost four and I'm still changing his diaper. Within these walls the differences aren't as apparent.

Last week, in pictures...

"When I grow up, I want to be an artist and make my masterpiece just like this. But I'll have to ask the director at the art museum if it's okay for me to make my masterpiece this way." 

"Isaac, we're birders, so we're going to look for birds."
"Okay, Beeda."
"Isaac, I have to go to the bathroom. Let me know if you see any birds!"
"Okay, Beeda!" 
...."See bird! Me see bird!"
"You saw a bird? I didn't get to the see the bird! I'll never see a bird!" and so begins the crying. 

If you're new to special needs, and you feel like you're drowning, it will get better. Maybe it will take only a few months for you, or maybe five years instead of three, but you'll find your ground. And I guarantee you will be stronger than you ever thought possible.