Come back here from time to time for some food for thought and some encouragement in issues that may be on your mind.

March 23, 2009

Rejoice with us over good news this week.  This winter I have been experiencing chest pain and shortness of breath when I exert myself.  I have not yet reached the Big 5-0, so this was definitely alarming.  I went to the doctor, finally, after Doug put his foot down and insisted that I not wait any longer.  She was very, very concerned about what she heard.  The symptoms were classic for a woman having a heart attack — including the pain radiating into my jaw and down my arms.  She did an EKG, which showed no history of a heart attack, but she also put me on severe restrictions — not to get far away from a hospital, and not to do anything that even remotely resembled exercise.  Not that I am prone to exercise anyway, you understand.    That might be part of the problem.  You think?  Anyway, she made an URGENT referral to see a cardiologist for a stress test.

Wednesday, March 18, 2009 was our 20th anniversary.  We spent the afternoon in the cardiologist’s office, doing the stress test.  Based on my description when we first talked, the cardiologist was very concerned about what was happening.  The echocardiogram before the stress test showed that all the internal workings of my heart were good.  Then came the dreaded treadmill…

The tech started the treadmill saying, “We like to see people go 6-9 minutes on here.”  Within the first minute, she was saying, “You are in control here.  Tell me when to stop, and I will stop.”  My heart rate had already accelerated from about 73 to 133.  In the next 50 seconds, it went over 170, and I told her to stop.  She rushed to get more sonogram pictures of my heart, but those did not turn out well — I could not stay still long enough, because I was gasping for air.

We went back to the exam room, both of us quite sure that there was something very wrong with me.  Doug had had a stress test last summer, and he lasted ten minutes.  His tech cut him off, because he was still going strong.  And yes, I was feeling a little competitive going into it (“If he can go that long, so can I.”) .  So we knew that two minutes and extreme shortness of breath were not good signs.

When the cardiologist came back in the room, he told us that he considered mine a positive stress test, even though they did not get good pictures afterward.  He recommended cardiac catheterization, as soon as possible.  So, we scheduled it for Friday morning.  Conveniently, Doug was on spring break, so none of this was adversely affecting his sick leave at work.

In the meantime, I was extremely emotional.  The two younger children were naturally upset as well.  It did not help that Brent would walk past me and say, “Mom, we don’t want you to die.”  Of course he would do that just about the time that I would compose myself.

I confess to being very stressed through the whole process.  Fortunately, many other people around me were not, and they prayed.  Hard.

Thursday morning I had a good, long talk with an old friend who knows me very well.  She was able to touch on some heart issues (as in, spiritual issues) and really get me to talk about fear and faith and what I believe and what God was doing in this process.  After that, I was better, and by Friday, I was really ready to go have the procedure done.

Many people showed up Friday morning to support us and sit with Doug.  All of my siblings were there, as were Doug’s parents and his sister.  Several precious friends came as well, including one who is very close and knows me like the back of her hand.  She even knew what I was thinking when the doctor came out of the suite to tell them the results.  She nailed me on it.

The hospital staff were wonderful, though my male nurse was a little more crass and blunt than I would have liked.  Nonetheless, they were thorough in their care.  When the nurse came to get me, I ran him out of the room so we could pray beforehand.  He told the cardiologist, who commented on it when he came in to greet me.  He said, “You know, the research says that prayer works.”  I told him that my friends prayed the night before that he would sleep well.  He said, “I did…” , looked stunned, and walked out of the room to scrub.  When he came back, everything was businesslike, but they talked to me all the way through and told me what they were doing.

At some point, they said, “Patsy, we are looking at your heart now.”  I asked, “Do you see Jesus in there?”  They said, “No, we don’t see Him.  He’s not there.”  I said, “Oh yes, He is.  You just can’t see Him!” It’s amazing what some relaxation drugs will do for removing our inhibitions.  If only I were that bold all the time.

About 30 minutes into the process, I heard the doc say, “Let me look at #6 one more time.”  Then he said, “That’s it.”  I figured that was the artery they were going to have to put a stent in.  Next I heard the snap of gloves, and the doctor walked over to my head and said, “We’re finished.  I don’t know what we saw on that EKG, but there is nothing wrong with your heart.” So of course I had to go through all the questions about medications that he and the internal medicine doc had prescribed. It was hard to wrap my drugged brain around what he was saying, and even today, Monday, I am still working on coming to a deeper understanding of it.

Clearly, there was something very wrong on Wednesday.  And clearly, there was nothing wrong at all on Friday.  I had asked on Wednesday if an asthma attack could have caused my heart to be stressed on the treadmill, and he had said, “No way.  Only a blocked artery can cause what I saw.”  On Friday, he did suggest that I see a pulmonologist, just to check out the asthma thing.  But basically, he was humble and said, “I was wrong.”

We don’t believe he was wrong.  We believe he was very, very right on Wednesday.  We also believe that prayer works.  He said it himself — the research bears that out.  Not that we need research to tell us anything.  Statistics are not the same as a relationship with the Living God.

Interestingly enough, I am winding down the new Beth Moore study on the book of Esther. Today’s emphasis was on turnarounds — what has God done to turn sorrow to joy and mourning to celebration?  I did not have to reflect too far back into my past to come up with an answer!

My question for you today would be, what has God turned around in your life?  Are you waiting for a miracle?  I believe they still happen.  I’m not sure the ones we want are always the ones we get, but I believe they happen.   Look today for a miracle.  Maybe it’s dramatic like my heart.  Or maybe it’s a simple one, like your child finally “getting” alphabetizing.  I got that one today, too.  What is most important is not the size of the miracle, but the openness of our hearts to receive one — and our willingness to give God the glory when it happens.

P.S. I never got around to organizing Brent’s room, and March is almost over.  Sigh.

January 23,2009

I just read the September 28 entry, and I am so ashamed.  I never did resolve that problem.  Brent’s room is still an unholy mess.  I am struggling to get it done, but reading my own plan gives me courage.  Now if I only follow through.  I guess I should put it on the calendar.  I think I have some time in March. 

My precious sister in Christ, Denise, sent me an email today.  This is Friday.  On Tuesday, her son was near death.  His needs are much more severe than Brent’s, but we could easily have been in her shoes.  In her email, she described her bond with her son, one in which they have almost become one.  As she watched him suffer on Tuesday, the Lord asked her to turn him loose, in much the same way that Abraham laid Isaac on the altar.  In the process, she learned an important truth that all of us need to remember.  I find her words much more effective than anything I could say, so I share them here:

I no longer have to carry a burden to “make CLAYTON WELL” I truly do know that God has Clayton His hands. I am just a diaper changer for Jesus… and Clayton’s caregiver.. not his savior.

Does that strike anyone else as familiar?  Have you ever thought that you needed to be your child’s savior?  I wonder, with the divorce rate so high among special needs families, if sometimes dads leave because they feel like failures at “saving” their kids.  And who knows the mom of a special child who is not rabidly obsessive, as a friend of ours says it, about that special child?  There are a few, but most of us have to admit that we fall into that category (see my entry below, about being Mama Bear).

No matter how many programs I try; how many supplements I gag my kid with; how many new recipes I try in the process of putting him on some “miracle” diet; how many different curricula I try as we learn to add and subtract — for yet another year; how many doctors and therapists and labs I drag him to…no matter what I do, I am not his savior.  I am his mother, nurturer, and by virtue of being a homeschooler, I am also his teacher.  But I am not his savior.
When God spoke to Moses through the burning bush, Moses asked Him, when the people asked who told him these things, what should he say?  God spoke, “I AM.”  When He said those words, He echoed down through the ages, “And Patsy, You Are Not.”  I am not God.  When I pretend to know it all or do it all or have all the answers for my child (or yours), I am removing Him from the throne of my life and placing myself in that spot.  When Herod did that, he was eaten by worms.  By comparison, lightning would have been more merciful.  His was not a slow death.  He had time to think about what he had done.  May I never have that experience.
Lord, keep me humble.  Ouch.  How afraid are you to say those words?  Afraid that something even worse will happen to your kid?  Then once again, you have put yourself on the throne of trying to control.
God is good.  He loves me.  He loves my child. And HE is in control.
Jesus is Brent’s savior.  I am not.

Blessings,

Patsy

September 28, 2008

I am totally overwhelmed today with the thought of cleaning up Brent’s room.  It is an unbelievable mess.   I broke my own cardinal rule about special kids and stuff, especially kids who dump everything.  And what is that rule?  Limit Access.  We let him have too much stuff at once, and the result is not pleasant.

So what am I going to do about it?

* It didn’t get that way overnight, and it won’t be fixed in a day.  I have to accept that.

* I bought small, clear boxes to put things in.  I tried sending him to fill them, one at a time, and that didn’t work.  There’s way too much stuff in there.  Still, the boxes will be helpful.

* I’m going to have him put EVERYTHING in large containers, then basically move them out of his room and empty the room to start over.

* Then I’ll sort one box at a time, into smaller boxes, removing junk and trash, and put those small boxes back.

* We will take pictures of the boxes and put them on each, so he knows where things belong.
*Most importantly, we’re going to limit access!!  Many of those things are going to the attic.  Nope, sorry, can’t give them away like I’d like to.  This kid has an amazing memory for obscure toys.  Can’t tell you how many times I’ve stood in the attic going through boxes, looking for something that we couldn’t find in the house.  Ask me sometime when you see me about the time he wanted his “orange dog”.  I finally figured out it was a Sonic toy and seriously considered driving to every Sonic in town to ask the managers if they still had one orange dog left in the storeroom somewhere.

Wow.  That was vulnerable.  Hope someone out there can relate to this experience.  I’ll let you know how it turns out.  Meantime, my recent back injury may slow down this process.

In Spanish we say, “Poco a poco se llega lejos.”  It means, roughly, “Little by little one arrives far away.”  I’ve got to keep that in mind!

September 26, 2008

Patsy’s Parenting Tip of the Day (and not necessarily for just the parents of special kids):

Forget “Boy Toys” and “Girl Toys” at the fast food place.  Ask for the SAME toy.  That way, nobody has something different.  Trust me.  If one toy is different, everyone will want that toy.  On the same note, if the bank teller asks if your kids want suckers, say, “Only if you give me 3 (or however many you need) of the same color.”  Otherwise, the Color War will ensue.

That’s my survival tip for today!!

9/4/08

Last night, our seven-year-old daughter overheard a comment from candidate Sarah Palin’s speech. I am not going to get into the politics of it, because I don’t want to jeopardize our 501c3 status. So don’t ask me for my opinion on Palin or the speech, please.

Here’s what struck me. Palin made a comment about families with children who have special needs. Our daughter came over and whispered to me, “That’s us, isn’t it Mommy?” I heard myself say to her,

“Yes, we are a family with a special needs child.”

Somehow, saying those words to her made me catch my breath. Yes, we are a family with a special needs child. Has our child come to define who we are? Maybe. Of course, our ministry makes that all the more true. Yet we don’t want our other children to lose sight of their importance to us.

How do we find balance in the midst of this identity crisis? I wonder if some of you ask yourselves that same question. What happened to the very professional woman who gave up her job to stay home with two precious little boys (and now their sister, who is our “good measure, pressed down and running over”)? Of course, the essence of who I am has not changed. But I notice some differences.

I will fight for my child — any one of them — like a Mama Bear fights for a cub. There are more opportunities to do that for the middle one than for the other two, but Mama Bear does fight.

Somehow, though, I do think there is much more vulnerability than anyone realizes. There are some tender spots, some that only my husband recognizes, some that only Jesus knows about. Mama Bear is not always all that strong. She needs help.

So, Mama Bear, lest you think this MB is a model of strength, think again! And ask yourself, what is my source of strength? My husband is my best friend. I am so grateful for him and the commitment he made to our family long ago — and has stayed true to his word. Like MB, though, Papa Bear needs a source for strength, too.

Our strength is in Jesus alone. “When I am weak, He is strong.”

His power is made perfect in my weakness. Even when I catch my breath as I once again acknowledge that our family is different, that we are a family with a special needs child, I know that He has called me to be the mother of this child, and He will show Himself strong even as all my weakness is laid bare when I wonder what will become of my child, what will happen to him when I am gone.

May Jesus be your Tower of Strength today.

Blessings,
Patsy

August 22, 2008

Today I heard from a mom who has been in contact with us several times in the last three weeks, including being brave enough to attend the two conferences at which we spoke in the Houston area. She asked a question that may be nagging several of you, and I felt compelled to write about the answer here.

The essence of her question was, “How do I protect my marriage?” Her husband is the sole breadwinner. She is primary caretaker for more than one child, and one of them has both cognitive and medical challenges. Both of them are exhausted, and life/marriage has become simply a matter of running a business — family. They don’t talk about anything deep or meaningful. They co-exist, both falling into bed exhausted every night, he from working hard to support their family, she from caring for their children all day.

Can I get an Amen here? Anyone else feeling that? Of course! Don’t we all, at some point?

Having a special needs child is taxing. If you heard us speak at those two conferences I mentioned, you heard us quote statistics that show that 80% of couples with special needs children will divorce. Among those whose children have the seizure disorder that our son had, the rate is 90%. We knew that from very early in the process, and we were determined not to let it happen to us.

So how do we preserve our marriage? We have several strategies.
1) We go away for a weekend every year at our anniversary. Since we married in March, we work hard to get our taxes done as soon as we have all the paperwork, so we can get our refund in time. That’s how we afford it. As for childcare, some years we had to be extremely creative at piecing together caregivers and figuring out their schedules and handoffs. And yes, for YEARS, Brent made me pay for weeks afterward. Nonetheless, we considered this so important that we did not let that thought stop us. We continue now, over ten years later, to get away for those weekends.
2) We date. As in, each other. Tonight our kids are spending the night with Doug’s parents. We have to pick up the van from the shop (a saga all its own), but otherwise, we’ll go pick up a movie, make a salad, and enjoy watching something besides the Marx Brothers or Veggie Tales (both, obsessions of our kids!). Sometimes we go out to eat. With a huge van repair looming, though, we’ll stay in this time. We make this kind of time for each other deliberately. We are blessed to have a wide support system that helps us do this. If you don’t, you will have to be creative. Look for a church with a Respite program, even if you have to drive a long way to get there. If you can’t afford to go out to eat or something, just go sit at a park or on a mall bench.
3) We minister together. Having a common goal besides raising our child means we have something else to talk about. It also means that we are looking past our own situation. Research shows that helping other people helps put problems in perspective. Even before we incorporated TSK, we taught youth Sunday School together for many years. Find a focus outside your own family, something you both enjoy.
4) We make a point of enjoying our other kids. Doug often takes one of the children, including Brent, on outings. They need Daddy Time. What does that have to do with our marriage? Plenty! He is sharing the responsibility for their need for attention, which takes some of the heat off me. That’s good preservation of our relationship.
5) We worship together. And we talk about our Bible studies. This summer, we decided to both study the book of Daniel, using different study guides. We studied separately, but we shared with each other later in the day. Wow! We learned so much from each other.

There are probably many more ideas I could share, but the kids just left, and my mind has gone totally blank. Maybe it’s the silence — I feel so empty without all the noise!

Oh, one more thought. At times in the last 12 years (since Brent got sick), I have, indeed, become frustrated with Doug. I’m not sure he knew it. Shh. But I’ve learned — when I feel that way, I serve him more. There’s something about service that reminds me that it is NOT all about me, and that I need to consider others better than myself. That starts at home.

Blessings,
Patsy

5/5/08

Choose Laughter.

Some of the things that your special child does are downright funny. So laugh. Some of the things he says are funny. Laugh. Some of the things that happen as you deal with agencies and service providers are so ridiculously absurd that they border on hilarious.

Years ago, I taught Spanish in a local high school. I had the privilege of teaching a class for students who already spoke the language. These days, the politically correct term for the course is Spanish for Heritage Speakers. One of my students was a young man from El Salvador. He had escaped his homeland during a time of war. This student told me jokes almost every day, and I got a real kick out of repeating them to the other Spanish teachers. One day a colleague asked me, “Patsy, why is it all the jokes you tell us in Spanish are about dead people?” Oh, my! I didn’t even realize it. I said, “I don’t know. I just tell the ones Willie tells me.” I went back to Willie and asked him about it. He explained it this way: “Miss, in my country, we saw a lot of death. We had to choose. If you didn’t laugh about it, you cried. I chose to laugh.”

I often tell parents who homeschool special kids, “You are homeschooling in a war zone.” Even those who do not homeschool can, I am sure, relate to that concept. All bets are out regarding anything “normal” in life. Normal is a setting on your dryer. Nothing is “normal” in my home. Every day is one continuous interruption, one surprise after another, one event after another. Nothing is smooth.

So if I, too, live in a war zone, then I have the same choice to make that Willie made. I can laugh. Or I can cry. If I try to make everything in my life make sense, I will go crazy. If I try to explain absolutely everything until my son understands what I’ve said, he and I will go down that crazy road together.

Sometimes, I just choose to laugh.

One of the greatest compliments our family has ever received came from the young woman who is our son’s attendant. She is in our home 40 hours a week, so she sees a lot of life here. She told me recently, “I think your family laughs more than most people I know. You find the humor in everything.”

I’m not suggesting that you undermine your own authority with your child. Don’t allow open defiance. But if his explanation for WHY he defied you makes a lot of sense when taken in HIS context, laugh!

Maybe we all need to take ourselves less seriously. And has it ever occurred to you that that may be the very reason God gave you this special child to begin with???

Blessings,
Patsy

May 1, 2008

“When did you feel like you were going to make it? When did you feel like you had hope?” This question, posed to me by a mom with a 4yo with autism, hung in the air unanswered as I pondered. First, did I really have hope? Yes. So when did things turn around for me? I could not answer. I asked close friends who were standing nearby. They answered vaguely, “Well, a couple of years ago…” Doug, who was in the middle of his own conversation with a parent, stopped and said, “I know EXACTLY when you started functioning better and began to have hope. It was when you started sleeping through the night.”

Aha! That was it! He was right.

Just to put that in perspective for you… I was the type of “pregnant woman” that, almost as soon as the test turned blue, I started getting up in the night to potty. The books say that starts later, like in the second or even third trimester. Not for me. I would get up during the night every night I was pregnant, just about from the beginning.

I got pregnant with #2, our special child, in July of 1995. He’s the one who had medical issues and so many other things going on, including sensory problems. Until he was four years old, he could not fall asleep at night unless he was lying on my lap. I’d have to wait then, at least twenty minutes, until he dropped into deep sleep, before I could move him. One false move or trip over the step out of the sunken living room meant starting over, a process that could take an hour. On top of that, even at 4 he could not sleep through a night without waking. This, then, takes us well into 2000, the year that the Lord surprised us with one more baby.

Oh, how I prayed for a baby who would sleep like our first child had. When #2 was born, #1 was sleeping 13 hours every night and taking a 2-hour nap every afternoon. You can imagine, then, that with #2 I thought I’d died and gone to a very hot place.

#2 finally started sleeping, but by then, I was pregnant with #3. That meant nightly trips to the potty. Then, our precious little girl came into the world, bright-eyed and happy, with a sleep problem uniquely her own. She just took longer than the boys to make it through the night — that’s all. To be precise, she was 2 when she finally slept through. That means it was November of 2002 when I finally slept through the night again.

Count with me. That means I went 7 years and 4 months with interrupted sleep. If you met me during that time, please forgive me for anything I said. I have no memories of that period of time!

Now, there are some of you with kids whose needs get you up all night every single night of the year, for decades. You are my heroes.

For all of the rest of you, here’s the most important piece of advice I can give you. Find a way to get some sleep. You will have to think creatively and come up with a way to do that, but it is really important that you do.

Research shows that mothers of children with intense medical needs suffer medical complications of their own. Some of the present-day issues have not been known enough for such studies to emerge, but I am betting that in a few years, someone will come out with a study that says that mothers of kids with autism (insert your kid’s diagnosis here) have significant medical problems resulting from long-term increased levels of cortisol in their bodies.

So as you research for countless hours, looking for answers for your child, remember this: One of the most important things you can do for your child…is take care of his mother.

Over time, this has taken different forms for me, to greater or lesser degrees of success. Diet and sleep were faster to develop than an exercise program. Still, I’m learning, and I’ve added exercise.

You are not running a sprint. This is a marathon. You must train like it’s a marathon. Eat right. Exercise. Sleep. You can’t do anything to the best of your potential, including advocating for or teaching your child, unless your body is healthy.

“So offer your bodies as living sacrifices…” Maybe your sacrifice is carbs. Or TV. Or reading trash novels (oo, did I stop preaching and go to meddling there?). Make some changes now, for the sake of your child’s tomorrow.

Blessings, Patsy

1/17/08

Must-Need-Want. Those words made more sense to me than any other system I’d ever heard for prioritizing the things I should accomplish. A-B-C meant nothing. My A list was everything I wanted to do, not everything that I must do. My priority was to do what I wanted. Are you like that?

Now I have three lists, and spare time in my day is spent whittling those down. The Must list comes first. Then I do the Need list, and last, the Want list. Okay, so sometimes I do a “Want” when the others are not stressful, just so I can feel like I got to do something I wanted to! Items move across and increase in importance as deadlines draw near.

For ten years after I quit teaching to stay home with my kids, I resisted the idea of keeping a schedule and making lists. So many years in school, as both student and teacher, made me chafe against the notion of the clock telling me what to do. I have learned so much as I have prioritized by Must-Need-Want, and I no longer rebel against knowing what time it is!

If you are having trouble getting it all done and keeping all your plates spinning, switch to this method for a week and see what you think. Somehow, to my mind, it just made more sense.

Jan. 9, 2008

“Your son may never sit, stand, walk, talk, feed himself, dress himself, tie his shoes, or do anything but lie limp in your arms for the rest of his life.”

My first thought was, “What have we done to Aaron (firstborn, named changed for privacy)?”

My second thought was, “I want him (Brent) to have cute clothes.”

Why would I think those two things, one right after the other, and what do they say about me as a mother? Those thoughts reflected underlying goals that I believe parents of special needs kids have, though they made need tools to help them achieve them.

The first thought was rooted in the principle, “What is this going to do to my family? What impact will it have on everyone else, especially the most vulnerable?” Your family and mine are forever changed by the presence of a child with special needs. What we do with that situation will determine the impact it has.

The second thought was rooted in some pride but also some concern for Brent. What were other people going to think of him? And what were they going to think of Doug and me as parents? Somehow, my brain in crisis connected the idea that Brent having cute clothes would show the world that we were taking care of him. So the root of my thought was really, “I want to give him the best care that I can.” The outward appearance of his clothing would never be enough to satisfy me, but somehow I believed that everyone else would think I was doing my best if I at least dressed him nicely.

Several months later, someone who did not know us but could see pain all over our faces asked us a question that dramatically changed our thinking. Her question was, “Are you going to be bitter, or are you going to be better?”

Having a special child transformed our lives. The choice we had to make on the day he was diagnosed, and the choice we must make every day since, for over 11 years, is just what that lady asked us — Are we going to be bitter, or are we going to be better?

Better comes only one way, in our minds. Our relationship to the Lord Jesus Christ, and our ability to look past the surface issues of clothes and “What have we done to Aaron?”, to understand that there is a purpose in this life we now live, has made us stronger.

Recently, I read something Beth Moore wrote that made a lot of sense to me. She asked, “Is your child suffering? God understands. His did, too,and He did not intervene. If He does not intervene for your child, understand that it is because He has a greater kingdom purpose.” (paraphrased, from “Living Beyond Yourself” Bible study)

This ministry, the opportunity to interact with people like you, the chance to meet innumerable heroes who struggle every day to give their best to their kids, is our reward for now. We count our blessings, and we thank God for the people we have met who have changed our lives and melted our hearts, people we would never have known if Brent had never been sick.

By the way, Brent has high-functioning autism, but he does sit, stand, walk, talk, sing…he just can’t tie his shoes! That’s the only thing left on the doc’s list. Pray for him, would you? He’s a joy and a blessing, and we are so thankful to have him!

1/6/08

“I’ve cried every day this week. Why can’t I stop crying? I feel so overwhelmed.” Four days after Christmas, this mom from my church whose daughter has special needs stood crying, leaning against the wall, wondering what was wrong with her. Actually, there’s probably nothing wrong with her. In fact, if she were never sad, I might wonder why not.
Do you feel sad at Christmas? Maybe that’s not the time of year when it happens for you. Maybe you remember the date of your child’s diagnosis, and that day is always reflective for you. Maybe your child’s birthday is a hard day for you.
How can a special needs parent cope from year to year, when there are milestone days that mark the passage of time and remind us of what has not happened in the past year, or remind us of how much longer it takes our child to do things that other kids do?
Here are some things I’ve done that help me when I get overwhelmed. Know this — those days are farther and farther apart as your child gets older. You may never stop crying from time to time, but more and more tears will be for joy, as time passes.
Try these:
1) Keep a diary of your child’s milestones. One of the best gifts that we were given when our son was young was a stack of print copies of all the emails we sent telling of his successes. We sent lots of email updates back then, and someone printed them all and gave them to us. Now, I journal from time to time to keep up. More importantly, when I am down, I read those journal entries, to remind me of how far we have come.
2) Fellowship with other parents. Knowing you are not alone helps. In the beginning, our son’s diagnosis was so devastating, I did not want to talk to parents whose kids had his disorder, for fear of what they would say. Once the seizures stopped and we could move on to the autism diagnosis, though, I was ready to talk. I wanted to be with other moms who understood meltdowns, TV talk, and nonverbal kids who bang their heads to communicate. We’re past the meltdowns and head banging now, but fellowship is still precious to me.
3) Ask the Lord for wisdom, and ask Him to give you Scriptures to hang onto. When you come across a verse that helps, write it on an index card and post it somewhere that you stand still (not often for me!), like over the washer, or beside the sink, or on the vent-a-hood. Then read it as you cook/wash, etc. Memorize that verse, and repeat it to yourself often.
While I’d appreciate your suggestions for what you do to relieve the sadness, please don’t expect that all will post. I may create a composite follow-up later. I want to put current thoughts on here, something to apply from time to time, but I don’t have time to maintain the blog at normal speed. Please pray that the Lord will provide the funds to release me from my job at UTA so I can devote more time to blogging and serving, writing articles and books, and meeting and emailing with families like yours and mine. I appreciate your feedback, so please don’t feel discounted. I just can’t keep up!