Sensory Sunday

Getting sensory kids dressed is never simple or easy. But when you are trying to get kids ready for church, it somehow makes everything more complicated. This morning was slightly easier than Friday, but today I wanted to get somewhere by a certain time. Not a good situation. 

My youngest son usually has trouble with pants; the waistband bothers his tummy. So, he is very picky about what goes around his belly. Today, after convincing him to wear clothes (as opposed to pajamas) to church, the pants went on easily. It was the shirt that didn't work. Once I buttoned the sleeves, he couldn't stand the sensation of the cuffs on his wrists. So, we tried a few different shirts before finding one he could tolerate. 

My youngest daughter usually struggles with shoes. And she was true to form today. Her shoes didn't fit. They were shoes she picked out. So, she decided she didn't want to go to church. I gave her the option of wearing shoes or going barefoot. She didn't have the option of staying home. So, she found shoes that DID fit. They were fluorescent orange, with bright pink buckles; not exactly a good color match with a red and black dress. But, I figured shoes were better than nothing. We headed off to church. 

Barely out of the car, my sweet girl began to meltdown, because of her shoes. Again, she demanded to go home. Again, I gave her the option of going barefoot. Her daddy offered to carry her. She refused. All she could think about was the discomfort of her shoes. Panic, induced by the overwhelming input from her uncomfortable shoes, brought on tears (in the girl, not the parent). Finally, we were able to get her inside. Finally, both kids went to their classes and we went to church, albeit thirty minutes late and rather frazzled. But we made it. 

Some days, I don't have the energy for such challenges. Some days, I simply want to get kids up, get them dressed without difficulty, to be able to walk out the door when it's time to leave, and not have to think twice about sensory issues. That is not my life. My children will always be "sensory kids." We can help them in some way. We can provide them with a rich daily sensory diet, we can help them learn to accommodate their most challenging sensory issues, we can help them achieve a high level of function in a world that can so often be overwhelming. But it is tiring, emotionally and mentally. And some days I just don't want to do it anymore.  

Melancholy

Maybe it is because I am not sleeping well, or maybe because of this crazy diet we are on, or maybe because life is slowing down and I actually have time to think, for the first time in over two years. Whatever the reason, I have been contemplating life. Somehow, that tends to take me back over mistakes I have made, or through situations I wish I could change. Such was the case last night; exhausted and ready for bed early, I wasn't able to get to bed until I was past that early window for sleeping. So, I stayed awake, for several hours. Before the night was over, I had wandered to a very dark place, thinking of friends who no longer consider me a friend, and reviewing all the times throughout my life when I had been rejected. Like I said, it was a very dark place. 

By God's grace, instead of meditating on those unpleasant awful memories, I cried out to Jesus, and focused on what was true; no matter who rejects me here on Earth, God promises to never leave me or forsake me (Heb 13), I am His name workmanship (Eph 2:10), and I am loved, not only by God, but by my family, too. 

Today, that melancholy has clung to me like mist on a foggy morning. Adding the challenges of life, it has been a less-than-stellar day, made worse by a migraine and malaise, most likely triggered by die-off from the GAPS intro diet (which I could have prevented, if I was more careful). 

Taking some time from the daily grind in my house, I slipped away to "detox," both literally and figuratively. As I was pouring my heart out to the Lord, He reminded me of what I need to do in times like these; keep my crown on!! 

Since God gave me that principle (which I thought was just a clever topic for speaking) it has amazed me how He has used it to encourage me. God has adopted me into His family. I am a daughter of The King. What a treasure?! What a precious reminder. No matter what happens in life, I can choose to keep my crown on. 

Unfortunately, it doesn't take away the pain of being rejected, nor does it magically restore broken relationships or undo mistakes. But, it gives me the grace not to be defined by these realities. It gives me "wind beneath my wings" to soar above my circumstances and keep my eyes on Jesus. 

Wow. The "detox" really helped, at least with the melancholy mood. It didn't take away my headache, or renew my strength and vitality completely, but I am SO thankful for God reminding me, again, who I am, and where my focus needs to be. God is so good!!

Worst Mother's Day. Ever.

Yesterday was Mother's Day, and I'm pretty sure it was my worst Mother's Day, ever. A number of factors came together in a kind of "perfect storm" to make the day less than I'd hoped for or expected. And my family tried; they really did. But, it was still a pretty bummer of a day; or at least it felt that way to me.

Having returned late the evening before from an amazing "mountain top" experience, the day started too early; I was exhausted. And having dropped several NOT subtle hints about what I wanted for Mother's Day (even buying some of the materials and leaving them conveniently located on the table), I had some expectations about what I would be receiving. According to more than one reputable source, expectations are premeditated disappointments. Yes. I was disappointed.

As we headed to church (late, even for the "late" service), the cloak of disappointment hung heavy on my shoulders. And, with little notice from my family, tears slowly slipped down my cheeks.

Barely able to exchange simple greetings with fellow church members, I couldn't participate in worship; tears were too close to spilling again.

Then God reminded me of what I'd shared at a ladies' tea just the day before; "Keep your crown on." It was a reference to the idea that we all wear hats of various shapes and colors. The world tries to force us to wear hats that God never intended; dunce caps with words like "failure" and "disappointment" blazoned across them. But, for those of us who have been adopted in to God's family (Eph 2:11-19), no matter what hat the world tries to force us to wear, we are princes and princesses, and we wear a crown. It is our choice whether to keep that crown on when life tries to cram one of those dunce hats on our heads, or not. And yesterday, I was wearing the wrong hat.


So, in the midst of the worship service, surrounded by dozens of people, tears once again spilled over (I hate to cry in front of people!!) as I realized how desperately I needed to take my own advice.

I wish I could say the day suddenly and magically improved; it didn't. I still struggled with my attitude. I was still disappointed that the box of supplies I'd purchased sat unopened on the basement table. I still didn't really want to celebrate Mother's Day, with its blatant reminders of my failures as a mom. Honestly, more than anything, I wanted to run away from home! But, as my family rallied around me, and later, as my husband cared for our young son so I could get some desperately needed sleep (which was probably the biggest reason for my struggles yesterday), I was reminded of all the reasons I have to be thankful. No, it wasn't the perfect Mother's Day. No, I didn't get what I wanted (not even that coveted picture with my children nestled around me - I got this, instead), 

or even what I'd asked for (which was this). Instead, I was given a really powerful opportunity to practice what I'd been preaching (just the day before), and the humbling reminder of how desperately I need a savior.

Matthew West has a song out right now that has really been ministering to my heart as I struggle with keeping my crown on. Check it out here. 

If you do visit Matthew West's site, I'd love to hear from you; please come back and post your thoughts.

Two Weeks of Hell, or Not

For whatever reason, I sat down with my teenage daughter, to watch a little tv before heading to bed. We don't have regular tv, like I had when I was a kid. No, we have Netflix, and can watch whatever we choose, and there are probably thousands of choices. The selection was a documentary on the (then) two (now three) week selection process to be part of the Army's Green Berets.

Wow, was it intense. Not only have I never been in the military, I can tell you without thinking twice that I DO NOT have what it takes to be a Green Beret, nor have I ever dreamed of anything remotely resembling that kind of , torture, torment, training, experience. A young man we knew survived the selection process (which made watching the program more interesting), but he decided it wasn't what he wanted to do. Even so, my respect for him, and all the soldiers in the Special Forces, has gone up significantly

I realized, watching that documentary on the process by which the Army selects soldiers who can train (for a year!) to wear the coveted Green Beret, that motherhood is also pretty intense. Now don't get me wrong; I'm NOT saying that mothers qualify for the Special Forces, nor am I suggesting that parenting is anything at all like combat, where people (who want to kill you) are shooting real bullets right at you (because they don't just want to kill you, they are actively trying to kill you). It is definitely not comparable on so many levels.

But, in some ways, it is. Mothers understand sleep deprivation. Mothers understand stress, being pushed to (and beyond) their limits. Just when you think you can't go on another step, someone is crying, or someone is puking (on you), or the washing machine dumps gallons of water all over your floor, and you have to take care of it. Mothering is an exercise in endurance, if ever there was one. And, at the end of all your efforts, your children (until they become parents themselves) have no clue what it has taken for you to get them to that point alive.

The last sixteen (plus) months have been pretty intense. If I had a choice, I certainly wouldn't volunteer for what I've been through (unlike the amazing men who volunteer for the Special Forces selection process), but, as I look back, I'm thankful for what God has done in my life. It has been good (though miserable), and life-changing.

I do not have what it takes to serve in the Special Forces of the US Army. I have great admiration for each and every person who does; even more so after watching that documentary. What I do have is the confidence that God will give me what I need, even if that means dealing with crying children until the early hours of the morning, cleaning up puke (again), or taking one more step in this journey through the desert. I know, because He has, and that is a very good thing.

Hard lesson learned

I love camping. It is truly one of my favorite things to do. I love it so much that I have camped my way across the country, twice (and I was pregnant with babies number five and eight, respectively)! We camped all the way home from Alaska, too. After the last fifteen months, though, I think my camping career is going to be put on hold for a while. Managing my two younges at home is stressful enough; add the challenges of begin away from home, plus the extra effort required for camping, and you have a mess. What once brought refreshment and joy now simply brings exhaustion.


For the sake of my sanity, and to protect the innocent, I'll spare you the details. Just imagine the worst camping trip ever, then multiply it by a very stressed out mama, unusually hot AND cold weather, unrealistic expectations (by that stressed out mama), and eight children (two who need structure, don't do well with changes, and have physical challenges); you have a perfect storm!

The experience wasn't a total wash, however. I learned some very valuable lessons. You may have learned these quite some time ago, and not have a clue why it's taken me so long. My explanation? I am a slow learner, and I (generally) only learn from experience. Painful experience. So, here are the lessons I've learned:

• camping when exhausted is a bad idea
• camping with special-needs kids can be extra stressful (especially with two kids who fall more than the average bear, and you are cooking around a campfire), even if you've camped with them before
• camping after an incredibly stressful year is incredibly stupid and should not be attempted by the faint-of-heart  anyone!
• when you go camping under the above conditions, don't expect to have fun, and don't expect people (even the ones you are camping with) to understand why you are not having fun.

After the worst camping trip ever, I have made a decision; I am not going camping again, for a long, long, LONG time. It is just too hard. I've also learned something else; disappointment and adjusted expectations are the harsh realities of my new life. It is a hard lesson learned the hard way. But, now it is learned, along with a few other valuable lessons. Though God has me on a difficult journey through the desert, I am planning to do the rest of it in the comfort of my own home!

Renewing My Strength

Weary; someone used that word recently to describe how they were feeling. Not "tired;" they said they were weary. I can relate. Though my situation has improved greatly over the last few months (meaning I am doing more than simply surviving), I have by no means recovered from the struggles or stress of the last eighteen months.

According to the free online Merriam-Webster dictionary, weary means "exhausted in strength, endurance, vigor, or freshness" or "having one's patience, tolerance, or pleasure exhausted." However you define it, the indication is you are plain worn out.

That word describes how I feel; worn out.

The cries and struggles of my two youngest have drained me dryer than I imagined one could be drained. Simple tasks can feel overwhelming; sorting folded clothes for kids to put away or planning a menu (which I've done for years) is almost too much. I hate feeling like this. But, I do.

So, when a verse came to mind earlier this evening, I was very excited. It isn't a solution, per se, but rather an refreshing new perspective of a passage I've known for a very long time.

Isaiah 40:28 says God does not faint or grow weary. Instead, "He gives power to the faint, and to him who has no might, He increases strength." (Isaiah 40:29 ESV) Isaiah goes on to say, "Even youths shall faint and be weary, and young men shall fall exhausted, but those who wait upon the LORD shall renew their strength..." (Isaiah 40:31a  ESV).

It hit me; this verse isn't just (or primarily) about overcoming, like I've always thought. It is much more complex and precious. Though God doesn't grow weary, He understands that I do. Waiting on Him means my strength can be renewed. Why do I need my strength renewed if it isn't ebbing? This is written to people who are weary. I am weary. I can relate. And, God can help. What a comfort.

Streams in the Desert

Isaiah 35:4-7 is a familiar passage. I have heard it before, probably many times. But for some reason it leapt off the page at me when I read it a few days ago. In the English Standard Version, it reads "Say to those who have an anxious heart, "Be strong; fear not! Your God will come...He will come and save you...For waters break forth in the wilderness, and streams in the desert; the burning sand shall become a pool, and the thirsty ground springs of water..."


It is kind of funny; I don't usually picture streams in deserts. They are dry, dusty places, without much rain (the qualification as a "desert" is based on rainfall, or the lack of it) and long distances between pools. Oases exist, but they are not common. And God is speaking to a people who understand deserts. The picture He paints is very clear, and powerful; God will save His people, and the desert in which they find themselves will be transformed. Wow; what an amazing picture!!

For me, the even more amazing part is that I've been experiencing it lately. God has not left me alone in this desert sojourn. Many wonderful people have come alongside me, through prayer, and other more practical methods (thank you Erica and Cynde). A dear friend, who does prayer counseling, spent an afternoon with me recently, and it was incredibly powerful. Since that time, my experience has been more like walking by the streams of living water than stumbling through a dry, dusty desert.

The funny part is, my life hasn't really changed. In addition to my two special-needs kids, one of my girls recently broke her ankle, for the second time in six months ( just weeks after corrective surgery!) and has some serious dietary deficiencies (she may also need major surgery on both her ankles), I spent the night (literally) in the ER with my five year old, and my oldest daughter apparently needs surgery to correct hip dysplasia. The saga with our youngest continues; a possible immune deficiency and allergies to common foods (dairy and eggs) have further complicated an already challenging situation. Yet, God is providing me with streams in this desert!

Don't get me wrong; my days are not full of beautiful scenes fit to inspire Norman Rockwell paintings. Laundry still piles up along the streams in my desert, and I get so tired of kids crying. Dinner still has to be set on the table (which requires making it, ahead of time), toilets still need to be cleaned, and mildew still grows in my shower. But, God is caring for me in the midst of this crazy time. He is tending my heart, bringing encouragement, and helping me see that I'm not alone, even when it feels like I am. This journey is still lonely, but I realize that the trail God has set before me parallels a stream, His stream, and from it I can draw refreshment, take courage, and journey for another day.

Taking the Next Step (through the desert)

Someone asked me recently how my day was going. The question caught me unprepared; I honestly didn't know. But, the question got me thinking; how was my day going? So, I stopped to think about it. Kids were crying, but only one at a time. My son was asleep (and he doesn't sleep well at all), I'd started a load of laundry, dressed and changed two kids, put out a fire (literally), and fed my kids. Plus, my hubby was coming home that night, and I had recovered from being sick. So, at that point, it had been a good day.  Unfortunately, things went downhill at that point.

Though it isn't worth detailing, I was discouraged and downtrodden, beat down by the daily battle to raise eight children (two with developmental delays), manage a busy home, and keep my mind. The lure to just stop was very tempting, though all my attempts to submit a resignation have been futile; God doesn't work that way.

So, I got back on my feet and took one more step. Taking that step was huge; my situation didn't change, but my attitude did. And, I could again look back over the day and focus on the highlights, realizing that even with the challenges and difficulties, the highlights outweighed the low points, and I really did have a good day.

Sometimes the hardest part of parenting, or life, is to take that next step, the one that comes after falling down AGAIN! Instead of focusing on the failures and falls, choosing to focus on the successes, no matter how small they may seem. So, I'm choosing to celebrate the successes (kids got three meals, some laundry did get done, and everyone got dressed before the day was over) in spite of what seems like overwhelming failures. According to some wise person (on a card I once read), Success is "getting up once oftener than you fall down." At least for now, by that definition, I'm choosing success.

A Life Worth Celebrating

I really believe life is precious; worth celebrating. Whether big or small, young or old, neuro-typical or not, life is worth celebrating. So are milestones. You know, like birthdays and anniversaries and major accomplishments.

But, on the eve of a very significant milestone, I find myself ill-prepared, not ready to celebrate. My son turns one today. One year ago right now, I was in the hospital, working very diligently to bring this boy into the world. He didn't arrive for another twenty hours, but who is counting (besides me)?

It has been a very difficult year. Instead of being amazed at how quickly the last year has gone, we have made very slow progress; each month marked not by celebration and milestones, but by survival and sickness.

Admittedly, baby J isn't as sick as some. But I am physically, mentally, and emotionally exhausted by his needs. The energy and effort required to mount a celebration is simply not there. And that makes me sad.

Baby J will not pass this milestone uncelebrated, however. His big sisters worked on a cake, and his grandma is coming to visit in the afternoon. We won't make his favorite dinner (a long-honored family tradition), because he can't tell us what he wants. But he will eat cake and blow out candles to the tune of "Happy Birthday."

And I will have a choice; to focus on celebrating my sons first year, or on the fact that I am too tired to throw him a party. Honestly, I feel like a terrible mom for not doing a better job with birthdays in general. Instead of letting I ruin my day, however, I am going to make the most of what I've got. My son is a gift. His life is a precious treasure. And though the last year has been incredibly challenging, his is a life worth celebrating.