Happy Birthday little B

Today is what would have been Braden's 5th birthday.  The past few days have had me mulling over memories of the days and hours before Braden was born.  His arrival into this world was not according to our timing or that of the maternal fetal medicine doctors either.  But, it was one of great joy and expectancy.

I will never forget the devastation I felt driving home from my routine four month ultrasound with all the 'worst case scenario' propositions planted in my head by the geneticist and fetal medicine doctor-he would be severely retarded; he would have physical disabilities; etc. I was absolutely apalled that they would suggest we could 'terminate the pregnancy'.  After all don't doctors take an oath to 'do no harm'??  You see they were talking to the wrong woman.  My faith in God far surpasses any human (doctor or not), any circumstance and situation.  My job is to be faithful with what I was being entrusted.  And later in my pregnancy, God showed me that He was calling me to be Braden's mom.  Having a child with special needs is a calling-not something for everyone. 

After the initial shock, God faithfully provided for our needs.  I was able to benefit from CranioSacral therapy with Alex's therapist and it was a HUGE turning point for me emotionally.  I don't think I'll ever forget the amount of pure joy that flooded my heart following the loving, hands on treatment at the beginning of my last trimester.  God's grace is amazing.  My heart was turned around and flipped inside out.  My perspective was brand new and I had the courage, peace and trust that everything would work out fine.  My feelings were confirmed at one of my last doctor visits with the doctor who would eventually be the doctor on call the evening Braden was ready to be born.  Together with this doctor we discussed plans for monitoring his head growth weekly and planning for a mid-July C-section.  We had set a date.

But then at the end of eight months gestation, Logan had contracted Fifths Disease with fever and redness all over.  I had been exposed to him and called the clinic, making an appointment.  I didn't feel 'right' but didn't have a fever or redness.  I went in for a check up and lab work and my suspicions were confirmed-Yep, I too had Fifths Disease.  It is fatal to the baby if you contract it during the first or early second trimesters of pregnancy.  I was told there was nothing I needed to do other than take it easy and baby would be fine.  That was the last week of June before the July 4th holiday week.

We celebrated Alan's birthday on July 1st and I was intent on getting my suitcase ready for the hospital-after all I had 3 more weeks right?  I had just about everything except a summer robe for the hospital.  To celebrate Independence Day, we took the boys to the annual July 3rd Bloomington fireworks and had a great time.  The next morning we decided to take them out to breakfast at Perkins.  In the entrance there was one of those coin operated 'claw' machines that teases all kids to play and take home a stuffed animal.  When we were done eating, I followed the boys back out to that machine while Alan paid our bill.  A nice elderly man came up and asked the boys if they'd like something from inside.  Well of course they did!  He was successful on the first two of three attempts and they left with two stuffed animals-a bright yellow spotted leopard and a black and white panda bear holding a red heart.  They made sure to put them both inside Braden's crib (already assembled) when we arrived back home.  I made another trip to the mall later in the afternoon and failed at my mission to find a robe.  I would have to continue my search the next day.

On the morning of July 5th, Alan decided to finally tackle a painting project on our small deck that he'd not been able to get to for some time.  After a brunch with the kids I felt really tired and decided to watch a movie with the kids while laying on the couch.  I had been up at least once to go to the bathroom and returned to my time relaxing with the boys.  Later in the afternoon I repositioned myself and felt like I needed to go back to the bathroom.  Upon turning in that split second I KNEW I did NOT need to go to the bathroom and leaped off the couch faster than any late term pregnant woman could go.  I sped to the bathroom and just as I got there my water broke.  I yelled at the kids to get dad ASAP!  I had to yell to him with paintbrush in hands and in the middle of painting the deck railing that we needed to get to the hospital ASAP.  He was totally caught off guard and I had him call my brother-who incidentally had plans to go have dinner at a friends house up in Maple Grove.  We caught him just in time as they were preparing to leave.  They graciously changed plans to come over and stay with the boys while Alan took me to the hospital.  While waiting for Alan to clean up, I reminded him to call the hospital and give the heads up call so they'd be ready for us.  We were already set for the NICU team and had established a birth plan in the previous weeks. 

We arrived at the hospital and I was immediately hooked up to monitors and was told that the doctor on call was the same doctor who gave me the good prognosis almost a month before.  I was ecstatic that he would be the delivering doctor.  In the operating room there was a whole team of medical professionals waiting for Braden.  He was delivered around 8:28pm and at first had a weak cry but then finally did cry.  He had great APGAR scores after a minute and did not need to be hooked up to any machines.  I remember being so thankful that he was able to avoid all that.  He was doing great and because the NICU was so full of preemies, he had his own little room adjacent to the larger NICU room where all the babies were held in one big space.

I just knew in my heart that Braden would far surpass any and all of the possibilities laid on us in that initial ultrasound.  In his short little life, he continued to do more of the same-he conquered so much and exceeded expectations for his growth and development.  Again, my thoughts on his intelligence and capabilities were confirmed by Dr. Svetlana Masgutova at a short MNRI evaluation only weeks before his shunt failed.  She told me he was an incredibly bright boy based on her full assessment and I left feeling so encouraged at the possibilities for his future.  It just makes me want to encourage other moms who have the unfortunate predicament of dealing with challenges.  It's so worth it to take the high road (not the easy road) come what may and in the end you will be blessed beyond your wildest dreams.  So much recovery and healing is available on this side of heaven-explore it to your fullest abilities.  I have no regrets that I have done that and continue to do that for Alexander.

Our hearts have grown a million times bigger because of all the joy and happiness he brought to our lives on a daily basis.  He is now finally whole and complete, having an awesome time in heaven.  We look forward to that reunion we will have with him one day and trust God for redemption of a childhood that was cut way too short.

Much love-

It's been a long time since I've had time to sit down and collect my thoughts to write online.  It has been a challenging couple of years with the last two being the toughest.  Everyone around you moves on in life and you are just left there alone in your grieving process still trying to do your best to parent the remaining children you have left (and they have no shortage of needs either).   There is no practical support for our marriage-which has struggled and over 80% of couples with special needs kids end up in divorce; for our personal respite from parenting a teen with special needs or for the siblings who DESPERATELY need a break from their special needs teenage brother.  We are all so focused on our own families and busy ourselves with many things that Oswald Chambers would say are the 'urgent' things in life-we miss the most important things in life.  As a family with a special needs child, we are limited and life is experienced in a different way.  There have been a number of times as a special needs parent that I would find myself wishing we could serve others or participate in activities or events that other families do-but that's not our reality.  I'd love to invite my friends and their families or my neighbors over but have hesitation in doing so.  We have appreciated the few times that others have invited us over and have shown hospitality to us-it's something we'd love to reciprocate but have difficulty doing so.

I have done my personal best to 'bloom' where I've been 'planted', accepting the circumstances and situation in life that we continually strive to move through.  If you would have asked me even three years ago about finding God's blessing in my life, I would have struggled to come up with answers.  I have been processing at a deeper level the fact that we all mentally know that God's ways are higher than ours-but I'm beginning to understand that fully.  We have a tendency to believe that 'blessing' implies positive, good, fruitful things in our lives.  We are so wrong about that.  The hardest things in life are equally if not more of a blessing than the good.  We should be able to be thankful in ALL circumstances.  Typically, feelings want to dictate anything but thankfulness. We fail to realize that those dark, ugly things in life can bring us the closest to God and open new opportunities to grow closer to Him and allow Him to work more deeply in and through us.  He is counting EVERY tear we shed and someday there will be a reward.

Everyday I wake up and am grateful for God's grace and provision of dear friends (also private therapists) who have facilitated healing in my life and the kids through their hands, the Holy Spirit and the various techniques God has imparted to them to help us in our healing journey and to grow.  Taking it a step further, God has also been equipping me for personal growth and also to support what he is doing in the life of my family, typically coming from hands on work on my massage table.  It's not surprising though that because of all the great 'work' God is doing in and through me and the kids that we are spiritually attacked on every side.  I am continually having to face people and situations who have no regard for me, my feelings or those of my kids and yet I feel this inexpressible expectation that it's incumbent upon me to be the 'better person'.  I can't begin to describe the anger and rage I feel when others who have not walked a day in my 'shoes' and have had to experience the full range of experiences and emotions, want to tell me that I'm the one in the situation who needs to respond better.  I'm guessing that's because there is a false belief that Satan wants to impart to everyone that if you are a 'Christian' you 'should' be perfect and have a stereotyped, scripted response.  The truth is that we are still human, have our own feelings, and are simply forgiven-not perfect.  Standing on positional truths about my identity in Christ has been liberating during these times.

I choose as an act of my will to forgive others who hurt me and choose not to let the things of the past continue to drag me down.  So many of us hold onto bitterness, anger, resentment, etc. that came as a result of someone else and fail to realize that if we never work through that and let it ALL go, we will continue to struggle.  I've also learned the past few years that our physical bodies are absolutely amazing.  If we have unresolved issues from our past they will manifest in physical symptoms and disease-another excellent reason to seek out full and complete healing.  I may not have an M.D., or a P.T, M.eD, or a D.O.C. licensure after my name but after spending half a day with me you will see that I have all that and more.  I have been on the road less traveled all these years.  If there's been one thing that's been clear to me lately is that no matter what it has been in my life that has a 'formula' (home business, raising a family, pursuing my dreams), the path I have to take is not the same path as everyone else.  When I graduated high school I wanted to be a doctor.  Little did I know that the way I'd get to that goal would not be the 'typical' path most follow to obtaining that title.  Even if I never get a license or an actual 'title', I know that I have the gifts and talents to achieve the same thing based on my own study and treatment within my family.  Someday I will be facilitating treatment and healing for others who need it.

As we approach what would have been Braden's 5th birthday next week, I would ask that you would keep Alan, me, Alex, Logan and Evan in your prayers.  We just became an aunt, uncle and cousins to twins last week and there is an opportunity for more healing but that is not dependent upon us.  How do you journey through grief when there is something new happening in your extended family and you aren't sure that you are a welcome part of that?  As we do every year since his passing, our family celebrates Braden's birthday and the short time we had with him on this earth.  We have dedicated the first week of July to his memory and it is a very sacred time of year for the Reddings.  I hope if you feel compelled to share a word of encouragement that you refrain from trite words with good intention i.e. 'he's in a better place', etc.  We are grateful for support and prayers in any form.

So Appreciative

I have found it incredibly challenging to stay committed to regular postings on our blog.  I'm sure everyone understands how busy life gets with multiple kids in the house!  Since Christmas, Logan has been involved in a church basketball league.  Alan and Logan are gone three nights of the week (two for basketball games and practice and one night for boys' Stockade program-like Cub Scouts).  Evan joins the two of them Wednesday nights for Stockade.  We've also continued to have regular after school therapy appointments and had to attend a meeting for Logan's transition to junior high school next fall. And when I'm not busy with appointments, I'm doing home therapy with at least one of the kids.

I have not returned to working for my sister in law's chiropractic clinic. I've been home while the kids are in school since late last November. I made some decisions in December to focus on myself and my own personal growth.  I joined an inexpensive fitness club mid-January to get regular exercise and help reduce stress.  On average I go three times a week for over an hour each time.  In addition to exercise, I also joined a Tuesday morning Bible Study at my church.  I am completely enjoying it and getting so much from it, especially since the study guide has five days work of 'homework' to complete between each large group session. 

I also continue to self educate on my new passion-the brain and it's awesome capacity to continue to develop and strengthen (neuroplasticity).   I have learned so much from all the classes I've taken on behalf of Alex's home based therapy programs and continue to receive ongoing mentoring from his amazing therapists.  My confidence in using these modalities for health and healing continues to increase daily.  I'm so excited about the changes I am witnessing in myself and my kids.  I hope that someday soon I am in a position to use this knowledge and skill set in helping others achieve health and wholeness.  I consider myself incredibly blessed to have the right people in my life to coach and mentor me along this path.  Their input in my life personally and professionally has been a gift for which no words can come close to explaining my gratitude.

On a more discouraging note, we are getting closer to the one year anniversary of Braden's 'home going' as our pastor puts it.  It definitely has been harder emotionally for us and more so as each day grows closer to the one year mark.  While we cognitively acknowledge that Braden is in a better place, the pain of losing him still deeply stings our souls.  It hurts deeply.  And to say that it hurts deeply still doesn't come close to describing the depth of that pain.  Along with our pain (Alan and Lisa), Alex has been having uncontrollable panic attacks.  They started a month ago-at least on a regular basis.  He is afraid he is going to stop breathing and die.  I feel incredibly helpless as a parent in helping him through these moments, especially when he's crying and sobbing through it too.  They occur at bedtime mostly and originally triggered because Braden stopped breathing in his sleep.  Alex has anxiety that it will happen to him.

But thank the Lord that Alex has a couple amazing Christian therapists who've been able to talk with him and work on him about his anxiety.  He was able to take one big step forward this week with one of them.  However, the panic attack morphed into a new kind of panic attack the next day.  His brain is working overtime in certain anatomical regions, putting him on high alert.  I continue to trust that his therapists will be able to help him work through it and utilize the tools that God has entrusted to them to facilitate change in him.  It's another opportunity for me to grow in knowledge in helping others recover from trauma.

Some of you also heard about the disappointment we experienced about Alan's job review last week, despite a phenomenal job he did at work last year, including playing a key role in a new software platform the corporation is rolling out nationwide.  Can you imagine the disappointment to hear from your manager that you were 'a slam dunk' to receive a 4 (out of 5) prior to your son's death last year, that managers couldn't believe how well you were able to do your job despite the tragedy in your personal life, but in kindness didn't feel like you could be entrusted with more responsibility and then not get a merit increase?  And by the way, this is the second year in a row since starting this job that he hasn't had a merit increase.  Finally, to top that off, the company is rolling in $12 billion dollars in profit this year-I know because my brother works for the same company, different division, and many people received significant increases in salary.  So yes-hardship continues in our family on all fronts.

I'm doing my best to stay grounded and continue to run the race that's set before me, despite my circumstances.  I am incredibly thankful for those who have sent a note in the mail, emailed me, etc. recently to let me know they are aware that the one year anniversary is approaching and that we are in your thoughts and prayers.  We continue to need all the support and love that others are able to give to us at this time.  If anyone feels led to spend time in person with me the week of March 11th, please contact me. I don't expect anyone to know what to say-I just need to have the physical support of friendship, of walking beside me. I know that I have 'homework' from God in that He's asked me to spend some time working on a timeline of my life.  I also need strength to begin work on writing Braden's story.  You see I have a story to tell-a beautiful journey from death to life that I was able to play a amazing role in.  I'm hoping I have the courage and the words to write that story and to do it well.

All my love dear friends,
Lisa

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.