June 18, 2015

Preparation and Some Lessons Along the Way

I constantly stand in awe of the ways God works to bring seemingly unrelated events of our past, present and future together for His purpose and great good.  This undeniable truth of how everything is woven together ought to alone be enough to dispel the myth of evolution and prove the existence of an all knowing, all powerful creator.  But let us not digress.  This is truly another topic for another day.  As important as such an argument is what I really want to zero in on is how God prepares us, uses us and ministers to and through us.  Recently we have been seeing this happen in a very mighty way.  In actuality this has been happening over the last two years and we have just recently come to see how events since Addison's birth were carefully planned and allowed in order to give understanding to others, gain understanding ourselves and to prepare us to minister.

Since Addison's birth he has suffered from severe dysphagia.  What's dysphagia????  I know.  I know.  I have lost many of you already.
dys·pha·gia
ˌdisˈfāj(ē)ə/
noun
MEDICINE
  1. difficulty or discomfort in swallowing, as a symptom of disease.
    "progressive dysphagia"
Dysphagia can range from mild, perhaps requiring an individual to take a drink while eating, to severe, in which an individual can not consume food at all and must be fed through a tube surgically inserted in the abdomen.  At 2+ years Addison still struggles with swallowing even small amounts of liquid and purees.  His only true source of nourishment remains breastfeeding.  His food intake today, for instance totals 4.7 ounces of milk, 4 ML of pureed sweet potato and 1/4 teaspoon of peanut butter.  He can not eat even these small amounts in a traditional manner but rather receives his puree through a syringe, has his solids placed on his back molar ridge and drinks his liquids through a therapeutic cup that allows us to squeeze his milk through a straw.  He spent about 5 hours working to eat these tiny amounts of food.  He works at eating the way I work at a 7 mile run uphill on a 90 degree day.  There are days when the effort of eating is so exhausting he naps for several hours after his meal.  There have been times when he literally has fallen asleep while we were feeding him.  Our work to sustain his health and weight without a feeding tube is a full time job for four people.  Our entire family life is centered around this feeding and napping schedule.  Every ML, ounce and calorie is counted and charted.  And we consider every bite a victory.
This trial began for us in the delivery room when I noticed Addison was not nursing the same as our other babies.  As a newborn he struggled to gain weight even though he spent 4-8 hours a day nursing.  When he developed seizures it took 4 hours a day to get his vital medication into him drop by drop.  As we tried to introduce foods to his diet what had previously appeared to be a difficult trial now appeared to be an impossible and insurmountable obstacle. Our journey to help him overcome the seemingly endless list of complications which cause his dysphagia has taken us to Children's National Medical Center in Washington, DC, Yale University in Connecticut and John's Hopkins Hospital in Baltimore, MD.  He has undergone two surgeries and has therapy 3 times a day every day to strengthen his mouth muscles and teach him to chew and swallow.  We work with two of the top ENT's in the country, the world wide guru in feeding disorders for children with Down Syndrome, a top-notch speech and language pathologist and a doctor of neuro sciences who specializes in treatment and research of people with down syndrome.  Addison has a team of Speech and Language Pathologists who are always working to find solutions and strategies to help him eat.  And yet his problems are so complex, so unique and so multi faceted, we are all regularly standing around scratching our heads unsure what to do next.

In addition to an extreme posterior tongue tie (a hereditary issue), Addison was born with hypotonia (low muscle tone), part of his down syndrome, which makes it difficult for his mouth muscles to move food to where it needs to be for chewing.  It also makes it challenging for the muscles in his throat to move things to the stomach and slows down his entire digestive processes.  With only one of these problems a child would have great difficulty eating.  Additionally, the high dose of steroids used to treat Addison's seizure disorder made his hypotonia even more severe and killed off his taste buds.  That means when Addison has food in his mouth he doesn't feel or taste it is there and even if he did he doesn't know what to do with it.  The lack of taste buds also means Addison never receives the pleasure part (yummy goodness) of the hard work he does in eating.  Therefore he has no appetite or desire to eat.  There are times when our attempts to feed him make him scream.  And I totally get it.  Imagine planning your menu, going to the grocery store, unpacking and storing all the groceries, spending 5 hours fixing a meal, doing the dishes and never being able to enjoy the food.  Not much encouragement to do it again, eh?  And if that wasn't enough, Addison developed a mass under his tongue which interferes with his ability to eat.  He did well for a short time after the surgeon removed it in May but 16 days post-op it had returned and another tumor has grown at a new location in his mouth.  To round it all out, after having only one tooth in his 2 years, the last 2 or 3 months have seen 9 of his teeth pushing through causing the normal pain and discomfort of teething and making anything in his mouth that much more unpleasant.

Our journey to feed Addison has been the greatest trial of my life.  It has often left us frustrated, angry, sad, frightened, screaming and crying.  On at least two occasions I have found myself face down on the floor wailing and asking God to please help our son.  We regularly feel isolated and alone.  It is rare to find someone who can even begin to comprehend the struggle, as even experts in the field don't even pretend to understand how so many things can go wrong in one little mouth.  Loving people who really don't understand offer incredibly frustrating suggestions about what and how to feed him.  I have spent more hours on my knees asking God for guidance and help on this one issue than any other issue pertaining to our children.  EVER.  That's 23 years of parenting talking.  And a whole lot of tears.

And, because it is my nature, I am always asking God WHY?  What is the purpose?  How can anyone benefit from this?  How can He be glorified?  As I look back over the events of the last few years, I see many ways God was working, using our circumstances and being glorified in this situation even before we got to what is, in my opinion, a main point to this journey, even though, it is not likely the only point.
Trust
We have had to make decisions all along the way.  Often we must make quick decisions with little knowledge and frequently in direct opposition to the commonly accepted ideas of therapists and institutions.  Choosing our doctors, hospitals, therapists, and surgeons when they are frequently in polar opposite corners can be very difficult.  How do you decide who is right when we are not the experts?  There are so many types of therapies and everyone believes theirs is the best to help Addison.  We don't have time to waste trying out something which will not help him to gain ground.  There is always the question of do we let God work in the path we have chosen or should we be opting for medical intervention?   In getting Addison treatment we have had to balk the system and stand up for our choices in the face of institutions which the government has given the power to take children from their families.  That is a terrifying place to be.  Every step has been a prayerfully decided one and a leap of trust and faith that the Lord is both guiding us and protecting Addison.

Perspective
We have a precious friend who struggled with an eating disorder when she was younger.  She happened to be staying with us for a few days during the absolute hardest part of this walk.  After coming off steroids Addison lost considerable weight and could not gain no matter what.  Doctors had brought up the suggestion of a feeding tube.  As he continued to lose weight ever day and was no closer to eating food and unable to drink from a supplemental bottle we were in a time of great crisis.  We felt very strongly it was not the Lord's will for Addison to have a feeding tube but we were at a loss to help him gain ground on eating.  As he continued to lose ounces every day we struggled to find ways to get nourishment into him.  One morning I was in my room studying and praying and asking the Lord for wisdom.  Our friend came to my heart and I started thinking of her mother.  Having known several women who struggled with anorexia, I have often thought about our friend and what her eating disorder must be like from her perspective.  However, this was the first time I looked at it from a mother's point of view.

Insight
Interestingly enough, this same young lady shared with me how watching our family through this trial gave her insight to what her illness must have been like for her own mom.  I have never followed up to find out if she shared her new perspective with her mom.  But, knowing this lady as I do I can hear what the conversation would sound like.  I can hear healing.  I can hear tears.  I can see smiles and more strings being tied to two already tightly bonded hearts.  This amazing woman is married now and I can even imagine it has helped her to understand her husband and his protectiveness.

Empathy
In recent months we have encountered two other moms whose children struggle with complex medical issues.  Both are fighting every single day to find ways to nourish their children so they can survive.  Do you understand this is not about children who are picky eaters?  This is about children who would literally starve to death if not for the dedication of their mothers?  This is not something I would have ever understood before Addison.  Oh, sure, because I love them, I would have prayed and sought to comprehend what they were going through.  But I would not have truly "gotten" it.  And to be honest, in this place, the gift of someone truly knowing where we are is something wonderful.  It is such a blessing for me to be able to reciprocate and truly reach out to these women and say, "I get it."  In these discussions there is always a sigh of relief.  And I can get that, too.  Because when I finally encountered Addison's SLP who truly "Got It" she and I were weeping at the idea that at last we aren't alone.  The gift of empathy, while it is not what I would call practical, should never be overlooked.  For in times of great trial I find it the most valuable of all offerings.

Preparation
And here it is.  The big one.  To date I think the greatest reason God has allowed this trial for Addison and our family is to prepare us to minister.  We have spent years now learning and studying about dysphagia and treatments and ways to nourish people who have severe dysphagia.  Things we knew nothing about until Addison came along.

In April our dear friend and neighbor, who has often been like a grandfather to my boys, was diagnosed with stage 4 inoperable esophageal cancer, which has spread to his stomach and liver.  It is only by the grace of God he is still with us today.  Larry comes from a very large, very close family.  All, but his own two children, live nearby.  And yet Larry chose us to walk this path with him.  I don't know why.  And I am sorry he must suffer.  But I am grateful that we can minister to him and serve him in his last days on this earth.  I am grateful my children have sat by his side when he was too weak and too sick from chemo treatments to make his typical, almost daily, trek to our living room.  I am grateful we can offer understanding, empathy, and insight.

Because we have spent two years on the journey of dysphagia we understand when Larry says he can not swallow food.  We understand that he has no appetite because the chemo has killed his taste buds.  We understand how desperately he needs to gain weight.  We are able to minister to him in a way not many people can.  When he couldn't keep anything else down for more than a week after his first chemo treatment I was able to whip up soups and smoothies that kept him nourished.  Our kids have been able to make the fresh pressed juices he desires and keep him supplied in eggs.  Some mornings when he was too weak to fix his own breakfast a team of kids were on call to scramble him a pan of eggs.  One night he told me he had a craving for egg nog.  I took out my favorite recipe, put together a gallon and he drank it up within days.  It is kind of weird making egg nog when it is 90 degrees out.  But it worked.  We keep a running supply of the high calorie goodness in Larry's fridge now and at last count he has gained back 14 pounds.  He told me, "You need to feed this stuff to Addison."  So in Larry's suffering we have gained another person who now "Gets it."  Someone who understands the urgency and impossibility of nourishing a person with dysphagia.  In return for our ministering we have been blessed with empathy.  I didn't have the heart to tell Larry Addison had a very severe life threatening reaction to dairy products so egg nog is not an option for our boy.  But I am ever so thankful we were able to provide it to Larry.

Will egg nog cure his cancer?  No.  But gaining his strength back has helped him tolerate the chemo treatments far better.  And the chemo treatments have shrunk the tumor enough that he is now off all pain medications.  And thus his remaining time has a far greater quality of life than it otherwise would have.  And shockingly while it initially looked as if Larry would not be with us come summer, he is in fact off and going and moving and living life every day.  He couldn't hardly stand up in April and now he drove himself to his chemo treatment last week.  In these additional days he has had time to spend with his daughters and friends and extended family.  He has had time to talk with His creator.  We pray in that time he has settled his questions of salvation and secured his eternity in Heaven.
Addison's story is still being written.  And I have no idea how it will unfold.  Everyday, I question our decisions and choices.  I ask the Lord daily to confirm if we are on the right path and living out his will for Addison and this thing we call dysphagia.  I don't know where it will end.  I don't know if our son will ever be able to eat the way you and I do.  We all literally have dreams in which Addison is sitting at the table eating an Italian feast with us.  I hope for it.  I pray for it.  I work for it.  But in the end what we do is lean on the promise God has it in his hand.  And in the meantime, no matter what happens there are lessons we can learn and ways God can be glorified until the final chapter is revealed.      

2 comments :

  1. What a beautiful yet heart-wrenching post. I cannot even begin to understand what it is you as a family are going through, but I know the Lord has given that little boy just the mom and family that he needs. Your dedication to him is a testimony to your faith and the incredible love of a mother. I am praying for you all. And how cute is that photo of him with the cars?!

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  2. How beautifully expressed! This is why I don't post more often- you and Nana say everything I'd want to say and can't get the right words. Wonderful!

    Our little man has come a long way. The PB is going to be great--he's already getting the knack of it.

    I don't know anyone else who could go what you have/are and not break down. God has been good to us, and that you can still find time to minister is inspiring. Let's hear it for unsung heroines!

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