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
Showing posts with label blessings. Show all posts
Showing posts with label blessings. Show all posts
Saturday, May 19, 2012
Wednesday, September 14, 2011
Hug-A-Munk!
This past winter we were able to spend some time in Florida.
While we were gone, I created a private blog to share some of our experiences with family and friends. This is a post that I wrote about one of our adventures....
While we were gone, I created a private blog to share some of our experiences with family and friends. This is a post that I wrote about one of our adventures....
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Last Saturday, we were able to visit Epcot Centre.
It was our longest day yet. And the longest day we'll have.
Though it was long, the weather was nice and we had fun.
The biggest blessing, though, came through Sweet K and her sudden desire to hug a chipmunk!!
As I've mentioned, Sweet K just IS NOT into rides right now.
And she also is afraid of anything in a costume.
Pretty much sums up the "disney" experience :).
Anyway, Jon took Little M to some attractions while I went to go fetch my (forgotten) glasses from the van. I had the babies with me. When I got to the front gate, I realized that Jon still had my ticket, which meant walking ALLLLL the way across the park to fetch it before I could head out to the parking lot. We found Jon & Little M standing in line to say "hi" to Chip & Dale, those little disney chipmunks. Little M said "cheese," Jon took a picture, and voila. We were on our way.
Well, this is as close as she got to hugging a "munk" that day. Thanks to Grandma & Grandpa, who were also moved by this story and in the park with us that day, Little M & Sweet K each got a little chipmunk to squeeze :).
A few days later we were able to visit Animal Kingdom.
Little M brought her travel journal and was able to collect a few autographs.
Any time Sweet K moves into a new developmental phase, I get so excited! It's quite the journey with her, though I know it could be far more challenging. We are grateful things are going so well. However, it makes these moments even sweeter.
Way to Hug-A-Munk, Sweet K!!
It was our longest day yet. And the longest day we'll have.
Though it was long, the weather was nice and we had fun.
The biggest blessing, though, came through Sweet K and her sudden desire to hug a chipmunk!!
As I've mentioned, Sweet K just IS NOT into rides right now.
And she also is afraid of anything in a costume.
Pretty much sums up the "disney" experience :).
Anyway, Jon took Little M to some attractions while I went to go fetch my (forgotten) glasses from the van. I had the babies with me. When I got to the front gate, I realized that Jon still had my ticket, which meant walking ALLLLL the way across the park to fetch it before I could head out to the parking lot. We found Jon & Little M standing in line to say "hi" to Chip & Dale, those little disney chipmunks. Little M said "cheese," Jon took a picture, and voila. We were on our way.
Suddenly, I hear Sweet K talking.
Hug Munks. Peeease. Hug munk. Me. Hug Munk. HUUUUUGSS.
All this while she's squeezing her arms around herself as tight as possible.
She wanted to hug the chipmunks too!!
This was notable for a few reasons.
While her one-word vocabulary has been exploding since summer, we are waiting for her to start stringing two- and three-word combinations together (the next developmental step, typically seen around 18-24 months).
Here she was....
using her WORDS...
using them in PUBLIC....
using them in two and three word combos...
AND showing interest in doing something she DID NOT want to do before this.
My heart was full :).
To make a long story short, she repeated this over and over all the way to the van and back. When we returned to this spot, a staff person let us know that while C&D were still standing there, the line-up was closed. We could come back again tomorrow. Sweet K was disappointed and I was tempted to mow that lady over with my double stroller!! Don't mess with a Mama Bear!!
A few days later we were able to visit Animal Kingdom.
Little M brought her travel journal and was able to collect a few autographs.
 |
| Sweet K wanted to hug Tigger. But suddenly she wasn't sure it was such a good idea! |
 |
| Sweet K was okay with Eeyore... |
 |
| ... as long as he didn't get too close! |
 |
| By the time we found Winnie the Pooh, Sweet K was pretty much finished with getting close to characters. Enough was enough for one day. |
 |
| Jon passed her to me here at the last minute. You have no idea how NOT IMPRESSED she was that Goofy came to stand beside her. She was done. So was I. No more costume characters for Sweet K that day!! |
 |
| She is such a good sport about these things though. When she's had enough, she'll say DONE DONE DONE DONE. Okey dokey Sweet K. |
Way to Hug-A-Munk, Sweet K!!
Wednesday, August 10, 2011
Apples of Gold
A word aptly spoken is like
apples of gold
in settings of silver.
Proverbs 25:11
This feels so crucial, because mostly, many of us just don't want to say the wrong thing. You know. That thing. That jumps out of our mouths before we've had the chance to think it through thoroughly. That sounds insensitive, or ignorant, or just plain.... dumb.
Because we want to be helpful.
Because we've been on the receiving end of thoughtless words.
Because we just don't want to make a tough situation ... worse.
When things started to unravel around here, Jon & I took the road of being open with friends and family around us. It felt very vulnerable to share our anxieties and concerns with many other people. We discovered a beautiful net of prayer; many friends passed on our requests to their friends and because of our electronic age, we had people all over the world praying for us. Still takes my breath away.
However, it also opened us up to well-intentioned, trying-so-hard-to-be-helpful remarks. We took those as they were usually given, in love. And the rest we've slowly let go of. Recalling the many instances when I haven't said the right thing at the right time, this wasn't usually too hard!
Here were some of the gifts of words that people shared with us. Still a blessing...
Gracious Words
... I was standing in a line at our church potluck. A gracious woman from our church, who has quite a health story of her own to tell, gently spoke to me: Leah, just remember to be gracious with yourself. She had no idea how those simple words spoke so deeply to me at a time when I truly needed them. Grace ... I was sure going to need it to make it through the coming months. And permission, in some ways, to wrestle and struggle with the difference between what I knew in my head and what I felt in my heart. Much later I went to her and shared how much her words meant to me. She had no recollection of saying them. She is very humble :). I wanted her to know what a gift her kind comment had been for me.
Gracious Surprises
... It was the night before our 4-week-old daughter's MRI appointment. Neither Jon nor I had been near an MRI machine before (for which we are grateful for in more ways than one!!) and we had no idea what to expect. I was pretty much rattlin' in my bones from the anxiety of it all. And the doorbell rang. I groaned. I had no energy left for anything, let alone unexpected guests. I am so thankful I answered the door. There stood a friend, a recent acquaintance, who'd already walked the road of "different kind of blessing" for six years. She sat with us. Listened to us. Shared with us. EnCOURAGEd us. Because of her visit, I was able to sleep at night (unusual at the best of times!!) and face the coming day with a sense of we-can-do-this. I am very reserved and don't typically show up at someone's house unannounced. I am so glad she did. What a gift it was.
Not all love uses words
A very sweet couple, well into their senior years, stopped by our house one day. Only, we were eating supper and since they never rang the door bell, never said a word, we didn't know it until much later. But they left us a little gift. A single red rose, picked from their garden, gently left in a cup of water and a little card that shared their heart with us. I left that little rose out for as long as I could. It's vibrancy, delicacy and the spirit in which it was given meant much to me.
As far as I know, we've saved every email that was sent to us during that time. My intention, at some time, when I "have time" :), is to go through them and create a single document of encouragement out of them. How sweet to look back, what a gift to also share with our children when the time is appropriate. Honestly, I probably still couldn't get through them without shedding a tear a two.
As I mentioned, there are times when I find myself in a situation where there are no easy words. And these days, I'm not the fastest thinker, either :). However, I do try to practice some of the lessons I've learned through this....
Sometimes a simple statement can open up a whole world of conversation. A wow, that sounds tough or it sounds like you've had a hard week can be all it takes to stop and listen as someone shares their story.
Or
How a simple act of kindness can mean so much. Recently I was encouraged to hear of a friend who surprised her friend by visiting her in the hospital. The situation was difficult and the extra helpful presence was meaningful.
Often I find it helpful to come home and ask Jon just what he would say or do in those moments. He usually has something very insightful and helpful to impart :).
What acts of kindness, be it words, actions, prayers and so on, have made the difficult journey a little lighter?
Wednesday, July 20, 2011
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?
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?
Wednesday, July 6, 2011
"Jack"
We'll call him, "Jack." The little fellow that has captured my daughter's attention.
With a mild-moderate speech delay, our little one is not a gal of many words. Short and sweet is best, in her books :). However, even after a morning at preschool, I never fail to ask her how her day was, what things she took interest in, what the kids were doing.
You'll never know what'll come out, some day!
One particular lunch time, after a morning at preschool, I was trying to encourage her to say, "I love you." Three simple words. For those who are familiar with language delays and challenges, three words in a row is a lot! However, these particular three are delightful and encouraging, and when we hear them it'll be music to my ears!
Anyway, I was encouraging her to repeat after me.
"I. Love. You."
Smile. "Jack."
Jack!? JACK!!? Yes, I've heard this name before. He's a sweet-hearted little fellow who likes to play cars (the one-on-one worker has informed me). He's gentle and inclusive and was delighted one morning when he heard our sweet little girl say his name.
"Do you love Jack?" I ask, in a sing-song kinda voice!
"Mine." More smiles.
"Is Jack your friend?" The grin she gave was enormous. Friendship, in all it's shapes and sorts, is a beautiful thing. My heart soared.
Often often often, we pray for the friendships our children will have. Special people to enjoy life with, to swap secrets and stories, to have fun (but stay outta trouble!!!). However, for our Sweet K, I also ask that there is always someone in her corner who is willing to take life at her pace. A little slower, a little sweeter. It has blessed me time and again to see God honor that request. I know that there will likely be struggles ahead, but so far, she has always had someone who was willing to play at a level that she is comfortable with.
Evidently, Jack is one of those fine folks!! So he has a special place in our hearts, indeed!!
With a mild-moderate speech delay, our little one is not a gal of many words. Short and sweet is best, in her books :). However, even after a morning at preschool, I never fail to ask her how her day was, what things she took interest in, what the kids were doing.
You'll never know what'll come out, some day!
One particular lunch time, after a morning at preschool, I was trying to encourage her to say, "I love you." Three simple words. For those who are familiar with language delays and challenges, three words in a row is a lot! However, these particular three are delightful and encouraging, and when we hear them it'll be music to my ears!
Anyway, I was encouraging her to repeat after me.
"I. Love. You."
Smile. "Jack."
Jack!? JACK!!? Yes, I've heard this name before. He's a sweet-hearted little fellow who likes to play cars (the one-on-one worker has informed me). He's gentle and inclusive and was delighted one morning when he heard our sweet little girl say his name.
"Do you love Jack?" I ask, in a sing-song kinda voice!
"Mine." More smiles.
"Is Jack your friend?" The grin she gave was enormous. Friendship, in all it's shapes and sorts, is a beautiful thing. My heart soared.
Often often often, we pray for the friendships our children will have. Special people to enjoy life with, to swap secrets and stories, to have fun (but stay outta trouble!!!). However, for our Sweet K, I also ask that there is always someone in her corner who is willing to take life at her pace. A little slower, a little sweeter. It has blessed me time and again to see God honor that request. I know that there will likely be struggles ahead, but so far, she has always had someone who was willing to play at a level that she is comfortable with.
Evidently, Jack is one of those fine folks!! So he has a special place in our hearts, indeed!!
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