Wednesday, April 3, 2013

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" 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 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 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 keep an open 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!!


  1. Thank you so much for sharing your heart, Sue. I have many days that I am a failure. But, God's mercies are new every morning. A friend shared this link on her blog and I thought of it as I read the beginning of your post.

    (P.S. I have hesitated to bother you with this, but I have a few questions about NACD and the Milw chapter. Could you have someone from the chapter email me please? deut4.9 AT gmail DOT com. Thanks so much! If there are any larger homeschooling families, I'd love to talk to them too. Thanks!)

  2. Sending you hugs, chocolate, tea and a good book!!! You do an amazing job and I'm sure you're going to get a promotion from your boss in heaven!!!! I hate the feelings my "failure" days bring on and I hate it when I have a lot of them! I think it comes with being a mom! You are an awesome writer and I'm always encouraged by your honesty and strength! You & Sam are in my prayers! I miss my mom so much too - she was my "best friend"! Brenda

  3. Of all the words I can think of to describe you, failure would never make the list not even for a day. My guess is that all your children would agree with me. Wishing you resilient tomorrows. Audrey

    1. Thank you Audrey...don't check in with my teenagers though...okay??