Pre-Travel Jitters - Cincinnati Children's Hospital

Tomorrow we will awaken very early to be on a 7:15 a.m. flight to Cincinnati, Ohio, via Dallas.  It will be Melody, Hannah and I.  Taking Hannah is such a blessing as having her help during the travel will be invaluable.

Over the past week I've experienced many emotions.  Excitement, fear, worry, confidence, misgivings.  I guess it is pretty normal as it is a huge deal to take 12 days and travel about 2000 miles to take your child to a Colorectal Center weeklong program.  Acting on faith and a parental belief that this will be a huge positive step for Melody and her future independence.

We have the testamonials of other parents spurring us on, "this is the best thing we've ever done for our child."  But still, sight unseen, it is a pretty radical step.  We know of no other programs like this where we live or anywhere else in the U.S., but that is mind-boggling, too, as we are accustomed to believing that comprehensive and excellent medical care is available anywhere in the U.S.

We are incredibly grateful that though this program is 2000 miles from home, it just "happens" to be within an hour of my cousin and her family and my Aunt and Uncle.  As well as near enough for my brother to drive down from Michigan.  Between them, we have a car to use and a place to stay.  We are so thankful for family and God's provision through them.

We will arrive Tuesday evening and Melody's first medical test is first thing in the morning on Wed. Our adventure with driving in Cincinnati and vicinity and navigating an enormous hospital campus will begin then. By the end of our trip it should be very familiar.

So, tomorrow we'll step on the plane and trust God's leading in this huge endeavor.  We will trust that even in February snow storms, cold and likely travel delays will not derail getting to and traveling around Cincinnati as needed.

Isaiah 41:13

For I am the Lord your God
    who takes hold of your right hand
and says to you, Do not fear;
    I will help you.

Five Years!

Melody just turned 5!  It is hard to believe it’s been 5 years.  5 years seems like an appropriate age to look back and give thanks.  I am often asked, “how is Melody doing?”  Though that is a loaded question, the answer is, “She’ll always have spina bifida, but for having SB she is doing great.” 

I’ll never forget 5 ½ years ago when we first heard Melody’s diagnosis.  We had very little idea what Spina Bifida (SB) was, though I knew it involved the spine.  All the dire predictions from the doctors and the suggestion that we consider ending her life, made the future look so scary.

And then Melody arrived, and her SB was real and we could see it with our eyes, but the future doesn’t look so scary when you’re holding this:

  

Melody Annalise – 5 days old

As expected, she would have her back closure the day after she was born.  And then, a few days later, our hopes of being able to leave without a shunt were shattered, and a shunt was placed. 

But, what the doctors didn't expect was that Melody would leave the NICU at 9 days old and NEVER return to the hospital for the next 5 years.  Other than an outpatient procedure, Melody has not needed any surgeries and has NEVER even needed pain medicine her whole life. 

To put into perspective, I have heard of children with SB having up to 30 surgeries in 5 years of life.  Many live with chronic pain.  Surgeries on feet, legs, hips, and shunt revisions are far too common. Though we don't know what the future holds, for now we rejoice that, so far, Melody has avoided these.

We spent the better part of a year fussing with hip bracing in an attempt to help Melody’s hips develop properly. 

We did the “pavlik” harness:

 Jan 2010 – 4 months old

And the “rhino cruiser”:

May 2010 – 9 months old

We’re not sure whether they worked or not, but it was worth a try.  We learning Melody’s hips may always have a mind of their own, do we want to be in or out today?  But, that her hips aren’t going to keep her from doing what she needs to do.  And we are thankful that some things just don't really seem to matter much after awhile.

We are part of a special group of parents who hear the word “braces” and don’t automatically think teeth.  We’ve learned all kinds of new acronyms like AFO’s. These were Melody's first Ankle Foot Orthotics. 

Oct. 2010

And a couple years later we could show how much she had grown just by looking at her braces. 

Nov. 2012

We have spent more hours than we can count working on physical strength, therapy and exercise to figure out what Melody can and can't do and what we thought she needed.  We researched and read and asked questions.  We fought the doctor to get RGO braces we believed would help Melody walk and we silently celebrated as his mouth dropped open when she walked in them 6 months later. We are so thankful for amazing physical therapist and orthotist who walk with us on this bracing journey.

Sept. 2011 – Melody’s first pair of Reciprocating Gait Orthotics

We spent hours with Melody learning to use her new braces, though she hated them and screamed for the first two weeks.  They still aren’t her favorite (too confining), but they allow her to stand and stand up straight, walk, develop bone density, stretch tight ligaments and train her feet in the right position and many other things that walking helps.  We continue to believe that these have been the right choice for Melody.

Of course, along with fancy braces, come lots of other fun equipment.  Like. ..

Melody’s first walker.  We never knew about pull behind you walkers, but found it to be the perfect solution for Melody’s needs. We rejoice that all this equipment has been provided for Melody.  What a blessing.

Nov. 2011

Sometimes life requires a new understanding of terms and though we say “Melody can walk,” we know walking carries different meaning for her. We are okay with that.  

Though we are happy that Melody can walk at all, we accepted that the bracing and equipment required just aren’t practical or speedy enough in all situations, so before her third birthday Melody got her first wheelchair. 

July 2012 – Idaho – age 2 ¾

Her wheelchair has given her independence and speed and she is getting more adept with it every day.  At this point she never uses it at home, but it has been so helpful in public places and especially now that she has begun transitional kindergarten. 

Over the past 3 years Melody has walked further and more and with more style as she has grown older. 

Dec. 2012

Along with growing older means growing bigger which means new braces.  Casting for these babies is quite a process. 

July 2013 – Melody’s second set of RGO’s.

We’ve joined on-line groups with help us keep up with all the wonderful products out there to help Melody access and enjoy the world as much as possible. Like her first handcycle!  How thankful we are for family that all pitch in and make birthday presents like this possible.

 Sept 2013

Over the last 5 years we learned about so many things we didn’t even know existed.  We’ve navigated medical mazes and fought hard for milestones.  Our eyes have been opened in so many ways.  We can see many differences in our lives today.  But, much of the time life just looks like this.  Our beautiful daughter loving on any animals she can find, playing contentedly and just enjoying life. How thankful we are for Melody's life.

  

A beuatilA beau

A beu

Ou

We’ve learned doctors can look at an ultrasound and tell you all kinds of scary medical stuff.  But, they'll never be able to tell you about the person that little baby will become.  Until you look into the eyes of your precious child and see how unique and amazing they are.  Until you realize all that you would have missed in the colors of life if you God hadn’t given you this incredible child.  Until you watch their life unfold before your eyes, you'll never really know the whole story.  And the whole story is beautiful.  We can't wait so see the rest of it.  

Whatever Happened to Compassion?

Whatever Happened to Compassion?

Compassion. Defined as “sympathetic consciousness of others' distress together with a desire to alleviate it” in the Merriam-Webster Dictionary.  What happened to it?  Often I feel like compassion is missing from our society. 

This month Disneyland changed their disabled guest access policies due to rampant abuse of their Guest Assistance Cards (GAC).  If you’ve been there recently, you’ve probably observed abuse of these passes.  The abuse had reached epic proportions prompting Disney to change its policies. It is a real blow for people with disabilities, and the really dishearting part is that Disney was ever given a reason to change their policies.

What happened to cause so many people to believe it was okay for them to cheat the system?  That they, too, were entitled to a GAC?  I believe one reason is an overall lack of compassion and a presence of selfishness.  Instead of other guests seeing a person using a GAC and being grateful that Disney was offering assistance to someone in need, other guests felt jealous. 

Other guests watched those with GAC passes “go to the front of the line” and “not have to wait” and felt this was unfair. And of course, life MUST be fair.  I only have to have compassion and kindness when life is fair.  If you missed the memo, life isn’t fair.  Ever.  When did our society start seeing disabled access as a “privilege” to be gained?  When did being first become more important than compassion? 

Let’s assume for a minute that the GAC really DO give special treatment to people with disabilities (which for the most part is completely untrue, but that is another entire topic), would that really be so bad?  Would it really be so awful for there to be ONE place on earth where having a disability gave you a bit of an edge?  Would it be so hard to celebrate a company that chose to have compassion and mercy toward those who struggle every day? 

If we really had a sense of compassion as a society, we would see another struggling and we would happily allow them to go first or anything else that would alleviate their distress.  However, I think our society lacks a consciousness of others’ distresses as well as a lack of compassion when they are made aware of them.  Get over it seems to be the prevailing attitude. 

When did we become so uncompassionate and selfish as a society?  What are we going to do about it? 

A New Perspective on that Disneyland Magic

Disneyland.  The theme park of all theme parks.  Beloved by many.  I’ve always loved Disneyland.  There is just something about it.  But, when Melody was born, Disneyland became even more appreciated.  I gained a completely new perspective into what they call their "Magic."

I’ve been pondering a lot since the hoopla about Disneyland changing its procedures this month for people with disabilities.  I’ve stayed out of the fray for many reasons.  However, I had to share a bit from my perspective, and mine alone.  I can’t speak for someone who is disabled, or for those who have “unseen” disabilities.  I can only speak as the mother of a child with spina bifida who has mobility issues and usually uses a wheelchair, especially at a place like Disneyland. 

We have not been to Disneyland in awhile, and when we were we used the GAC (Guest Assistance Card) which allowed Melody's stroller to be viewed as a wheelchair.  This was such a blessing as it allowed us to take it INTO the lines with us.  (not to the front of every line as many mistakenly believe) So, admittedly, my perspective is a couple years old.

So, here are some of my thoughts.  But, as this is such a complicated issues with a myriad of implications, this blog will soon be followed by the “Whatever Happened to Compassion,” “Life is Not Fair” and the “Prizes and Privileges?”  blogs. 

Things that made Disneyland “Magic” for our family and our child with disabilities:

-          Complete access to their park.  There are very few things you cannot do at Disneyland regardless of abilities. 

-          It is the ONLY place I can say this about and I’ve been to many theme parks, small amusement parks, fairs, etc.  Disneyland is the best.  The others are ADA compliant, I am sure.  But, you can comply with ADA regulations and not really be friendly to people with disabilities.

-          Their “cast” is well-educated about all their accommodations and how to meet needs.  I’ve never seen the “deer in the headlight” look when I approach or the ignorance when I ask questions that I’ve encountered almost everywhere else. 

-          Their facilities provide everything I’ve ever needed to care for my child’s medical needs.  They are clean and staffed with friendly cast members.

-          They not only accommodate the person with a disability, but they allow the whole FAMILY to be together.  This is a precious gift.  You have NO idea. 

-          Provides a day where you get to feel kind of “normal.”  Where you don’t feel like you are always trying to figure out a way or explain things to people.  Disney has gone ahead and figured it out and made a way before you even get there.  You don’t know how welcome this is until you’ve stayed up nights before attending a new location and worrying about how it will work for your child.

-          In my opinion, Disney doesn’t HAVE to go out of their way to accommodate. Yes, they have to be ADA compliant, but that is it.  But, they do it anyway!  What a blessing to experience a company that goes out of their way to provide for people with disabilities. 

-          It is a breath of fresh air to be at a place that doesn’t just have a “just deal with it” mentality.

-          Let’s assume for a minute that the GAC (guest assistance card) is a privilege and a cut to the front of the line pass.  (which neither are true, but that is a whole essay in itself) Would it be wrong for there to be ONE PLACE ON EARTH where having a disability actually tipped the scales in your favor for a bit? 

And those are some reasons why I’m sad Disney is changing their policies.  I am hopeful that the new procedures will be equally friendly, but I’m concerned that they will not curb the systemic abuses.  And until that happens, I know who will get the short end of the stick in this equation.  It will remain to be seen the next time we return whether that "magic" is there anymore. 

Dear Mom, On Your First Birthday in Heaven

Mom's Happy Birthday,WHEE!

Mom's birthday at her last Fields family reunion 2011
I love it because it shows Mom's true zest for life!
She loved having family reunion on her birthday. 



7/31/2013

Dear Mom,

Today you will be celebrating your first birthday in heaven.  I wonder if birthdays are celebrated there, but if they are, I bet it will be one amazing party and huge cake. 

It was almost one year ago you made the journey from here to heaven.  You had so many questions in your final days about what that would be like.  I wish I could talk to you and hear you describe what it was like when those “Pearly Gates” opened for you.  But, I imagine.  I imagine the joy and celebration when you first saw your precious Jesus face to face.  I imagine the reunion you had with your parents after all these years.  And I imagine you sitting and kneeling and rising without pain.  When I think about how wonderful it must be for you, I can’t justify wishing you back here.   

But, I do.  I miss you so much.  I have a phone message from you saved on my phone just so I can hear your voice.  I cry often when I think of all that we’re missing without you here.  Sometimes it is hard to breathe because I miss you so much. 

It is hard to believe it has already been a year.  A part of me wants to slow time so there are fewer days and memories without you here.  Then, another part of me wants time to move quickly until the day we are reunited again. 

Speaking of reunions, tomorrow we leave to drive to Oregon for the Fields family reunion.  Dad, Tim, and our family will all be there.  It was one of your favorite things and I know it is going to be so hard not having you there.  But, I know you’d want us to be there passing on our heritage of faith to the next generation.  And being with family is always a blessing, but this year is going to be a hard one for me. 

One of your greatest concerns when you were diagnosed with cancer was whether we would be okay.  Even at the very end of your life I remember you asking how we would get along after you were gone.  You were always worried about us. 

I just have to say, Mom, we are doing okay.  God never promised that we wouldn’t walk through the “valley of the shadow of death,” but He did promise that He would be with us.  And He has.  He has been our strength and the one we lean on.  We have each other, too. 

You’d be so proud of Dad.  Despite the fact that he missed you immensely, He has stayed busy and involved in life and found so many ways to serve the Lord.  In fact, I have a hard time catching him at home sometimes and he is so busy he says, “call me on my cell phone.”  That makes me smile.  He has visited all of us kids, helped with AWANA, attended Bible study, built cabins at Shiloh Bible camp, worked in camp kitchens twice, fenced the property and attended numerous community events.  Of course, the body of Christ at Cambridge Bible Church take good care of him and have him over often.  Oh, and he is going through a lot of your stuff, too, though I suspect that might not make you as happy.  As you knew he would be, he is such a great example of faithfulness, peace and trust despite the circumstances of life. 

Your grandchildren are one of the things that make me miss you most.  They miss out on so much by not having you here.  Oh, but you’d be so proud of them and be bragging and showing all their pictures and videos to as many as you could. 

David is now 15 and just finished his first year of high school.  He did very well academically, but we are especially proud of the decisions he has made and the maturity he has shown.  He is a pretty awesome young man. 

Elizabeth is about to turn 13.   It has been a hard year for her and I as I grieve the loss of my mother and she fights for independence from hers.  But, we are getting through it and it has been a blessing to see all the growth in her this year.  She continues to be amazing with Melody and making meals in our home.  She is a top student, too.   She had a couple music solos at school and I know you would have loved to hear her sing.  She just finished a musical theater production and loved it so much she wants to do more. 

You never got to hear Hannah play the violin, which she has taken by storm and excelled at this year.  I think of your choice of a violin solo for your memorial service and I know you would have loved to hear her play.  Hannah finished 5^th grade this year and continues to excel as a student and she is just like you in her knowledge of trivia, facts and Bible knowledge. 

Joel can’t wait to go to Idaho again.  He loves your house and all the toys you always had for the kids.  It was such a blessing to not have to worry about our kids at your house and know they would have a lot to do.  At 7 he continues to be a bundle of energy and he has taken up golf this year.  I would love to take you to a lesson with me and we could laugh together at his antics.  It is pretty comical.  He was baptized this past year and I only hope you could watch from heaven as I know that would have been such a special day for you.  Thankfully, Dad/Grandpa got to be here for the occasion. 

Melody still thinks you are “sleeping.”  According to her you are not in heaven, but at home sleeping.  Melody makes me miss you the most.  The fact that she will never really remember you breaks my heart.  So, we try and tell her about you.  But, also, with a disability life is not easy.  You need all the people you can in your corner.  I wanted you to be here longer to be in her corner because you were a powerhouse, the kind of person she needs in her corner.  But, also because as I struggle with being a Mom and hurting for my child, I wish I had my Mom to support me. 

I can’t really tell you all that is going on in Tim and Steve’s lives, but I know that they are doing well.  Tim keeps busy with his business and his church involvements.  We look forward to seeing him in Oregon.  Steve’s family got to go to Germany this summer and Georgia  and Steve climbed a 14,000 ft. mountain for her 40^th birthday.  Of course the kids are as cute as ever and would make you so proud.  We’ve enjoyed their pictures and video this year and are making plans for a Coats family reunion next summer. 

Most of all, Mom, I just want to say that though you aren’t here with us anymore, your influence and all you taught us lives on.  There are so many reminders in our home and lives of you and all you taught us.  I am so thankful that you were my mother.  I will be forever blessed by that fact, even in your absence.

Until we meet again in Glory,

Your loving daughter, Sara

 

Keep on Dancing

 

Melody has been working hard for this day. 

 

 

Melody walked and danced around the house for over 2 hours a couple days ago!  It was her first time of going solo.  She's been practicing for awhile, but has been reluctant to walk without one of us holding her.  No more.  She's off to the races.

 

I can't even tell you how happy this makes me!  Independence is a beautiful thing.

Living Simply

This week I took several walks with Melody.  Slow walks.  REALLY slow walks.  We barely made it from the house. But, that is her speed in her braces and equipment.  I know she’ll get faster, but she’ll always move slowly.  We saw every car that went by, every bird, every flower, and every plant.  We listened to the noise our feet made on the sidewalk, rocks and metal drain covers.  We talked and laughed and didn’t accomplish a thing on my to-do list.  How often do I live this simply?  Savor each little moment?  Not often enough.

Yesterday I took a few kids to the park and while we were playing tennis, we noticed a baseball game going on.  It soon brought tears to my eyes when I saw players in wheelchairs and began to notice other players with special needs.  Each one had a helper with them.  Every play was slower, every accomplishment was celebrated, and I never saw anyone called out.  It was slower, simpler.  I never heard or saw a parent screaming at their kid.  I saw a TON of encouragement.  The umpires were cheered and encouraged as they encouraged the players.

Simplicity seems to be a buzz word lately.  We all wonder how we could simplify our lives.  Yet, what are the things that make us slow down?  Savor more.  Rush less?  Often it is when we are FORCED to move slower and savor more.  When a tragedy causes us to consider life more sacredly.

I’m convinced that God made special people with special gifts for just this reason.  To slow us down and help us see life from a different perspective.  Anyone who knows such a special person will tell you how that person has influenced their life and allowed them to see things from a different perspective.

This is one of the many reasons the astronomically high abortion rates of children with birth “defects” horrifies me.  What we have labeled a defect is the exact thing we spend our lives searching for.  We wonder why we can’t live simply, but we have devalued those that do.  Those that can help us learn to enjoy living more slowly, simply. 

Perhaps the ones who are living, REALLY LIVING, are the ones our society has said have lives that aren’t worth living. 

Maybe those who live simply aren't so simple after all.  Maybe the reason God made them isn't so simple after all.  It might just be one of the most complex reasons of all.