It was such a hard day of feeding therapy. So hard. Tommy was not engaged, he was tired, and he had shut down. On our way home he fell asleep in the car within seconds of leaving the STAR Center. I grabbed some food to go and pulled into our hotel parking lot and just sat in the car for about an hour while he slept. My mind was racing. I kept thinking about the day and how much work is ahead of us and it just got to me.

When Tommy woke up he was still exhausted but glad to be home. I walked him in the room and then quickly left to go grab a package at the front desk. When I came back Tommy was in the other room hysterical, crying and Marijane and I couldn’t understand why and couldn’t get him to calm down. He only wanted to be held so I grabbed the package and sat with him on the bed hoping that the distraction would calm him down. I couldn’t open the package fast enough. He was still crying as I opened the box, but soon he noticed one of his most favorite people and was smiling immediately. “INA!” he screamed as I lifted the book from the box…he was thrilled.

I still had no idea who in the world could have possibly given Tommy literally the most perfect gift on the planet. As he scrolled through each page studying the different beautiful photographs of food, I read the enclosed letter and was shocked to learn this most precious gift was from a close friend of my aunt. A woman who had read my words, felt my pain, and despite having never met face-to-face, continues to pray for me and my family miles and miles away.

She had taken the time to read Tommy’s story and knew how much he loved Ina and well, the rest is history. Shelia and I spoke for the first time this evening and I discovered she had experienced her own storm about seven years ago and her faith and the faith of those around her had pulled her through a very difficult time in her life. We talked and it felt as though I was speaking with someone who knew exactly where I am in this moment. Without saying anything I knew she knew my struggles and my pain. Her simple act of kindness has blessed me beyond measure today and, for that, I am eternally grateful. From the bottom of my heart, thank you Shelia.

“If you’re in a difficult place right now, perhaps you need to entrust the problem to the Lord and leave it in His hands awhile. He alone can storm the impregnable, devise the improbable and perform the impossible. He alone can part the waters.”                                        

~ Robert J. Morgan

I had the honor and privilege to photograph one of my dear friends, Cassie, for her bridal portraits. Despite the brutal August heat, we managed to have such a fun day and she was stunning. It’s always easy to photograph anyone in love. She was glowing on this day, but even more so on her wedding day. I wish Cassie and her precious husband Justin nothing but love and happiness in their life together.

It’s been so therapeutic to be confined to a space with my children and forced to take a breath, smell the crisp cool air, and really play with my babies.  We’ve scoured every inch of this hotel looking for baby bunnies. We’ve discovered new birds and trees, run up and down the quiet halls, and enjoyed a quick dip in the chilly pool. We’ve watched beautiful storm clouds roll in over the mountains on the horizon, read books, and made endless Lego towers.

We’ve stayed in our pajamas well past noon and its been perfectly perfect. Claire has been trying so so hard to crawl and Tommy has loved encouraging her every second. I’m so grateful for her easy going attitude these past few weeks. Despite the fact that she’s been teething like crazy, she’s been so peaceful and I count my blessings every second.  I am crazy sleep deprived as we’ve been up multiple times most nights but its been wonderful to steal some one-on-one time with her.  I think Claire has been a good distraction and source of comfort for Tommy.  He is an amazing big brother. He protects her little head when she falls, he wants to hold her constantly, and although his dinosaur toys are off limits, he’s happy to hand her endless Legos to chew on. I love that she is finally of the age where she can connect with him. I often hear little laughs and giggles endlessly as they stare at each other in their car seats next to each other, and if I’m lucky, I sometimes steal a glance at him holding her hand and it makes my heart skip a beat. I so cherish the sweet moments shared by these two precious little souls.

I can’t believe our second week of treatment has come to an end.  The week days are long and exhausting, but I’m grateful for a little break today and some quiet time to step away and process everything.  As I write, I can hear the sound of thunder as a summer rainstorm gently rolls in. Claire is fast asleep and Tommy is in the other room discussing bears with Marijane while pretending to be a zookeeper…my heart is full.

Words cannot begin to describe my appreciation for Marijane these past few weeks. She is one of the most selfless people I know.  There have been many days when she has not left the hotel and has managed to support me constantly with the kids. She’s learned Claire’s different cries and rocked her patiently into a deep sleep dozens of times. She has seen me at my best and worst, and given me much needed breaks when I crumble.  She’s stayed so calm under pressure while entertaining two tired, fussy kids in the back of the car while I race to get home for bedtime. I’ve learned very quickly what I can handle and when I break and she has been there to pick up the slack every single time.  Although she has only had the opportunity for one very quick visit to the STAR Center, she continues to ask questions constantly to educate herself about SPD and learn more about all the dynamic issues Tommy is struggling with. My words of gratitude are not adequate. Her gift is simply, priceless.

When we arrived for treatment I knew it would be hard and I knew it would be exhausting.  What I didn’t know is how much Tommy would unconsciously help me through the process. It has been so difficult to watch such a painfully delicate and slow process play out before me this past week. I’ve learned a new level of patience that I didn’t know I had in me. I’ve grabbed Tommy’s hand so tight at times, trying to hold back tears as I’ve watched him struggle so immensely with some things that most would consider so simple.  I’ve had to remind myself to take baby steps…each and every day. Tommy is working so very hard. He is being challenged and pushed out of his comfort zone at times and he is using his little body to its upmost potential. We are both absolutely exhausted at the end of each day, but he continues to go through each session with a smile.

One of the first things we learned about, during our initial parent feedback with the feeding team, is the 32 steps to eating.  We were given an amazing chart that shows the steps very clearly mapped out in a stair step fashion to demonstrate all the experiences a child like Tommy must go through when coming into contact with food.  The first step is simply being able to be in the same room with food; while the last step is, obviously, chewing and swallowing the entire food independently. The goal is to slowly work up step-by-step with each food, putting it in Tommy’s personal space, touching it, putting it on our shoulders or head and just playing with it. The minute Tommy shows regression or any sort of stress or anxiety with a particular food as we work up the steps to eating, and it gets closer and closer to in his space, then his therapist backs off, and starts again with the next food back at step one. I don’t take a single step for granted.

Every session is the same. We start out by heading to the gym to do what they call “heavy work” to get Tommy’s body ready for food.  It allows him to really prepare his body and his sense of space and helps to desensitize him to be in a more complete state. It is an incredibly, strategic hour and a half of taking baby steps and learning more and more about different foods.  We all walk in, Tommy sits is a special chair which we will carry over to our home.  He has a non slip pad beneath his bottom and his feet to help stabilize him while at the table.  In a normal setting, due to his low muscle tone, Tommy can only physically sit at a table for a brief while before his body starts to fatigue.  He will start to shift his body weight right and left, he’ll say he has to use the bathroom, he’ll change the subject, etc. all as a result of fatigue. The chair helps him to sit at a 90 degree angle at his hips, knees and feet which helps him tremendously.

Our first task is bubbles. Tommy has no idea, but what we are really doing is taking very slow, deep breaths to help calm his mental and physical state.  He’s learned the slower the breath, the bigger the bubble and it works like magic. Our therapist then places some bubbles from a little bucket of soapy water she keeps nearby and he slowly rubs the table to “clean” it before we eat.  This exercise increases his tactile senses and cues him that we are preparing our table for food.  We all work together to move a big white towel across the table to dry it off.  Tommy is using deep pressure touch as he rubs his hands across the table, again, another tactile exercise as well as desensitizing for his body. We are then each handed a small white washcloth to use as a safety mechanism if perhaps Tommy is uncomfortable with something on his hands.  He often will rub crumbs off his fingers to clean them.  It’s simply a reassuring tool to help him realize its ok to touch different foods of different textures and its always ok to wipe your hands or mouth clean.  He uses it constantly and gets extremely uncomfortable with certain textures on his finger tips. Every single step is a baby step.

Our therapist is amazing. She is always so present and so connected with Tommy. She always has 9 foods to learn about each day. The first several foods are usually the same.  They are categorized by color, texture, safety, etc. For example, the first day his food lineup looked like this: Small white marshmallows, saltine crackers, tortilla chips, chicken nuggets in the shape of dinosaurs, cheese from a can, veggie straws, carrots, green apples, dum dum lollipop, drink (usually water or juice).

They are all introduced very slowly and we explore each food for about 5-15 minutes each time. You may look at the food lineup and think these are all things that are so simple, but when you really drill down on the food there are so many different colors, textures, smells, and oral-motor activities one has to experience when dealing with each of them.

It can be an excruciatingly slow process to watch. Every minute I’m in there with him I have to constantly remind myself that my son is essentially having to retrain his brain how to eat. He has to learn that food is not scary or painful. He has to learn what it means to eat solid foods and have a full tummy…a feeling I can’t honestly say he has ever felt in his life. I can only imagine how challenging that must be for him, and I often rub his back or stroke his hair to let him know I’m right there with him.

The honeymoon phase of our therapy has ended. Two weeks have passed and we are now in the thick of beginning this journey and it will be so challenging.  I am trying to remind myself that results will not happen over night. It’s a daily struggle, but I continue to to remain strong and vigilant in my faith that God and Tommy’s army of angels are guiding us through this…one baby step at a time.

I’ve written this story in my head a thousand times. I’ve thought about how I could possibly even begin to explain such a long, bizarre situation to anyone that would care to read it. I’ve told the full story only a handful of times because it’s quite frankly exhausting to explain. I’m either met with one of two scenarios: a deer in the headlights look and a quick change of subject, or a quick interruption and comment such as…”Tommy looks like such a big, healthy boy! Give it some time, he’ll grow out of it.” It became too much for me to handle at times so Rob and I just continued to power through this with the support of our family and moved forward with our search for answers for our son. Throughout the years I’ve written dozens of emails to his pediatrician begging for reassurance to my constant pleas for help. “Something is wrong with Tommy…He’s not eating…He’s not eating…He’s not sleeping…I feel like he’s sick all the time…I think something is wrong with Tommy.” Every single time I was met with the same response, “He’s growing proportionally. He’ll grow out of it. Your giving him too much milk, reduce it to one cup a day. Have you tried eliminating food all together? He’ll eat when he’s hungry.” Same song, different verse every single time.

In retrospect I always knew something was off.  He was never a good eater. Ever. Nursing was such a struggle, but I stuck with it as long as I possibly could while working full time. Tommy was never a good sleeper. Ever. We tried to introduce foods around 8 months and although we were consistent, he was never interested. We believe around the 18 month mark was possibly the point where he started to show some signs of what was to come. His food intake dwindled at a point where most toddlers were just beginning to grow to love food.  He narrowed down approximately 5-10 foods he would put in his mouth, if we were lucky. His patterns have always been very cyclical.  He will go days with nothing but chocolate milk (16-24oz heated for exactly 40 seconds in the microwave) with a little bit of Hershey’s sugar free syrup, and water. Milk is his primary fuel. Maybe a few berries, or a banana. Some crackers or goldfish. He’s also had really good days. He may eat one Eggo brand blueberry waffle with some raspberries for breakfast; and if we’ve won the lottery, he’ll eat a cheeseburger.

His only source of protein in his entire life has been milk and McDonald’s Happy Meal cheeseburgers with meat, cheese, and bread only.  It is literally the only meat he has ever had in his life. I’ve been judged beyond belief for it, but until you have a child that doesn’t eat, you have no idea.  It’s called survival. I cannot tell you how many times a week I drive through McDonald’s praying that maybe he’ll eat a burger.  There have been countless days where he will tell us he wants a burger several times and then when we hand it to him he cries and throws it on the ground.  About three weeks ago, Tommy was starting to spiral again and he hadn’t eaten anything but some berries Wednesday morning. It was now Thursday morning and he had gone almost 24 hours with basically nothing but a couple of glasses of milk and water. He was exhausted. He didn’t sleep well, because he was starving. His eyes were heavy, and I knew I had to get something in his stomach.  I put him in the car and raced to McDonalds at 10:00 am praying he would eat some pancakes. As we were pulling in he started to cry and became hysterical because he was asking for a hamburger and they didn’t have any available.  I begged the attendant with no avail.  My three year old son, was in the back, screaming for a hamburger at 10:00 am and I just lost it.  He eventually ate a tortilla in the car, but not much else the rest of the day. This is just one piece of the bigger puzzle that was beginning to take shape.

In October, our precious Claire came in to this world and Tommy couldn’t have been more loving and excited to greet her.  She, thank God, has always been a very easy baby so, while the first few months were hard…they were nothing like what you experience with your firstborn. Aside from the expected regression and adjustment in the weeks following Claire’s arrival everything seemed to be going smoothly.  He was, as usual, not eating much. He had good days, and bad days. His sleep was minimal, but consistent. He usually would wake up in the middle of the night but if it was early enough, we could usually get him back down with, of course, a cup of chocolate milk.

Tommy’s routine of school each day helped a lot in the first few months after Claire was born. His precious teacher supported him so much this past year. She was one of his strongest advocates and we worked very closely with her as different flags started to raise. He would VERY rarely eat during their snack time. He started to regress long after Claire’s birth. He became anti-social. He struggled with even the slightest changes in routine. He would easily break down in tears and had a lot of trouble getting back to a calm state. He would cry the minute we told him we were going to a restaurant and beg us not to go because he didn’t want to eat. Everything was a struggle.

Then, what seemed like overnight, the first week of March of this year our three year-old baby boy and our little world as we knew it shifted. Tommy’s usual 10 (+/-) foods dwindled to just about 3-5 things (including milk) he would actually eat. He would usually eat breakfast only each day. He would have milk for lunch and dinner and I would force water often.  He started waking up every two hours in the night and often would wake up at 2:30 or 3:00 am and not go back down until 5:00 or 6:00 pm the following evening, without a nap. He was exhausted and emaciated. He had nothing in his body. His skin was pale, he had deep bags under his eyes, and he was sluggish beyond words. I remember holding him one afternoon and rubbing my hands over his forehead and as I moved my hands through his hair it felt brittle. I honestly don’t know how Rob and I did it.  He would come home after a long work day and leave for graduate school at night twice a week. I was nursing a 5 month old baby, working part time, trying to be a supportive mom and wife and I was broken.

I remember several very early mornings between 2:30 – 6:00 am sitting in my bed Googling anything and everything I could think of to try to find some answers for my baby boy, as he sat next to me wide awake in the middle of the night. I came across a segment that ABC Nightline had done on children with severe eating problems related to Food Neophobia and Selective Eating Disorder. When I watched the video I cried thinking maybe this is what my son is struggling with.  You can watch the video below.

I called Duke University the following morning to get more information and placed Tommy on a two-year waiting list for their food neophobia (fear of food) program for children. Although two years of waiting seemed excruciating at the time, it gave me some sense of relief to have something to fight toward. The following morning after another miserable day of no food and a night of no sleep I sent this email to our pediatrician one morning at 4:00 am as a final desperate plea for help…

We have had an excruciating week with Tommy and I’m writing to you as a friend and a mommy desperate for a helping hand. I know this may run beyond your expertise but I’m asking for an opinion or thoughts on how you think I should go about researching additional treatments for him. I feel like I am constantly walking on egg shells worried about saying or doing something wrong as it relates to food that may increase his anxiety or harm him mentally even more. I feel like his anxiety, body, etc is slowing spiraling out of control and I am so incredibly worried for him.

He hasn’t slept past 3:00 am every day this past week, and between Tommy and Claire, Rob and I are averaging about 4 hours of sleep a night if we’re lucky. Wednesday night I got 1 hour. I am a mess! Tommy is still suffering from the same congestion he had when he came in to see you the last time. I feel like he has absolutely no immunity to any sort of illness because he doesn’t have any nutritional substance in his body. His usual food intake over the past week or so consists of chocolate milk and if we are lucky he will eat maybe 1 or 2 chips. This is every single day. He will occasionally drink the equivalent of probably 5oz of water a day, again, if we’re lucky but it’s usually because I force him to drink some water. He is miserable, exhausted and quite frankly just a different child. My child is wasting away before me and I am crying out for help.

I’ve done some research and came across two things that I think describe Tommy EXACTLY as it relates to food and anxiety: Selective Eating Disorder and Neophobia. I am wondering if we need to seek counseling with a specialist specifically relating to eating disorders in children. I keep researching but can’t seem to find anywhere that deals specifically with children. What is the best way to research specialist in the medical community?

My mommy gut instinct tells me we are putting a band-aid on his anxiety and not treating the right thing. I think it’s helping a bit but my gut is that we are still not yet at the root of the problem.

Again, I know this is beyond your realm of expertise but I’m seeking help from you on how I might go about researching alternative treatment options for him. We would hop on a plane and go across country if it meant him getting the treatment he needs to become the child that I know is inside of him. Bottom line is…Rob and I are exhausted mentally and physically and don’t know where else to turn but you.  I’m so sorry to unload this on you but you are my only hope for help.

I got a call the next day.  In addition to everything else I had emailed her about, I asked if there was any way to test Tommy’s blood for a possible problem internally and the response I received was, “No, there is nothing we can test him for specifically, but I really think you need to see a nutritionist.”  I kindly thanked her for her time and ended the call. I felt totally deflated and defeated.

The next week, a dear friend of mine who knew Tommy well and had seen his struggles first hand, recommended I have Tommy evaluated by a friend of one of her mutual friends who was an Occupational Therapist.  I called her the next day and broke down in tears over the phone.  I was crying on the phone, unloading all of my fears to this woman I had never met, begging her to help us.  She assured me she could help and I believed her.  We arranged for her to evaluate Tommy the next day. It was the best decision we ever made.

Tommy’s occupational therapist, Mandy, arrived the following day and after a very thourough evaluation she immediately knew Tommy was deeply struggling with Sensory Processing Disorder (SPD). The most clear definition of SPD comes from The STAR Center website: “Sensory processing refers to the way the nervous system receives messages from the senses and turns them into responses. For those with Sensory Processing Disorder, sensory information goes into the brain but does not get organized into appropriate responses. Those with SPD perceive and/or respond to sensory information differently than most other people. Unlike people who have impaired sight or hearing, those with Sensory Processing Disorder do detect the sensory information; however, the sensory information gets “mixed up” in their brain and therefore the responses are inappropriate in the context in which they find themselves. Pioneering occupational therapist, psychologist, and neuroscientist A. Jean Ayres, Ph.D., likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly.”

We were so relieved to finally have some answers, and the more we learned about SPD the more it all made sense. This disorder has been lurking and reeking havoc on our family for so long and we would have never know had we not continued to fight for Tommy.  SPD is silent, that’s one of the scariest things about it. There are so many subsets of it that I could go on and on about; but only after peeling the onion and really digging deep did we begin to piece the puzzle together.

We knew Tommy had severe struggles with eating; but after her evaluation Mandy informed us of several other things he was struggling including: low muscle tone, hyper-mobile joints and decreased strength which causes him to work his muscles twice as hard to do every day tasks. Mandy continued to work with Tommy over the course of several weeks and literally brought him back.  He started to make slow baby steps of improvement. We knew we had a very, very long road ahead for Tommy but we had so much hope for improvement.

On Easter Sunday, I was speaking with a family member who knew of Tommy’s situation and she mentioned a friend’s daughter how also struggled with severe feeding issues resulting from SPD. She mentioned her friend took her daughter to a place called the STAR Center and she had seen tremendous success.  I researched the STAR Center immediately when we returned home and I had them on the phone at 9:00 am the following morning.  That week we completed hours upon hours of paperwork and Rob and I had several conference calls with the feeding and occupational therapy teams to make sure Tommy would be a fit for the program, and thank God, he was. We arrived for our 8-week intensive therapy program a week ago today and we couldn’t be in a more perfect place. This week has given me the hope that this place will truly save Tommy’s life.

As I sat in the waiting room on our first day I looked over and stared at my precious boy. We had come so far and been through so much and we were finally here…I had to hold back tears. There were a few other families waiting as well. Children that looked just like Tommy but all seemed to have different struggles that had led them to the same moment we were all sharing.  I looked at each of the parents and smiled. You could see it in their eyes, they were beyond exhausted. They had made it through the door with their precious babies and they were at the end of their rope, desperate for help. Desperate for answers. These parents are warriors for their children and without even saying a word, I felt a deep connection with each of them.

The past few days have been filled with intense evaluations each day with the feeding and occupational therapy teams. Tommy has been observed by a huge team of specialists all with years and years of expertise in SPD and feeding problems.  We’ve learned so much about SPD, more than I could have ever imagined. Toward the end of the week we had a three hour feedback session with the head of the feeding team and a two hour feedback session with Tommy’s occupational therapist and sadly we learned Tommy has been struggling with so much more than we originally anticipated.  He has a very long road ahead of him and we will have to make several adjustments in our life but ultimately our hope is that he will one day become a successful eater and we can learn to manage his specific struggles with SPD. We will do everything in our power to make that happen and we are in the best possible place to ensure a bright future ahead.

Tommy will have therapy every day for eight weeks (1.5 hours of feeding therapy in the morning and 1.5 hours of occupational therapy in the afternoon).  It is my hope to photograph different moments each day so that we will never forget these moments in Tommy’s life.  I hope that one day he can look back and read my thoughts and know in his heart how much we fought for him.  I am still a very young mom but I have learned the hard way that everyone must advocate for their children.  I sat back and listened to and believed one opinion for three years, knowing full well that my gut was telling me something was not right.

If you’ve made it this far and are still reading, thank you.  I hope you will share this information if you know of a friend that may need to hear it.  I would have never known about SPD or the STAR Center had it not been for me sharing Tommy’s story with those that I trusted would listen. I’ve learned to continue to ask questions and never be afraid to ask for help.  I would encourage everyone, in any situation they may be experiencing, to get second and third opinions; and most importantly, trust your gut…always.

Eight months have flown by my sweet Claire.  Thank you God for being literally the easiest baby on the planet during one of the hardest seasons of our life.  Your precious smile and that dimple…oh that precious little dimple. It melts my heart.  You love to sleep and eat, but you love your brother the most.  We love you baby Claire.