In case you've ever wondered...

A friend forwarded this article a little while back.
Every time I read it, it resonates with me.
Not all circumstances are similar, of course, but some of the thoughts and feelings behind them are.

She says it like it is, and she says it really really well.
If you can spare five minutes....
7 Things You Don't Know About Special Needs Parents

Why speech delays are hard on the heart...

We shared a lovely late-afternoon visit with friends the other day.
Enjoying the great outdoors, with all it's warm sunshine and springtime wonder.
When I looked around for K, she was nowhere to be found.
Hmmm, better go investigate.

I soon discovered she'd gone inside and was sitting on the step in the foyer.
I asked if she wanted to join us; she just darted back inside.
Hmmmm, perhaps she's hot...
A few minutes later I checked on her again.
Again, I asked if she wanted to join us; again she quickly turned back inside.
Hmmmm, maybe she's just not feeling socialable...
Sometimes she takes a few minutes to herself here and there, even with favorite company.
Our friends soon left and we were cleaning up and I looked inside.

Here K had been trying to get her shoes on all by herself.
When she couldn't, she simply sat. And waited.
She was distressed when she learned that our friends had left without a hug goodbye.

Why didn't you tell me!? I ask her. I lament to myself.
It's not like she physically can't tell me, but I know and I try to remember, there are times when so many building blocks of communication (even though they seem extremely simple to the rest of us) are hard to form into action. She could've put on her boots (she knows how, for the most part). She could've opened the door and said "help you." But when she gets overwhelmed, she gets stalled. And so she waits.

It's in times like these my heart simply aches to hear the words:
Mama, please help me.
Mama, this hurts.
Mama, I am happy or sad or mad or tired or hungry or WHATEVER!

I call her name - she doesn't usually answer me.
It's not like she's being rude or purposefully difficult - she simply doesn't realize that it is her turn for a response. We are teaching her, slowly but intentionally, and it takes time.

I repeat repeat repeat repeat repeat. And repeat. Annnnnd repeat.
And. Repeat.
And it's hard not to get frustrated or discouraged, and sometimes it's hard not to get short and snappy.

It's clear she's fallen down or bumped something --- but again, it's a guessing game. I go to the room where she's been in last to see if I can see a situation that has caused the stress. See if I can put the pieces together so that I know what has happened and what owie needs mending. Often times we can figure it out - other times I never know what hurts or why.

I see other kids, way younger than she is, conversing with their mamas, talking about their day, their experiences, their wants and needs. Speaking with great ease. And I am blown away. It never ceases to amaze me, this gift of communication. We don't always use it wisely :), but when we do - wow.

So many aspects of this life seem normal already, and we don't think twice about it.
Other times - it still hurts.

A Particular Kind Of Joy

I have to admit - when we wrestled with the decision of whether or not to go on and have a third baby, there was one aspect I didn't really worry fret obsess think about too much -- that stage when the younger would surpass the older in terms of developmental milestones. We knew it would happen, we accepted it from a distance, and left it at that.

I just didn't think we've enter into that stage so soon.

It is a particular kind of joy, watching our youngest daughter, now 15 months, starting to explode in her learning. Her words are accumulating on a weekly basis. Her fine motor skills are already so refined and graceful. She is in constant motion, a force to be reckoned with. It takes some getting used too!!! It is beautiful, and we celebrate each and every thing she does.

And yet, there is a tug on the heart strings. 

I recall, vividly, trying to coax these same milestones along with Sweet K. Playing with the developmental toys (there are some toys, that, if I ever see them again, it'll be too soon!!!). Repeating repeating repeating repeating.  Hand-over-hand learning, guiding her body until what came so naturally to myself, to others, came naturally to her too. Some days were ... are ... hard.

In all honesty, I wouldn't change the journey. We are head-over-heels in love with each of our three daughters as they are. However, that doesn't change the fact that sometimes there is still an ache that runs deep when I observe how the natural process of learning is effortless for some, laborious for others. 

I have often thought of learning like filling a cup with water --- 

For some, it is like turning on a tap, almost instantaneous. 

For others, it is like drawing water from a well, and it can take a lot of effort before that sweet reward is enjoyed. 

Both, however, are miracles unfolding, to be savored and enjoyed.

It still surprises me that we are beginning to wrestle through this stage already, and yet it also just seems normal for us, and adds to our sense of family adventure! But, admittedly, it is a particular kind of joy that I grapple with from time to time.

From here to there

After finding this quote, I knew I had to have it in my home.
So, I bought a cheap canvas and spent a few delightful hours with my paint and brushes :).

Sometimes I still get too focused on the skills we need to practice.
And still, sometimes I get frustrated by the process.
And sometimes it feels like we'll never get "there" from "here."

And truthfully, some skills we'll master, others will take a bit more time, and still others -- maybe not. We'll see. However, life is not about the achievements, it's about how the time is spent along the way.

Emotions

Feelings.... nothing more than ... feelings.... crooned Morris Albert back in the seventies.

This past month marked our fourth year on this journey that started off much differently than we had anticipated. And as we celebrated, I reflected on all those emotions that overwhelmed me during that first season....

Fear
From the moment there was the suspicion that something might be different, fear lodged itself deep deep within and surfaced repeatedly on a daily basis. What if.... how am I going to handle the extra responsibility.... what type of impact will medical issues have on our family.... what if I'm caught in a situation and I don't know what to do.... Questions circled around and around and around, often spinning wildly out of control. I overanalyzed every doctor visit. I dreaded appointments, but lived for each one, hoping for positive information. I found it hard to leave the kids (we had two girls at the time) even for a little while. If I did leave, and found myself running late, I had to remind myself not to panic, that 10, or even 15 minutes wouldn't make a big difference. In short, I had to learn how to be a parent all over again. Those first two years, really, were about recovering confidence that had been shattered, about facing stuff you never thought you'd have to, and finding that not only is it doable, but can be very rewarding too. Fear still comes knocking, every so often. And sometimes I even entertain it for a while. But then I remember how far we've come. And how far we'll go. And I take a deep breath and do it one day at a time.

Frustration
We have some wonderful therapists as part of our life. Primarily we have occupational, physical and speech therapy. Consequently, though, there has been tremendous focus on development, emphasizing learning and growth, and often with a nagging sense that someone was watching over my shoulder. I remember, way back at the beginning, when I was trying to figure out how all of this was going to fit into our days. It seemed so overwhelming at the time. Trying to encourage developmental play was so frustrating for both of us!!! It took me a while to realize that there is a BIG DIFFERENCE between forcing and facilitating learning. In my anxiety, I tended to the former, trying to keep things as "close to normal" as possible. Now, four years into this experience, I still get frustrated when I realize that my expectations are out of line with what is reasonable at this point. It is a learning process, for both of us.

Fatigue
An issue that we have dealt with, and it continues to be a struggle, is fatigue. It is well known that children with development issues often have problems sleeping well at night. Our little sweetie is no exception to that rule!! While the details of that are another post for a different day, it is suffice to say that learning how to absorb all of this, with very little sleep, is a challenge.

Grief
How does a parent come to terms that their child may never say their name? May never utter "I love you"? May never run like the other kids do or play one step behind because these precious little ones just don't understand the social rules? The severity of our situation is not nearly as challenging as was first predicted, for which we are thankful, but every so often we get glimpses into this ache of the heart. When our little one lags behind, or the words just won't come or there is simply something we just cannot understand. Instead of trying to absorb the whole picture (which we never know anyway!), I move through one day at a time, giving space and dignity to each sadness that comes along, and ensuring we celebrate the victories.


Love and a deep sense of joy
Our little one was only weeks old. I sat on our bed, holding her, thanking God for each special, intricate part of her being. It was not easy, this moment of acceptance. But it was beautiful and freeing. Whatever life held in store for us, we were going to do it together. I had the honor of being her mother, of participating in her life story, of witnessing a million miracles unfold that I would otherwise take for granted.

Oh, the emotions ran deep and strong, and in many ways still do.

What did you experience as awareness dawned and the unforeseen became a reality?