The Joseph Trilogy (Part 3)

http://www.desiringgod.org/blog/posts/the-joseph-trilogy-part-3#.Tut_DQzkTRl.blogger
**(please click this link and read before you read my blog below, thanks!)

As I sat this morning and read through this blog post it was exactly what I needed to hear. Many points made in the blog hit me in all the right places. There are several things in my life right now that have me either bewildered or feel like I was given a road I didn't want to take. I must confess that my heart felt much like Ebenezer Scrooge ('ba hum bug!) at the thought of the season and especially hearing Christmas music in retail stores in October! I know that I am the recipient of prayers sent-as quickly as a dear friend shared she was praying for me, God had already started working in my thoughts and my heart. It's good not to be alone on the journey. Life has not been easy and unfortunately my immediate circumstances have prevented me from being an active part of a bigger faith community. I can't count the number of times I've asked the Lord how this makes any sense since the Bible clearly instructs believers to stay in 'community'.

I think the biggest and most obvious twist in my life has been the sudden and unexpected death of Braden. It is completely ironic. I was 'done' having children after Evan (now 8) was born. Having an extremely needy autistic child along with two others felt like I was managing a dozen kids at once. There were many ups and downs and several challenges with our school district to get them to provide the support that Alex (my 'Aspie' now 13) needed. Then the continual struggle to attend church one morning a week with not a lot of compassion or assistance from our faith 'community' just about became the proverbial straw that broke the camel's back. It felt like I was in the middle of a huge storm and I recall falling asleep in tears crying out to God for mercy and deliverance-especially on Alex's behalf as I was vaguely aware of the abuse he was undergoing at school from staff who had no business holding a teaching license. Then when that school nightmare was just about over, I learned I was suddenly 'pregnant'. I was in shock. I couldn't understand any part of it-what part of our lives did God not see or understand. I mean how in the world was I supposed to continue managing the needs that I had only to be caring for a new baby? It made no sense. However, I was very thankful and excited. Things seemed to have calmed down and life was moving along until my four month ultrasound.

That's when it felt like someone had dropped a nuclear bomb on my heart. Going into an ultrasound you don't expect to hear bad news, especially the news we received. The medical staff promptly told us that Braden had fluid on his brain-and not just a little-A LOT. They sat us down following the ultrasound to fulfill their professional obligation to encourage us to strongly consider the 'options.' They didn't delay in giving us the worst case scenario possible-everything from he won't walk, talk and will be severely retarded. They were convinced it was a genetic disorder (which I found out later in talking with a friend of a friend who also had a baby with similar condition and went to the same hospital for her ultrasound that must have been the diagnosis 'de jour' of 2008). We were firm with the doctor that we would never consider abortion and we would have this baby.

After a few days home and a few dozen prayer requests sent out, I attempted to start a blog. I spent a few hours each day trying to learn all I could online. I was so encouraged by the moms who had been given even worse diagnoses and their testimonies of how their children turned out. I felt I was finally turning a corner. I had even managed to have Cranial Sacral Therapy during my pregnancy in hopes that it would change Braden's condition. It didn't change his condition but it did change mine. I will never forget getting off the table and feeling so full of joy that it lasted for two whole days. My storm cloud of emotions was gone. During the remainder of my pregnancy I had to be closely monitored and had to have a birth plan that included a pediatric Neurologist and Neuro Surgeon and an NICU. I had to undergo several more ultrasounds to continue to monitor his growth and what was going on inside his little noggin. I came to really like one physician in my clinic who did an amazing job of telling me that Braden's head size was full term at seven months but it wasn't grossly huge like many babies with the same condition. We made plans to deliver him at 38 weeks but that's not what happened.

At the next office ultrasound appointment another doctor met with me and was insisting that I deliver him in the next few days despite what others doctors in the practice had informed me. I went home upset and called the clinic to talk to the head doctor, who was out, BUT the previous doctor I had seen was in and went ahead and cancelled the delivery. Things settled down a bit until Logan contracted Fifth's Disease. Since I had been exposed, I told the doctor at my next appointment and was screened for it. Sure enough, I had the disease but was told it wouldn't make much difference at that stage of my pregnancy. So in planning a mid-July delivery I felt I had plenty of time to get ready for Braden as we celebrated the Fourth of July. Um no......WRONG! Saturday July 5th I was planning to go to the mall to look for a robe but felt really tired. Alan had started painting the deck railing. I decided to lay on the couch while the kids watched a movie. Well, as I turned over it felt like I had to go to the bathroom and well-ended up jumping off the couch, running for the bathroom. Yup, baby decided he was coming that day. After making a hurried phone call to my brother to get him to the house to stay with the boys, Alan rushed to throw things in a bag and get me to the hospital. I was pretty pleased that the doctor on call had been the one I really liked. The labor and delivery went fine and expecting a ventilator and other medical machinery, Braden didn't need any of it.

His growth and development far exceeded any human doctor's expectations. He was an amazing, loving, and funny little boy. I think my mom said it best the week that he went to heaven-that he came unexpectedly and left just the same. During his short time with us, life took a small detour. I finally found a church that was able to embrace all my children and one in which I felt I personally could grow. I have not been able yet to connect within the church community as I would like, but that is on my 'to do' list. Life changed in other ways for me as well. I no longer have the daily fellowship and friendship with an amazing and godly young woman. I also have had the unfortunate experience of losing another friendship this year. It's still something I struggle with as this person has failed to see how much hurt and confusion they brought to my life. I am trying to figure out the 'what's next?' part of my life. When you aren't sure what to do next, Elisabeth Eliot says "do the next thing." I'm still trying to figure that out as I muddle through each day. I had started helping my sister in-law out at her office a few days a week. However, my kids have had all kinds of injuries and illness this fall that prevented me from going in every week on a consistent basis. I was given the rest of the year 'off' the week of Thanksgiving when my parents were in town visiting. I'm just waiting to see how things will change once the new year begins.

It's amazing how quickly life changes from one year to the next.

...and We're Back!

It's hard to know where to begin since it's been almost six months since my last post.  Much has happened since that time and I'll do my best to get caught up so here goes!

First and foremost I am incredibly grateful for all the generous financial support that came our way to raise money for Alex's therapy camp this past summer.  It was a true blessing and the changes that occurred in that boy have been profound.  He quickly became endeared to his individual camp therapists, despite the Polish language barriers with three of them.  Alex made an impression on all of them and on his post assessment with Dr. Masgutova, she said that Alex has become a 'dear friend' of her organization and asked if I would please keep in touch with them to let them know of his progress.  Alex had six hours a day of hands on therapy and most of that required his participation.  I could see that he left an indelible mark on their hearts.  Mariola was his neurostructural therapist from Poland who could not speak or understand much English.  She gave him a small porcelain elephant on his last day at camp.  Danuta was his Reflex Repatterning therapist, also from Poland and not speaking or understanding much English, who had an incredible amount of energy and patience in working with Alex.  I felt privileged to have the opportunity to work with her as she asked for my participation in the exercises on Alex.  Sharon was his vision and auditory relex therapist (from Texas) and boy was she a hoot!  She had all kinds of jokes each day for Alex and did a great job getting him to engage in therapy.  He had LOTS of laughter and fun with her.  I appreciated her past teaching experience in working with kids his age in being able to engage and obtain his cooperation.  As a parent, the most impressionable moments I witnessed with Alex were seeing him so completely emotionally, physically, neurologically different immediately after getting off the table from a special protocol only available and performed by Dr. Altov.  Alex was able to have two direct sessions with Dr. Altov of Poland-and let me tell you, I was given a 'heads up' by everyone who'd been in that room before us to be quiet, get on the table and just let him work.  By the time Alex was done receiving deep neurostructural work, he was very quiet, peaceful, calm and incredibly cooperative.  The second treatment he received was just prior to our dinner break after which we were to have a big family celebration party and share our successes from the week.  After his session with Dr. Altov we went to dinner together.  Can I just say that after getting our food and sitting down to eat, for the first time Alex only spoke when he was spoken to and equally engaged me in reciprocal conversation!  If you know Alex he loves to talk constantly about whatever special interest is on his mind, never mind that anyone is listening.  He was quiet, not talking at me and actually asking me all kinds of appropriate social questions.  The last day of the conference we had a post assessment evaluation with Dr. Masgutova and were sent home with a specific set of home based MNRI exercises to do and they are anywhere from 2 times a week to 5 times a week.  I am doing my best to try and keep up with it all.  I'm continually grateful for our friend and MNRI therapist Tammy Feigal for her continued commitment to working with Alex twice a month.  We feel blessed to have her on board as part of Alex's special team. 

Alex is excited to return to the same school he's been at for the past two years with the same teaching staff.  There's something about consistency that most regular public schools don't 'get' in dealing with kids on the Autism spectrum.  The new challenge though is that since Alex made huge gains at camp last summer, he is in a better place for academics and is easily bored at school because he's not getting enough academics to keep him stimulated.  He only receives Math, Reading, Writing and sometimes a random lesson on a different topic.  He has shown an eagerness to want to learn more so I'm considering other options for the future.  He's been on a kick lately with making 4D sports stadiums out of manila file folders and they are amazing!  He is also continuing with music therapy and playing a drum set (he has an incredible gift for rhythm and plays like he's had lessons before).  I wish his natural musical talent could be developed more but I'm only one person.

Logan and Evan both attended an all boys Christian camp (Camp Nathaniel) last summer and each had a fun time.  I felt so guilty for leaving Logan on the first day.  That's when we had record breaking heat and tropical humidity.  I started just dripping by standing outside at camp and we didn't have a fan for him.  He didn't sleep that first night and spent much of the week in the water.  He had a fun week.  Evan went with Alan for a four day stint since he was uneasy about the food situation at camp.  Evan is a highly selective eater whose diet consists of apples, carrots, bread and chicken. 

Our family took a two week vacation to Michigan in August and visited with family and had time up north on the beach.  It was definitely a different experience without our little Braden.  I was hoping to go to the park where he loved to play but I never made it down there.  I also got to enjoy a girls only weekend with the women of my family and had a great time.  We're looking forward to planning another weekend next summer.

Fast forward to school.  Logan is now in fifth grade at Hillcrest Elementary and loving the fact he's the oldest grade in school.  He ran for student council and lost and took it incredibly hard.  He came home incredibly upset and tried hurting his brother Evan (also a third grade student at Hillcrest) upon exiting the bus because Evan didn't vote for him.  To make matters worse, Logan ran for their multi-age class Boule as classroom representative and Evan didn't vote for him that time either.  Logan lost by one vote.  Logan is also required to play an instrument in band in fifth grade and has chosen to play trumpet.  He's struggling with not wanting to practice in favor of playing football on the Wii.  Looking like I not only have one boy going through hormonal changes but two as Logan is definitely digging his heels in hard with us.  Soon he will be starting basketball through our church as it participates in a church league.

Evan loves the fact that he has a male teacher this year at school and he is truly a really nice guy!  I'm excited for Evan that he has him for a teacher as well.  Evan loves to read and has been so incredibly helpful around the house for us.  He has continued working once a week with an Occupational Therapist at a clinic close to our house to help address his developmental needs.  We are so blessed to have a therapist there that is also trained in Dr. Masgutova's MNRI work but she also is getting certified in Cranial Sacral Therapy and he is benefiting from that modality as well.  The nice thing for my boys is that I've been able to take a few MNRI classes and have also started working on certification in Cranial Sacral Therapy myself.  I'm hoping my skills will continue to increase in order to better help them and eventually help others in need.  Both Logan and Evan are also involved in Wednesday night boys Stockade program which is very similar to Cub Scouts.

I have been busy with coordinating everyone's appointments and activities and have been incredibly busy with taking them to appointments and planning birthday parties this fall.  Once September hits the end of my year flies by fast.  After getting everyone settled into new school and appointment routines, I started going to work for a few hours twice a week at my sister in-law's chiropractic clinic.  Not long after starting my schedule was rudely interrupted by Alex's broken jaw injury that required immediate surgery.  Logan's knee made contact with his jaw while trying to grab a football outside.  Alex has a small metal plate implanted and his jaw (fractured in two places) is now healed.  Then after a second attempt to return to 'work' I had Logan home sick (he's been sick a lot this fall).  Then I was able to go back.....until..........the next injury-Alex tackled Logan outside and threw him into the fence and he hit his growth plate on his lower right arm and badly bruised it but had to wear a sling for two weeks.  Needless to say I've only been back twice this month to Morgan's office and her practice has slowed down.  I have the rest of this year off until she reassesses her business needs.

In an attempt to continue learning I have joined a monthly Cranial Sacral Therapy group to practice my skills and receive feedback.  I also took a four day class, split between two months, on Brain Gym and learning how to help others become neurologically and functionally 'connected'.  I feel with the loss of Braden my whole world has been turned inside out.  I felt like I was managing okay until Halloween.  I knew I didn't want to be home on Halloween and to be reminded by handing out candy that I had one less trick or treater this year.  Additionally, Logan was diagnosed with Celiac Disease and is Gluten Intolerant.  Add that to the list of severe food allergies that Alex and Evan already have (peanut, peas, sesame, soy).  Doesn't make for a great holiday anyway.  We went out that night for dinner and hung out at the bookstore.  Since that time my grief has weighed very heavy on my heart daily.  I miss Braden incredibly.  Some days it literally feels like someone quickly ripped a very sticky band-aid off my entire chest.  It burns. 

We just finished a nine week grief support for children through the hospital that met weekly on Tuesday nights.  The kids each went to separate groups based on age grouping and developmental level.  Going to the group was very helpful for them based on their feedback.  They did a great job giving the kids practical, hands on tools to bring along with them on their journey of healing.  Our last group, last night, they wrapped up and families came together in a big room and held a candle lighting memorial ceremony for our loved ones.  Both Alex and Logan were able to light a candle for their brother.  As parents we learned that kids don't express their grief like we do as adults which is a good thing and serves to protect them and their development.  They spend most of their time 'up' and engaged in their daily routines and sometimes aren't even aware that a difficult moment is triggered by their loss.  They don't spend much time in the 'down' side of the grief circle (where we as adults spent most of our time).  It was helpful to connect with other parents who've lost a child and be able to hear similar experiences and be able to talk about responses received from others.

We aren't used to talking comfortably or sensitively about death in our culture.  It's apparent that somehow most people who haven't gone through similar loss are looking to expedite our healing process.  It was discouraging to hear comments like 'aren't you done with that yet?'  or for me personally hearing from someone I thought was a close friend, "oh, you'll get through it!".  Really?  I can tell you I'm so appreciative of the people who've walked by me in my journey and haven't felt the need to share a pat comment of 'encouragement' with me.  I appreciate those who pray for me and my family daily and others who are just 'available' to spend time with me.  Grief takes a HUGE toll on a family and all the relationships within the family.  I'll be honest-right now with the holiday season our family is struggling in a major way.  We all have our own unique grief experience and since we're human I think we fail to give one another enough patience and understanding.  Consequently my kids are struggling to be kind to one another.  In order to preserve integrity in my marriage I can't really comment publicly but to say that relationship is being tested and I appreciate any prayer support you can give. 

I am thankful that our church has been incredibly supportive.  I feel nourished by the sermons each week by Pastor Roger Thompson-his teaching is so down to earth and I am learning so much.  We are blessed to have a wonderful Children's Ministry associate working to find high school volunteers to go with Alex to Sunday School each week.  These are incredible young men and I'm so thankful-that makes going to church possible for us, something that was always a struggle at our previous two churches.  We have an amazing Children's Ministry Pastor who has really been willing to engage and meet with my boys.

Now that I am not 'working' and home alone during the school day, I'm trying to figure out what in the world am I supposed to be doing now.  Lately I feel the message I'm receiving from God is that I need to start taking care of myself, making time to nurture my own soul.  I was encouraged by a pastor and Stephen's Minister to consider getting involved in the Women's Ministry at my church and making new connections.  I am thankful for the people that have been put in my path this year and the counsel I've received.  I have some decisions to make and am trying to make them as prayerfully and wisely as I can.  They say that you should never make any big life changes within the first year of significant loss and I'm doing my best to adhere to that advice.  However, my pastor says "If nothing changes, nothing changes!" and I believe my good friend Kim always tells me "does your head hurt yet?" (how many times are you going to hit your head on the brick wall before you figure out nothing's changing).    I like the definition of insanity-doing the same thing expecting different results.  So I'm trusting I will grow in my own confidence and courage to do what I know I need to do at the right time.

So if you find me or my family crossing your thoughts or heart sometime in the next month, please use that as a reminder to support us in prayer.  I am grateful for a few people who recently asked me when I would return to this blog and how much they enjoyed my writing.  That felt encouraging.  My ultimate hope is that my life experiences can be used greatly to be a benefit to others.  I have had to walk through many challenging life situations in my forty some years on this earth.  I know there is a greater purpose and am redefining my definition and understanding of the word "Blessing".  God chose many great saints in the Bible and appointed them to suffer.  It's our limited human perspective that defines 'blessing' as only 'good' things that happen to us whether it's financial, material, or health related.  A current song on the radio defines this so well and I'll close for today with the words to the song Blessings by Laura Story:

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Courtesy of lyricshall.com
'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

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.

Going to Therapy Camp

Well I was informed last night that we were able to meet our fund raising match with the Bridge to Healing Foundation and a little more.  So I will be going to therapy camp with Alex at the end of July.  I am so grateful that he will be able to attend and for the generosity of so many to make it possible.  This mom just isn't capable of handling much right now and the timing is good because Alex is making that oh so wonderful transition to the teen years.  In case you don't know, I've learned from other parents of older special needs kids that the transition for them is hellish compared to typical kids.  Yippee (can you feel my excitement?) 

Having to go through the loss of a child when you've been out of social circles for some time has been incredibly difficult and lonely place to be.  I am also struggling because there were a few close friends in my daily life when Braden was alive who now are too busy in their own lives to reach out to me anymore.  That is particularly disappointing and heartbreaking because no matter how difficult things could get, I could always find a big smile and lots of laughs.  It was nice to feel good about myself knowing I actually have a sense of humor and can make others laugh.   I am thankful for a few people I've been able to connect with the past few weeks to get out of the house with or without the boys  (and I especially enjoyed girls night out with my sister in-laws-thank you Minnesota Mule, Lemon Drop and the movies Bridesmaids).  I feel like my identity and purpose in life has been altered in a major way and I'm trying to identify the "What's Next" in several areas of my life right now. 

I have to be careful because I know that I can tend to have a 'thin' skin at times with others. I am finding it difficult to hear well meaning 'friends' make comments like telling me I need to connect with other moms who have lost children to find support.  Being in this place I don't want to be in right now I couldn't DISAGREE more!  I want to just be myself around the friends already in my life and possibly be reacquainted with others whom I've lost touch with over the past few years.  I'm not looking for others to give me advice, say something meaningful and spiritual, or to make things better.  I just want to be in the company of others and just 'be'. 

I am finding it more difficult as time goes on to keep up with this blog, mainly because I am trying to use discretion in what I am able to share.  Things are difficult.  Someone said that the more they listen to me share about events lately that it seems like they are peeling an onion-once you get past one layer there is another layer and there are also things that are interconnected.  I was counseled by someone last night to be prayerful about any decisions I am in the process of making.  It was a good reminder to be mindful since emotions can run strong and come unexpected at times.  I wish at times I could just turn my brain 'off' because I just think too much.

I am hopeful that I will be able to connect with other parents at therapy camp who have shared similar struggles in raising their special kids.  I am keeping my eyes open for opportunities personally and professionally.  I've even been thinking about going back to school to obtain licensure in a medically related profession.  I know that I will be in a position to continue learning more-not just for my children but hopefully for others someday. 

Almost There!

I am exicted to share that we are just under $1,000 away from our fundraising goal for therapy camp.  I can't begin to express the depth of gratitude I have for everyone who has so graciously made this possible for Alexander.  No matter what the size of the contribution has been, my heart has been deeply touched.  This is so meaningful for me at the moment.  Please email me if you are still interested in making a contribution.  If you don't need the tax deduction you can feel free to send contributions to me at my home address.  My deadline to get all money collected and into the Institute in Florida is June 28th.  I am hoping to mail off the final payment the week before to ensure it makes it there on time.

Tomorrow is the last day of school for the boys and they are really looking forward to summer  break.  They will definitely be busy.  Logan has already been active in baseball two evenings a week since mid-May and his team is doing awesome this year!  Logan also has made some great plays on the field, pitched a couple innings pretty well, and has already had a couple of nice power hits at his turn to bat.  I don't think he's had any strike outs yet.  Look out Boston!  We're also VERY proud of him as he received the Presidential Award in Outstanding Academic Excellence yesterday.  He said only a couple kids in each upper level grade received this award.  We're pretty proud of his achievement.  We are also grateful for the amazing teachers the boys have had this past school year.  Their patience and support is appreciated.

Evan continues to tell me that he is looking forward to being at home with me this summer and that he is especially looking forward to being with me again.  He's had lots of hugs for me this week as it's been a week where I've really needed them.  He is looking forward to spending a couple days each week at a park here in Bloomington hanging out with other kids and Park & Rec staff.  He struggles more with coordination of his motor skills so playing outdoor sports is more of a challenge for him.  He is continually looking for more activities to keep himself busy.  Every time we drive by the Ice Garden around the corner from our house and sees the sign for skating lessons that start next week he says "that sure sounds like fun!"  He loves going to the Bloomington city pool in the summers and is quite the swimmer.  I'm sure he will be busy playing with his neighbor friend (who also goes to the same school, same grade) when he is home from day care.  Alan doesn't mind the kid coming over as he already was begging Alan to cut our grass-which was great because our kids jumped right into offering help to Alan outside as well!  Alan put Evan and the other boys to work cutting brush in our back yard last weekend.  Evan was so excited about helping that he kept asking to help on Sunday in the backyard doing more work.  He is quite the helper and I appreciate that about him.

Alex is gearing up to go to five days of overnight camp on Trout Lake at Camp Hand in Hand (which is offered by the Autism Society of Minnesota).  Last year was his first time up there and we were pleasantly surprised how much fun he had and the quality of staff they have working at the camp.  We were especially thrilled that his personal staff at camp was the daughter of a woman who used to work with him in Sunday School when we were still at Wooddale Church.  I received a call from his program staff tonight who has been at the camp for several years and it sounds like MANY of the camp staff have been committed to returning to this camp every year.  Additionally, Alex's music therapist from the U of M works at this camp providing music and music time at camp which is another big bonus for Alex.  He has worked with Alex for a few years now and knows him very well.  It was so nice to hear from his camp staff tonight that his music therapist has already shared so many great things about Alex and how fond he is of him.  This staffer proceeded to tell me that everyone who works at camp knows and adores Alex.  I think that's pretty true of most people who meet him-he's great at showing his best side to others outside his immediate family. 

I am hoping to commit a couple nights a week this summer doing things just for me.  So if you live by me and want to hang out or go do something together, let me know!  My personal life has been on hold for a while with four boys.  Most moms are in the habit of putting everyone else's needs ahead of their own.  This has been especially true for me.  My new friend from church in Stephen's Ministry told me last night that it's going to be her new goal with me to help me make time for myself.  She said I need to spend more time right now just focusing on myself.  I know this is especially timely as the kids are home from school for the summer and two of them have evening baseball three nights a week.  I feel so out of the loop socially since I've had to give up a lot of personal time to my kids, including two children with special needs.  I have been out of the workplace for just over twelve years now and I'm already thinking ahead on that as well.  The clinic where I've been a patient for over four years and have been volunteering my time for a few months is now hiring.  I'm going to apply for one of the positions they are seeking to fill.  For me it's not so much about the money as it is the people and being able to give something of my self in a new and slightly different way.  We'll see what if anything happens.  For now, I need to spend the next few weeks 'recharging' my batteries for Alex's therapy camp at the end of July.  Grief is incredibly draining and exhausting emotionally, psychologically, and physically.  I am looking forward to continuing my learning in the MNRI technique, adding to the courses I've already been able to take.  I am hoping that my foundation of training will not only directly benefit my own children but others as well someday when the timing is right.  As I have taken a few classes and become confident in using the techniques with my own children, I have developed a greater passion for the work and want to use it to help bring healing to others. 

Doing My Best

Well I felt a little disappointed that we weren't able to find the time this past weekend to go see Braden's grave site.  The cemetary had called us last Friday morning with the news that Braden's grave marker had been installed.  It seems like it's taken forever for it to be delivered and put in.  I didn't feel like it was worth my time to visit his grave site without the marker there.  Alan has started meeting with a Stephen's Minister from our church and he suggested we might want to visit the first time without the boys.  I guess for me that wouldn't feel right.  I told the boys that his marker was in and that we would try to go visit this past weekend.  They were a little disappointed last night that we didn't get to go but that was mainly due to the fact we had promised after visiting the cemetary we'd go to the big park (Chutes & Ladders) practically across the road.  I told Alan it would be nice for us to go visit in a few days when our 90 degree hot spell is over. 

Logan is signed up for two nights a week of Bloomington boys baseball (which keeps us busy through July during the weeknights) and in a few weeks Alex will start adaptive softball another night of the week.  It's hard to believe that this is the last week of school-I know the boys are anxious to be done for a while.  Alex has increased anxiety over being home with siblings for a few weeks because he loses the opportunity that school provides to give him a break from his home life and they can provide him with a consistent schedule.   It's hard to know how losing a brother has affected them because they don't openly discuss their feelings and especially so around Braden's death.  I continue ot keep my eyes open and have it on my 'to do' list to look into children's grief groups.  We were told at the hospital that kids don't have difficulty until (on average) six months from the initial event.  That is a blessing in my mind-I know that I am not doing the best lately. 

I am thankful that they each have a few things this summer to keep them busy. Every circumstance that comes along these days seems to have a much greater impact on me emotionally than it typically would otherwise.  I'm an incredibly patient and long-suffering person.  However, the added stresses make it feel a thousand times harder to handle and cope.  Added stresses for us includes parenting three boys who struggle to get along with one another.  Most days lately I feel like running away and not coming back for a while.  However, the reality is that I can't.  I was able to take both Evan and Logan out for dinner last Friday night while Alan took Alex to a church social outing.  It felt like it took everything in me to have the energy to come home and spend time playing a game with them.  The pain of losing my 'baby' has set in like a thick cloud.  I have been thankful to have a few days each week to have been out of the house for a few hours helping my friends at Valeo Health & Wellness.  Being surrounded by such warm and wonderful people has helped lift me up.  I'm trying to figure out how I can continue that over the summer months with summer break.

I continue to have people tell me in conversation that they are 'amazed' at how I'm keeping things together and that they 'don't know how (I) do it.'  I can honestly say that without my personal faith in Christ I wouldn't be able 'to do it.'  I am continually relying on prayer and the prayer support of others.  I am trusting in a provision of grace, strength and an awareness of His love in my life.  I continue to seek the fellowship and support of friends.  I also have plans to meet with a Stephen's Minister from our church for the first time this week.  I am hoping that we connect well.  I had asked to meet with someone who has walked in at least one of the 'shoes' that I've had to walk in in life.  I realize that I can't do it alone.  It's been easy for us to isolate ourselves over the years with our unique family situation but it's come at a cost.  Most of it was not by choice-what do you do when your church says they aren't able to help your child attend Sunday School?  When you feel you've maximized your resources and your child is still struggling?  You manage to do your best despite the circumstances.

 

Update on Fundraising

I want to thank everyone from the bottom of my heart who has so graciously donated money for Alex's Therapy Camp.  This is a dream come true for us and we are excited to see the great things that will happen for Alex as a result of going in July.  I am also excited as I will be going with him and getting on the spot training myself.  I have been able to take some of the training already and it will also benefit Evan as well.  Evan's therapy clinic also uses Dr. Masgutova's MNRI work and we are seeing nice gains for Evan with it also.  This work will be timely for Alex as we have maximized many other avenues for him already and he still continues to struggle. 

The good news as of today, we are only $1,300.00 away from reaching our total goal of $8,000!!!  So if any of you were planning to donate money toward his camp we need to have that money sent into Bridge to Healing or directly to us at our home address by next Friday June 10th.  Bridge to Healing will be able to provide a tax deductible receipt for you if you so choose.  Thank you for being a blessing to us at this point in time.

For those of you out there who are wanting to support us in prayer here are the following needs we have:
1.   The final amount will come in, including money for our hotel stay.
2.  The therapists with the experience Alex needs for his unique needs would be assigned to working with him and that they would be able to easily identify where his deficits are and know what reflex(es) are needed to repattern those deficits.
3.  Alex would be able to physically and emotionally tolerate the extensive period of work each day-he will need to be able to work with therapists for 6 hours each day-that is no easy task for a 12 year old who'd rather be doing other things than laying on a massage table.
4.  The reflex repatterning being done would permanently anchor in his nervous system and body.
5.  Both Alex and myself would make new social connections with others in attendance at the camp.
6.  Both Alex and myself would physically be ready for therapy camp. 
7.  For the remainder of our family (Logan at camp; Alan and Evan at home) for their safety and things would go well.

I have started to work through my grief with the help of a dear friend and one of Alex's private therapists.  However, I have had a recent increase in migraine headaches.  I am in need of support to address that problem because the only way I can feel better is to sleep.  That isn't easy for me since our family calendar is full of appointments for the boys and summer activities coming.  I wish I were able to have regular cranial sacral work on myself!  I have been able to do some cranial work on myself but as a practitioner you can only do so much on yourself.  I'm hoping to find someone I can trade CST with.  I have been starting to use CST on my boys and I find it very fulfilling.

Well off to bed for a while to get rid of this headache!!

Oh and I plan to update our blog more regularly when we're at therapy camp-hoping to get Alan's help to learn how I can incorporate photos and other things to keep everyone updated on his progress.  I know that we won't be allowed to take photos during therapy at the camp per signed agreement with MNR Institute.  However, I'll make sure to take photos of him during our 'down' time.

a little thing called "Mood"

Let me just start out by saying thank you to my dear friend (you know who you are) for calling me up and taking me out last night.  It was so nice to be able to get out of the house by myself just to do something 'fun'.  Alan and I continue to be so very thankful for friends and family who have not forgotten us in the busyness of life and have kept reaching out to us the past few weeks.

Anyone who has suffered through the loss of someone close can testify to the eventual darkness that begins to set in and surround you.  The initial shock wears off and while you have no choice but to try to return to 'normal'-things will not be as they were before your loss.  The reality of our loss is settling in pretty heavily with me this week.  There have been hardly any moments of happiness.  I mostly have had to face the overwhelming experience of deep despair and depression-a place I have never been before.  My conscious mind would rather not have to experience what I am at the moment but the conscious mind has no control.  Just this morning I am overwhelmed with tears and feel like I could cry for a completely unrelated reason.

Shortly after Braden's passing, we received a nice letter and book in the mail from a local couple (our age) who had unexpectedly lost their own nine month old in 2009.  Alan and I have separately picked it up to start reading it.  The name of the book is "A Grace Disguised" How the Soul Grows Through Loss by Jerry Sittser.  Jerry lost his mother, wife, and one of his daughters in a tragic car accident and in this book he helps the reader understand what it's like to experience loss in light of one's faith.  In reading his book I am able to identify many similar feelings and thoughts in my own journey.  I appreciate his depth and honesty about the human race.  

He made some points in the beginning of the book that really resonated with me. Ironically this week there was a similar post shared on the Proverbs 31 blog about loss and our human tendency to compare our losses with one another.  I appreciate his thoughts as he poses the question "Is it really useful to decide whose losses are worse?"  The context of the question is our habit of comparing our losses with one another and humanly determining on our own there are differing degrees of pain.  For example, some are severely disabled from accidents while others die.  Or someone goes through the pain of a divorce, or abuse in some form.  He goes on to say this:

"Catastrophic loss of whatever kind is always bad, only bad in different ways.  It is impossible to quantify and to compare.  The very attempt we often make in quantifying losses only exacerbates the loss by driving us to two unhealthy extremes.  On the one hand, those coming out on the losing end of the comparison are deprived of the validation they need to identify and experience the loss for the bad thing it is.  They sometimes feel like the little boy who scratched his finger but cried too hard to receive much sympathy.  Their loss is dismissed as unworthy of attention and recognition.  On the other hand, those coming out on the winning end convince themselves that no one has suffered as much as they have, that no one will ever understand them, and that no one can offer lasting help.  They are the ultimate victims.  So they indulge themselves with their pain and gain a strange kind of pleasure in their misery.  Whose loss is worse?  The question begs the point.  Each experience of loss is unique, each painful in its own way, each as bad as everyone else's but also different."

 I am not the kind of person that wants to sit at home in self pity nor am I the kind of person who desires any greater attention for my loss.  However, like most people having no choice to travel this journey I completely appreciate not having to travel my journey alone.  Alan has also recently made a comment to me about how it becomes incredibly significant to have others 'invest' in our journey with us.  What does it mean to be fully invested in someone's journey of loss?  It means to just be available and be fully present in our lives.  We understand the heart and know that words will never make us experience healing of any kind.  Healing is only something that God can do in us.  We don't want people in our lives keeping a 'safe' distance out of fear of not knowing what to say.  The reality is that we don't need anyone to say anything but just be in our lives walking beside us. 

Alan and I have both individually and as a married couple had to walk several roads of loss in our lives.  I know that the difficult situations I've had to go through have given me a greater depth as a person I would have never attained otherwise.  I think my challenge is always my attitude while in the middle of it all.  If you believe you are a follower of Christ, isn't our intent to allow God to make us more like Him?  I believe that's why he allows us to experience tragedy in life-to mold us and make us more like Jesus.  We will never know our Lord or share in His sufferings apart from having to go through some small share of that in our own lives.  Our suffering will never compare to what He did for us on the cross.  As a human though, having to endure is not always easy.  My faith is being challenged in many ways and I'm doing my best to take it one day at a time and I'm thankful for friends to help me in my journey.

The Answer is No

I am so appreciative of everyone's patience (if you are following my blog entries).  Last week was extremely difficult for me both emotionally and physically on top of the daily busy-ness that defines our family's schedule. 

After completing a four day class in Cranial Sacral Therapy in mid-May, my body went through a major detox for almost six days-I felt physically horrible and wasn't able to eat much.  Just as I was on the 'mend' I came down with a small head cold.  Thankfully the boys were never sick.

Last Monday was the first day that I was home alone for the first time since Braden's death knowing that family wouldn't be coming over and I wouldn't be 'busy' going places.  My heart has started the painful emotional process of the grieving.  Braden brought so much 'life' to my heart while he was here at home with me.  The house felt so empty with everyone gone to school and work.  Until now I have been too busy and not really felt emotionally ready to go through Braden's books and toys.  I'm sure part of leaving his belongings around is my subconscious way of self comforting having small small pieces left here of him.  It's been difficult not to feel many feelings of regret as his mother.  I regret being so busy caring for my other kids or attending to more 'administrative' details for him and Alex that I neglected to spend real, quality time with Braden.  Sure he had a personal care attendant helping me out with him but it pains my heart beyond words to know that she was able to share many daily life moments with him that I did not.  I am completely secure in knowing that he loved me with all his heart.  I am comforted in knowing that his first complete sentence was "Mommy I love you!". 

I was also made aware last week through the loving support of friends that not only do I need to work through post traumatic stress but that I'm holding anger subconsciously.  I can honestly say that while I don't have feelings of anger, my mind has a lot of angry thoughts.  I am struggling to make mental peace with knowing that his shunt failure was supernaturally rare.  Braden did not have classical shunt failure signs and symptoms that were obvious to us.  Additionally, his surgeon said a shunt failure leading to death within hours is extremely rare and if that's not enough-I found out two weeks ago in talking to his pediatrician that the company who manufactures his shunt has had absolutely NO reports of ANY problems or failures including fatalities.  Braden is their first fatality on that particular shunt.  It brought both Alan and I to a place last week where the utter lack of control in life was so obvious. 

We are not angry at God but feel disappointment and discouragement with God.  Especially knowing that many people were praying for him, including us and our miracle never came.  Upon further reflection last week it occurred to me that God also said 'No' to prayers lifted up prior to Braden's birth when we had to deal with the difficult discovery of his hydrocephalus.  I think it's been fair to say for both Alan and me that God has not made himself known to us personally as "Healer". 

I think Braden's untimely death just seems to underscore how much we don't have control in our own lives.  You see Braden was not a planned child for us and it meant big adjustment in our lives which we welcomed.  But then we had the news that he was not going to be a 'healthy' child.  Then toward the end of my pregnancy we set a date for his birth only to experience that yet again the timing was not up to us.  Braden did not arrive on this Earth according to man's planning and scheduling.  Despite the special care and love he received and the amazing progress he was having he died.  Yet again a real smack of the reality in life that we are not in control. 

I have also been touched by the few people who have graciously given financial gifts to support Alex going to therapy camp in July.  Our deadline to have the money in is JUNE 20.  Some have passed word to me that they plan to give and I am so appreciative.  So far I am aware that out of our need for $8000 we have $250 already sent in for donations.  We have a ways to go but I know that God has a plan for Alex to go to camp.  I am hoping to give God another chance in showing me that healing is possible in our family if not for Braden for his brother Alex.  Alexander's brain was affected by a lack of oxygen at birth that has contributed to dysfunctional and pathological reflex patterns.  His biggest issue right now is like a giant mountain hindering a life with incredible potential.  He is incredibly smart and bright.  I know for myself I need to hear God saying "Yes" right now with all that I'm going through.

Thank you for investing in our journey friends.

Love Lisa

So the Need Continues........

As everyone continues to ask the question "So how are the boys doing?" (since Braden's death), my response is that they do need help.  Our immediate focus has been on obtaining more intensive help for Alex given his Aspergers diagnosis and an increased intensity in his emotional responses since our trauma occurred in March.

We have the opportunity to get him the intensive intervention he needs through the Svetlana Masgutova Educational Institute this July here in Minnesota.  However, in order for us to get him the help he desperately needs we need financial support of many family and friends to get him to the Family Conference.  Unfortunately the cost of the camp is not covered by medical insurance.  But the blessing in our family's trauma has been that in sharing Alex's life story of constant struggle and challenge with the Bridge to Healing Foundation in Florida, they have graciously offered to MATCH ALL DONATIONS DOLLAR FOR DOLLAR up to $3,500!  Bridge to Healing Foundation is a 501c3 organization and will give all donors a tax deductible receipt for contributions made on Alex's behalf. 

This is somewhat bittersweet for me as both Braden and Alex's mom.  You see, when Alex was in second grade he was going through a horrific year at school and medication trials or traditional OT therapies commonly used with autistic kids were not working and we were at the end of our 'rope'.  I cried out to God for help on Alex's behalf and shortly thereafter we began a new direction in treatment with a wonderful Christian woman who had been training under Dr. Masgutova.  We began to see immediate improvements with Alex.  However, because Alex's underlying neurological issues are intensive, the work we have done a few times a month has not been intensive enough for him to make the kind of forward progress one should expect.  It was my dream at the outset of our introduction to the MNRI work to someday have Alex meet Svetlana face to face and that dream came true for us this past February.

Dr. Masgutova came to a clinic here in Bloomington, Minnesota and spent thirty minutes doing a private assessment on Alex.  Not knowing anything of his birth or life history she basically told me his life's story through her work.  I felt my jaw could have hit the floor!  For example, she knew that he had been in a long labor and suffered oxygen loss at birth (yes-I was there).  She also could tell how much that along with other things have really made life an incredibly difficult challenge for him and told us he needs to come to Family Conference this summer.  Dr. Masgutova also did an assessment on Braden.  She gave me so much hope for him-telling me based on his responses how bright and intelligent he was despite his hydrocephalus and other brain issues.

You see already knowing about how much the MNRI has started to help Alex I immediately pursued it with Braden right after he was born and I attribute the incredible gains he made (against what doctors predicted) to the MNRI work we did with Braden.  I just want to give Alex that same chance that Braden had with this work.

It is our sincere hope that as everyone has a desire to know how we are and to offer practical ways to support us that you would consider making a donation for Alex.  I will be honest without giving much detail but we are at a tipping point with Alex and as a mom I'm not about to lose another child because finances have kept me from getting him what he needs.  Donations in any amount ($15, $25, $50) would be so appreciated.  Checks can be mailed to:

Bridge to Healing Foundation, Inc

18037 SE Heritage Drive

Tequesta, Fl  33469

*Designate for Alex Redding MNRI*

Or online donations can be made through Pay Pal:

1. Sign on to your own personal PayPal account
2. Click the Send Money button
3. Click the Personal tab and select the Gift option
4. Enter BTHGroup@yahoo.com as the email address to receive the money
5. Enter Amount
6. click Continue button
7. In the Email to recipient Subject line: Enter Donation
8. In the Email to recipient Message:  Enter Alex Redding as the person you are making the donation for and enter your (the donor's) name and address.
9. click Send Money button

Since the Family Conference starts in July, we are under a big time crunch to raise the money by June 20th.  Please contact us directly by phone or email if you have any questions.  We would greatly welcome them at this time.


redding@usfamily.net


Lisa