MNRI Camp Day Two

Well we are so grateful for those who gave generously for this to be a reality for Alex.  When we arrived last Friday afternoon, we went right away for Alex's reflex assessment with Dr. Masgutova (founder of MNRI).  She remembered Alex from his February mini clinic and the reflex assessment results he had at that time.  She noted improvement in a handful of reflexes for him.  Some were about improving his muscle response so he wasn't hyperactive in muscle tone response, some was about a reflex improving by 30%, and one reflex we haven't really worked on was completely 'there'!  Which just goes to show that even by working on other reflexes, they are all linked together.  Alex still has much work to do though.  Some of the reflex patterns showed no improvement and they continued to be rated at needing to be worked on five days a week. 

Most of the special therapists here are directly from the MNR Institute in Poland and only a few speak both English and Polish.  They are very skilled at the work they are doing and I am watching, following along and even learning how to do the same work on Alex after the camp is done.  Alex has six sections, all fifty minute sessions, each day of hands on work.  He does Tactile Therapy to address his sensory integration; something called Neurostructural work to address 'communication' in his nervous system; Archetype movements to lay the foundation for the reflex patterning; Reflex repatterning to address his needs in activating and integrating specific reflexes; Visual-Auditory-Facial work on their respective reflexes; and had ended each day with either developmental activities (play) while on a Balance Board or today work on Head Righting with Cognitive and Proprioceptive Integration. 

It was so thrilling today to see how spending just a few minutes working on Head Righting with our amazing therapist Alex was able to go from floppy head to actually righting his head as he was pushed sideways!!  It was so cool!  Even more exciting is being able to visually see other children here make noticeable improvements after only the second day.  Since I am here with Alex on my own, I haven't had much time to socialize with the other parents.  I have had a few short interactions which have been great.  It has really made me feel like I'm not alone-others do have it hard as well and my heart just goes out to them.  Sometimes I wish the parents like us could be on the receiving end of this work as well.  If it can do that for our kids, how much more will it help relax us as parents who have it so hard and enable us to fill our 'cups' so we have more to give back to our kids.

I am looking forward to tomorrow, Day Three.  Alex will have his first opportunity to have deep hands on work with someone from the Polish therapy team, who is one of a few people in the world who does this kind of work.  I am looking forward to seeing what it is and the extent of changes that can come from it.  Alex continues to be his charming self and is not afraid to talk to any and all of the adults here at the conference, including Dr. Masgutova.  Today he was trying to teach one of his Polish therapists Knock Knock jokes in English.  It was pretty funny.

It has been nice to get a break away from home and feel re-energized in some ways with this work.  I have been fortunate enough to have had some of the classes already so it's nice not feeling like I don't know anything.  I have appreciated the relatively stress free environment of being here at the conference.  We have a nice hotel room with separate living area from the bedroom.  Alex has had a lot of positive guidance and support while he's been here, despite a somewhat less than cooperative reaction at times.  I know that he feels respected and that that is making a difference.  I don't think most people realize that behavior is not necessarily intentional.  I can see for Alex that his actions are often misinterpreted.  When a child doesn't have the awareness of his own boundaries and body in space, that leads to many things like invading other's personal space, accidentally hurting someone because you had no awareness they were there, etc.  The work he is doing here will never have a chance to anchor and hold if he is not in a stress free, supportive environment.  The goal is to create a safe environment for him to have the chance to develop the way his body was created to develop.  We just have to figure out how to get there.

Randomness

I was having a hard time trying to come up with a title for my blog entry this week but as I sit and reflect on a few things I've been thinking, reading, and meditating on the word 'Random' and it ironically hits the mark! 

I will admit that last week was especially tough for us emotionally with what would have been Braden's birthday.  Then things got a little tougher for me last Thursday as I received a call from Logan's Pediatric G/I doctor at the U.  Logan's endoscopic biopsy of his small intestine was consistent with Celiac's Disease.  I felt completely overwhelmed and wanted to run away from home which includes my responsibilities as a mother and wife.  I have already had Alex on a gluten and dairy free diet for over a year now, but honestly being on a gluten free diet is incredibly expensive.  The only way to try and save money is to invest much time in buying alternative ingredients and doing a lot more cooking from scratch.  I love to cook so that's not the problem. It's the time factor involved- I am simply emotionally exhausted and knowing that I have to summon up the extra energy to delve into finding new recipes that will work but most importantly taste good feels overwhelming right now.  Gluten free food has come a long way in the past six years since I first experimented with it on Alex.  However, it's still not quite the same taste or texture.  Logan is taking the news better than I thought he would.  While the doctor told us there is no 'cure' for Celiac's Disease I felt blessed to hear today from our Naturopath that healing from Celiac IS possible and that at his age he's more likely to regain his health if we follow specific steps.  But for the more immediate time being, we are gradually transitioning him to gluten free foods and making sure there is no contamination of shared surfaces.  The doctor said that contamination from microscopic particles, over time, can actually lead to cancer and other organ failure.  Because of his diagnosis, the rest of us have to be tested.  So far Evan was completely negative and while I had a low number on the test it was within the 'normal' range.  As a mom it's hard for me not to feel responsible for his illness.  I have taken great pride in buying food for my family that is natural or organic and without added fillers, colors and preservatives.  I have also invested some time and money the past few summers to buy a farm share so that we can have fresh food every week.  I have carefully monitored what goes in their mouths and try hard to really limit the junk.  I am humbled it just wasn't enough for him.

I think it's fair to say that last week I was shouting at heaven asking for a break from what felt like a continuum of trials.  I have been trying hard to refrain from thoughts and feelings of self pity.  I have tried my best to take things as they come and perservere.  After all, isn't that the 'mandate' we have as Christians?  I mean doesn't Jesus say in the New Testament that if anyone is to come after Him they are to deny themselves, pick up their 'cross' and follow after Him?  Someone I know from college posted this the other day on their Facebook wall:  Jesus never said, "If anyone would come after me, he must deny himself and take his cross and then he'll lead a happy, safe, and comfortable life."  I totally agree however it's hard not to feel like a modern day Job at times.  My intention is not live as a martyr but I hope that somehow through the difficult life circumstances I've had to go through that it will have an impact on others.  The only thing that brings me comfort is to know that my life can point others to my Savior.  I know that God heard me because the book of Joshua in the Old Testament was brought to mind.  For a time when we attended Grace Church right before and just after Braden was born, there was a guest pastor whose sermons took us through the entire book.  At that time, the messages brought encouragement on a difficult journey and hope for the road ahead.  As I opened my Bible and began to read the first chapter I couldn't help but notice the commands given to Joshua leaping off the page at me.  He was exhorted not once but THREE times to be 'strong and courageous' and in the second command the word 'very' was added.  For a few days that brought some encouragement.  You do everything you can as a parent but things like medical diagnoses of Autism or Celiac and shunts failing for no apparent reason feel so 'random'.  My perspective was challenged today.  I read in A Grace Disguised the following:

(about the author's reflections on the Old Testament story of Joseph) "Still, even within the limits of his lifetime Joseph understands enough to  say to his brothers, 'You intended to harm me, but God intended it for good...' Joseph acknowledges that great evil was done against him; but he also believes in the face of that evil that God's grace has triumphed over it.  He recognizes in the unfolding of his life that God is good in ways he could not see earlier.  The Joseph story helps us to see that our own tragedies can be a very bad chapter in a very good book.  The terror of randomness is enveloped by the mysterious purposes of God.  In the end, life turns out to be good, although the journey to get there may be circuitous and difficult."

And then in addition to reading that, I read an online devotional today on Naomi's perspective on her situation in the book of Ruth.  Naomi (after losing her husband and sons) had "perceived destitution bred palpable desperation" and "Her tomorrows were grim. Bleak days awaited till death reached out its welcomed hand. If only she had known: the answer to her Why? valiantly fought to walk alongside faithfully. Ready to reap a harvest of salvation. Yet Naomi kicked scorn and anger around, rejecting Ruth and redemption. When brick walls are hit, ropes frayed, moments blank, remember...though unseen, God works on our behalf always. And rescue may come in unexpected form. Embrace His plan, return to Him and take heart.  The place you fear will be the death of you, may be the place you reap new life." 

God was transcendent in Naomi's life-He was already at work in the bigger picture making sure she would be taken care of for the rest of her earthly life.  She just couldn't see it. 

Reading the thoughts of these two authors today spoke volumes to me and reminded me that my life's story is in the process of being written.  Continue to be patient and trust.  The events of my life are not 'random' but accomplishing a far greater purpose than my limited human perspective can see at the moment.  I continue to hope that the pain I have to experience and feel will make me a person of great compassion and depth.  My journeys have taken me on the 'Road Less Traveled' for sure.  At times it's been lonely and one I would not have chosen for myself.  I am thankful for those who have joined me on my journey and who accept me for who I am. 

Happy Birthday Little Man

Yesterday would have been Braden's third birthday.  It was a bittersweet day.  I think it's fair to say that our hearts still hurt very deeply and it's hard to hold back the tears.  We all love him and miss him so much.  He brought so much laughter, smiles, joy and happiness to our family each and every day.  I know it's easy for some to romanticize a person once they are gone-lifting them up on a pedestal and minimizing their human faults.  For Braden in his few short years here on Earth, he really didn't have many negative moments with us.  He had moments of fussing or not wanting to do something but he was not a crier or complainer.  He loved to laugh and make us laugh.  He would try and get our attention and make us laugh at the dinner table each night by saying or doing something silly.  He loved to wrestle with his dad and brothers.  I am glad that I was able to join in a few times with our little wrestling matches after dinner time.  It has given me good memories of Braden trying to squash me and jump up and down on me.  He loved to jump on our bed, pull the light cord on our ceiling fan to turn it on and off, and to fall straight backwards onto the mattress.  In the mornings he would yell at us "get out!" because he'd want us to get him out of his crib so he could come snuggle up with us under our covers.  He'd like us to lift the covers up and pretend we were in a cave.  He'd always say there were 'bears and penguins' inside!  He also loved to play peek-a-boo with us and inevitably he'd end up laughing and laughing.

I am so thankful for the special people in my life who have reached out to say they have been praying for us, they are thinking of us, and for the reminder from Braden's grandma that he is in a much better place, smiling and having a good time-it's just hard for those of us whom he's left behind.  I was also touched by receiving a special drawing yesterday from my friend Nicolle.  It went along nicely with mom's words to me.  It's an eight by ten drawing of Jesus and Braden skipping in a grassy meadow in heaven.  We went to visit his grave site at the cemetery, taking him cut flowers from our yard and three balloons.  How ironic though that one of the balloons broke after tying it off.  We took time as a family to go for a walk at Lake Phalen in St. Paul, grab some amazing pizza at Pizza Luce for dinner (and it was so great to be able to eat somewhere that everyone in our family could be accommodated) and a few giant cupcakes from Lunds before bedtime.

I have been busy since my last post with doctor appointments for Logan and Evan.  They have had camp physicals, recurrence of strep throat for Evan, and even an endoscope procedure for Logan.  We are still waiting for the results of the scope.  The doctor took biopsy samples to see whether Logan definitively has Celiac's Disease.  He had four episodes of pain in his tummy that kept him home from school.  I know already that everything looked fine on the scope except the start of his small intestine.  I am anxious to hear about the pathology and what the next steps need to be.

I am also very thankful for the people who gave generously to Alex's therapy camp.  Because of their generosity he will be able to go and receive intensive therapeutic intervention.  I will be going with him to the therapy camp which is being held at the Northland Inn in Brooklyn Park, MN.  We will be checking in on Friday, July 22 and finishing up on Sunday, July 31.  Being immersed in MNRI therapy will be part of my journey to healing as I was in the middle of a four day class in Archetype reflex patterns when Braden's shunt failed.  I have not had the courage to pick up my course manual yet.  In fact I've been good at avoiding a lot of things-I'm just not ready to deal with the pain yet.  It's easy too for me to avoid friends and family on Facebook and on this blog.  Not that I'm intentionally avoiding social interaction-I'm finding it's the one thing I really want and need right now.  It's hard to find the motivation to do some of the same activities I once enjoyed.  I am appreciative of offers to watch the boys.  It has been good to get a few hours away.

Going back to Michigan in August for vacation will be difficult but necessary and healing at the same time.  Some days I wish I could just pack the kids up and just stay there for the summer until it's time to come back for school.  But we have golf lessons, baseball playoffs, adaptive softball, weekly therapy appointments and a park program that was already paid for so there would be opportunities to get out and play with other kids.

I started to meet with a woman from church through Stephen's Ministry but have found that if I'm able to connect with a few close friends and do some therapy work myself, I'm okay.  It's hard for me to leave the boys with dad-you know moms just intuitively know what their kids need.  Kim if you are reading this, know that I am so thankful for your support with Alex.  It's nice having a friend who walks in the same shoes and can have an impact on your child.  Just wish you lived closer!

Thank you Braden for the laughter, especially in the darker moments of life.  You are not forgotten and we will continue to look for you in the small blessings of our lives.