2 Years!

This weekend marks two years since Levi got out of the hospital with his sudden onset of seizures.  In fact, today is the North Mankato Fun Days, which is exactly where we were when he had his second cluster of seizures that confirmed to us that something was, in fact, wrong.  We ended that day with the beginning of a week long stay in Mayo Clinic in Rochester.

His prognosis has been up and down since that point.  If you've followed along, you know the story.  If you haven't, here's a brief synopsis - his prognosis has been up and down since that point. :) Yes, I'm being that brief, because I want to share our most recent situation.

In March of this year, Levi had a burst of language that, I believe, more than doubled his vocabulary.  He was speaking in four and five word sentences all the time and even more complex sentences on occasion. Toward the beginning of May, we started to feel like he was maybe using fewer words than he had been. We, and his speech therapist thought maybe he was just having a bad week.  Within less than three weeks he had lost so much language that his speech therapist told us to call his doctor right away.  So, naturally, we called his doctor right away.

Dr Q (our pediatric neurologist) wanted Levi to come in for a 24 hour EEG as soon as possible.  His concern - a type of seizure that happens during sleep and causes loss of language.  So, the next day, we headed over to Mayo for a couple of nights.  They didn't see what they were looking for so we decided to take the next step, an MRI, to see if there were any physical abnormalities in Levi's brain.

It took a few weeks to get in for the appointment.  So, on June 30, we trekked back over to Mayo for an early morning MRI.  They didn't see any physical abnormalities, which is good, but they did note that the coating on the nerves in his brain was not forming fast enough.  This had us worried for a couple of days, but after consultations with several neurologists, it was decided that the delay in the coating was so minimal that it couldn't possibly be causing any problems.  In fact, they seem to think the development of the nerve coating will catch up.  So, we still had no answers as to WHY Levi has lost his language.  This led Dr Q to recommend genetic studies and he sent us to the Developmental Pediatrician, Dr T.

This leads us to yesterday's appointment with Dr T.  At this point, Levi has now lost at least 75%-80% of his language, probably more, but I'm trying to be upbeat.  He doesn't SAY much of anything.  He can point to things if you ask him where it is, but he can't say the words.  (Please don't ask if he's just being stubborn.  NO. He is not.)  He actually tries to say the words, but it all comes out in jibberish, like a stroke victim.  No he hasn't had a stroke, but his speech therapist and Dr T feel that it is possible that he could be having seizures or some kind of abnormal activity in the same part of his brain that would cause a stroke victim to do this.

So, yesterday's appointment with Dr T went something like this: I fill out the usual developmental survey.  Dr T looks at the results.  Dr T is very concerned about the results.  Dr T actually leaves to get a neurologist in the room with us to help with a game plan.  Dr T returns, unsuccessful.  Dr T gets a nurse and barks out a list of orders to have her MAKE SURE we follow up with other doctors.  Nurse says there's a six month wait list to see said other doctors. Dr T says to request that Levi be placed on the top of the waiting list as this is an urgent matter.

These other doctors will require much more testing.  We're actually trying to get bumped ahead with some of our other appointments and testing as well.  But, we're looking at the next months being full of trips to Mayo Clinic for lots more tests to find resolution for this loss of language.

At first, I was discouraged about the urgency of these tests.  Both Dr Q and Dr T are adamant that we get Levi in for these tests as soon as possible so we don't risk his losing other skills.  This is scary to me.  But, my (nurse) sister put it this way - if Levi's doctors think it's urgent, it's because they think they can do something about it.  If there wasn't any way to help him, they wouldn't be pushing so hard to get him tested right away.  This is encouraging to me.

In the end, we're trusting that God has the perfect plan for my son.  Though, he has very little language at three and a half years old, he is happy.  He gets to see the world from a perspective that NO ONE ELSE will ever get to see it.  He is beautifully and wonderfully made and I thank God for that.

Here is a song I wrote for my sweet boy while we stayed in the hospital for his EEG last month.



And a picture on the ferris wheel today.  Thank you North Mankato Fun Days for offering free rides and food to our special needs community.  It made for a happy day for so many!!

Seven Years

When I started this blog, it was because I needed a creative outlet.  I shared my music, poetry, and random thoughts about life.  Nearly two years ago, I found myself in a hospital room trying to text lengthy updates about Levi and his condition.  That, obviously, didn't work very well and sparked the evolution of this blog. Since then, I've focused on Levi, his condition, and the effects it has had on our family.  Today, though, I want to shift the focus, a bit, to my husband.

This week marks our seventh wedding anniversary, which is, in part, why I want to celebrate my husband.  I say, 'in part', because I've wanted to do this for months now.  I've just never gotten around to it and our anniversary gave me that extra oomph to get it done.

And now, the words:

Of all of the people on the face of the earth, I respect my husband the most.  He is one of the most genuine, thoughtful, generous, and patient people I know.  He SERVES his family.  He works excruciatingly long hours and follows that, not by plopping down on the couch to play video games or watch sports like his stereotypical American counterparts; but rather he ends his long days (the ones that he doesn't work until midnight or later) by playing with our children, helping with the dishes, and rubbing my aching back.  He helps with the little things like getting the kids out the door when it's time to leave or by preparing breakfast for us, on occasion, before he leaves for work, while we're still sleeping.

He is strong.  Some jerks (Yes. Jerks.) might see what he does and say he's 'whipped'. On the contrary, there have been countless times that I have pleaded with him to stop and just sit down, but he, being the strong (stubborn) man that he is, insists on serving his family.  He knows how to put his foot down.  It's just that he serves us out of a quiet strength.  He's not a William Wallace from "Braveheart" who runs in front of the masses and cries out in elaborate speech for the sake of a cause.  He's the warrior directly behind William Wallace, who courageously fights at the front lines, setting the example of what it means to take a stand, not with words, but with action. He is that kind of strong.

He puts Christ first.  He bases his decisions and actions on the Word of God.  His strength and his service are prime examples of how he strives to be like Christ.  He is passionate about seeing the glory of God heal and transform broken lives.  He is steadfast in his faith and his relationship with God,  Through everything we've gone through with Levi, he has turned his own broken heart over to God and been concerned more for me and our boys than for himself.  

All of this together, and so much more, lend to my having the best husband I could possibly have. I could go on forever, but I don't want to make all of you other ladies out there feel too jealous. :)

Seven years!  Seven incredible, beautiful, and sometimes difficult years!  And no itch!  That's not to say we haven't had our moments, but that's all they were - moments. We leave them at that.  And, though the fiery romance can be interrupted with long shifts, poopy diapers, and snotty noses, it is through those very things that I have found an even deeper kind of love - respect.  I am truly overwhelmed by the respect I have for my husband.  It wells up inside of me and I just have to get it out!

Happy Anniversary Jeremiah Luntsford!  I love you!

My Hope

It's been a crazy couple of months since I last posted.  Crazy and difficult.  And good. I haven't posted before now because, honestly, I haven't had the heart to do it.  We got some negative news about Levi a couple of months ago that kind of sent me into an emotional whirlwind and I just haven't been able to put it out there in the wide open web.  Until now.

To be brief, in a matter of two weeks, he had two tests and several appointments that landed him with a worse developmental diagnosis than before.  When he first had the seizures (a year and a half ago), he was assessed as functioning at about 30% behind.  We had actually been hoping that he was catching up.  Unfortunately, the tests show that he has actually fallen further behind and is now functioning closer to 40% under his age level. We're talking, he may not ever be able to be fully independent as an adult, behind. Even now, I can't come up with the words to describe how this impacted us.   

The first couple of weeks were accompanied by several emotional break downs. At first, I couldn't tell anyone.  I couldn't say it out loud.  I didn't want it to be real.  But, when I was finally able to share it, we found what an amazing support system we have.  A few people came and prayed with us and each of us took a day of the week to fast for my boy.  I don't know if you believe in prayer.  I do.  Along with a new listening therapy, that week started a burst of language for Levi.  Since then, I would say he has almost doubled his vocabulary!  He still has some communication blocks and many other difficulties, BUT, we're watching him progress quickly and I am hopeful for good news at his next appointments and with his future testing.

With what I've learned through all of this, I know that there's still a chance that the numbers haven't changed for the better. There have been so many sudden spurts of development and, so far, the numbers have only gone down. But, a good friend reminded me that my hope is not in how my son is performing.  Rather, my hope is in Christ.  It's easy to lose sight of that, but remembering it has completely changed the way I've been able to look at this situation.

I know that no matter what happens, my hope is found in the One who can use Levi, just as he is, to make a difference or if HE wants, He can change it all in a moment.  I don't like the unknown.  But rather than focus on what I don't know, I'm going to lean on what I do know - My Faithful Faithful God.

Here is a song that has helped to carry me to that place of trusting in Him without the borders of my own will and desire.  

  

Camelot

"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

Inadequacy

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

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.

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.