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!

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! 

Fall

Fall has always been my most favorite time of year... scarves, boots, football games, holidays, and pumpkin everything! A year ago, I started my third trimester and I was anxiously awaiting Jude's due date. I remember imagining trips home for the holidays, Jude and I spending our days going to pumpkin patches, and doing all the fall activties I love.  Though we have been able to do some of those activities, most of our days are unlike anything I ever imagined. I never imagined my fall days would be spent with Jude in therapy, planning his next surgery with his doctors/specialists, purchasing special vests and legs braces so he can learn to sit and stand, and trying new medicine to help his ever changing condition. As difficult and unexpected as it has been, some great things have happened. Now Fall will remind me of the first time Jude sat up. It will remind me of those chilly mornings we laid in bed under the covers and he would grab my face and kiss me.  It will remind me of watching the pure joy on Jude's face as he played music in therapy for the first time. These fall memories are far greater than anything I could of ever imagined. Life has become so much more meaningful and exciting with Jude.

Overcoming Fear

 No one can really prepare you for motherhood. It is impossible for anyone to describe what it feels like to have your heart outside of your body. That's what makes it impossible not to worry about your child and fearful of things that could or would happen in their life. When I was pregnant I remember driving to work one day and seeing teenage boys speed down the street and I thought to myself am I ready to deal with this... or even thinking about how his first day of school would go...or just hoping he would have a good life.  It never occurred to me that my fears would be so different. That I would be in fear that he would get really sick, have breathing issues, allergic reactions to basic foods, and so on. I've spent the better half of August trying to stop Jude from getting really sick. Breathing treatments, liquid steroid, humidifiers, Vicks, and you name it... I've tried everything but he still coughs. He is better but those nights he wakes up coughing uncontrollably and cries... I feel helpless. During this "cold", he finally got to try solids. I spent hours buying and making organic food that was the most non allergenic and easily digestible. Even with all my precautions, he still broke out in a rash all over his body. It's times like those that fear starts to overtake me. I start to question what I could do different so he won't be sick or if I should feed him any new food and risk a more severe reaction. But I have to take a deep breath and remember the gift God has given me... Jude.  The happiest, most content, easy going baby boy in the world who always pushes fear aside to overcome every challenge.

Keep your head up!

August has been Amazingggggggg! About a week ago, Jude started holding his head up! We have worked so hard for eight months and he did it! I have to say it is the best feeling to see him achieve his goal. The past few months have been difficult but this proves Jude doesn't let anything get in his way. I am one proud momma!