Thursday, November 21, 2013


"This is the heart of Camelot, not these stones, not these timbers, these palaces and towers. Burn them all and Camelot lives on, because it lives in us." 

Seek first His Kingdom - I've always seen this through a romantic lens.  I visualize an entire volume of novels about a great King and his noblemen out to deliver mankind from the evil sorcerer who has cast a dark spell over all of the earth.  I think of Camelot, beautiful, radiant Camelot and the line that I quoted above from the movie "First Knight".  I picture myself, on the back of a swift horse, risking my life for the sake of the King and that glorious city that dwells on inside of us all.

And then, real life interrupts me.  Epilepsy here, a broken collar bone there, fatigue, exhaustion, emotion.... and suddenly I can't seem to see the city any more.  In fact, I can't seem to see beyond my own nose, or, particularly, my two boys and my husband.  And the dishes - there are always dishes.  

This week I've been distracted by medicine changes and break-through seizures (we think the stupid infantile spasms that cause Levi's developmental delay are back). Two weeks ago, it was Toby's broken collar bone.  But, whether it's cooking dinner and paying the bills, a scraped up knee, or a broken bone, there's always something - something diverting my attention from the beauty I have dreamed of fighting for.

It's a situation that I can't change.  I can't just make it all go away.  It's so easy to start to think that I'm absolutely useless when it comes to giving my life for the sake of some great, invisible thing.  How can I serve others when I feel that I barely have the strength to serve my own family?

This is where I've been.  But, this week, in the midst of the stress and uncertainty of Levi's condition, God has reminded me of something.  This mess of a situation that I'm in - epilepsy, autism testing, therapies, and even the dishes - is my small plot of earth in a magnificent Kingdom.  So, I'm going to fight for that earth.  I'm going to give everything I've got. It might just be a little at a time, but I'm taking what land I can get for now.  And, then I'm going for more.  

Although poopy diapers and whining and fits aren't all that glorious, and even though I can't always see the city beyond my spot of land, my boys, my beautiful boys, epilepsy and all, are still a part of Camelot.  And yes, the dishes too.

 "But seek first His kingdom and His righteousness, and all these things will be added to you."  -Matthew 6:33

Monday, August 5, 2013


Do you other parents out there remember the feeling you had when you went home from the hospital with your first newborn baby?  That foggy, sleep-deprived, surreal feeling where you ask yourself, "Now what? What do I do with this....person?"  "What was I thinking bringing a human being into the world?!  I mean, really.  A HUMAN BEING.  I actually thought I was qualified to raise a healthy, emotionally stable person and release them into society!  Am I crazy?!"  That's at least how I felt.  Completely inadequate.  I can only imagine that most people feel that way at least once in their parenting lives.

Today I'm feeling that same inadequacy.  I'm not saying this to make anybody feel bad for me or write me an encouraging note on facebook.  I'm saying this because I'm pretty sure I'm just a normal person who, at times, feels like I don't know the first thing about raising children.  Am I crazy to think that all parents must go through this?  I figure it's probably a bit more of a struggle with a special needs child, but no matter how hard the struggle, it's still there.  We all face it in one way or another.  We all have those moments when we don't know what our child needs and we feel really crappy about it, right?

Honestly, I'm thankful for my inadequacy.  I would much rather feel inadequate than feel completely competent as a parent.  It's those very inadequacies that remind me how big God really is.  It's my weakness that reveals His strength in my life.  It's the moments when I feel the least qualified that I know I can look to Him and find all that I need.  I guess that's really why I'm writing this.  I just needed to remind myself that I'm a person.  I'm not perfect.  And, I'm fine with that.  The same goes for everybody else.  It's ok to just be a person, inadequacies and all.

 "And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me." 1Cor 12:9

Friday, July 19, 2013

What Can I Say?.... Part I - Perception

Last week I wrote a post about some of the things that well-meaning people can say that hurt or invalidate the parent of a special needs child.  I had a large response from readers and many people asked, "Well, what can I say?"  So, I'm going to attempt an answer to that question.  But, considering the fact that every parent with a special needs child has different struggles and different personalities and ways they face those struggles, it's not going to be a simple answer.  Different people need different things and react in different ways.  But, I'm going to do my best to answer the question.  It's definitely going to take more than one post, though.

I think the first step in approaching a parent of a special needs child is not what you say to them, but how you perceive them.  If you have an accurate perception of them and what their life is like, you'll be more likely to say the right things.  As one of these parents, one of my greatest insecurities is that people will think I'm overly obsessive with my child's needs or that I blow things way out of proportion and completely find my identity in his disabilities.  I know this is a valid concern because people have treated me like I do this, and even said things to confirm that they feel that way.  Not only that, but I used to have those same thoughts about others.  I'm not trying to make anyone feel guilty for feeling this way, but I do want to explain why we parent's of children with special needs come across as being so consumed with our child's needs.

It's kind of a simple answer.  If we come across as though we're consumed by our child's needs, it's because our lives are completely consumed by our child's needs.  Our thoughts must constantly be centered on their safety.  Our schedules revolve around their therapies and doctor appointments.  Our emotions are tied to their every up and down.  Here's the example of my life.  And, please note, Levi's needs are minimal in comparison to so many other children.

First, my mind is consumed with his behavior and safety.  It HAS to be.  Levi is very high maintenance - I'm constantly having to stop what I'm doing to pull him off of some piece of furniture, to take some choking hazard out of his mouth, to tuck his penis back into his diaper so he doesn't pee on the floor, or to cover his eyes and make sure he's just spacing out and not having a focal seizure.  Like I posted here, he has no understanding of boundaries in public or outside.  We cannot go somewhere without holding him or having him strapped into a stroller or he WILL run off immediately.  Ironically enough, I just had to stop writing and go pull him out of a window sill that he had somehow managed to climb into.  Even if he's asleep, I have to be on alert.  If I'm unaware when he wakes up from his nap, the trouble he could get into is endless. Yes, many of those things are normal things that you have to do for a child, but that's when they're like a year old.  The average one year old grows out of that behavior.  Levi is going on three and I'm not seeing an end in sight.  It's exhausting and frustrating and yes, it's all I think about, because if I don't, he will get hurt.  I don't have a choice.

Next, our schedules are consumed.  My entire life revolves around Levi's strict schedule.  Levi doesn't sleep well at night so we are supposed to make him wake and sleep at the same time every day.  EVERY DAY.  No exceptions. This is so hard to do.  I put off starting this rigorous sleep schedule for weeks because I knew it would seriously cramp my already limited social life.  When he is awake, the time that I could spend getting things done or going out or playing with my boys is spent on therapies.  He has four or more therapies a week as well as scheduled respite time where I frequently have to take him somewhere just so I can go back home and clean my house without interruption.  Respite is nice, but it's stressful to have to take my kid somewhere just to get a little work done.  It adds an entire step to the process.
 I'm also supposed to work with him on his therapies in my own limited time every day.  Honestly, this rarely happens.  After his sleep schedule and his therapies, I've still got dishes to wash and laundry to fold and dinner to cook, not to mention my floors and bathrooms that rarely get cleaned.  I don't have enough time in my day to work with him in the ways that he needs. Then there's the paper work.  I can not tell you how many endless hours I have spent filling out intake forms and applications for therapies and services and calling doctors offices and hospitals to make sure we've got the bills and appointments figured out.  On more than one occasion, I have spent all of my available time for two to three weeks straight (no exaggerations) sitting at the computer, writing emails and filling out forms.  It is never-ending.  And then, considering that he is a high maintenance child, I'm constantly interrupted and have a very hard time getting things done.  My house is a mess, my laundry is dirty, and my Toby, my sweet sweet Toby doesn't get the attention he so needs to have from his mommy and daddy.  That I can't keep up with my housework and that I rarely get a chance to work with Levi and that Toby gets so little attention makes me feel inadequate as a parent.  I can only imagine that most parents with special needs children struggle with this same feeling of inadequacy.

Finally, there's the emotional side of it.  First, there's the aspect of having to let go of what we thought life was going to look like.  We have to give up dreams and ambitions that we wouldn't have to give up for a "normal" child.  In fact, our entire idea of what life would look like is gone. I talked about that here.  The emotions that a parent goes through with this are very similar to the emotions that people go through with death.  I'm not trying to compare disabilities with the death of a child.  But, in a small way, we did lose a child - the child we had no longer exists.  It's painful and just like in death, that pain may never completely go away.  
After working through the emotions of loss, we still have the day to day emotions of seeing how our child progresses.  Every parents emotions are connected to their child's well-being.  And, the well-being of most of the special needs children that I've known varies from day to day, week to week and month to month.  For instance, six months ago I was so excited that Levi was learning new words on a daily basis.  His weekly visit from his teacher, though, would vary.  Sometimes the visit would go well and sometimes it wouldn't.  But, overall, I thought he was really gaining some ground and had high hopes that he would catch up completely.  Then we went to see Dr. Schultz, who said that even though Levi was learning new words, he wasn't growing as quickly in communication.  The gap had actually grown between his language and his communication inciting concern for autism (emotions down).  The autism test was negative! (emotions up)  But, the gap was still growing and if it keeps on growing we may have to do autism testing again later (emotions not knowing what to do).  And then Dr. Q told us about the possibility of things getting much worse (just plain horrifying).
As a parent of a child with special needs, I've been through a gamut of emotions that I had never experienced before - fear, hope, insecurity, inadequacy, stress, depression, anxiety,uncertainty, and some emotions that I can't seem to put my finger on.  The exhaustion doesn't help.  Like I said, Levi doesn't sleep well.  So, I don't sleep well.  Some months are literally like having a newborn in the house waking every few hours.  Being exhausted and facing the stress and emotions that come with a special needs child is not a good combination.

So, if you find yourself in a conversation with a parent of a child with special needs, and you feel like they only ever talk about their "special" "needy" child, take a look at your own life.  What do you talk about?  More than likely your conversations revolve around your job and your children and what's going on in your daily life.  The thing is, with us, special needs is our job, it is our child(ren), and it encompasses everything that goes on in our daily lives.   We don't get to separate our lives into different sections.  It's all one big ball of special needs.  So, of course it's what we talk about.  We're not looking for pity.  It's just all we know.  Understanding that, and not judging us for it, is the first step to approaching us in a way that won't hurt us.

Saturday, July 13, 2013

Soap Box

So.  I try really hard to keep a positive outlook.  I try not to complain and I try to look at the bright side of everything that's happened with my Levi.  But, after nearly a year of being positive and upbeat, I'm going to get on a little soap box.  I think I've earned it, and not just because of what I've been through, but also because I used to think (and probably say) the same things that I am being told on a regular basis.
To start with, if you've said some of the things I'm getting ready to complain about, I don't want you to feel bad.  You're not the only one who's said it to me.  And, like I mentioned before, I have, myself, more than likely, at least thought it about someone else.  Secondly, I'm not sharing these thoughts out of offense or to defend myself or to make anybody feel guilty.  That's the last thing I'm interested in.  I really just want people to at least know what not to say to the parents of a child with special needs.
First.  Vocabulary doesn't equal communication.  Just because a child can say or mimic some words does not mean he's at age level for his communication.  Levi has been taking off on the vocab side of things.  He's able to tell us when he wants a drink and when he wants to go play outside as well as several other 'I want' and 'I go' phrases.  Thank You, Jesus!!  It's exciting!  But, at two and a half, he still doesn't comprehend "come here" or "where's the dog" or "get the block" or most commands for that matter.  He still can't tell me when he's in pain or doesn't feel well.  "I want" and "I go" are a huge accomplishment, but it can only get him so far.  So, please don't tell me that he's at the same level for language (or anything else for that matter) as other kids his age.  It doesn't make me feel better.  It makes me feel like you think I'm blowing things out of proportion.  The truth is, I'm not.  Many professional language/development tests and experts have confirmed this point.
Here's another example of what not to say:  "He doesn't seem too far behind developmentally.  He is really big for his age,though, isn't he?"  No.  He's average sized for his age.  What you're seeing is a two and a half year old acting like a twenty month old.  Yes, he seems big for the way he's acting, but it's not because he's above average in size, it's because he's below average in development.  He's supposed to be that size; it's just that he's supposed to behave that size too.  When you know a child is developmentally delayed and you openly associate that with his size and not his development, to the parent, you've just invalidated the struggles they and their child have gone through.  When people say this to me, I feel like they're telling me, "No, Keira, you don't know what you're talking about.  He's just fine."
Which leads to another one:  "He'll be fine. You know that, right?  He'll be just fine."  No.  I don't know that.    He could be fine, but he might not.  In fact, there's a chance that he could be really not fine.  The thing is, there are plenty of people out there who's kids are not fine.  There are children who are completely mentally handicapped, kids who die of cancer, and kids who will need constant care for the rest of their lives.  God does not love me or Levi more than He loves them.  If He allows it for one child, I cannot say that He won't allow it for mine.  I hope against hope that He completely heals my son.  I have faith that He can and will.  But, no.  I don't know that He will.  Faith and knowing are two different things. I mean, seriously, kids aren't handicapped or terminally ill because of their parents' lack of faith.
Which brings me to:  "Well, you just need to rebuke it," or "I just wouldn't accept it," or "You just plead the name of Jesus over him..."  If anybody else tells me I just need to plead the name of Jesus over him, I might just go crazy.  As though I'm not already doing that every single day.  Say one of those things to me and you make me feel like you think I'm so stupid that I don't pray for my son or that I'm completely lacking the faith that I need for my son to be healed.  Don't get me wrong.  I want you to plead the name of Jesus over my son.  PLEASE pray for him.  But, the fact is that so far rebuking it, rejecting it and pleading Jesus' name hasn't caused it to go away yet, and it might not ever go away. In fact, there's a medical chance that it could get worse - way worse.
Some people might take that last statement as a lack of faith on my part.  But, let me tell you something I've learned about faith through all of this.   It's one thing to believe that God can heal my child and to hope that He will. It's a whole other issue to know that instead, God could allow it to get worse and He would be just and glorified in doing so.  You see, His ways are not my ways and His thoughts are high above my thoughts.  If His plan doesn't involve Levi's healing from epilepsy and developmental delay, I have to have the faith to believe that that's the better plan.  It takes so much more faith to want God to have His way, even if it means things get worse, than it does to believe that He can heal my son just because I said "in Jesus' name".  Trust me. I've prayed Jesus' name over people and seen them healed.  This takes way more faith.
  So, there you go.  I have officially vented.   If I was too harsh, I'm sorry.  I've actually edited this post a lot because I don't want to upset anybody.  But, people need to know that we have to be careful.   Alot of the time that people have said these things to me they were trying to be encouraging, but they ended up invalidating or minimizing the situation I'm in.  And that's why I have to share this post.   I haven't written it out of frustration with a person or people.  I've written this out of frustration with feeling like nobody really understands, which, even in the midst of many great friends, can be a very lonely place.

One Year and Some Venting

Today marks one year since we discovered Levi was having seizures so I figured I should write something.  I want to write an overview of the past year, but I think I'll do that in a couple of days.  I kind of need to vent some stress and writing here seems to help:
  Today has been a fairly good day, but an unusual one as far as schedule goes, so Levi's had the chance to be extra.... well.... Levi-y.  We've been outside for much of the day, which is nice, but we've been with friends, which is also nice except that outside and Levi and friends don't mesh well unless he's strapped down, which for obvious reasons doesn't work for long.  Levi wants to run free when we're outside and doesn't understand that staying close to Mom and Dad keeps him safe. I'm telling you, this kid has absolutely no comprehension of boundaries.  If you take your eyes off of him for thirty seconds, he's either in the neighbors yard on his way out of town or he's trying to play with the fire. So, if we're outside, and we're letting him play, we have to follow him everywhere.  This doesn't work well if we want to hang out with our friends.
  If we want to spend time with our friends outside, we have two options.  Our first option is to hold Levi while he CONSTANTLY tries to break free, which is very difficult with a two-and-a-half-year-old-sized-body.  Of course, this method is painful to the back and also includes a frustrated Levi crying in the ear of the parent because he just wants to get down and play.  This makes it very difficult for said parent to participate in any kind of conversation with another adult.  The second option, which is our usual choice, is that we take turns chasing and holding.  I'll chase while Daddy talks to friends and then Daddy will chase while I talk to friends.  Then we'll try to hold him with us so we can all talk. But, thirty to forty-five minutes of that gets to be exhausting and our endeavor to have quality time with friends just seems pointless.  It's really frustrating.  We're frequently asked, "What's wrong with Levi?"  "Is he tired?",  "Is he hungry?".  No.  This is Levi.  This is a little glimpse of what our life looks like. It is like this LITERALLY every time we spend time with people, especially outdoors.  There's not something wrong.  This is how he is.
Of course, the last thing I want is for anybody to feel bad for asking us questions like that.  There's no way anybody could know what it's like unless they lived it on a daily basis.  So, I'm not frustrated, or hurt, or upset in anyway with anyone.  I'm just tired, especially after today, and needed to vent a little.  Thanks for listening.


Monday, May 20, 2013

Welcome to Holland

I did not write the following piece.  A friend of mine, also a special needs mom, sent it to me awhile back.  I cried my eyes out the first few times I read it and sometimes still do.  It so beautifully puts into words the thoughts and emotions that I've gone through this past year and it reminds me that I'm not alone.  Here it is:

"Welcome to Holland" 
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this: When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. - Emily Pearl Kingsley

 I sometimes don't know whether I should keep hoping for Italy, but like I've said before, I know we'll be where God wants us to be and who He wants us to be

Thursday, May 16, 2013

The Latest and Greatest and not so Greatest

Levi had an appointment with Dr Q last Friday.  It went well, overall.  There haven't been any changes to his EEG, which is on the good side.  Dr Q feels like Levi is progressing better than 90 - 95 percent of most children with his condition.  This was very encouraging to hear.  And then came the "but".  Why is there always a "but"?  Until now I had thought that once we had his seizures under control and we had ruled out any known causes (which we did) that we could stop having so many appointments (every three to four months).  I thought we could only go uphill from here.  BUT, yes there's that word again, the problem is that as much as half of those diagnosed with infantile spasm will later present with a completely debilitating form of epilepsy that leaves the person with daily, uncontrolled seizures of all kinds and a high probability of severe mental handicap.  (cue my heart sinking to my stomach)

Dr Q said that Levi is not showing any signs for this syndrome, but that it can present anywhere from age 2 to age 6 and even beyond.  So, we have to watch him closely.

It seems that since he's doing so well, Dr Q feels very encouraged that we probably won't have to worry about it.  But, just that there's a chance is pretty scary, especially when I was just thinking there was no way it could get worse.  Honestly, that's what I've been hanging on to until now.  So, since it can get worse I'm just having to learn to trust God in an entirely new way.   I am trying to hope for the best and yet be prepared if the worst were to happen.  
One thing I know is that God spoke to my heart when all of this was first starting.  He told me, "Levi is going to be who I made him to be."  I have been clinging to that even more since I heard that it could possibly get so much worse.  I keep speaking Psalm 139 over him - that's the one about being "fearfully and wonderfully made".  Please, please be praying for my Levi.  Would you pray Psalm 139 over him?  Would you pray that the epilepsy would not progress to this way worse syndrome?  Would you pray for his complete healing?  Would you pray for peace and grace for his Mom and Dad, too?

On another note (pun intended as you'll see), I've had the perfect outlet to help me process all of this.  I've joined the annual 5in5 challenge with a bunch of musician friends all over the globe this year!  It's really cool. We all have to write five entirely new songs in five days (get the pun now?  note.... song?  Ha!)  Anyway, a couple of the songs that I've written have come straight from the emotions of the past year.  I hadn't written much music since everything happened with Levi.  I think it was a way of protecting myself, so it's been really good to get it all out.

Here's the links to the songs that I mentioned above:  I hope you enjoy them.

This song is from day 4 of 5in5:

This song is from day 1 of 5in5:

Tuesday, April 30, 2013


I feel like I'm finally getting a grasp of the events of the past ten months.  Until now, life has been pretty surreal.  I think a huge part of it is that I haven't known what to expect or how to help. Is it autism?  Is the delay permanent?  If it is permanent, how severe will it be when he's older?  Will people be able to tell that he has problems?  How much will he struggle?  What will his strengths be?  
The questions are endless and we've had one of them answered - it's not autism - but, we don't know the answers to anything else.  Yet, somehow, I feel settled.  For the first time since that first week in the hospital, I feel like we have a plan of attack. We've got specialists coming out of our ears.  So far, we've got a special ed teacher coming twice a week.  A speech therapist joins the teacher once a week.  We're getting ready to start occupational therapy once a week and then sometime in the next few months we'll add another speech therapist twice a week.  We've got a DD (developmental delay) worker - a social worker who is helping us find even more services including some grant money to help us get some supplies that will keep Levi safe as well as some educational toys and games, etc....  We also have a social worker who is helping us find even more services.  She's currently seeking out yet another specialist to come and work with Levi.   Then there's a financial worker who is helping us find ways to help pay medical bills and the like.  Of course, I've mentioned Dr Q, the neurologist and Dr. Schultz, the developmental pediatrician.  And, finally, we will have some respite care - someone to come and watch and work with Levi while I catch up from all of the appointments and meetings and emails so I can have a chance to do things like laundry, grocery shopping, and yes, even taking a shower!
I've said it before, this is going to be a long road.  I might not know where that road is going to end, but I know we're doing EVERYTHING we can to help my Levi reach his full potential.  We're hoping and believing for a complete recovery, but until that happens I can be secure in knowing that Levi is going to be who God made him to be and I'm doing all that I can to see it happen.

Monday, March 25, 2013

Diagnosis Negative

So.....  Levi's autism screening was negative!  He does not have autism!  We went in for the testing and Levi had his best day ever.  He did things for the test that he had never done before.  The great thing is that he is continuing to do them!  This, we know, is due to the prayers of our friends and family.  Of course, we are very relieved that we won't have to deal with autism.  Autism, in general, doesn't go away.  A person can learn to handle it and work past it, but the struggle is still there.  Levi is still quite delayed developmentally and we still have an uphill battle, but, without autism, there might be more of a chance that he can completely catch up and eventually have no problems.  We don't know how high that chance is, but I believe it's higher than it would be with an autism diagnosis.  Of course, if he is able to catch up, it will take time, probably years, but he won't have many of the social struggles that come with autism.  And, that, right now, is good enough for me!

The other good news is that Minnesota is one of the top states for the services it offers to children with disabilities.  We already have a teacher come in twice a week and now a speech therapist is going to join her once a week.  But, we're going to be able to get many more therapies and services to help him out.  The earlier he gets these interventions the better.  It won't be easy, and we're not guaranteed that he'll ever fully catch up, but he has a much greater chance with these services.  So, for his sake, we're doing it all.  Whatever we qualify for, we're doing it.  Thank you Minnesota!  Most of all, thank you Jesus!  My baby boy is going to be who You want him to be no matter what happens.

Sunday, March 10, 2013

Roller Coaster

Well, alot has happened since my last post.  We've had another appointment with the neurologist, Dr. Q as well as one with the developmental pediatrician, Dr. Schultz.  We were so excited that Levi's EEG in October showed less potential for seizures and that his language was increasing.  But, unfortunately, the most recent appointments have stifled our excitement.  Levi had another EEG a few weeks ago and this time it showed potential for full blown tonic-clonic (grand mal) seizures (which it hasn't shown in the past).  It also showed that the slowing on his brain has returned.  Dr. Q was concerned about this.  He said that instead of waiting six months till his next EEG, like we had anticipated, he'll need another one in two to three months.  He also said that if it still shows slowing on Levi's brain, he'll need to have another MRI to make sure they didn't miss any problems on the original MRI.  Boo.
A couple of weeks later we had his developmental appointment.  Like I said before, Levi had grown so much in language that I was certain Dr. Schultz would excuse any previous thoughts of autism.  Unfortunately, his improvement in language didn't carry over into his communication skills.  In other words, he has more words than he used to, but he's not able to use those words to consistently communicate thoughts or even his basic needs.  Soooooooooo, this past week we made the trek back to Rochester for the third time in a month for the official autism screening.  We have to go back this Friday to discuss the results with Dr. Schultz.  I'll keep you posted.

On another note, we spent an evening in the ER this week because Levi was having seizures due to a high fever.  It's the first time he's had any seizures since his initial hospitalization.  The really bad part is that it was the spasm seizures.  I mentioned, in my last post, that if Levi continued to be seizure free, especially spasm free, Dr. Q might be willing to switch to a milder medication.  And, at his appointment a few weeks ago, that was confirmed.  But because of his seizures this week, now, instead of switching to a milder medication, we have to increase a medication that could be making his developmental issues worse.  Again, Boo.

This was a very technical post, not well written, but it's helping me process all the ups and downs of this roller coaster ride.  I'm trying to find that balance between hope for miraculous healing and faith that God might want to use this challenge to form our family into what He wants.  So, for now, I'm just processing....

The one thing that I don't have to process, though, is that God gave me this beautiful boy just the way he is - joyful, playful, silly, and oh so affectionate!  Levi is going to be who God made him to be and nothing can get in the way of that.  Nothing can.  No label, no diagnosis, no prognosis is going to change who he is.  And, I'm hanging on to that truth with every fiber of my being.

Thursday, January 24, 2013


So, in my last post I mentioned that exciting things are happening in regards to Levi's development.  Over Christmas break he started doing and saying things he has never done or said before! He started mimicking words regularly (something he did very infrequently before).  He started making animal sounds at the appropriate animals without being prompted to do so (he would rarely do it when he was prompted and only for a couple of animals).  Now he knows several animal sounds!  He started pretending to eat toy food and talk on phones.  This is a huge step as he had never pretended before.  He has also starting bringing us toys and books to play and read with him.  Again, this is something he's never really done.  These things might seem simple to most people, but they are things he should have been doing six to twelve months ago.  So, to see growth like this so quickly is very encouraging!  We are quite encouraged by this development and are hoping to see him continue at this rate.

The main thing to keep praying for is that he is still inconsistent in all of this.  This could be caused by his yucky seizure meds, but the developmental specialist said it could also be a sign of autism.  She said he is not on the autism spectrum at this point, but that if he continues to be inconsistent in his attention and his performance that we may have to reevaluate.  Before we do that, though, she wants to try to get him off of his current seizure medication and onto something that doesn't cause developmental problems like this one does.  The ONLY reason he's on it, at this point, is because his seizures were doing more damage than the medicine could do and the regular seizure meds weren't stopping the seizures.  But, since they've been stopped for awhile, we'll be talking with Dr. Q about when we can make some changes.  He's the ultimate deciding factor for that. But, once we do change his meds we'll be able to tell what is causing his inconsistency.  Please pray that it's the medication and that we can switch to something new soon!!

We have another appointment with Dr Q as well as another EEG in a couple of weeks so I'll have more to share soon.

Monday, January 14, 2013

Catching UP

WOW!! It's been two months since my last blog post!  I've got some serious catching up to do.  So, I'm going to cut to the chase.

November, as you may have noticed by the hideous redecoration of my blog site, was National Epilepsy Awareness Month.  I successfully posted about epilepsy two or three times and then got sucked in to the craziness of the holidays.  Making homemade stockings and hand warmers for my entire family ended up taking my every spare moment.

I also spent A LOT of time in the doctor's office waiting room - twice a week for four out of six weeks (all of Nov and the first two weeks of Dec), and once a week the other two of those six weeks.  It was a little crazy.  But, things are slowing down now so I've been able to have some chill time over the past week or so.

On to the Levi front.   Of course a goodly portion of waiting room time was for him, but I'm happy to say that his appointments are going to be spreading out a bit.  Hooray!  I will, though, share the results with you because that's what I do here :)

The big appointment that we had with Levi was toward the end of November.  We met with a developmental pediatrician who, you guessed it, assessed his development.  She asked me a million and two questions and observed him while he played and played with him and talked to him, etc.... etc.... etc....  In the end, she said what I already knew.  At 23 months old he was assessed at a fourteen to sixteen month level for play and physical coordination, but at a twelve to thirteen month level for language.  Like I said, this wasn't a huge surprise to me considering my previous post about Jack.  It was disappointing, though, to hear it as an official assessment.

Do you remember that one time in one of my previous posts that I cracked that one funny joke about how if Levi is six months behind now then when he's thirty people aren't going to get on to him for acting like he's twenty-nine and a half so I have nothing to worry about?  Well....., apparently that's not quite how it works.  Instead of months behind, it's percentage behind.  So, according to the doctor, he's behind by about thirty percent.  So, if he's behind by thirty percent at the age of thirty,.... well..... you can do the math.  So, that was disappointing as well.  But, she did say that children who start out on track, like Levi did, and then have some kind of event or medical situation that causes the developmental delay, like Levi did, have a better chance of gaining ground back.  She just didn't want to get my hopes up, because it is also likely for someone in his situation to remain delayed.

So, I was rather disappointed and have really struggled with it, especially for the first few weeks.   It's not easy to realize that your vision for your life, and your child's life, might not be even close to what you expected and dreamed.  So, I've had to let go of some dreams and ideals that I never thought I'd have to let go of.  It's been hard, but, amazingly, it's been liberating.  I'm reminded, again, of God's sovereignty.  I'm not in control of anything and the reality is that no matter how well life goes, things aren't going to go quite how I expect them to.  And, the more I can let go of my dreams and just let God have His way, the more I'll be able to handle it and even embrace it and be content and happy when things don't go my way.  I'm not saying I'm giving up hope for a complete recovery.  On the contrary, I know Levi will have a complete recovery.  I just don't know exactly what that will look like.  And I'm becoming more and more okay with that every day.

Now, since Levi had that last appointment there have been some pretty exciting developments in his development (ha.  developments in his development. I'm funny.) But, that's for another post.  This one's getting too long.

To Be Continued..........