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.

I'm just a believer that things will get better...

           

 It has been a long time since I had an evening to sit down and type my experiences and thoughts about Jude. Life has been extremely busy since his emergency surgery in April. He has had a tight schedule with the six ER visits in only two months, too many doctors appointments to count, five therapies weekly, AND a surgery that included five minor procedures at once. Yet somehow Jude got through all of it even better! During this time, he has given me some of the best days of my life.  For the first time, he said "mama" and now he says it over and over again to wake me up in the morning. 7:30 a.m. has never been so inviting :) Then just two weeks ago, he beat the odds and everyone's expectations and took his first steps.  He is flourishing and happier than ever! It seems like from a medical stance, we have things under control.  We will continue with the routine check-ups with his specialists.  We have been focusing on his cognitive, motor, communication, and feeding skills. Not every therapy session or doctor appointment is easy. Sometimes the news or the unknown future can start to stir up unwanted anxiety. It is Jude laughing hysterically at Elmo or Mr. Bear, his voluntary hugs when I need them the most, and his pure joy with the simple things in life that cure all the negative feelings. I truly believe hardships, setbacks, and obstacles we encounter in life leave us with two options: give up or keep moving. Jude always keeps moving. Strength, perseverance, and always finding that faith despite your setbacks and troubles was never something I could of learned without the lessons my son has shown me on daily basis. Everyday we are stronger than yesterday, cherishing our time together today, and believing in a better tomorrow!

Moments

    We have all heard the saying, "a moment changes everything".  Whether it be told to us as words of wisdom, in a book we read during college, or on the radio when David Grey hauntingly sang those lyrics...we all know a moment changes everything.  Like most people, I always believed my "BIG moments" happened when I graduated high school and college, my first job, the day I met my husband, our wedding day, when I found out I was pregnant, and the day I gave birth to my son. Those are the moments that everyone dreams and thinks about their whole life.  Unfortunately, not all the BIG moments are as blissful.  Sometimes our big moments can be incredibly difficult.  It is in those dark times, that people find their true strength and happiness in life.
    One of my big and not so happy moments happened a year ago. April 26th, 2013 to be exact.  It was a day I will never forget.  It was Jude's first appointment with the pediatric neurologist for his hypotonia. We spent forty five minutes watching as he examined our little Jude.  It felt like a lifetime, except for his few impressions of Donald Duck that broke up the silence.  After several minutes typing away, the neurologist began to discuss his findings.  He started to draw and write things on a piece of paper ruling out reasons why he would have hypotonia.  Finally, he explained that the combination of his dysmorphic features and hypotonia means he has some kind of a genetic disorder, and he was going to order a chromosomal array.  Everything became silent.  People were talking, but I did not hear them.  I felt like my whole life was crashing in and yet everyone kept moving like nothing was going on.  My body could not keep up with my breathing. I felt like someone had stabbed me.  I could not imagine what this meant for my baby, "Why him?" "Why me?" "Why Eric and I?".
    After that appointment, the year turned into doctors appointments, therapists, and surgeries.  Between Jude's ten specialists and six therapists we were all overwhelmed. Then when he was hospitalized in May for aspiration pneumonia, June for MRI and bronchoscopy, October for malnutrition/GERD, November for PE tubes, nissen fundoplication, gtube placement surgery, and April for emergency surgery to create a new gtube site and removal of part of his damaged stomach.  We were sad and felt helpless.  Most of the time I kept asking "Why?"  "Why us?" "Could I have done something different when I was pregnant? Could I do something more than what I am already doing?"
    Throughout the year, I had a lot of support and encouragement from family and friends.  I attended support groups, read lots of stories/blogs about parenting a special needs child, and I talked a lot with Jude's therapists.  I started focusing on how happy Jude was everyday.  I started to feel happy with his progress and everything we were doing, but I still had days that I felt guilty and sad.  One day we were all sitting in church and the reading said "His disciples asked him "Rabbi, who sinned, this man or his parents, that he should have been born blind?" Neither he nor his parents sinned,  Jesus answered "he was born blind so that the works of God might be revealed in him."  It was true and so was all the encouraging words from family, friends, and other parents. Everything that happened was not something we had done wrong.  It was not an awful situation.  (Don't get me wrong, it hurts to see Jude when he is in pain.  It would hurt any parent to see their child in pain).  Jude having a genetic disorder did not mean that something bad had happened. In fact, we were blessed. We were given this awesome child (as his dad would say) who always has a smile on his face and is so positive about life. Once I started focusing on the positive things happening with Jude, I found so much happiness in our simple days at home.  Before I had Jude, I had my DVDs alphabetized in ABC order. Now I leave the DVDS and toys all over the floor because I am so happy.  I have a little boy that works so hard despite his setbacks and still learned to crawl.  I don't think I would have ever stopped and considered how truly amazing a mess can be!
  What seemed like the worst moment of my life, ended up helping me find my strength to fight harder for Jude and enjoy the small things.  I am forever grateful to him for giving me that gift.  Eric and I are so blessed to always be reminded of the small moments and a smile that brings out the best in every moment! :)


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Support RARE Disease Day!

       Two years ago, February 28th did not mean much to me. Now it means so much, tomorrow is Support RARE Disease Day! Tomorrow is a day I celebrate my son. A baby boy born with a genetic disorder that has been through 5 surgeries, 6 different therapies, and more doctor appointments than I will ever want to count. A few months ago, he had a gtube placement and a nissen fundoplication  that I thought would help and change everything for the better. He has started to crawl, mimic, sign, and do so much. His therapist and doctors have worked diligently to improve his conditions. He amazes us everyday, despite the new challenges of hormone testing, severe allergies, oral sensory disorders that present challenges for him to eat even pureed food, and surgery in March. Life is busy and difficult for Jude. Yet besides his difficulties, he is happy and so goofy! No one loves life as much as Jude! I hope today brings awareness and support to ALL children with RARE diseases. There is not a lot of information and research for the families and children affected by RARE diseases. In fact, I was sent home two days after I had Jude.  The doctors reassured us nothing was wrong, even though there was multiple signs identified in the hospital. We spent months fighting an unidentified syndrome. All RARE diseases need more research for parents, doctors, and therapist to become educated and prepared to take care of RARE children so they can have a better quality of life. Please support Jude and all children and families affected by RARE diseases!