Because I Love Him...

(If you are receiving this via email update, click on the title and go directly to my webpage to view the videos at the end of this post, they do not transfer via email)

I'm often asked why I chose to homeschool Sam.  I can always respond accurately that it is because of his medical needs, low immune system and inability to fight infection with typical medications.  Most people are very comfortable with that response.  I can refer to both his home program and his critical care pulmonologist that requested that I homeschool Sam. I have people to back up that claim.

But the reasons that I homeschool Sam go much further than that.  I have friends that are teachers, aides and even some in administration.  I took time to train and become a parent liaison in our school district.  I respect the role of teachers, therapists, school psychologist and those in the special education area.  As in any organization there are great, dedicated people and then there are those that are not as passionate about their vocation.  The good comes with the bad. My personal experience in the school system was pretty good, nothing major went wrong but being a logical person and looking at class size, available resources and Sam's level of need I wondered if we could do more at home.

Jeff and I decided on the day that Sam was born that we would love him, enjoy him and work with him to the best of our abilities.  Funny thing...if you would have brought up homeschooling at that time...I would have said "NO WAY". As time went on and Sam had more and more health issues including a brain injury from oxygen deprivation, I realized that our abilities were going to be tested more than I could have imagined.  While in the ICU with Sam I was told he would probably not walk due to right side weakness, his speech would be limited or he may not talk at all and his cognitive abilities would be substantially reduced. All I could think about...was where did that doctor get his crystal ball??  This was an infant, a child that had not even been worked with...to me a child who's potential was unknown.  Because God knows me best he knew that was what I needed to hear because that was the push I needed to prove them wrong.  I'm stubborn and I often question that which I don't understand and don't even get me started on how I have questioned and tested the medical community in every aspect of Sam's journey.  That same questioning has rocked my faith but over the years as more challenges have presented themselves and I have gotten through I have learned trust, trust in that which I have no control over.  I am not strong enough to make it through the challenges in this life on my own, it is only by the grace of God that I continue on.  Trusting God has become easy but trusting anything on this earth is still a challenge for me.

Due to Sam's issues beyond Down syndrome we sought out help and expertise on how to work with Sam and help him reach his full potential.  NACD (www.nacd.org) has been a driving force and friend in our journey.  I started working with Sam and NACD when he was 18 months old.  Although Sam had been in the state's "Birth to Three" program since he was 6 weeks old...I just didn't feel it was enough.  Everything I researched and read about encouraged me about the brain's plasticity and ability to make new connections but the direct input and the amount was something I felt we needed to improve on. Studies showed that children receiving early intervention were doing better than those that had not but in my mind the percentage was still too low and Sam had more than just a few issues going on.  Sam's therapists were excellent but they only saw him once or twice a week for a short period of time.  Working with NACD allowed me to work with Sam every day and give the input he needed to re-learn how to use the right side of his body, to crawl, to walk, to run, to learn to read, to improve his processing, to work on his vision issues, to strengthen the areas that were weak...to help him grow and develop.

As I worked with Sam and saw things change I began to understand and feel the joy that comes with helping another person develop on a level that I had never experienced before.  I had taken for granted my other children's development and I realized that it isn't until a child can't do something, something fundamental to their development that you can either feel powerless or dig your heels in and work on it.  Sam and I bonded on a whole different level.  It wasn't just about doing program or working the muscles it was about building trust and forming a working, loving relationship. To see Sam crawl, walk and then run (things he was never expected to do) and know the hours of deep pressure, input into his muscles, work on his gait and balance that made that possible is an accomplishment like none other. To watch Sam read and know that I taught him how to read makes my heart smile. To see Sam accomplish a set of instructions and chores and know the steps that we had to go through to get there humbles me. To hear Sam speak, to hear him communicate and know the hours of practice we have put in, the hours of oral motor and endless attempts at conversation we have gone through is...priceless.

I remember when Sam was born, he was on oxygen for the first day or so and I wasn't able to hold him. As I sat in my hospital bed...I wondered...after learning his diagnosis of Down syndrome...would he look at me or would he look right past me? Would I see something in those eyes, a light, an indication of something or would he have a blank stare.  I knew nothing about Down syndrome and that lack of knowledge scared me.  But what I do remember is the moment they brought Sam to me and placed him in my arms. I turned him upright so we could look face to face and as I held him he looked directly into my eyes, directly into my soul. I could see that there was so much inside this little man, so much he wanted to share and tell me and I decided at that moment that he and I could do this. We were going to be okay...no matter what.

I'm glad I didn't have that crystal ball...the future would have overwhelmed me. As Sam and I worked together we learned how to work together, what works and what doesn't. I sometimes think as people read my blog they think that Sam is easy to work with, compliant and a child that looks forward to his program.  Well, you would be very, very wrong (I'm sure Ellen Doman will vouch for me on this).  Sam has fought through much of  his learning but has learned despite it. Often times children with Down syndrome are thought to be gentle, loving, happy but I'm sure most parents of children with Down syndrome and teachers and therapists that work with them will tell you they have a gold medal in being stubborn.  Sam was doubly blessed with a gold medal in being stubborn along with two parents that gave him stubborn as a genetic trait.  Sam has hid program elements, fed them to the dog, ripped them, thrown them away and scattered them on the floor too many times to mention.  Sam has yelled, cried, screamed, spit and thrown books to discourage reading.  Have we had behavioral items on program, yep...too often to mention.

Now don't get me wrong, Sam has the other traits of gentle, happy and loving...when he is doing something he wants to be doing.  Very much like his older brother Ben...Sam is not fond of school.  Ben and Sam liked the social aspect of school, seeing friends, being part of a group but that is pretty much the extent of it...oh yeah...lunch and riding the bus was fun too.  As for academics these two can make any teacher's day a nightmare.  Over the years I have figured out that each of them have very specific learning styles.  With some modification I could adapt Ben's to life in the public school, not without it's challenges, but it was doable.  Sam, so far has been a whole different challenge.

So much of Sam's learning is built on trust. He will try something or work on something because he loves me and he trusts me.  Sam loves to see me get excited when he learns something, acting excited and actually being excited are two very different things for Sam.  He can read acting and he may tolerate it for a while but he really wants to see true excitement.  It is a lot to ask of any teacher everyday.  Which leads me to another reason I homeschool. I have spent years trying to figure out the best ways to work with Sam and if I am honest...I'm still trying.  Some things I have figured out and can now run with, others are still a work in progress but all require a level of patience that even I find hard to maintain.  Sam is one child and I am working with him one on one and we struggle. I often read about and know children with special needs that are doing very well in school.  Many of them appear to have fairly good speech and have learned to adapt to the classroom setting.  In my day to day work with Sam I think he would either choose to withdraw, stim and learn nothing or fight and quickly wear down anyone who is working with him so that his behavior would become the main focus and learning would still not be occurring.  I also know that if Sam were to come across someone who didn't care, wasn't passionate about teaching, chose to see his behavior as the only problem it would be detrimental to his continuing to learn.  I have had my moments with Sam when I have wanted to give up, to give in to let someone else fail at this and be able to say "It's not my fault".  But that's where I come back to my commitment to Sam, maybe the reason God chose me to be Sam's mom. I pray...and we go on.

Sam's physical issues are another reason I homeschool.  Sam has limited mobility and he does need to recline at times to take pressure off his hip, not the best set up for a typical public school classroom.  Sam and I have figured out how to work together at a desk, in a recliner, laying down, inside, outside and in a body brace.  We got this.

But if you want my real answer as to why I homeschool Sam....it is because I love him.  Sometimes when a person is challenged or difficult or stubborn it just takes LOVE to get past all of it. I work hard with Sam because I love him, I believe in his abilities because I love him, I get past his behaviors because I love him, we figure out how to work together because no matter how many mistakes I make...he still loves me too.  Sometimes like the song says...all you need is love.

Here are some videos from our recent attempts at ramping up Sam's home program.  They are not the best of the best, I have always promised to be real on this blog, to show the good, the bad and the ugly...but no matter what...I LOVE THIS LITTLE BOY AND THANKFULLY HE LOVES ME TOO!

Putting Things Into Perspective!!

I'm not sure if this is going to be a popular post, but then again I have always promised to be honest and to share the good, bad and ugly with those who choose to read about my journey with Sam.  And those last four words are what is really important "my journey with Sam".  I write about my experience, my child, and my ever changing perceptions of raising a child with multiple special needs.

When Sam was first born and we received the diagnosis of Down syndrome I did my research and read the books which sort of depressed me and then I moved on to blogs or at that time emails, stories and sites that talked about all that a child with Down syndrome was capable of...this diagnosis was not the end of the world.  I became empowered and when I found NACD I found a mentor Jenny Marrs and her wonderful and amazing son John.  Now keep in mind that before I had found NACD Sam had suffered a brain injury from oxygen deprivation but reading about children with Down syndrome and brain injury that excelled with neurodevelopmental programs spurred me on.  I wanted that super child, I wanted that child that was going to beat the odds and everyone was going to be talking about.  I hated when someone would talk about Down syndrome and high functioning or low functioning...none of that mattered...what mattered was how you worked with them...right???  And to be honest...at that point in our journey...I needed that hope, that challenge, that push to get involved, to jump in, to really get to know Sam. I loved the interaction with my evaluator, honestly I valued their opinion over most of the other professionals we worked with because they were looking at Sam from head to toe, they were looking at our available resources and manpower and they were devising a plan for continued improvement with what we had to work with.

When our Wisconsin chapter first started I often helped with the evaluation process and I saw children come in with Down syndrome that were younger than Sam but they were talking, walking and meeting milestones so much sooner than Sam.  I was amazed by these children and loved to see them excel...but I was also envious of strides that seem to come to them so easily, language that flowed with little to no effort, fine motor and gross motor skills that I would die for.  The parents would talk to me about their concerns and worries and often I would think but are you seeing what they are doing, are you not amazed by the milestones met?  Hmmm...but wasn't I also guilty of this very same thing?  Focusing on what Sam couldn't do instead of what he could do and how far he has come?

It was around this time I had a meeting with our pastor and as we talked he shared with me that often times when he finishes a service he has mixed reactions from congregation members.  Some are happy and then some are thinking he is talking about them and they don't appreciate his reference or opinion on their situation even though he never had them in mind when he created the sermon.  It was one of those "light bulb moments" when things in your life start to swirl around and make sense.  I'm pretty sure that is when God steps in and starts to work on your life.  I had two perceptions that seemed to run around in my mind and I'll be honest I'm not proud of either one of them.  One was that all those super kids were just really super high functioning and life was easier for them, I could compare this to the difference a parent experiences when they have a typical child or a child with special needs.  Some kids are easy and some require a ton of work.  I was just beginning to touch on the real issue.

On the other side I often read on the listserve and even have expressed myself that some parents just don't work or put in enough time with their children and therefore they are low functioning.  They aren't trying diets or supplements or neurodevelopmental programs...they are expecting the therapists and schools to get their child where they need to be. Hmmm....was I walking in their shoes, did I know what challenges they faced in their lives???  I am also guilty of wanting the quick fix, the supplement or combination that will make life with Sam easier and allow him to excel beyond my dreams. I would read on the listserve how this supplement or that protocol is doing wonders for a child...and then I would try it with Sam....and his system would react negatively...and I again would feel like a failure.  Why is that child excelling and mine is not? I would become inwardly cynical wondering how a doctor, professional or parent is benefiting from pushing a protocol.  Like I said I'm not proud of my thoughts or reactions.

Now before you think I am trashing supplements, protocols, schools or neurodevelopmental programs I want to stop you and reassure you that is not my intention.  I admire those who are breaking down the barriers, doing the research, striving to make a positive change in the lives of people with Down syndrome. Without warrior parents we would not have our children at home,  in school or receiving proper medical care.  So where am I going with this??

I don't think I'm alone in the struggle of keeping a proper perspective on my journey with Sam.  Over the years I have changed my perspective of the super kids.  I delight in hearing the stories of those that have achieved and excelled but I think we all need to look at each and every one of our own children, look at where they started and how far they have come and realize that they are super kids in their own rite. Sam has faced more challenges than most, Down syndrome, brain injury, apraxia, aphasia, respiratory/immune system issues, bi-lateral hearing loss, hip dysplasia and Perthes and yet I can truly say he amazes me.  Are we reaching all the milestones that I thought we would when he was a baby?  I'm going to answer...not yet. I think we all have to continue to try, to hope, to move forward and even if your child isn't where you always thought they would get to, acknowledge where they are at, celebrate what they have accomplished and enjoy them for whom they have become.

As for low functioning, high functioning...as a parent of an older child (almost 13) I believe we are all unique and our challenges are our own.  Sam is a super kid in my mind but can he do what the super kids we all hear about are able to do...not yet.  But from my own experience and what we have done with Sam I know that you can work super hard with a child, give them a wealth of experiences, supplement, obtain the best medical care possible and yet they will not meet up to someone's expectations. The important thing is that when you put your head on your pillow each night you know you did what was best for your child and your family. Also keep in mind that when something someone has said bothers you, is it because you have the same doubt, or is it because you needed that extra push or is it God's way of saying work harder and set your expectations higher?  There are lessons to be learned in both good times and bad.

Another part of this balancing act with Sam is embracing difference.  It is something both Ben and Sam taught me.  That just because someone looks different, learns different, talks different...it is not wrong, it is just different.  There is a balancing act we do as parents of typical and children with special needs to help them reach their full potential. Over the years I have learned to concentrate on the strengths, work tenderly on the weaknesses but always let my children know they are amazing. Self esteem is the hardest thing to regain when it has been lost.

Lastly...give yourself a break.  None of us is perfect, we all have our quirks, imperfections and challenges...just like our kiddos.  Take care of yourself, love those perfectly imperfect children, see them through a fresh set of eyes and work on maintaining the balance of what we want with what we have.

Have a great weekend!!

Putting Things Into Perspective!!

Be prepared...this is going to be a post that will weave in and out of my thoughts, dreams and fears as I try to put things into perspective.  I have always been an optimistic person...or have I????  I have always held strong to my dreams and aspirations for Sam...or have I???  I have always placed my trust in God...or do I???

Here's the thing...on any given day I have good intentions.  I know what I should be doing and having been brought up as a Missouri Synod Lutheran I also know what God expects of me. Being the mom of a child with special needs I often hear "God only gives special children to special parents", "God never gives you more than you can handle", "God knew what he was doing when he gave you Sam"...to all of that I say "Poppycock".

God gives special children to average parents and then with His help and by His grace we try to raise them. And if I am being honest I succeed and fail just like any other parent...the difference is I have more chances and challenges each day with Sam to see just what I am going to choose to do...succeed or fail.  As parents we all have times when our children push our buttons or challenge us...the difference is Sam pushes harder, challenges me more and the real test is how I react.

Danielle might ask me a question and she will wait patiently for an answer...Ben would ask me a question louder and with more intensity and demand an answer...Sam would ask me a question, not wait for an answer, ask again and again and again with absolutely no understanding of non verbal cues, being patient, or actively listening for the answer.  Each of my children are so very different and each requires a different level of patience, compassion and understanding on my part.

Today was a failure!  I wanted to work with Sam but Sam did not want to work with me. Instead of being patient and positive I found myself getting frustrated, somewhat angry and choosing to give up.  We started our day with some stretches and Sam yelled "NO" during most of this time. Then I brought out the walker that he promptly pushed over several times before getting up to walk across the room to his recliner all the time yelling at me.  I brought out his reading which he struggled through requiring more intervention from me than is normally needed.  His math facts he decided to hit the wrong answers to hear the sound it makes further depleting my "we can do this" attitude. No matter what I tried it was met with resistance. I raised my voice at one point which just made Sam even less attentive and when he kept turning off his Ipad educational app I finally just walked away. I gave up.

Many of you might be saying "He had a bad day"..."He's going through a lot, give him a break"..."It is Easter break, what's the big deal".  Well, here's the thing...that is often how every day starts with Sam...the difference was my reaction.  Sam is stubborn...Sam is difficult...Sam likes to have his way and through these actions (as difficult as they may be) Sam is desperately trying to teach me patience, resilience, perseverance, grace, humility, compassion and challenging me to think outside the box, to try new ways, to press on, to press through...to succeed...and today I chose to give up, to fail.  Failing is easier, he gets Netflix, I read a book and he's happy...kinda.  I meanwhile wallow in my failure...my mind stretches to all the things he will never be able to do, how I've failed him, how someone else...really anyone else could do a better job with him.

Taking a day off is fine...but more importantly picking myself up by my bootstraps, praying for additional strength and resilience is really what I need to do.  When I was told Sam would never walk or talk because of his multiple diagnosis of Down syndrome and brain injury I could have gone with that, believed it, lived it and Sam would have probably never walked or talked but I chose not to believe, I set my expectations higher and Sam walked and talked, later than most but he got there.  Teaching reading to a child with Down syndrome can be challenging, now add brain injury, apraxia, dyslexia and aphasia...but even with all of that Sam can read. Our new challenge...Perthes Disease...has required 2 hip surgeries with another one coming in May and Perthes has taken most of Sam's mobility away.  As challenging as the external fixator has been for Sam's weak immune system and as much as I hate pin care the chance of saving Sam's hip and allowing him to walk again gave me the courage to get through.

Each of these challenges presented me with a choice to give up or to forge ahead. Each of these challenges and how I chose to forge ahead (NACD, homeschooling, out of state surgery) had it's supporters and it's critics.

Here's the thing...I'm Sam's mom and I take that role very seriously...some would say I'm a wee bit of a control freak.  Each of my children has presented me with parenting challenges and unfortunately none of them came with an owner's manual so I have allowed each of them to guide me on their journey along with a lot of prayer and request for guidance from God.  Ben has taken me on a rollercoaster ride of ADHD, Dyslexia and learning disabilities. He single handily changed my viewpoint on schools and education. Through Ben I learned the importance of letting a child pursue their interests, building on their abilities while working on their challenges. Ben began the development of my ability to be patient, persevere, to think outside the box, to understand how each of us is unique and to both cherish and challenge the differences.  Danielle built my reserve of compassion, my wit and humor. She gave me back my sanity. She made me laugh more, listen more and she will forever be "my little ray of sunshine". She is like a mirror image and reflects both my strengths and my weaknesses. And Sam...Sam is the child that demands a whole different level of parenting. With Sam I have had to become a teacher, PT, OT, Speech therapist, nurse, caretaker, friend, cheerleader, pulmonary therapist, social director, researcher, dietitian, catechism teacher and behavioral therapist.

Sam demands resilience!  When I raise my voice Sam shuts down.  When I show frustration Sam becomes equally frustrated.  When I am excited by something Sam has done he not only reflects my excitement but he radiates pride for me and with me. Each and every challenge Sam has encountered he does with grace. He adapts, he withstands, he rebuilds and he overcomes.  To effectively work with Sam I have to be at the top of my game.  I would love to say I can do that every day but I would be lying.  So this is where my trusting in God has to come in.  I have been reading the Book of Proverbs to Sam because it is full of wisdom.  It tells me the type of person God would like me to be and the actions I should do but I often fall short and being both human and a sinner and knowing that it is not my actions alone that will help me with Sam I pray and I trust in God. I can't heal Sam's hip...but I have faith that God can and will if that is his intended plan.

Yep, today I failed but tomorrow is another day and another chance to pick myself up and try to be at the top of my game.  

I know that life is not without it's difficulties and that with every challenge there are still blessings to be found.  I hope and pray that I continue to have the strength and resilience to wake up each day with the wherewithal to get through and to do it to the best of my ability and on those days that I don't...I trust in God to take over.  I have so many hopes and dreams for Sam, none of them are small or easy but together we can chip away at the tasks at hand keeping our focus on creating a life for Sam where he will be healthy and happy. I know that the dreams I have for Sam will change and develop as he guides me along and makes them his own and I hope that I continue to see the possibilities...to keep an open mind...to think outside the box and to enjoy the adventure. 

Tomorrow I will strive to stay positive, to encourage and not discourage, to emit a "can do" attitude, to look in Sam's eyes and let him know that I believe in him, have faith in him and that together we can learn anything.  I will strive to listen more and talk less, to participate and not dictate, to be calm, patient, attentive and fun. I will keep our windows of learning short and end each area on a positive to ensure that Sam feels successful and willing to continue. I will be resilient!!

Finding My Way....

To say the last couple of months have been difficult is an understatement. Deciding to proceed with another hip surgery and choosing a surgery that includes an external fixation device for a child that is immune compromised and then deciding to do that surgery out of state was probably one of the toughest decisions I have had to make in my journey with Sam.  Then a month later to lose the person who was my rock, my biggest supporter and Sam's #1 cheerleader was devastating.  There is not a day that goes by that I don't miss my Mom.  I try to support my Dad but can't even imagine what it feels like to lose the person you loved more than yourself and spent the last 60 years with.  Add to that the daily care that got completely side tracked with continuing issues with Sam's pin sites.  I am convinced that Sam's body just does not like the external fixator.  We have had infections, a large amount of granulation tissue, holes that seem to grow or split open just as I get them healed, creative pin care techniques which have included different wrapping techniques and the use of Medihoney, a granuloma, holes appearing in the split tissue above the pin site holes and a blackening of healed tissue.  Add to that Sam's issues with fever, severe constipation from his pain medication that we weaned him off of, digestive tract issues that include extreme amounts of output, being able to walk and then not being able to take more than 2 steps and you begin to get a feel for what these months have been like.  Sam has had good/bad nights, good/bad days and we have had a few times when texting/calling doctor's personal cell phones or having them do a home visit has been required. I thank both Dr. Steinert and Dr. Standard for putting up with my x-ray questions, pin site comparison photos and helping me get through all of this.

And yet...I am finding my way...in my own way...and in my own time...one day at a time...and sometimes one moment at a time.  I have days when I'm thankful just to crawl in bed at night and know that I made it through.  I attempt to wake up each morning...ready to face whatever comes my way.  Sometimes I'm successful and sometimes I fail.

The thing about grief that is really, really hard....is the finality. The knowing that the person you loved is gone forever and you are not going to see them or hear them again on this earth.  My heart has not come to accept the reality that my Mom is gone.  I can still picture what she would be wearing or I think I'm still going to hear her voice or see her with my Dad. It just doesn't seem possible that she was here one day and gone the next.

Taking care of Sam during these difficult 4 months of the external fixator is both a blessing and a curse. As much as I would like to just curl up into a little ball, stay in bed and let the world go by...I can't.  Sam has medications, nutritional supplements, transfer/movement, pin care and a diet that he requires my help.  Now that doesn't mean I don't find time when he is medicated, has gone to the bathroom and is enjoying his breakfast in his favorite recliner while watching Netflix to sneak away and curl up and crawl back into bed, or to take a shower and cry my eyes out or take Buddy for a walk in the woods with the snow mixing in with my tears. I have those moments too. Sometimes I curl up on my couch in my bedroom and open the Bible and read the first verse I come to hoping and praying that it comforts me and takes some of the pain away or that it is a secret message from my Mom or God telling me, guiding me through. Sometimes I pull out my Angel Catcher journal and try to tackle another page hoping that by writing I will work through the pain and grief but instead I find myself sobbing uncontrollably as I try to put my feelings into words.

Rationally I know that life goes on and we are to pick up the pieces and continue on.  I know that my Mom would want me to be the best Mom, best wife, best daughter, best sister, best friend, best Aunt, best cousin, best employee, best community member, best me that I can be and yet part of me wants to scream "Yeah Mom, but that's what you always helped me with."  My Mom was the person I went to, confided in, vented to and talked to.  She always made me feel better, stronger, she cried with me, laughed with me and always supported me.  My Mom was the type of person I could call at a moments notice when I forgot to check my calendar and ask her to watch Sam and she always said "Yes, no problem".  She was my respite care provider.  She has talked me through tense moments in the ICU, frustrating moments as I tried to figure out medically what was happening with Sam. She was there for me after Ben's accident, my father-in-law's passing, Danielle's eye surgery...always listening and comforting...listening and encouraging.  She was there to see Sam learn to walk, ride his bike and when he began to read and speak.  She helped me do Sam's NACD program with him so those moments would be possible and she and I were elated to break through the diagnosis barriers that Sam was originally given. She loved and believed in that little boy as much as I do.  Sam's multiple diagnosis, his medical needs, his vitamins and diet never phased her.  She never discouraged me from trying new things with Sam, she didn't judge or quickly jump to "do you think that's necessary or do you really think that will help?"  She never doubted for a minute Sam's true potential. She didn't see him as a child with Down syndrome, brain injury, Perthes, hearing impaired or any of it...she loved and accepted him as Sam.

How do you find someone to fill those shoes???  I can answer that...you don't...but the lessons she taught me ...the way she encouraged me...the things that I love and miss most about her is the legacy she left to me and I know she expects me to step up...step forward and do her proud.  It will take me a while to regain my strength, my stamina...right now I'm happy when I just get through a day and Sam and I go to bed healthy and okay.  Stress does terrible things to your health and Sam's decline has made me aware that I need to take care of me in order to take care of him. As Sam was going through a bout with fevers and pain his actions and reactions mimicked what we saw my Mom go through as she struggled and lost her battle with Sepsis. For a brief moment Jeff and I both wondered out loud if God took Grandma in order to get heaven ready for Sam. It's crazy what your mind will do when it is struggling with grief and stress. We both stopped and prayed. I spent most of that night on my knees next to Sam's bed watching him sleep, checking his temperature, monitoring his pulse ox and praying that we were wrong.  I was elated when he woke up the next morning with no fever and smiling even though that was the day of my Mom's funeral and I would have to say good-bye to my rock. When my Mom was in the hospital she didn't look at all like herself but the day of her funeral she looked beautiful, at peace and resting.  Sam even remarked that Grandma was sleeping.

Lately my thoughts have wandered to our next road trip...yes escaping is a valid response.  But interestingly enough they have also returned to my faith and Sam's future. My faith became established and strong many years ago while I sat in Children's ICU wondering and praying if Sam was going to take his next breath.  It was a time in my life...when life as it was happening...was too much for me to handle.  I had to put everything in God's hands.  I watched Sam stop breathing, I watched all his stats begin to drop, I watched the crash cart come flying into his room and I dropped down to my knees and pleaded that God allow him to live.  At that moment, with all that was happening I knew that God was the only person that could take control of that situation.

I felt that same desperation again when my Mom's heart stopped beating in the ICU at Aurora...but this time that prayer wasn't answered.  As I listened to them work on my Mom behind the pulled curtain and held onto my Dad's hand and listened to him plead with God that he would love and take care of Marilyn no matter what, just let her live and don't take her away from me...my heart broke.  I knew that what my Dad was asking for was not what my mother wanted, if she couldn't come through this and do everything she loved to do she would rather leave this earth and she did.

I'm not really mad...I'm frustrated, sad and a little lost but each day I know my Mom is pushing me, challenging me and guiding me.  I don't think the Angel Catcher Journal just showed up on my computer by chance, my Mom knows my therapy is my writing.  I don't think the link I clicked on that I thought was taking me to an article on "wound care" but instead took me to an article on "Little House Living" which of course turned my thoughts to Sam's future...was a mistake.  Just as I believe that my reading the Book of Proverbs to Sam wasn't by chance but instead had divine intervention.  Sam sitting quietly was my first clue, and when he said "Ummm...Mom, my sins washed" and he used his hands to show me away.  I repeated what he said and he said "Yes, Mom" and I cried.  Sam struggles with listening, auditory input, processing and he would normally repeat what he has heard but what I was reading was not about sins being washed away.  Sam saying that particular phrase was a complete, solid and pertinent thought and expression that definitely comes from the book I was reading but the thought process of pulling something like that out of a brain that struggles with aphasia and apraxia is miraculous in it's own rite.

My Dad called to tell me that Mom's peace lily that hasn't bloomed in years has 10 flowers on it. You're good Mom!  I know she is with me but I still miss her voice, her smile and her laugh each and every day. I hope she smiles as I pick up Dad each Saturday to attend church and go out to dinner. I hope she smiles as she sees me blogging again. I hope she smiles when Sam's external fixator finally comes off and he walks again. I hope she smiles when Wendy and I plant all her flowers this spring. Keep guiding me Mom, you always said "We can do anything we put our minds to" but remember sometimes I need a push. In your honor...Wendy, Martha and I will wear a necklace of hearts with your big golden heart in the middle and the necklace's inscription will remind us that:

"The love between a Mother and a Daughter knows no distance".

Faith...Hope...Love

Those three words are what is carrying me through this Christmas season.  I love Christmas and all the wonderful things that go with it...but if I'm honest...this Christmas is different than others.  I know that after Christmas Sam will be having his second hip surgery.  The surgery will be done in Baltimore, too far from home in my mind.  Any surgery for a child is major but when that child also has respiratory and immune system issues...the worry factor is multiplied.  And then there is the whole internal battle that every parent faces when they have to make medical decisions for their child...is this a good idea, should I put him through more, what if this doesn't help, what if he gets sick, what if infection sets in, what if he's worse instead of better, can we really do this????  The "what if's" cause insomnia as my mind swirls and plays with the answers to these questions...as if thinking about them will produce the desired results...and then sometimes my mind gives me the wrong answers and my anxiety and fear increase.

It is only through my faith that I can quiet my mind and give all those worries and anxieties to God.  When I get past all that...I tell myself "I have to have hope"...seems like such a simple concept and yet that too is easier said than done.  Because part of me doesn't want to get my hopes up too high.  I really thought that after the last surgery things would be better but they weren't.  I had hope...and where did that get me???  But then I remember it got me through and I need hope to get me through again.  Believing in Dr. Standard and his ability gives me hope, knowing that Sam could be better and have less pain gives me hope, visualizing Sam walking with a better gait and riding his bike again gives me hope...but ultimately relying on God gives me hope.

I think to really appreciate the depth of my thoughts you would have to be in my head but let me share just a few of these thought processes with you.  Out of pocket cost???  Checked with insurance to see if pre-authorizations are needed and if the hospital and doctor were in network.  Deductibles went up this year so checked the new rates and out of pocket ceiling before insurance takes over.  Title 19 does not transfer to out of state surgeries so that is not an option.  Check with Family Support and Waiver to see if they can provide any financial assistance.  Airline, gas, lodging, food need to be added in.  Talked about therapy requirement with insurance after surgery, thinking 3 to 5 days a week in the pool since land therapy will probably not be effective with Sam due to his lack of cooperation.  Contacted the YMCA aquatic director to inquire if Sam will be able to go into their pool with the external fixator in place...sent video showing child swimming with external fixator.  Contacted 2nd therapist to help cover the needed aquatic therapy keeping in mind what insurance and Title 19 will cover.  Insurance explained they will cover 20 visits and then will need medical necessity to cover any more (oh joy).  The external fixator is on for 4 months at least.

Talked with social worker about changing Sam's respite care to medical care to help with the daily pin care and set up a meeting in January with Bright Star Care to discuss Sam's needs.  I'm really hoping that works out to save my family from what will quickly become a dreaded daily chore.

Made plans to meet with Sam's home program advisor, Ellen Doman to plan out Sam's priorities in the areas of education, processing, speech & language, respiratory rehab, keeping him engaged and not stimming and overall review of where we are at and short and long term goals for continuing progress.  Keeping Sam engaged and not allowing him to withdraw in his own little world is a top priority.  Sam has made so much progress in being social, communicating, and improving his processing that I don't want all of that to backslide too much.  Soooo what keeps Sam engaged...Netflix, Ipad, conversing, games like basketball, nerf guns, balloon badminton, remote control vehicles, air hockey, puzzles, pictures of family or places we've been, puppets (love/hate relationship with those) and the list goes on...  Now taking that list and figuring out what to pack is a whole nother process.  Took laptop to our favorite computer guru, The Help Key to make sure it is working properly and that the camera works for Skyping with Ben and Danielle, Wifi set up for Netflix, the disc drive works for movies and educational discs like the Hear Builder series and added a wireless mouse so Sam can easily use the system.  Purchased a basketball game I hope to be able to install in Sam's room to encourage him to move his upper body which will start working on the respiratory rehab.  Sam got wonderful remote control vehicles for his birthday to drive around the hospital room and crash into doctors and nurses, Hee Hee.  Packing the puzzle board we purchased for his last surgery that allowed him to work on puzzles while in bed.  Pictures of family loaded on the Ipad and bringing puppets even if he just needs to throw them across the room to communicate he's not happy or he's frustrated in a safer way. You can never underestimate the need to do something physical to relieve pain or frustration...I always try to incorporate something into Sam's recovery.  Sam's white board and markers to help facilitate his communication since Sam often struggles with pulling out the right words or responses and often finds it easier to choose them from his board. Add to all of that Sam's respiratory equipment, acapella, spirometer, nebulizer, inhalers and emergency oral steroid and the fun things to encourage breathing like feathers, pom pom's, whistles, candles and party favors.  Sam's pulse ox so I can check his respiratory function as we travel.  The flip video to tape therapy sessions for the therapists back home and pin care for the medical help.

Having Jeff check the van to ready it for yet another road trip and packing extra pillows and blankets for the ride back home to keep Sam warm and comfortable.

I am discussing Sam's dietary requirements with the dietitian at Sinai but will also need to bring along some of Sam's go to diet items for his time at the Hackerman/Patz House.  His millet/zucchini bread, coconut kefir, fermented veggies, goat milk and supplements.  I will also need to pack Sam's arsenal of essential oils which help with his immune system issues.  Working on getting some XXL pants shortened for him to wear after the ex-fix is in place and having a swimsuit altered to accommodate the ex-fix.  Oh yeah...and then I have to pack clothes, wheelchair, walker and anything I might need for this journey....valium, alcohol, a ton of chocolate...just kidding about everything...except the chocolate.  Jeff and I will need to pack our clothes, Jeff's desk from work and snacks/beverages needed for the road trip.

Then my thinking switches to Ben and Danielle and I need to notify the school of our plans, update Ben's Dragon Naturally Speaking on the computer, check in with his go to person so they know Ben will need to come to them in my absence for any additional help.  I will be working with Ben through Skype and email to help him with his school work.  Print out Danielle's practice and sports schedules and driver's ed training so I can arrange transportation for her.  Arrange with grandma's and local family to check in on them and invite them for dinner and serve as back up for any school contact that may be needed in case of illness or when they travel out East to see Sam.  Put money in their lunch accounts and find something special to leave with them from Sam.

Make plane reservations for Jeff and Randy (my brother in law) who will be coming out to assist when Jeff returns to work.  I am so thankful to have family that steps in, supports and helps make all this possible.  I would be lost without them.

To prepare me I am taking more walks, working (which is a wonderful break for me).  I know that sounds crazy but when you are an A type personality, keeping busy is what often times gets you through and helps you to remain grounded and focused.  The paycheck and employee discount is just a fantastic perk in my case.  I am highlighting my favorite verses in the Bible regarding Strength, Faith, Hope and Love and would love to hear any and all favorites from my blog readers.  Sam and I are reviewing the Book of Proverbs which contains an awful lot of wisdom and we have increased our daily prayers.

Throw in hitting a few things on Sam's home program...the priorities...like auditory processing, speech and respiratory exercises with aqua therapy twice a week and you get a glimpse of my life.  Oh yeah...don't forget the regular stuff, laundry, dishes, cleaning, grocery shopping, and making dinners and lunch.

Now add in Christmas and every thing that comes with it and life is...well...a little hectic.  But that's where Sammy steps in and teaches me to take it a day at a time, to count my blessings, to worry less and laugh more, to focus on the important stuff and let the rest pass by.  If I don't get cookies baked, birthday thank you's sent, Christmas cards out on time and all the presents wrapped...I know life will go on and I have long given up on beating myself up on those kind of things.  If you know me, you know I appreciate everything and everyone... my schedule doesn't always allow me to stay in touch or reach out but I try to keep my focus on the things that matter, my faith, my family and my health.

With all that said I still struggle with the natural feelings and emotions that come with all of this.  I have anxious moments, outbursts of emotion at the strangest times, feelings of happiness and sadness, worry and hope, bad thoughts and good thoughts...that's what makes me human.  But in my weaker moments...when the burden is too much for me to carry...I have God.  I ask God to be with me every moment of everyday to guide me and love me and I never forget to thank him for my blessings.

On one particularly hard morning, after Sam woke up and had numerous pain issues I retreated to my room, curled up on my bed and cried.  A commercial came on the TV about Shriner's Hospitals and it showed a little girl in a wheelchair and how after surgery she was able to do gymnastics.  Normally this would make me cry more but instead I felt such a wonderful outpouring of HOPE...as if God were talking directly to me through that TV and telling me to pick myself up and carry on...and I did.

When Sam had his first surgery I purchased a little stone with an angel inside called an angel worry stone.  It came with this poem:

Give Your Worries to the Angels Poem 

Give your worries to the Angels

          It is time to heal your heart.

Every day's a new beginning

          Where love and hope can start.

Give your worries to the Angels

          Release your doubt and fear.

Trust in God to always be there

          With Angels always near.

During Sam's surgery I kept this stone in my hand and rubbed it, prayed with it and it gave me comfort.  I thought I had lost it but when I reached into my winter jacket...there it was.

And that's where the last word of my blog post title comes in...Love.  God hears my prayers, acknowledges my concerns and lifts me up over and over again.  But I am weak because I am human and those doubts and fears can creep back in as they did this past week, so I decided to keep myself busy.  Sam and I ran errands and one of them was to pick out a new couch and tables for the living room with the money I had made from my new job.  I wanted to celebrate by adding something to our home for our family.  I picked out a beautiful new couch and 4 tables, the couch was back ordered but they loaded the tables on to the truck and Sam and I drove home singing Christmas carols.  I put together my new tables which required me to attach the legs and I began to clean out the old tables which have been in our living room for the last 16 years.  I found a lot of memories, baby albums which I had to stop and share with Sam, pictures, school projects and some of the not so pleasant items like long forgotten Halloween candy and garbage that my children were too lazy to throw away and just stuck in the drawers instead.  But then I came across something that literally took my breath away.  I saw a tiny piece of paper with numbers on it that I quickly recognized was from a fortune cookie and when I turned it over...this is what I saw.

I gasped...closed my eyes and thanked God again!!  No one remembers putting this fortune into the drawer or where it came from...but I know and I go into the Christmas season happier, calmer, and thanking God for all the wonderful gifts he has given me...including the birth of his precious son...and loving me unconditionally in heaven and here on earth through a little boy that strengthens my faith, challenges my thinking and opens my heart!  Merry Christmas!!!

Enjoying The Best And Praying About The Rest

My California trip seems so long ago and I really need to finish posting about it because I have great pictures and awesome videos to share...but life has a way of changing our direction, our perspective and our reality.

As I explained in my last post Sam's mobility or lack of mobility became my priority.  Last week Tuesday Sam had his sedated arthiogram CT scan.  If you remember from my last post Sam more or less told me that we needed to do this.

Going into the appointment that day I felt so strong about the possibility that this would give us all the answers and some how, some way we were going to be able to finally help Sam move without pain.  I told Jeff, "Wouldn't it be great if they found something that could easily be fixed and Sam was walking like he did before this surgery, before Perthes".  God spoke to me through different means and I went to Children's confident that this was going to be the answer to our prayers.

Sam woke up and he went into Children's happily until of course they wanted to do a pulse ox which always freaks him out and then the happiness really took a turn when they decided to put the plastic bracelets on.  I convinced him the nurse could put them around his ankle over his sock and we would cover them up so he didn't even have to see them.  It was a good idea in theory...unless you have Sam's sensory issues which tend to escalate your OCD issues of really wanting those bracelets off.  It took about 15 or 20 minutes of threatening to turn off his movies on his Ipad to get him past this experience but he finally stopped trying to take them off and would just blow on them.  I gave Sam his dose of Versed which for the second time in Sam's life had the desired effect of making him drowsy.  During previous sedations it actually made him hyper.  Sam drifted off to sleep but woke up each time they tried to put that blasted gown on.  He wanted nothing to do with that and he was going into this procedure with just his underwear and socks on...he's really quite comfortable with his body image but not so comfortable with those scratchy hospital gowns.  I was calm and confident when he was wheeled away.  I felt like we were going to get answers...that this needed to be done...and that we were helping Sam.

The sedation, injection and CT scan took about an hour and a half to complete and they called me into recovery as Sam was just starting to come out of anesthesia.  Thankfully he came out gentle and calm and I again felt reassured that we were doing the right thing...yep this is what we were supposed to do.  Sam dozed for a while but when he did come to he didn't want to hang around and wait for the nurses to complete the paperwork...he wanted out of there...and he wanted out NOW.  He asked to get dressed, then he wanted his shoes on and PLEASE, PLEASE finally cut off those blasted bracelets.  He thanked the nurse for her skill with the scissors and her removal of those plastic torture devices and then he wanted to get into his wheelchair.  He was ready to jump out of the bed before she even lowered it and as soon as he was in his wheelchair he was pushing himself out the door.  I wheeled him around while Jeff signed his life away and in record time we were headed out of there.  Note to self:  a persistent child can move medical personnel much, much faster than an angry parent.

The next day I waited for the call to come in from the orthopedic surgeon.  After a few rounds of phone tag we finally hooked up and I listened with anticipation.  But I quickly lost my enthusiasm when I heard "We didn't really find anything definitive...there is nothing to easily fix the pain or issues...we are not really sure what is causing Sam pain or causing him to walk less or stop walking."  And then as if this story is on rewind I heard again, "Sam came to us with severe hip dysplasia and 100+% collapse of his femural head...an advanced stage of Perthes.  The surgery was successful in containing the hip in the socket but the overall structure and damage to Sam's hip is extreme."  My only ray of hope:  "There is a ridge of bone outside the socket which might be causing Sam movement issues but it would normally not present acutely, so we are not sure if that is an issue or not."

It is times like this that I feel like all the air is just being sucked right out of me...I'm left frustrated, kinda angry, tired and hurting.  My brain and heart hurt the most as I think about this wonderful little boy that I just want with every fiber of my being...to walk and move without pain.  My brain takes me back to the road trip to Maine and Vermont when Sam was hiking, walking and running along the beach with a smile from ear to ear and it has the affect of adding salt to the wound.

But then I look at Sam...happily folding laundry while laying on his stomach on the living room floor.  I watch him smile and laugh as I throw another load of clean clothes on top of him.  I watch him sit up and begin handing me clothes as he tells me the color, owner and item description of each one...and I smile.  But that smile turns to concern when I see him quickly lay back down on his tummy and sigh heavily when the pain of sitting becomes too much.  I sigh...deeply.

Yeah..he adjusts...but is that all we can hope for???  Is the idea of him walking and moving without pain an unattainable dream???  His orthopedic surgeon asked me to meet with another orthopedic surgeon to discuss what removing the ridge of bone would entail.  I appreciate that we can get in so quickly and I also worry that what he saw on the CT scan has him jumping through hoops too.

On Friday we met with the other surgeon and I got my first look at Sam's CT scan.  Seeing your child's bones in a 3 dimensional form is indeed really cool (it is amazing that they can turn it in any direction and show all the detail) but at the same time seeing in 3D how distorted and abnormal your child's hip is...is a little disturbing...really takes a lot of the coolness out of the whole procedure.  Sam's hip structure is abnormal in many ways, as I looked at the 3D model they showed me of a normal hip...I had a hard time trying to figure out what was what on Sam's hip.  Where the beautiful round ball should be was a twisted mass that kinda looked like you took a marshmallow and jammed it into too small of a hole and all the stuffing squirted out the sides (yep...that's my technical analysis).  I couldn't help but think of the word "impingement" when I saw all the excess bone outside the socket.  The findings on the report state:  The left femoral head epiphysis is nearly completely flattened and densely calcified in a linear fashion. The flattened femoral head/metaphysis articulates with the pelvic bones at a shallow "high riding" lateral dysplastic acetabulum.  Intra-articular contrast shows the extent of the capsule about the femoral head. No obvious loose bodies are appreciable.  Hardware at the left proximal femur and supra-acetabular left iliac bone is noted.  The left proximal femur shows vargus alignment.  Yeah...that's clear as mud...my definition is sounding much better now isn't it???  Sam has loose joints and low tone, some lovely attributes that come with a diagnosis of Down syndrome so I can't help but picture Sam trying to weight bear with no ball in the socket so this ridge of bone just smashes along the side of his hip socket causing all kinds of pain and pinching of who knows what.

I wanted this surgeon to tell me he could fix it...he could fix Sam.  But I didn't get that...instead he was kinda wishy washy with a lot of  "might be helpful", "not sure", "the bone could grow back and the surgery would have to be repeated", "this may not be the cause of his pain" and yadda, yadda, yadda.  When he left his nurse explained that this was major surgery, similar to his first surgery and he would probably be back in his body brace while he healed and then we would have to begin rehab all over again.  When I asked the doctor about removing the hardware he explained that they would not want to do both things at the same time because then they could not determine if the surgery was successful or if Sam was having complications from the hardware removal.  He also mentioned that due to Sam's slow bone healing that if the hardware was removed Sam would have approximately 6 holes in his femur and could possibly snap his femur before those closed up sufficiently or his bone may remain weak and if the hardware remains in it will continue to impede his growth.  Wow...this just gets better and better.

But I want to stop for a minute...and tell you about something else that happened before we went to see this surgeon. We were early because I wasn't sure how much rush hour traffic we would encounter so I gave us extra time to get there.  As we arrived I decided to stop at the deli after the skywalk to grab a bottle of water.  I noticed a young man in his 30's looking at Sam and I didn't think much about it because Sam often gets noticed when we are out and about.  I purchased my bottle of water and then stopped to open it and check my timing.  The young man walked up and said "Hi, do you have a moment?".  I said "Yes" and he continued "Who is this little man?" I told him "This is my son Sam" He said "Hi" to Sam and asked "Where are you headed today".  I told him "We are going to ortho to review a CT scan and talk to a surgeon." At this point the man began to tear up, as he was reaching into his pocket he told me "My best friend died today." I told him "I'm so sorry for your loss".  He handed me a $100.00 bill and said "I want you to take this and make his day special." At this point the man was visibly shaken and as I tried to hand the money back to him he said "Please, take it and do that for me." and he began to walk away. I called to him "God bless you" and he said "God bless you and your family too" and he hurried away as he began to sob. I began walking toward ortho stunned and not really sure of what just happened.  I turned around and the man was gone and I continued walking with the $100.00 bill in my hand.  I stopped and said a prayer for the man and I wiped away my tears.  I replayed what had happened in my head and I began to wonder "What does it mean God, what are you trying to tell me or show me??"  This is the second time this has happened to Sam and I, the first time was on our trip to California and a complete stranger gave me $20.00 because Sam touched his heart.  So what do you think this means???

My daughter and I thought possibly and kinda frighteningly that the man was telling us that we needed to make every day special because we weren't going to have that many more on earth.  My Mom called me today and read me a story from the Milwaukee Journal about a young boy named Bo from Door County that died of Leukemia on Friday.  Here is the story.  I don't know if the young man who gave me the money was referring to this young man but there was a tie to Children's Hospital and other things from this boy's story made me wonder if this could be related.  In the story they talk about Bo's philosophy: "Your actions set the pace and influence the future," Rolf Johnson said. "Bo's big deal was that you had to reach out to people, because people had done that to Bo."  A friend of mine and her mom thought that maybe God is trying to get me to receive from others because I am a blessing to many but I often struggle when people willingly offer to help me.  Another friend felt that I had dropped off in my writing on the blog and God wants me to share my journey and story with Sam to continue to bless and inspire others.  I'm still not sure and continue to pray for wisdom to figure all of this out.  So my readers...what do you think my message is???

After much thought and prayer over this weekend I have called a meeting with Sam's pediatrician to discuss the surgery option from Children's, to discuss pain management for Sam and to brainstorm on what our next steps should be.  Is now the time to head to Sinai Hospital in Baltimore and meet with Dr. Standard and Dr. Mont to hear their thoughts and suggestions on how to help Sam?? Surgery for Sam comes with it's own risks and issues, recovery, rehab and caring for Sam's medical needs has been my focus for the last two years.  I continue to pray for guidance on all of these subjects.

But no matter what, Sam and I are in this together.  I will continue to remember the young man's advice to make Sam's days special and Bo's advice that my actions influence Sam's future.  We may have even more challenges than we had but we are going to continue to make each day the best that we can.  Today when my brain couldn't shut off from thinking "what's next", I decided to take Sam and Buddy for a walk.

I love this picture of the two of them!

 I always like to give Sam a chance to take pictures too, so here is one of his.

 I don't know who's smile is more cheesy...Sam's or Buddy's.

Another cheesy smile!!!

I think in this one they are saying, enough with the camera, let's go home!!

 Here is another one of Sam's perfect pictures!!!

 A wonderful walk on a wonderful day...with a boy...

and his dog!!!

Tomorrow make your child's day special.  It doesn't have to be in a big way, a walk, an extra book read while snuggled up together, a special meal, taking time to play, extra hugs or just reminding them how much you love them.  Do that...for Sam...and Bo...and the wonderful young man who reached out to a complete stranger to honor the memory of his best friend.  Have a great night and I leave you with a poem written by the mom of a dear friend of mine.

Morning Sonshine

 

As I soak up the Son,

he changes my heart.

Just sit and relax,

he is doing his part.

Mine is to trust

and obey what I hear.

He will take worries

and remove every fear.

Soak in the Son-

each morning a new-

he'll bring the changes

and make me brand new!

By Diane Whiteside 

A Monday To Remember!

Most of us...would like to forget about Mondays.  Monday is the first day of the workweek, a time to say good-bye to our fun and relaxing weekend and to get refocused on our goals and to jump into the first day of what can be a really long week.  Ugh!!!

But this Monday...this Monday was different.  I'm not sure if it was the supermoon, or maybe my horoscope foretold of the wonder of this day.  All I can say is this was a great day and one I will not forget.

I think God gave me some advance notice because my Facebook entries were somewhat telling. Here is my Facebook notice for Sunday:  What's on my mind???? First and foremost "THANKFUL"...for so many things in my life. PRAYING for family and friends that are in need. LOVING time spent with my husband and children. LAUGHING at the everyday antics of my family. GRATEFUL for the peace that comes with faith. AMAZED by the life lessons that Sam teaches me. BLESSED by the prayers we receive from others. HUMBLED by the everyday miracles that keep me grounded and balanced. HOPEFUL for what tomorrow will bring! Good Night everyone!  


And my entry for Monday morning:  Let's get this Monday started: 
Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible. St. Francis of Assisi

Sam doesn't usually like Mondays either.  He tends to sleep in longer...my requests to start our school day are usually met with strong resistance.  I usually don't even push chores...I mean let's face it, we all have to pick our battles.  But this Monday when Sam woke up...earlier than usual...he greeted me with a smile and a "can do" attitude.  I found him dressed in his clothes before I even had to ask a second or third time??? Hmmm, when I suggested heading to the kitchen to get out his supplies for breakfast he smiled and said "Okay".  I don't quite remember...but I think it was at that moment that I felt his forehead to make sure he wasn't running a fever and what I was seeing was some form of delusion.

As he grabbed his walker without a reminder and walked past his hat he handed it to me and said "Turn on".  The look of surprise on my face must have been unmistakable because he repeated it to me a second time.  I turned on the hearing aid on his hat, handed it to him and watched him...frankly wondering "Who is this child??"

Sam finished getting his breakfast supplies out and announced "All done" "Breakfast please".  "Mom, TV Sam's room."  I said, "O..k..a..y??"  I thought this was maybe when the day was going to turn back to normal.  Sam wanted to watch TV while he ate breakfast.  I figured he would fight me to turn it off and get started with our day of homeschooling and yet when breakfast was over and I asked him to take his plate and glass to the kitchen sink, he told me "No" but it was quiet and with very little redirection he headed to the kitchen.

I began feeling kinda empowered...I decided to test fate and throw in a new chore.  When he got to the sink I told him he needed to use the scrubby, get the egg off his plate and put it in the dishwasher.  This was met with a louder "No" but with a little one on one assistance and auditory direction this task was completed. Asking him to put his glass and fork in the dishwasher got me a look of "Really Mom, you're pushing it!" but he did it.

We then headed to the living room to go through Sam's catechism lesson.  Sam listened as I went through the morning prayer, he listened to the Bible verses I read with a chuckle (I'm not sure why), he repeated segments of the first 2 commandments and the Apostles Creed.  My favorite part was singing "Jesus Little Lamb I Am".  He smiled through most of that.  We folded our hands and prayed for family and friends and that God would heal Sam's hip and he repeated parts of The Lord's Prayer. We ended with the blessing and I love watching Sam bless himself.

I then had him head to the computer to begin his academics.  It was met with a weak "No" but he moved into BrainPop Jr. with little to no resistance.  Sam's favorite movie is "Exercise", so a promise to allow him to watch that at the end is all it took to get through the Science, Social Studies, Health and Music videos.  In Science we watched a video on "Animal Camouflage" which he was interested in, Social Studies was "Community Helpers" which he listened to and even tried to repeat extinguisher which sounded more like stinguisher.  Health was about "Caring For Pets" and since one of his chores is feeding/watering Buddy this was a good video.  Music was about "Percussion Instruments" and a set of instruments for Sam to work with should be arriving later this week (Ahhh, the fun we will have making noise music). During each video we stop and chat on areas that interest Sam. I was very happy with his attention to the videos and he was rewarded with his favorite "Exercise" video.

We then moved on to his reading on Raz-Kidz.com.  Sam is on Level D which is fairly easy reading for him but we are also working on comprehension which isn't as easy for him.  So he listens to the animated book once or twice, answers 5 questions and then reads the book out loud.  Today we read "In The Woods" and Sam got 4 out of 5 questions correct.  But what was really neat was to watch and listen to him read the book.  Sam struggles with word retrieval, he often switches similar words house/home, on/in, woods/forest but if I lingered on the word he was usually able to retrieve the correct one. Sam often yawns when he reads but he was able to get through with very little yawning or resistance.  We were on a roll!!

From there we went through his math and reading lesson on K5learning.com.  He had a vocabulary lesson in reading and a "what number comes after" lesson in math.  He did well with both of these and was rewarded by doing his favorite PowerPoint lesson "My Colors".

I then had Sam work on his aim with the Nerf gun since he still struggles with some vision issues but he thinks this part is just play.  We sat down and read one of his favorite books about trucks and transportation equipment.  We talked about the pictures and I drew a quick dump truck that Sam colored as he stretched out on the floor.  Sam moved over to the kitchen table and we worked on the KidCalc app that  walks Sam through 4 addition/subtraction problems with the reward of completing a picture.  I told Sam we need to get 3 pictures, I was again floored when he chose to do 5.  That is 20 math problems.

Sam then worked on his writing with the "Write My Name" app in which he writes his name, Dad, Mom, Ben, Danielle and 4 short sentences.  What is really great about this app is how it guides his writing but then allows him to see exactly how he wrote each letter.  As I made lunch he listened to two books on the Grasshopper App.  At this point I really felt like the day could not get much better.

After lunch we headed to speech which went okay although I had noticed a stiffness or increased limp on his way in.  After speech we headed to the pool for aqua therapy.  I decided to attempt a goal that we have never been able to meet.

Sam has been doing therapy in water since he was 2 years old.  He loves the water but his eyes don't handle the chlorine and chemicals very well and he loves to swim underwater.  Over the last 9 years I have purchased many different goggles but Sam never adapted to any of them.  Sam has huge sensory issues around his head and I remember stressing out over his hearing aid but Ellen Doman had told me "If he can hear better...he will wear it" and he did.  So I rationalized that if the goggles worked for him and kept water out of his eyes he would wear them...right???  But none of the goggles seemed to fit right or work well for him.  So I jumped on the Hammacher Schlemmer site.  This company tests all the products listed in their catalog and only sells the best of the best. They had a pair of swimming goggles for $23.00 and I decided to give them a try. After all they had a lifetime guarantee.

Sam sat on the edge of the pool and I showed him the goggles.  His voice became very loud as he yelled "NO GOGGLES, NO MOM".  There were 4 to 5 senior citizens in the pool and a group of people from a local group home and a few others.  As Sam's voice got louder they all began to turn and stare.  Normally these situations would make me very uncomfortable and I would try to quiet Sam and probably give up.  My mind would have gone to that place where I see them telling their friends and family about the horrible Mom at the pool who tortured her poor special needs child with a pair of swimming goggles. But today was an amazing day and he had done so well with so much that I felt with a little push "He could do this."  I ignored the stares and just concentrated on Sam telling him "You can do this, Sam.  I know you can." His therapist and I united and said "No swimming if you don't wear the goggles."  Sam yelled louder and every time we got them on he just pulled them off and tried to throw them.  After probably 10 attempts, Wendy threw some dolphins in the water and let them sink to the bottom.  We attempted to put the goggles on one more time. A gentleman from the group home joined my encouragement to Sam and told him "You can wear the goggles Sam. You look cool."  As soon as they were on I told him "Dive under water Sam, go ahead, get the dolphins"...and after one more very loud yell he dove in and when he came up and gently tapped the goggles...I knew we had finally accomplished the goal.  Sam began to dive underwater again and again and each time he would try to go deeper.  I don't know whose smile was bigger...mine or Sam's.  He began to go under and he would start talking before he came up, he said "Mom, Sam's toes, cool".  He swam under water for longer and longer which is so great to help him work on his deep breathing and lung strength.  Wendy, his therapist said, "I'm pretty sure those are magic goggles."  The people around the pool stopped staring and began smiling, they were as amazed as I was that a little boy so dead set against a pair of goggles could now embrace them as the coolest thing in the world.  Wendy dove with him and she said his eyes are wide open and he is just taking everything in and his smile is from ear to ear.  Sam swam and swam and swam...as his Mom I swam too...in happy tears.  His hip no longer seemed stiff or sore, he dove and he swam, he dove and he smiled.  After a while he began to lift the goggles up if any drips of water got in and he re-adjusted them himself. No direction and we were no longer worried that he was going to rip them off or throw them.

It seems like such a simple thing...getting a child to wear swim goggles and yet this was a goal that was 9 years in the making. Tonight I am so very proud of Sam. I'm pretty sure he is still swimming with his magic goggles in his dreams!


"Being your best is not so much about overcoming the barriers other people place in front of you as it is about overcoming the barriers we place in front of ourselves. It has nothing to do with how many times you win or lose. It has no relation to where you finish in a race or whether you break world records. But it does have everything to do with having the vision to dream, the courage to recover from adversity and the determination never to be shifted from your goals." 
Kieren Perkins-Olympic Gold Medal Swimmer