An open letter to Ruth B.

Ruth B,

                You are probably wondering why a 33 year old mother from Cleveland, Ohio is writing you a letter. Unknowingly, you have made such a huge and positive impact on my son’s life.  Let me explain…

                In December 2012, Jude was born. It was one of the happiest moments of my life. The love and happiness I felt for my son was overwhelming (and it still is). Days within bringing him home, I knew something was wrong. Eating was impossible and he lost so much weight he was drowning in newborn clothes. Many doctors’ visits and respiratory infections later, including an ambulance ride and hospitalization due to aspiration pneumonia, Jude was diagnosed with a rare genetic disorder called 15q24 microdeletion syndrome.  My world stopped.  The next year and half, Jude underwent 10 surgeries including a nissen fundoplication and a g-tube placement and more ER and doctor visits than I can count.  In addition, he started occupational, physical, speech, aquatic, and feeding therapy. Needless to say, my life was based on therapy, doctor appointments, his medication regiment, and g-tube feedings.  Despite the madness of this unknown world, Jude walked 2 years earlier than predicted, spoke 20 words, and smiled ALL. THE. TIME.

                In December 2014, Jude stopped talking. He stopped looking at me. He lost simple skills he worked so hard to learn. Right away, I called the neurologist because I knew that Autism had moved into my sweet boy’s mind. Ever since his diagnosis, he has made some very small improvements, but most of the time it is inconsistent. He still has not said a word, and boy do I miss that little voice. He still does not make eye contact with most people. He still does not respond to his name. Specialist and therapist have assessed him at 6-12 months cognitively, socially, emotionally, even though he is three and half years old.  There are very few things that interest him, one of those select few being Elmo and dogs.  Recently, that has changed…

                That’s where you come in. The first time I heard “Lost Boy” I was able to relate.  Jude is my Peter Pan and I love when I head into his world that seems parallel to the Neverland you sing about.  Jude will not grow up in the same manner other children will so he is very much a “Peter Pan.”

One night I was cooking dinner and listening to Pandora. As soon as “Lost Boy” started playing, Jude stopped and stared at you singing on the TV.  I stopped and watched him, completely amazed. Ever since that night, he stops every time he hears that song. If he is having a sensory overload where he rubs his head and cries, I sing “Lost Boy” and he stops, looks directly into my eyes, and smiles. If we are in the car and the song comes on the radio, I watch him from the rearview mirror smiling while you sing about Captain Hook. Last weekend, when he was in the emergency room for a g-tube placement, we sang and watched you sing “Lost Boy” so that he would not cry or be frightened.  Due to this new found love for your song, he uses headphones with your song playing to complete fine motor tasks. Previously, he cried and threw objects.  Now he works slowly and peacefully.  I am not sure if it’s the angelic sound of your voice, the tranquil melody of the piano keys, or the meaning of the song that relates so closely to our life…

                All I know is that your song, “Lost Boy,” has created peace inside my son’s mind, opened the door for him to complete simple tasks, and allows me to share that moment with him, as he looks right into my eyes. All I can say is, thank you.  Thank you for singing that beautiful song. Thank you for bringing so much to my little man’s life!

Love,

Anne and Jude (aka. Peter Pan)

Beating the Odds

Beating the odds. A phrase we say about a person or people who overcome insurmountable obstacles.  A woman with skin cancer goes into remission, a solider who lost his leg in war starts walking again, and even Cleveland winning a Championship are examples of beating the odds. Beating the odds brings hope, strength, and inspiration to all of our lives.

Jude has spent most of his life climbing mountains, only to get to the other side and realize there are five more in front of him.  He spent most of his first year and half of life at the Cleveland Clinic for doctor's appointments, testing, and healing from surgeries. Then, after all his hard work attending five therapies to learn how to walk, talk, and play, Autism slipped in. He went from being a few months behind, to developmentally 6-12 months at three years old. Throughout his first few months of preschool, he missed weeks of school due to anaphylactic shock and hospitalizations due to illness.  By summer, he had made little to no progress for his social, emotional and cognitive development.  

Yet, despite these overwhelming facts, he remains happy and so loving. When many of us crumble over an insanely busy week, he enjoys the adventure. When many of us are miserable because we have the flu, he is happy watching Elmo videos from his hospital bed.  I could write a million examples (and have written a million) of how Jude exudes strength and happiness in some of the most difficult situations. It is easy to smile when everything lays out as we had planned. It is true strength to smile, laugh, and go on about your daily life when those plans are no longer a possibility. He may not have overcome Autism or his developmental delays, but he has developed strength, smiles at the mountains in front him, and keeps climbing. And that is why Jude is beating the odds.

Putting It Into Perspective

       On Wednesday, Jude will start Preschool. He will spend four days a week at school. The process leading to this decision was more complicated than most preschool placements. Meetings, assessments, checklists and other tedious paperwork that all regurgitated the already known facts. Jude is non-verbal, autistic and in the one percentile in every domain.  The information that was gathered led the IEP team to make the decision that Jude's ability to learn and develop would be best in an all day resource room. Before this process started, I knew this would be the placement. Yet, I still felt stressed when the decision was final.  He cannot share with me his thoughts and experiences, so instantly I am worrying about how I would communicate and connect with him after a long day. Scared to think how someone else would react if his g-tube was dislodged.  And an even more overwhelming thought, would someone stay dedicated to his feeding process or would he lose the skills, we have worked so hard to obtain. My anxiety created a dark cloud over my mind and a perception that made it hard to deal with the idea of Jude going to Preschool.
       A few weeks later, I was listening to "The Obstacle is the Way" by Ryan Holiday while feeding Jude lunch. Three minutes and twenty some seconds into the thirty-sixth chapter, I was enlightened by the author's explanation on how the ordinary people, he wrote about, overcame great obstacles. He says they all "First see clearly. Next act correctly. Finally, endure and accept the world as it is." Those words echoed in my mind.  I stopped and sat back in my chair. Instantly, I recalled the day that Jude met his future teachers. The teachers and aides sat in the family room discussing Jude. Halfway through the conversation, Jude walked right in the middle and started hugging everyone of his teachers followed by a slight pat on the back. Almost parallel to the words of Ryan Holiday, he saw the situation clearly, three new people to love him and acted correctly by hugging every single one. Then, Jude endured and accepted the world as it is, by giggling, smiling and running around all of us. In that moment, sitting in the chair and hearing those words, I realized that I was looking at it all wrong.  Jude will give every situation everything he has and overcome by exercising a positive perspective.
       Wednesday, I will drop Jude off at school and I don't doubt for a second that he will flourish. My stress and anxiety have turned to hope and excitement.  Even though, everything is not the way I had expected or intended, Jude will overcome and be stronger for facing obstacles that come his way with a positive perspective and that unbelievable smile!

The Power of a Parent: Conquering Guilt

   

        Guilt is a dark shadow that creeps into our minds and hides while we are overcome with our own self-inflicted burdens.  Unfortunately, every human being experiences it. Once a parent holds their child for the first time, they become engulfed with the love they share. At the same time, while you are basking in the joy of your new child, the weight of guilt starts to settle in and you can feel the entire world resting on your shoulders. Not soon after your child is born, you ask yourself a million questions. "When will he roll over? Should I be practicing rolling techniques?" "Is she suppose to be sleeping through the night? What did I do wrong?" The questioning of your own ability as a parent continues into different avenues. Over the years, making a decision about daycares, schools, friends, and extracurricular activities can be completely overwhelming. Parenting a special needs child can take guilty feelings to a different realm of questioning "What if I caused these struggles?" "Am I doing enough?  Will he every talk, walk, or eat?" The constant banter of guilt can consume your thoughts. 
        Last month, Jude and I were in our normal Wednesday routine of speech, feeding, and aquatic therapy.  We had an hour and half time lapse until he had Young Athletes practice. Due to the lack of time, I headed to the grocery store.  I parked our car under a shaded tree in the back parking lot. Once I was settled into the backseat with Jude, he ate his purred dinner and completed his medication regiment through the gtube. He quickly fell asleep. In hopes not to wake him, I crawled into the front driver's seat. Without any warning, my eyes filled to the top with water and in an instant it all came splashing down onto my face. Feelings of sadness and guilt enveloped me. All I could think was that my two and half year old never gets time to play on a playground, play with friends, and explore at home. Instead, I am feeding him dinner in a parking lot because his day is so busy and we do not have time to stop at home.  The past two and half years have been filled with doctor's appointments, six therapies, twelve surgeries, and more sickness than I care to remember. If I don't take Jude to physical and aquatic therapy, he may not be walking.  If I don't take Jude to occupational and speech therapy, he may not develop safe sensory input or learn to communicate with anyone. If I don't take Jude to feeding therapy, he may never eat solid food or feed himself. Slowly anger took over my emotions. Why is this the life for my fun loving, always curious, sweetest boy in the world? Why can't he just play or run outside? Many times, I place this unnecessary blame on myself.  I took a long, deep breath and dried my tears.  In the rear-view mirror I could see Jude sleeping so peacefully. I decided to consciously remind myself that, even though I do have to take drastic measures for Jude to learn functional living skills, those decisions have supported Jude in beating all expectations.  Most importantly, Jude has remained so happy because he knows he is loved.
        Every parent has crucial and gut-wrenching decisions to make for his or her child. Making decisions on what Jude needs can be life threatening, imperative for his development, and emotionally exhausting. Some days, I wish I could fix everything and just let him play at home.  On the other hand, when I observe Jude I know the guilt is unnecessary. He reminds me that he is happy with his life by tight hugs in the morning and big smiles as he is racing into therapy.  It makes my guilt of  his not "normal" childhood melt away.  I know it won't be the last time I feel guilt, but I know now the best way to overcome my guilt is watching Jude flourish...and of course, soaking up all of his smiles!

Mother's Day

         

 

          Today is Mother's Day. Everywhere you look we are celebrating. There are a million different mommy groups dominating social media, blogs reflecting on the strengths and triumphs of motherhood, and commercials about a mother's sacrifice. I suppose I should be spending Jude's nap time sleeping or doing some sort of pampering activity, but instead the time was spent reflecting on motherhood. The good, the bad, and everything in between.

          Everyday, I thank God for Jude.  Being Jude's mom is definitely a unique journey, but without it I wouldn't be the person I am today. The past two and half years, have been life changing. Here are just five of the million different ways that Jude has changed my life:

1. Feeding. Eating. Drinking. Let me tell you, it is not as easy as you think it is. Do you know it uses more muscle groups than any other physical activity? It's hard! How about 5% or so of the population do not feel hunger pains like the rest of the human race? You better believe Jude is in the 5%. Did you know that eating is not a natural instinct after 3 months? Trying to feed Jude dinner is like running a marathon...completely exhausting. Glasses of wine, listening to motivating music , Elmo's birthday episode on repeat during the longest half hour of my life... all for 2.5 ounces of pureed baby food. Patience is a virtue that is practiced on repeat during dinner.  This experience has taught me that something that seems simple can really test your patience and laughter is the best medicine.

2. Speaking is not necessary. Anyone who knows me, knows I love to socialize. It has always been my way of expressing myself in all of my relationships.  It seemed to be the natural way of communicating.  December 2014 proved me wrong because Jude stopped talking. This meant I would not hear him say "mama" anymore. I might never hear him say "I love you." It was hard for me to wrap my head around the idea of Jude never vocalizing his love and life to me. I was reminded of the saying "actions speak louder than words." It resonated in my mind.  Every time I am happy, he screams with joy. Every time I cry, he hugs me and pats my back. Every time he is fearful, he widens his eyes and begs me for strength. He does not have to talk to tell me about his feelings.  Jude has demonstrated unconditional love in a way I never knew.

3. Sacrificing. As most mothers know, you give up most self-indulging activities, but who wouldn't, babies are adorable! Something happens when you are pregnant and have a child. Instantaneously, you fall in love. You spend day and night worrying, planning, and analyzing every aspect of this little human's life. I experienced all of this and then some. At four months, Jude started adding in additional material for me to fret over. From that day forward, Jude would have ten surgeries, five weekly therapies, a gtube, and a long list of allergies.  Every other Wednesday is spent calling four pharmacies just to refill supplies and medications in the home. I definitely have said goodbye to my monthly massage and pedicure treatment that I exercised pre-baby. I am forever grateful to Jude for giving me the opportunity to not be selfish. I have learned to fight for what I believe in and consciously think of someone else. Pedicures are lovely.  Watching your baby with hypotonia walk for the first time, that is truly magical.  That is what makes life worth living, not pedicures.

4. Everything is fantastic. It is human nature to complain...unless you are Jude. He loves life. He loves the simple things. Even though he has been through great struggles, he has a great perspective. If something hurts, he may cry a little or rub the injured area and then he moves on.  Within seconds, he is standing up amazed by his hands and laughing. He doesn't dwell on what has happened. Though this is on a much smaller scale, it has inspired me. If a two year old can endure what he has faced and is still smiling, so can I.

5.  Miracles happen everyday. Jude is a miracle. Jude has survived events that would not of been successful for others. He has accomplished milestones that doctors and research predicted otherwise. He is my miracle. Experiencing and being apart of a miracle is extraordinary and life changing.  I am blessed and humbled by this experience.

          Today, I would like to say thank you to Jude. Thank you for giving me the opportunity to be your mom.  Thank you for motivating me everyday to become a better person. Thank you for being my teacher. Thank you for this beautiful life. It maybe Mother's Day, but I celebrate you. 

Jude's World

   

    Lack of emotion. Loss of words. Withdraw. It is called Regressive Autism and it crept into my house and right into Jude when I was preoccupied basking in the holiday season. My morning wake up call went from "hi...mama" to Jude banging his gtube stand against my bed because he couldn't find his voice to speak. His mornings were spent obsessively jiggling door handles instead of pretending to read through books.  When his interest shifted from my smile to how fast he could move his fingers through my hair, I knew. I suppose it was the accumulation of all the blatant signs, but there is always that "moment" of clarification.
    Right after the new year, we took him to his neurologist. After multiple visits and tests, we were told what was already known...Jude was Autistic and non-verbal. Autism is well-known, yet highly misunderstood.  It has a very large spectrum so there really is no comparison from one Autistic person to the next.  Jude falls on the "severe" end.  This decision was based off his non-verbal status, withdraw, his lack of a social and emotional connection, and a long list of other Autistic characteristics.  Even though, I had already heard news like this before, the wind was knocked out of me. As always, I had to set my feelings to the side and figure out how to help him. Medications, a communication device, and a shift in the way he receives therapy (thanks to his talented therapist) he has rid himself of his past frustration.
    As time has passed, I have reflected on Jude and all the feelings surrounding his diagnosis. I sat back and observed Jude in his most comfortable surroundings.  Interestingly enough, I don't know many two year olds, as content as Jude. Sure, he is completely immersed in his own world, but he is happy with himself, "gogs' (dogs), and Elmo. It is when he is forced to be removed from his world and plunged into a sea of "normal" that he becomes overwhelmed and quite frankly, annoyed. It is utterly amazing and brings about such joy when you interact with Jude in Jude's world. He lights up because it is a peaceful and happy place. The wave of relaxation that comes over him as he pets a dog. The laughter that pours out as he is bouncing his Elmo doll.  It is simple happiness. As a parent there is a dark side, I have and still do mourn the loss of "normal" things for Jude and I.  I have my moments and I am sure I will have many more, but that is just part of being a parent and loving your child unconditionally.
    As with any new "storm," my little man turns it into a rainbow. He is always a light in my day.  When the "normal" world is stressing me out, I just head into Jude's world and it always puts a smile on my face.

Five valuable lessons

In a few short days, it will be October 2014. It will mark one year since Jude was hospitalized for GERD and failure to thrive. That hospital stay and the one that followed were some of the scariest days of my life. We were sent home with an NG tube and returned a week later for surgery to place a gtube, Nissen fundoplication, and the first set of PE tubes. I didn't know how I was going to manage all my emotions, Jude's needs and feelings, the new equipment and medical supplies, and what the future may hold. A year later, I can now see how well everything turned out. I can see how each of those surgeries made Jude stronger and he continues to thrive in every way. Not only has Jude become stronger, but so have I. I am not the same Mother sitting in the ICU scared and sick.  In fact, I wish I could go back and reassure myself that everything will be ok. That I will learn these five valuable lessons to overcome my hurt and pain:

1. Let yourself cry, be mad, and wonder why.
     When I sat in the hospital room, carried Jude to testing, held his screaming body down as they placed another tube or started another iv...I wanted to cry. Yet, I felt guilty for showing weakness. It was Jude being restrained and hurt, not me. Then I realized if I didn't cry, be mad that this was my reality of motherhood, and wonder why it was happening to Jude... I would of never worked through my emotions and gotten to a place where I feel at peace (well, most of the time) and find such happiness in our life.

2. Trust your instincts and have confidence in your decisions.
    This is something people tend to forget, especially new mothers. In high stress situations, people become overwhelmed and lose faith. It is human nature to doubt yourself. So many times I doubted myself but there was always something telling me in the back of my mind to follow my instincts about Jude. I carried Jude for 9 months and cared for him day in and day out. I knew when he was sad, happy, or in pain. I had no reason to doubt my ability to make a call on what was best for his well-being. As time went on I became more confident, I asked questions, and I had no problem telling doctors, nurses, or other care takers if I was not comfortable with his care. This new advocacy made me less stressed about how we were moving forward or Jude's well-being. 

3. Know that right now isn't forever.

     This is the most important piece of advice. At the time, it seems all consuming, horrible, and impossible. Don't get me wrong, it is! But, time goes on. Life constantly changes. All of sudden it is a year later and the gtube is part of the routine and Jude is strong and walking. That does not mean you will never have a hard day again. It just means that the situation right now can ALWAYS get better.

4. Surround yourself with honest sincere people who will understand what you need. 
   When I was at the hospital I am not quite sure when it was that I slept or ate. As any mother would, I gave every ounce of energy to Jude and forgot that at some point I might collapse without my basic needs being met. Cue in the amazing support system I had and still do have! It was the first time I can say I couldn't be a daughter, sister, friend, cousin, niece, and granddaughter. Everyone else gave me 100%. They brought me food so I would eat, they reminded me to sleep, they talked/texted/called me while I cried or talked about anything else than the present situation. They knew what I needed and just did it. To them, I am forever grateful. Without their love and support, I would of probably passed out from hunger or lack of sleep and needed an IV myself. Difficult situations like this are impossible without these people! 

5. Find the reason why you were chosen. (God always has a plan). 
     This one is hard, but it really can change your outlook on life. I remember feeling how unfair this situation was for Jude. What did he do? After lots of soul searching, praying, and the talks from my support system I finally found my answer. Jude was chosen because he shows so many people that struggles don't define you. Yes, life is difficult and it never comes without trials. This is indeed a big trial, but he made the best of it and has touched so many people's lives. If I would of never realized this, I would still feel angry and lost. 

Hard times can hold us back from our optimistic future. This past year, these "lessons" have helped me through many difficult times. Just remember, when you are in a difficult situation you can make it through by keeping these five lessons in mind...just like Jude and I.