Such a Time as This

Had an interesting conversation yesterday with a new acquaintance of mine that really injected me with renewed sense of gratitude.

One thing God has been speaking to me over the years is that no matter how much at times I think that God has left me in the dust to fend for myself, he never has nor will he ever abandon me. In fact, truth is, sometimes there are things that I take for granted as, "well that's just how things are" when actually, there is no such things as "that's just how things are." We are not guaranteed that things are supposed to be one way or the other. In fact, all we have is because of God's grace and mercy.

What I'm realizing is that it is would be nearly impossible for me to wrap my mind around and comprehend just exactly how much the Lord has done for me.  In fact, I think I am probably blissfully unawares of some of the imminent dangers that the Lord has thwarted from coming my way simply because I never experienced it, so I didn't know it was coming.

I think this cartoon illustrates what I'm trying to say well:

 

I mean of course, I don't think God is ever capable of accidentally "missing one". But you get the idea.

So basically yesterday, I was having a conversation with this acquaintance when he just casually mentioned that his mom has had a series of health issues ever since she gave birth to him unexpectedly during the hottest part of the year over 20 years ago. Being a dad of an ex-preemie, my ears perked up. Unexpected birth? So I asked him what he meant. He explained to me that he was originally due in November, but he was born mid-August. Three months early, just like Alicia!

He told me that he stayed in the incubator for 10 days. "Ten days!" I exclaimed. He said, "Yeah, I know. A long time, right?" Flabbergasted I explained that Alicia was in the hospital in the incubator for four months! It was his turn to be shocked. After further discussion, we realized that the reason he was only in the hospital for 10 days was because back then Taiwan National Health Insurance was not as comprehensive as it is today. His family could only afford to keep him in the incubator for 10 days.

Wow.

One other thing about this acquaintance of mine, is that he walks with a limp. Turns out one of his legs is longer than the other and he's had the problem since he was a child. But, since info on preemie care and early intervention was not as prevalent and developed when he was young, his parents were unaware of his need for therapy until he was nearly five years old and still unable to walk. By then it was a little late for him to begin therapy and get the help that he needed, and so he ended up with a permanent limp.

After this conversation, I was just in awe. I mean, have we had a hard time? Yes! Have we had to face a slough of unanticipated trials and uphill battles? Sure! But could things have been 10 times worse? Oh, MOST definitely!

I mean, seriously, we were already so thankful for the medical insurance that brought our over $1,000,000 NT hospital bill down to only $50,000. But to think that had Alicia been born 20 years ago, we would have most likely only been able to allow her to stay in the hospital for 10 days and then what? Linda and I would have had to provide all the medical treatment and care for her at home. (On a side note, we've heard rumors that the government is considering cutting funding in preemie care so that insurance will go back to covering only 14 days of incubator usage. ARE YOU KIDDING?! Talk about sentencing these kids! But that's another soapbox for another time.)

And is it challenging and draining for Linda to schlep Alicia, her diapers, toys, bottles and formula multiple times a week to therapy? OF COURSE! But, am I grateful now for the availability of such therapy and the protocols and resources available in order to diagnose Alicia's need for said therapy so that we were able to get it so early for Alicia? OH, FOR DARN SURE.

So, Father, I'm sorry. I'm sorry that sometimes I take things for granted. I'm sorry that I think I'm entitled and that you're not doing enough. And I complain and whine that it's too hard! When, in reality, you have already done so much. Every day I'm sure there are countless things that you do for me and my family that I am quite unaware of and oblivious to.

Lord, I want to say thank you. Thank you for all the things that you have done and continue to do for us both seen and unseen, known and unknown. Thank you that nothing gets by you, and you know exactly what we need even before we are conscious of it.

Thank you for allowing Alicia to be born at a time such as this when medical information and knowledge is more developed. Thank you for providing insurance so that Alicia was able to and continues to be able to get the assistance that she needs without costing us an arm and a leg.

THANK YOU, DADDY. THANK YOU!

P.S. Here is on other amazing thing that Linda just pointed out to me after reading what I wrote above. Even if Alicia were born 20 years ago without the developed medical care and insurance, God's grace would have covered her and us even then. Things in the natural realm may have been more "difficult" or "challenging" but in the spiritual realm our God is the same God he was yesterday, today and will be tomorrow. So his grace would have been sufficient for us even Alicia were born back then. THANK YOU, LORD!

Only God knows why he had Alicia born at such a time as this. But see, that's actually the only thing that matters. God KNOWS. And he has plans for her. Plans to prosper her and not to harm her, plans to give us hope and a future.

Too Much, But HE'S MORE!

It's 4:30 a.m. By the time I finish writing this, it'll be probably closer to 5. This is about the fifth night in a row that I have not had a full night's rest. Alicia has been having trouble really sleeping soundly and has been rolling, climbing, kicking around in our bed for the past week. Before you say anything about this being the consequence of her sleeping in our bed, let me tell you, that we are quite aware. We have actually being trying a new system. 

Last week, I deconstructed her crib, removing certain parts and reassembled it into a toddler bed. Alicia's new bed is now right beside ours. For the past week, we've been rocking Alicia to sleep and then putting her in her bed. Which is great for the first three or four hours. But then for some reason, midnight or 1:00 a.m. rolls around and Alicia wakes up crying wanting to be held. By then we're exhausted, so Linda will pick her up and have her sleep with us. Which to tell you the truth, I love . . . when we actually sleep. 

However, after 5 nights of restless sleep, and one of the worst nights/mornings ever today, I gave up. I decided I needed to come up and pray. But if I am to be honest. It's hard to pray. 

I am cranky and just feeling overwhelmed. I'm feeling like, IT'S TOO MUCH, GOD! It's too much. And you might be like, "WHOA, Campbell, calm down. It's just sleeping problems. She'll get over them. It's not a big deal." But the thing is, it's not just about the sleep. It's everything!

Every time, I think we're over a hurdle, every time, I think it'll be smooth sailing from here on out, I'll get rudely jolted back to reality by some doctor prognosis, or a reminder of some special need that Alicia still has that I conveniently had let slip my mind. 

As much as I am absolutely thankful for the beautiful baby girl that we have, and that she on the whole is more healthy and normal than not, which is a miracle considering the circumstances surrounding her birth, there are still lingering issues that just continue to get deflating and disempowering.

One condition that has been on the forefront of my mind is Sensory Integration Disorder. It's one that doctors warned us about when we first brought Alicia into therapy. Actually, scratch that. I think I remember hearing about it in the hospital during an info session just a few days or weeks after Alicia was born. Except at that time, I heard the words and description, but kind of half tuned out because a) it was all in Chinese and b) I had no context at that time to really make sense of what was being described. 

Long story short, Sensory Integration Disorder is a condition where children aren't able to process or organize the sensory stimuli that they are receiving. 

The interesting thing about Sensory Integration Disorder is that there are actually those that don't really think it exists. They believe that the symptoms described are actually indicative of other developmental issues and not unique enough to give it its own diagnosis.

Regardless, I believe it exists. However, until this morning, I had a hard time really grasping exactly what it was. Thing is most of the time when Sensory Integration Disorder is talked about, they describe a child who is hypersensitive to stimuli. They cry at even the slightest touch. They get overwhelmed by noises that you and I would deem as normal. They get irritated by even the most minute of sights, sounds, smells, tastes and touch. But that wasn't Alicia. She wasn't hypersensitive. 

In fact, for the most part I felt really blessed to have such a good child. She didn't cry when she had a poopy diaper. When she got immunization shots, she'd cry for about 10 seconds and then she was fine. All things that I thought, wow, we are so blessed to have such a good one. 

Come to find out, these things might not be as good as I thought they were. Yes, Alicia, isn't hypersensitive. But as I learned from research, there is actually the other extreme of the Sensory Integration Disorder. One blogger describes it as seekers verses avoiders.

Avoiders are the hypersensitive ones. Seekers are the ones that go after stimuli as if they can't get enough. Alicia seems to fit under the latter. 

She is constantly on the move. Unless, she's strapped in a chair, or she's strapped in her carrier, she's crawling around and ...

I started writing the above at 4:30, but now a half an hour later, I'm convicted. The above was a gripe. A complaint about why I felt overwhelmed and drained. But as I was writing, I just felt very clearly in my heart that it was a waste. It was nothing more than griping and complaining. And yes, I think there is a place for sharing your heart and your struggles, I just felt that I was being overly negative.

Sure Alicia needs special help. Sure she has some potential challenges and she needs extra care. But there is also PLENTY to be thankful for.

In case, you can't read the above, most of it was about a certain disorder called, "Sensory Integration Disorder" or "Sensory Modulation Disorder." And while, yes, admittedly Alicia does have some of the symptoms of this disorder. I do not believe that complaining about them will do any good. I mean sure, she's always getting into everything, constantly emptying a whole box of toys just to look at everything, constantly crawling around, unable to sit still unless strapped down. She's often chewing clothing, playing with food, under-responsive to pain, chewing on toothbrush, oh, did I mention not sitting still, especially when we're tying to change her diaper, etc... But thing is she has many moments when she's completely focused, engaged and fully alert.

So do I choose to focus on the negative and frustrating things or do I choose to focus on the things I'm thankful for? Sure, I can't deny that perhaps Alicia needs some help to learn to organize some of her senses. However, I do NOT need to wallow. We get Alicia the help she needs. We help her as much as we can. That's a part of being a parent.

Do I feel, at times, that we got the short end of the stick? SURE. But truth is, there are plenty of kids who are FAR worse than Alicia. (Not that we should be comparing.) I mean can you imagine not being able to touch your child, or sing to her for fear that it would overstimulate her? Or how about your child purposefully running into things, or doing dangerous things because they are under-stimulated. Alicia doesn't do any of that.

Yes, she has certain things that are indicative that she has SID or SMD. But, they are mild.

But I will ask you to pray for this. Pray for Linda and I to have strength and keep focused on God. It's been said that, "God will never give us more than we can bare." Well, unfortunately, this is a gross misquote. The Bible doesn't say that. He says he won't allow us to be tempted beyond what we are capable of resisting. In fact, Paul in describing his experience in Asia says that "We were so utterly burdened beyond our strength that we despaired of life itself."

God does put us in positions where we can't handle it. But as Paul continues to say, "[It's so that it will] make us rely not on ourselves but on God who raises the dead." 

Is it always easy to rely on God? NO! I am tired. I am not going to lie. I am drained and exhausted. BUT he has us in this position for a reason. He apparently loved Alicia enough to give her to Linda and I in this condition. He felt that we were the best parents to help her through this life. And I am honored. But MAN, do I feel completely overwhelmed and inadequate. And I can speak for Linda here, too. We both feel the same way.

However, as I have been reminded several times, just this week itself, my God is a big God. He is BIGGER than all of these struggles and trials. He is bigger than the storm. And as Jesus did in the boat, as it was being tossed about by the storm, I need to rest and know that he's GOT IT.

I may not be able to calm the storm, but HE CAN. And HE has promised that we will come through on the other side. So you know what, SID or SMD, and any other thing that may want to try to hinder my daughter? I'm going to tell my Daddy on you! Actually, no, I'm going to tell YOU about my Daddy.

He's the one who put the world in place. He's the one who knit Alicia fearfully and wonderfully in Linda's womb. He knows every fiber and cell in all of our bodies. The wind and the waves obey him. And HE PAID the ULTIMATE PRICE so that we can have life ABUNDANT! And this abundant life? It does not include you. So go on and git!

In the words of Gloria Gaynor, "Go on now go. Walk out the door. Just turn around now. Cause you're not welcome anymore. Weren't you the one who tried to hurt us with goodbye? Did you think we'd crumble? Did you think we'd lay down and die? Oh, no not us, we will survive.  Oh, as long as we know how to love, we know we'll stay alive, we've got all our lives to live, we've got all our love to give, and we'll survive, we will survive (hey hey)!"