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! :)


Sent from my iPhone

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!

Happy Birthday!

 

   Tomorrow Jude will turn one.  It does not seem like a year has passed since I held him in my arms for the first time.  I remember the night he was born, the doctor laid him on my chest and he fell fast asleep.  I had never felt so much love as I did in that moment. I still remember how small and warm his little body felt on my chest. It was the happiest moment in my life.
    After leaving the hospital, everyday brought on a new struggle for Jude. It was not what I had expected and many days it has been hard, but Jude has brought more love in my life than I could of known. He has taught me that I have been blessed enough to be chosen as his mother...someone who will motivate and bring so much joy to life. He has taught me that things can wait...the laundry will still be there tomorrow, but his silly baby giggles will be gone before I know it. He has taught me to not stress about the small things. Most importantly, he has taught me to see all the good in my life. Every single day he makes me a better person. He is my hero, my inspiration, my hope, and my sunshine. The past 365 I have been blessed with an angel. I do not know how I got so lucky but I know the next 365 days I will cherish, honor, and love every moment with him. Happy Birthday Jude! I love you more than you will ever know.
   

Superman

   

    This past fall Jude started doing a lot of new and exciting things. He started sitting on his own and eating baby food. I was over the moon with his progress and felt like crawling was not too far off! Then as the days and weeks progressed, Jude started having trouble keeping his food down. He was struggling to eat any baby food with texture. He would wake up at night screaming and I would find him with vomit everywhere. Finally, I noticed he was not gaining weight and I called his doctors. One of his specialist used her "magic" to get Jude in to see a GI specialist within a few days. 

      The morning of October 30, I was dressing Jude for his GI appointment when I noticed his jeans were loose around his stomach.  At that moment, I knew we were going to be at the Clinic for a while.  During the long and gloomy ride down to the Clinic, I fought back tears as Jude smiled and babbled in his car seat. Thirty minutes into our GI appointment, we were admitted into the hospital for GERD and failure to thrive.  Jude had not grown in length or weight in a month and half. Jude spent days undergoing multiple tests and having a NG tube put in for feeding.  The doctors decided that based off Jude's hypotonia, reflux, and other complications it would be necessary to have a G-tube and Nissen Fundoplication surgery. 

      After 6 days in the hospital, they sent us home with an NG tube and 10 days at home before we would have to return for his surgery.  While we were at home, Jude pulled out his NG tube twice.  The second time we did not have extra supplies and had to go to the emergency room to have it replaced. Unfortunately, it took going to a second emergency room to get the NG tube placed correctly. After watching Jude pull out his tube multiple times, in the hospital and at home, I was finally able to master taping the tube down so he could not pull it out! During the week at home, Jude had an appointment for his Family Plan. It was decided that Jude would benefit from more therapy and ankle/foot braces.  I was able to get Jude in physical, occupational, and speech therapy once a week. He will be fitted for his braces in a week and that will help with his growth and stability. 

      The day before his surgery Jude had a hearing test and appointment with his ENT.  After the hearing test, we learned what I had suspected...Jude did not pass any of the tests/assessments. The ENT also found fluid in his ears which could affect his hearing.  The ENT decided to put ear tubes in during his scheduled surgery and the audiologist would follow with a sedated hearing test to get a more accurate hearing result. 

      The morning of Jude's surgery, he woke us up at 7:30 with his giggles and babbling from the crib. I laid him in his favorite spot, between daddy and mommy. He hugged, kissed, and giggled with us until it was time to get ready and go.  The drive down was long and quiet. Finally, we arrived and we waited for an eternity. When they took Jude to surgery, my stomach turned and my eyes filled up with tears. I hated the thought of not being with him. Throughout the surgery, I received updates and spoke with his doctors. Dr. Siefarth came and told me the G-tube and Nissen were successful. Next, Dr. Anne informed me she was only able to put in one ear tube because the other was too small. Lastly, the sedated hearing test did show he has a low partial hearing loss. After five never ending hours of surgery, I saw my baby in the ICU. He was medicated and swollen. I knew the next few days would be long and painful for Jude. I spent the entire next day rocking Jude in my arms. In the middle of his crying, he lost his IV and it took 5 times before they were able to get an IV in again. At the end of the day, I was feeling extremely guilty for putting him through these surgeries. Everyone reassured me that it had to be done and it would get better. Over the next few days, he slowly started to improve.  He began receiving slow feeds through his G-tube and needed less of the pain medicine.  After five days in the hospital, we were discharged to go home with 9 doctor appointments, a sleep study, and scheduling appointments at the feeding clinic!   

      The past month has been overwhelming, scary, and frustrating.  Jude has a very busy and tiring schedule ahead of him.  Some days it is a battle not to be angry or sad that Jude has so many challenges and I do not have the answer to fix it all for him. As his mother, I am sure that I will search for that answer endlessly. Fortunately, Jude has been blessed with therapist, doctors, nurses, family, and friends that do not stop encouraging, supporting, helping, and loving him.  Even though he has been given so many challenges this past month he still is so happy and improving! I know I will have hard days watching him overcome his challenges but I will always find my strength in his courage and that unbeatable SMILE!