2014 Post: An Update on Jacob

Sweet Friends,

Two years ago I posted a short series blog about our family’s journey with autism – Jacob’s journey being the most prevalent.  Today, April 2, is World Autism Awareness Day, and a great time to write an update. So, for anyone interested in where we’ve been, and the progress our family has made this past year, I hope you’ll read the following post!

The funny thing is progress is often in the eye of the beholder. I remember watching my dad stand in our upstairs family room of my childhood home gauging the growth of the oak trees he’d planted in our backyard. Throughout the years, he would place his toes against the baseboards (his base point) and look out and see how much the tallest branch had grown since the last time he stood in that same position. He would relish with pride the height of the trees. He was thrilled with the progress of their growth.  The truth is that the trees had flourished because he had put forth significant effort to ensure they would. Years later we sold our house and someone else moved in. The new homeowners reaped the benefits of beautifully matured trees likely with little concept of the amount of care that went into planting the saplings. It’s so symbolic of our children, isn’t it? So much care goes into their beginning. So much pride comes from watching them flourish and grow, but in the end, it will more than likely be others that will truly benefit from what they have to offer. It’s THIS legacy that I work hard to nurture. I want Jacob (and Audrey too) to flourish. I want them to reach their maximum potential so that they can benefit others.

Today, I have the luxury of standing in the growth era with my toes on the baseboards assessing progress and feeling abundant pride regarding the accomplishments Jacob has had since the last time I stood in this spot.  It’s certainly been another year of answered prayers and many many changes.  Here are some highlights, as well as some parting thoughts:

·        Last year, Jacob remained in his Communications classroom (what many of us knew to be “Special Ed”) the majority of the day. He simply wasn’t ready to be integrated with his typically-developed 3^rd grade peers. But 4^th grade has been different! I’m proud to report that now Jacob eats lunch in the cafeteria and joins his peers during specials (PE, Music, Art, etc.) He’s doing very well with instruction!  He recently created a basket weave in art class, is learning to play the recorder in music, and his adaptive PE teacher, Coach Jim, has taught him how to dribble and shoot the basketball.  He’s pretty good actually! For Christmas, my parents bought Jake his first basketball goal, and Dave just recently installed it in our backyard J It’s a wonderful distraction from the IPAD!

 

·        Also, since my last update, Jake took private swim lessons at our neighborhood activity center, and is currently going to gymnastics every Friday afternoon.  He really enjoys these after-school activities. It’s really a great confidence builder and important for him to receive instruction for someone other than his teachers, his therapist or from us.

 

·        Speaking of after-school, we have a new therapist too! We miss Olivia who was with us for all of 2013, but she and I both came to the realization that it was time for Jacob to have new programs and a new therapist. We are now working with Michelle who comes to our house twice a week.  Michelle has already taught Jacob how to answer “YES” or “NO” when he’s asked a question, rather than repeating the question or yelling “NO” if he disagrees. I can’t even explain how HUGE this is!!

 

·        Since my last update, Jacob learned how to sit at the table with us to eat. His diet has expanded from only a handful of preferred foods to a wide range of new foods! The Weidner Family proudly welcomes all variations of chicken, pastas, tacos, pork chops and drumroll please…new kinds of fruits and red meat! He didn’t eat red meat until last year! I can’t describe how wonderful it is to sit together as a family every night and only prepare ONE dinner for all of us to enjoy together as a family.

 

·        Jacob now tolerates wearing a life jacket, has much better eye contact, tells us what he wants/needs, vocalizes when he’s hurt, etc.  Although he has to be prompted and encouraged to engage with us, we know he’s in there – still buried in autism rubble – but he’s in there!!

 

·        Jacob will be 10 years old next month. Until last summer, age 10 was a significant milestone because age 10 was the point in which his in-home therapy would cease to be covered by insurance. However, that’s no longer the case! Texas Governor Rick Perry signed a bill last year expanding autism insurance benefits in Texas by eliminating any age caps for state-regulated health plans which meant the 10 year old ceiling was lifted.  Yay! For our family, this was a big deal. If that bill hadn’t been passed we’d only have one more month before we’d have to consider paying out of pocket for the treatments that are helping him greatly, and it’s not cheap!

 

·        Along with Jacob’s neurologist, we have finally settled on the right dose of medication.  His doctor also prescribed an appetite enhancer to stimulate his appetite since he’s underweight (loss of appetite is side effect of his ADHD medication…ugh)! He hasn’t gained much weight, but it’s a careful balance to ensure he’s gaining weight while also providing more nutritious meals.

 

·        Jacob also helps out with chores like putting away dishes, hanging up his clothes, picking up toys, etc.

 

·        He plays more and more with Audrey, and she’s been a terrific little friend for him. Nothing makes my heart dance more than when the two of them play chase through the house! Giggles, squeals, tickles and…happiness. Simply beautiful.

As for Dave and I:

·        One of the most important things Dave and I did this past year was retain a second financial firm to help us establish a life plan for our family. We’ve had the same financial planner for more than a decade to help us with our financial investments, but we learned that we really needed to seek counsel from experts who specialize in life planning for families with special needs to lock in a solid financial future for our family. We hired a company called “Income By Design” and had more than half a dozen arduous meetings, many times tearful, to learn the ins and outs of Texas law and regulations for adults with special needs. In our first meeting, we found out that an individual cannot have more than $2,000 in assets at age 18 or they are disqualified from Social Security. At age 9, Jacob already had $3,900 from savings bonds that were gifted to him.  We obviously sold them and re-routed those funds to his trust. Anyway, after learning all we could we had an attorney update our last wills and testaments, draft power of attorney documents, establish a special needs trust fund with the IRS and gave us the step-by-step process for re-routing all inheritance from Jacob as the direct benefactor to his newly established special needs trust fund to secure his future.  Whew! It was a big task.  “Income By Design” has a sign in their conference room that says, “Noah didn’t wait until it started raining to build the Ark.” I’m glad we’ve started building because the rain is coming people!

 

·        Finally, we have an exciting opportunity to have a front row seat for a significant new ASD program in Dallas. This September, UT Southwestern and Children’s Medical Center Dallas will open a Comprehensive Clinical and Research Center in Autism Spectrum Disorders.  This multi-million dollar program will be located at UT Southwestern’s North Campus, and I’m thrilled to have been asked to be on its inaugural steering committee for the Friends of ASD group. The center is dedicated to conducting research and gaining greater understanding of the cognitive and behavioral problems that result from autism and other neurodevelopmental disorders. More to come on the development of this critical program, but I’m blessed that my sweet friend Traci thought to recommend me to be a part of it! I’m sharpening my pencil. I can’t wait to see what progress can be made!

Needless to say, we are moving through 2014 with more anticipation than we’ve ever had. We can finally eat at restaurants, we can finally get a decent night’s sleep, and we will embark on our first trip to Disney World next month! Our sweet handsome baby is making big strides, and with toes on the baseboards basking in the glory of progress, we couldn’t be more thrilled!  I will close with this thought…

When Jacob was born in 2004 Pluto was considered one of nine planets in the Milky Way. What I knew to be truth for the greater portion of my life was that Pluto was the distant-most planet and the farthest member of an exclusive club of nine planets in our solar system.  However, after scientists spent a decade documenting hundreds of planetoid objects, some similar in mass and location to Pluto’s, well… things changed.  In 2006, scientists from around the globe agreed to strip Pluto of its planetary status. That’s a big deal right?! Despite the abolishment, Pluto will always be a part of our planetary status history, but that’s just it…it is history!  My prayer is that Jacob’s autism will be like Pluto one day. Although Pluto’s status is forever woven into the fabric of our history, its relevance has been greatly minimalized. For Jacob, I pray that hundreds of other memories, situations, accomplishments, successes, talents, experiences, hopes and dreams will surface as being as significant in Jacob’s life as autism once was. My hope is that we will one day be able to demote autism from being a defining characteristic of Jacob’s life to a complete afterthought, a distant memory, just one of many threads that make up his unique fabric.  Wouldn’t that be amazing?

I have faith in God’s ability to know this prayer. It’s only by way of His supernatural hand in our daily fight and a faith in His healing power that will make it happen. I have faith. And so, I pray this prayer to our God who offers an abundance of underserved favor. I pray, with great anticipation like my hand reaching for the cloak, that He will release Jacob from autism one day. I boldly ask you to open your hands and hearts RIGHT NOW and include my sweet Jacob in your prayers too.

We love you for walking this journey with us. I do it for my best boy, and I do it in His name.

 

James 1:2-4
Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.

Romans 5:3-5
More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.

Amy

2013 Post: An Update on Jacob

Sweet friends,

I've been eager to provide an update about Jacob for quite some time, and it seems fitting to sit down and do it since April 2 is, in fact, World Autism Awareness Day.  It was exactly one year ago that I published the last entry of a short-series blog that I created to detail our family's extraordinary journey with autism. The outcome of writing the weekly updates exceeded my expectations, and it reminded me of the incredible support we have received since our journey began.  THANK YOU!  

  

This is an excerpt from my last entry (published April 2, 2012):

"I’ve spent the last 6 weeks of this blog describing our situation, members of our family, our friends, and the array of emotions that we have experienced on our journey.  However, at the center of it all is one incredible kid. Jacob is smart, sweet, gentle, funny, and an all-around amazing little boy. He is a boy worth fighting for, a boy worth celebrating, and a boy who deserves an infinite amount of love. He is definitely easy to love! Jacob is not a boy defined by autism, but trapped deep inside it.  We’ve utilized our energy and resources to chip away at the autism that imprisons him, and we will continue to work hard at making progress.  We will also pray that a cure will blow the doors right off, and for the first time, Jacob will no longer be stifled and we will be able to embrace all aspects of our son. Until then…we will charge on.  We’ve definitely come a long way in our journey, but it’s certainly not over.  Please continue to pray for Jacob, our family, and the researchers to pinpoint a cause and a cure for autism."

First, I'm so very grateful to each of you. Thank you for supporting Jacob, for praying for us, and for loving our little family.  Your support means so much.  I am proud to give you this annual update. Since April 2, 2012 until today...April 2, 2013, we've rounded the biggest corner yet and have had the pleasure of watching our son flourish in so many ways! What a year it's been.

A NEW SCHOOL: Jacob had attended a private school since the time he was Kindergarten age.  The school had approximately 20 students and were taught in an intensive environment with a 3:1 (student to teacher) ratio, although many times throughout the school day it was 1:1. Dave and I felt that Jacob's success at that school had plateaued, so we began researching and interviewing new schools. After several meetings, we left disappointed and discouraged.  That was until...our very own public school district continued to surface as a viable option. So, after quite a bit of research, conversations, meetings, etc. we decided to take Jacob out of the private school that he had been attending for 3 years, and enroll him in public school.  It was a leap of faith that we were extremely nervous about, but we were willing to take the chance. After one year, I am blown away at the infrastructure our public school system has to offer.  Jacob's IEP (Individual Education Plan) is aggressive, and is being managed by a team of miracle workers. Every month, Jacob has time with an Occupational Therapist, Speech Therapist, ABA (Applied Behavior Analysis) Therapist, time in the motor lab, time in the IPAD lab and integration with his home room 3rd grade class whenever possible. They've not only accommodated Jacob and his unique set of needs, but have established an environment for which he can thrive. The school shares, in partnership with us, the philosophy of maximizing Jacob's potential each and every day. Incredible!

A NEW DOCTOR: Since receiving Jacob's autism diagnosis in December 2007, we had seen the same pediatric psychiatrist thinking/hoping that she was the very best.  But just as we re-assessed Jake's private school, we had an inkling that it was time to break ties and seek a fresh set of eyes and brain power. Our new doctor isn't a psychiatrist, but a well-respected pediatric neurologist.  He worked with us to establish a plan of attack on the various issues plaguing Jacob each day. Among them were Jacob's limited diet, restrictive appetite, wild sleeping patterns, episodic outbursts, etc.  The doctor helped regulate those issues which has been a great change for Jacob, and for us too!

AN IN-HOME THERAPIST: We talked for many months about securing additional ABA services for Jacob.  We went back to the clinic that has helped Jacob since he was 3 years old to connect us with a compatible in-home therapist.  So, right after the new year began, sweet Olivia, a grad student at UNT who is simultaneously getting her Masters in Behavior Analysis and an MBA (overachiever!), started coming to our house 3 days a week for two-hour sessions to work with Jacob. She has become a big part of our effort to defeat Jacob's autism. She has garnered Jacob's trust and respect, and does a great job of including Audrey in the programming.

OTHER NOTABLE HIGHLIGHTS:

• For the first time this winter, Jacob wore a coat, hat and gloves!  He hasn't been able to tolerate a coat since he was a toddler.
• Last year, I wrote that we were still changing diapers, but no longer my friends!  Jacob learned to go #2 on the potty....all...by...himself!  Happy. Dance.
• Jacob's outbursts of screaming has subsided.  He has mini outbursts, but he's much more calm. The doctor's recommendation to switch from Methylin to Vyvanse was a good one. Additionally, the doctor also recommended that Jacob's Intuniv tablet be administered at nighttime to help with the restless nights. This leads me to the next highlight...
• In last year's blog, I explained that every two weeks or so, Jacob would wake up in the middle of the night and stay awake.  We haven't had this problem in months! Jacob has even requested that he sleep alone in his room (instead of with me).
• Although the process of eating, along with having a very limited diet, are still one of the biggest challenges, Jacob has made big improvements in this area.  We've even had a few family meals together this year and have gone to a few restaurants a handful of times. Hooray! 
• Jacob and Audrey began to interact!  They chase each other, have learned how to share toys/electronics, and do really well together.  There's just not enough time to talk about how special Audrey is, and what an incredible sister she is for Jacob.
• Jacob's also beginning to answer questions and requesting things that he wants.
• He's also telling us when he doesn't feel well, or is in pain. He'll say, "tummy hurts." This is a comforting accomplishment from a mommy's perspective!
• One of our favorite surprises was when we received Jacob's school picture. For the first time, he looked happy, excited, engaged, and alert. And....there he was. My sweet boy. Smiling for the world to see. Ahhh, what a special gift for this sometimes weary mommy warrior.  
    
  
  
  
  
  
  
  
  It's in that sweet smile that new hope arises and brings with it renewed energy to continue fighting. As we forge ahead through 2013, we are setting new goals and becoming emotionally ready to discuss Jacob as an adult with special needs working and living independently. There will be a time, hopefully a long long time from now, when Dave and I will not be physically capable of supporting Jacob. The assurance that he has a meaningful life is so important. With that said, a few months ago Dave and I retained a life-planning consulting firm to help us establish a support care plan. Along with a variety of programs available through the State of Texas, there are rules and laws to understand, budget planning to finalize, and tough conversations to have (e.g. where will he live? what will Audrey's role be so that her life is minimally-impacted? etc.) Obviously, this preparation is for implementation many years down the road, but time is going by so fast. This baby of mine will be 9 years old next month. I can't believe it! 
  
  
  Although many things have changed, and accomplishments have been witnessed, some things remain the same. I continue to have a grateful heart and a peaceful soul. God's grace has awarded Jacob these victories. Prayers are answered and we smile in anticipation for what tomorrow will bring, and I look forward to it.
  
  1 Peter 5:10 - And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.
  
  
  
  
  
  
   
  
  

Post #7: Final Thoughts for Jacob

World Autism Awareness Day – “Light it Up Blue”

Today, April 2, 2012, marks the fifth annual World Autism Awareness Day[1]. Every year, autism organizations around the world celebrate by doing unique fundraisers and special events to raise awareness about autism.  It’s no coincidence that the day of my final post was planned for this day – the most significant day for autism awareness.  Tonight, I’m proud that many iconic landmarks around the globe will “Light it Up Blue” to show their support of a cause so near and dear to my heart and to millions of others too.  These are just a few of the structures participating in “Light it Up Blue” tonight (for a comprehensive photo gallery, please visit www.LightItUpBlue.org). 

Christ the Redeemer - Rio de Janeiro, Brazil

Sydney Opera House - Sydney, Australia

Empire State Building - New York, NY

My Jacob Baby

“To the world you may be but one, but to one you might be the world.” Unknown. 

I’ve spent the last 6 weeks of this blog describing our situation, members of our family, our friends, and the array of emotions that we have experienced on our journey.  However, at the center of it all is one incredible kid. Jacob is smart, sweet, gentle, funny, and an all-around amazing little boy. He is a boy worth fighting for, a boy worth celebrating, and a boy who deserves an infinite amount of love. He is definitely easy to love! Jacob is not a boy defined by autism, but trapped deep inside it.  We’ve utilized our energy and resources to chip away at the autism that imprisons him, and we will continue to work hard at making progress.  We will also pray that a cure will blow the doors right off, and for the first time, Jacob will no longer be stifled and we will be able to embrace all aspects of our son. Until then…we will charge on.  We’ve definitely come a long way in our journey, but it’s certainly not over.  Please continue to pray for Jacob, our family, and the researchers to pinpoint a cause and a cure for autism.

I’ve written a letter to Jacob, and wanted to share it with you today.  Every parent, grandparent, aunt, uncle, cousin, friend and neighbor who loves a child unconditionally will surely relate.

A Letter to My Son

Dear Jacob baby,

Mommy loves you so much!  I am typing these words with a smile on my face because you bring me such tremendous joy, and I am so very proud of you!

I write this letter to you knowing that you don’t know what these words mean. I pray that one day you will, and I type it in faith for when that glorious time comes. Until then, I can assure you that you don’t need to comprehend the words themselves; you only need to feel the depth and breadth of Mommy’s unconditional love for you. I vow to work hard each and every day to ensure that you are safe, happy, healthy, supported, educated, loved, comforted and cared for to achieve your greatest potential.

I know you’ve seen Mommy write in her journal all of these years.  So, before I started writing this blog, I skimmed through my journals to see what I may have said along the way, and I came across this prayer. 

Sunday, November 2, 2008

Dear God,

Please be with Jacob.  Please watch over him.  Please help us find a doctor or doctors that will provide answers to the many many questions we have about what’s happening in his little body.  Please continue to bless him with happiness.  Please continue to give Dave and I the strength to navigate this dark road.  It is my faith in you that gets me through.  I love you and thank you for the many blessings you have given us.  Amen.

Mommy can tell you that there are many others praying a similar prayer for you, and even though I prayed for these things several years ago, the request has not changed.  You are so very loved, Jacob.

And like I said before, the words don’t make sense now, but the actions, and the feelings and the happiness is how you’ll know in your heart that Mommy loves you.  Here are just a few examples:

·        When I put vanilla icing on graham crackers because it’s your favorite snack. That is me loving you.

·        Every single morning on our way to school when I slip my arm into the backseat and take hold of your soft little hand and hold it tight.  That’s me loving you. 

·        When I drop you off at school and insist that I kiss you before you bounce up the stairs and disappear for the day, that’s it too. 

·        When we burst with laughter after I tickle you like crazy after chasing you through the house.  That’s me loving you.

·        As you stand at the center of the bridge down by the park and I hand you several sticks that I’ve gathered along the way knowing that you want to throw them over the edge and watch the water splash….that’s me loving you.

·        When I stand on the side of the tub and yell “Waterfall!!” before dumping a cup full of water on your giggly self, that’s me loving you.

·        At nighttime when I lay next to Audrey and we hold hands with our eyes shut praying for you.  That’s it again.

·        And, believe it or not when I enroll you into a school, sign you up for therapy, or take you to see a new doctor (again), that’s me loving you.  It’s actually me loving the future I know you deserve to have.

You will know it in the strength of my grip when I sense you are confused, scared or overwhelmed.  You will know it in the tone of my concern.  You will see it dance across my face when we play.  You will sense it in my actions. And again, and again, and again, all day long and into eternity it will never ever stop.

I honestly don’t know if you’ll ever have freedom from autism here on Earth, but I know that you will have complete freedom in Heaven. Thank you for contributing, to me, the greatest gift any human being can provide by leading me back into the arms of Jesus.  I can’t wait to walk hand in hand with you and just….talk. 

I am grateful for you. I am proud of you.  I love you so much my sweet Jacob.

Mommy

1 Thessalonians 5:16-18

Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

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[1] Source: Autism Speaks - Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders, caused by a combination of genes and environmental influences.  These disorders are characterized, in varying degrees, by social and behavioral challenges, as well as repetitive behaviors. An estimated 1 in 88 children in the U.S. is on the autism spectrum – a 1000 percent increase in the past 40 years that is only partly explained by improved diagnosis.

Post #6: The Future: Fears, Hope, and Faith

I hope the first five posts have adequately told the story of our past and how we managed to make it through most of the autism wilderness.  I hope it’s been a little enlightening and not a total waste of time?!  For now…I think people are interested in knowing about our current situation, as well as worries and fears, our hope and our faith. So, here we go...


No Time Like the Present

It’s a typical Monday night for us.  I’m literally sitting next to Audrey and across from Jacob at the kitchen table. It’s dinnertime. Dave has rigged two chairs against the end of the table on the far wall, and wedged himself between our wine cabinet and the other end trapping Jacob along the side so that he’ll eat his dinner. By the way, the wine cabinet is merely furniture. It serves no purpose in storing wine.  A bottle of wine in this house doesn’t stand a chance of ever being on display.

Anyway, Jacob is having chicken nuggets tonight. He’s frustrated right now. He stands over his plate and yells out, “What’s wrong Buddy?!” followed by...“What’s the matter with ya?!”  He’s unable to communicate that he’s frustrated, or the specific reason why, so he repeats the verbal responses that Dave and I most often say when we see that he’s upset. This type of repetitive expression is called echolalia, and it’s very common in children with autism. Maybe he isn’t hungry tonight?  Maybe his tummy hurts?  Maybe he’s sick of nuggets?  Who knows what’s bugging him?  Despite the outbursts, Dave does a great job of getting Jacob to eat.  It’s a small victory indeed. In all honesty, I’m grateful that Dave is in charge of Jacob’s dinner tonight.  I’m still tired from the 3:45 am wake-up/stay-up from a couple of nights ago.  By the way, if there’s ever a need to write a thesis on Lady and the Tramp, Monsters, Inc., Cars, Bug’s Life, or Finding Nemo, I’m your girl! I’ve seen those movies hundreds (I’m serious), hundreds of times in the wee hours of the morning.

I received a call from our local school district today.  The results from 45 days of detailed evaluations conducted by the district’s autism team are now ready to be presented to us.  We’ll find out next Thursday what services and support the public school system is able to provide.  We’ve had Jacob in a private school for the last 3 years, but after some research, we felt as though the public school system has finally advanced to match, or in some cases exceed, the services he’s currently receiving at private school.  I’m eager to hear what they will report.  Please say an extra prayer that we find the right “school home” for our little man.

We started a slightly different dose of Jacob’s ADHD medicine this morning. Also, I finalized the party plans to celebrate Jacob’s 8^th birthday. And unbeknownst to me, as I sat in our guest bedroom locked away writing this post, Jacob went to the backyard, picked up some sidewalk chalk and spelled the words “cake” and “dog” on the patio. He drew a picture of a cake with crazy candles too! What an awesome exclamation mark on our somewhat average day!  In my heart I know that tomorrow will probably be similar.  Still…I can’t help but worry. 


Worries and Fears

Do you want to know what I worry about?  I worry that my son and I will never have a deep or meaningful conversation.  I worry that he’ll get lost in a large crowd and I won’t ever see him again.  I worry that the expenses of autism will continue to snowball.  I worry that 1 in 110 kids diagnosed with autism will soon become 1 in 109, then 1 in 108, etc. etc.  I worry that Jacob might regress when he goes through puberty. I worry that researchers won’t find a cure for autism.  I worry that 80% of marriages with autistic children end in divorce.  I worry that Jacob will be bullied.  I take that back.  I worry about WHEN and HOW Jacob will be bullied. I worry that Jacob may become depressed since that’s what his doctor forecasts will happen down the road. I worry that I may not prepare Audrey enough.  I worry about dying – not because I’m afraid, but because I can’t fathom Jacob and I living on this Earth without one another.   I worry…and I worry…and I worry.  I’m embarrassed that I worry.  If my faith was what I know it SHOULD be, I wouldn’t worry at all.  I would know that God has us cradled in his arms, that He will keep us safe, and that greater things are yet to come. 

Luke 12: 22-26

Jesus said, “…do not worry about your life, what you will eat; or about your body, what you will wear. For life is more than food, and the body more than clothes. Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! Who of you by worrying can add a single hour to your life? Since you cannot do this very little thing, why do you worry about the rest?

Although we have systematically endured all the scientifically-documented stages of grief in our journey, I am getting really tired of worrying. Having been on this journey, my world has undeniably expanded.  Part of that includes the ability to start focusing on the good once more.  I look in the mirror and see hopes, dreams, and most importantly, my faith. Faith which has been restored once again.

Isaiah 30:18

Yet the LORD longs to be gracious to you; therefore he will rise up to show you compassion. For the LORD is a God of justice. Blessed are all who wait for him!

Hope and Faith

I have faith that the future will be brighter for Jacob...for all of us actually. And in an attempt to break free from my exhaustive illustrations about the wilderness (who's tired of it yet?!)…I want to give you concrete stories to demonstrate my hope and faith.  This is my attempt in making it a little more tangible.

Do you want to know something?  We banked the blood from Audrey’s umbilical cord.  Listen, I’m no idiot.  I know that that every pregnant mommy gets the cord blood banking brochure to read, and many slough it off as a marketing ploy.  And it is!  It’s a marketing ploy to an extent; however, in our case specifically, we had a child with a known neurological disorder, and an unborn child who we hoped would NOT have the same issues. So….what if?  What IF the stem cells from Audrey’s umbilical cord could help Jacob someday?  Sibling matches are 75%, and an astonishing amount of progress is being made with (non-controversial/non-embryonic) stem cell research. What if a ground-breaking discovery should occur and we hadn’t saved the pure untainted blood from Audrey’s cord?  What if?  I laid there pregnant with Audrey and couldn’t bear the thought. We had to do it.  We banked that cord blood.  I pray over those stem cells. I pray that researchers will find something one day. I pray, and pray, and pray for a cure.

Do you want to know something else? This is random, but I love Kroger Grocery Stores.  I love them for not just being the “right store for the right price.”  I love them because they have made it part of their company culture to employ people of different abilities.  Last month, the unemployment rate in the US was 8.3%.  The unemployment rate of people with disabilities remains over 70%.  Wrap your head around that one for a second, and journey with me as we think about Jacob 15 years from now.

What does his life look like WITHOUT companies like Kroger?  What will Jacob do with his life every day as an adult with different abilities?  How will he garner acceptance?  How will he feel good about himself?  How will he know what he can do to contribute?  Please make no mistake about what I’m saying. Those things are NOT dreams. Those things are NECESSITIES if you are a human being.  Kroger treats people with compassion.  THAT is why I love Kroger. It may sound crazy, but I almost get giddy as I watch my groceries go down the belt into the arms of a bagger/sacker that is working as hard as he/she is able. I wait until the perfect moment to say, “Hi there!  How are you? Thank you so much for helping me with all of that!” I have no idea if it made their day or not, but I know one thing for sure. My almost 4 year-old daughter won’t embody compassion unless she witnesses it.  She won’t. Period. Life is so beautiful!  Thank you, Kroger!  The program you have in place right now gives me so much hope for tomorrow.  It really, really does.   For more information about the Kroger’s partnership with The Tommy Nobis Center, please visit:  http://www.fmi.org/docs/humanresources/tommy_nobis_center_program_summary.pdf

Philippians 4:6-7

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

The dark moments, the scariness, and the despair led me to come out a better person. I have a more grateful heart. God took his seat in the throne of my heart and chipped away a lot of hurt and selfishness.  He had to break me down in order to build me up greater than before.  Now, I see WHY I was under construction.  I will never be the person I was before.  My love for Jesus and our Heavenly Father is brilliant.  My hope is that this light is evident in all that I do moving forward from here on out.  I will be forever grateful for my blessings which are far too numerous to count. 

Final Thoughts

Next week will be the final post in this series, but it will be very different from these last 6 posts.  I hope you will come back next Monday to see it!  That said, I will close with a few final thoughts.

If you’re anything like me, you’re probably a little interested in knowing what the “application” in all of this might be.  I have an incessant need to understand what I can/should do with information moving forward, so thank you for allowing me to be bold enough to list some ideas:

1)      Watch the HBO movie, Temple Grandin, starring Claire Danes.  She won an Emmy and Golden Globe for best actress for her performance. The performance itself has nothing on the profound life of Temple, a girl with high-functioning autism who overcame obstacles to earn a Ph.D. and to become the voice of hope for everyone with autism. It’s a truly inspiring movie.  Please watch it!

2)      Educate our children.  Every child will interact with a peer with autism at some point.  There are several great books out there, including:

                                                    i.     Autism Acceptance Book

                                                   ii.     Joey and Sam

                                                  iii.     Understanding Sam

3)      Offer respite to a family living with autism.  It will mean more to them than you will ever know.

4)     If you don’t have a church home, I have included the link to my church.  You can download one of the podcasts, or watch the services live on-line. www.valleycreek.org

To everyone out there, thank you for reading.  I hope the goals of this blog series were achieved in some form or fashion, and I’ve been incredibly moved by the feedback.  It has been a prolific exercise for me, and needless to say, it was incredibly therapeutic too. Every family certainly has a unique story, and I am grateful that you allowed me to share a little bit of ours. 

Next Monday will be the final post!

Much love,

Amy

Photo Gallery

Looking back at it, the wilderness is actually a beautiful sight.


 

Watch this movie.  Inspirational!

Jacob wrote "dog" and "CAKE" with a picture of a cake :)