Most people have a love/hate relationship with hospitals. We hate to be admitted into one, but love how we can regain good health from one as a result of treatment. They can be overwhelming, intimidating places, especially the Emergency Room (ER). Unfortunately, I have been in the ER more often than I care to remember, especially over the past 7 years. My colon cancer was diagnosed there. I was also there twice with my Dad due to complications from his lung cancer treatment a few years ago. Mom was diagnosed with pneumonia in the ER last Fall. And Brian has been admitted twice in the ER over the past 8 months. With all of this experience, the high anxiety and uncertainty of the outcome still remains each and every time there is an admission. Yesterday morning was no exception, when I noticed blood in Brian’s urine and knew I had to bring him to the ER at our local hospital, St. Barnabas. I knew what they were going to have to do: blood labs and a renal ultrasound, and it would have to be done under some type of sedation. I also knew that I would have to pack a “bag of tricks”, which would include: snacks, an i-Pad, and i-Pod with several tunes. Being prepared is mandatory in this situation for both Brian’s sake and my own. Questions for doctor- check! Clippers, manicure scissors and comb to perform grooming activities while Brian is under sedation- check!! Blood labs from ER doctor and combining them with other physician lab requests both locally and out of state while under sedation – mandatory!! I was even able to get a urine sample from Brian and bring it to the ER because I knew they would need one. Our bag was packed and we were ready to go! Ten minutes later we arrived at our “second home”, all the while I was praying

for Brian, the hospital staff, and myself, for a medical resolution and courage, because these situations call for such measures. I sure wish Jim had been with me, but he was in Dallas on business. Emergencies have that funny way of coming up without warning and have no regard for business trips.

Brian was remarkable during the transition out of the car and into the ER, with the exception of just the first few seconds. He eventually walked in like a brave soldier going into battle and within minutes we were admitted into a treatment room. Our nurse, Tara, couldn’t have been nicer, a perfect pediatric nurse, so engaging with Brian and compassionate!
The ER physician was also very affable, listening carefully to what had happened, then  ordered the blood labs and renal ultrasound. I stressed  the need for Versed, a drug that provides concious sedation, that would allow the staff to draw Brian’s blood and do the ultrasound without issue. Fortunately, Brian had had Versed previously. I have also had the great fortune of having had Versed myself when my port was inserted for chemo. They really should call it “Sublime” or “Devine”, because that is EXACTLY what this stuff is! The world is wonderful, funny, and you really don’t care about anything at all under its influence. Since this was Brian’s third go around with Versed, I knew he would definitely be very relaxed for his procedures.

Brian was so relaxed, that I was able to trim his finger and toe nails, AND a little bit of his hair, after the blood draw and ultrasound. What a difference and a dream to have an anxiety-free experience!  The nurses drew the blood with Karen Carpenter singing on the i-pod I brought. Someone suggested a scented candle, lol, the hospital ER just doesn’t get any better than this! But it actually did, with the arrival of Caitlin, a Child Life Specialist, who is part of the Special Needs Ambassador Program (SNAP) in the Pediatric Emergency Room at St. Barnabas and pictured above with Brian. What an angel!

We had the great pleasure of meeting Caitlin the last time Brian was in the ER.  She was so calm, collected, and wonderful with him!  Caitlin had her own iPad of videos/ games to share with Brian. She brought us drinks and snacks, and sat with Brian while I took a brief break. Caitlin also assisted the nurses and myself in holding Brian steady when his blood draws were done. She even took Brian on a stretcher to the radiology department and remained with us until the ultrasound was completed, then wheeled Brian back to his room. Talk about first class service! Most importantly, Caitlin was compassionate, understanding,  and a steady, reliable presence throughout our entire time in the ER. She is the perfect advocate and liason between patients and the medical staff. What a comfort and blessing it was to have Caitlin there yesterday, especially since Jim could not be. Her presence clearly offers reassurance to families that they are not alone in such a stressful circumstance and their physical and emotional needs will be taken care of every step of the way. I believe that is exactly what angels do and they do exist in the ER!

Until we meet again..thanks for reading!  🙂

PS- Brian’s renal ultrasound was unremarkable,  but the red and white blood cell counts were high, so he is currently being treated for a urinary tract infection. We are still awaiting the urine culture results…

Stupid Cancer, The Unwelcome Visitor who will effect approximately 75% of families in their lifetime.   Thankfully, treatments continue to evolve and improve the outcomes for those who are afflicted. I am forever grateful for being one of those really lucky Medical Miracles and am reminded of this fact every time I look at the above  picture, taken 7 weeks after my last chemo infusion on Mother’s Day 2010. I realize this ending is not the same for everyone who goes through treatment. It’s horrible and totally unfair.

I know of 7 people currently going through cancer  treatment, one of whom I learned about today, is a Mom who has a daughter with special needs. And this is her SECOND battle with cancer. It’s unfathomable and unquestionably the most cruel of blows. My heart breaks for this wonderful lady who is truly so courageous and whose main concern is only for her beloved daughter. I pray for her healing, along with our other friends, and for a cure for cancer in our lifetime.  I ask that you please do the same in honor of all current Cancer Warriors and Survivors. Finally, hug your family and friends a little tighter, and tell them you love them daily, for tomorrow is not promised for any of us….

Until we meet again.. xoxo xox

The daily exploration of Brian’s packback after school can be an adventure, because you just never know what you are going to find! Sometimes it’s an arts and crafts project, or a special notice of an upcoming event, but almost always, there is a notification from Brian’s teacher or therapists detailing  the highlights of his day. I always take a deep breath before reading such notes, as not all of them have been positive. Brian has been at his current school for a little over a year and it has been a time of great transition and adjustment for him. New people and routines took a long time to get used to, and with it, a lot of behaviors and a lot of phone calls! The staff’s unwavering devotion and persistence to help Brian adjust to his new environment and learn  has been nothing short of incredible. We are grateful beyond words for all that they do to help Brian succeed.

Today’s school note was a great one! Teacher said that Brian had a very good day, was successful in his work, and actively participated in a game with his classmates called “find your friends”, seeking them out, and finding some of them! My heart was so full when I read this….

Brian has come so far in this regard….there was a time when he had absolutely no interest in other children whatsoever. He didn’t want to leave the house in the early years and he didn’t even like us to hug him as a baby. Those days were dark, heartbreaking, and overwhelming. It was hard to conceive back then that our son would ever have a joyful life and want to have others to share it with based on his distress and simultaneous lack of engagement with people, places, and things.

But here we are today and so much has changed in the past decade! In Brian’s own time, he is seeking friends out and has become more sociable. He loves to wave to people, shake hands, and hug them to death sometimes, lol. I believe Brian would be a great friend if he just had the words (another irony, coming from such a long line of talkers!). Who knows how that could change too over this next decade, as Brian’s communication will hopefully continue to improve with his speech app on the i-pad. He may even speak for the first time! Hope really does spring eternal…

I love the line from the movie, It’s A Wonderful Life : ” No man is a failure who has friends”. At the end of the day, it is our relationships in life that count the most, more than material possessions and accolades. Our friends are special gifts from God who bring joy and comfort throughout all the seasons of our lives. I am glad that Brian now seeks that same joy and gives it back in ways that money can’t buy. 🙂

Until next time…thanks for reading!

They are the backbone of goodness in our society, sharing their time and talents with so many! These folks come from all walks of life and have varied experiences. They are kind-hearted and wish to make a positive difference in the lives of the children that they serve. They are the fabulous  volunteers, and without them, many social and recreational activities would cease to exist.  Three cheers for the volunteers!!!

The alternative of sitting home is a frightening prospect to consider… Brian’s “default setting” would be to sit home and play on the i-pad all day, literally, if we let him, and that is neither good for him or ourselves.

Extracurricular activities enable Brian to engage with the community, practice social skills, and develop hobbies. I love meeting up with other  parents to socialize with and to exchange information to help our kids. The reality is, I need the recreational activities as much as Brian does. No man is an island, and it is too easy to isolate on the special needs journey. We need each other for friendship and support.  When our own tank is full, we can in turn give more freely to our kids, while taking care of ourselves and having fun while doing it.

I am so impressed  by the large number of high school and college students who choose to spend their free time giving to those who can use a helping hand. Sometimes young people get a bad rap for their apathy and self-absoption, but not the volunteers that we’ve encountered! It is clear that their families have raised them well and they are truly upstanding citizens and in some cases, they become long-term friends.

With all of the  crazy things that go on in the world and the constant/negative news reports, it is so refreshing to hear the GREAT news that the volunteer movement is alive and well! Long may it live and prosper! And thank God our kids have these social and recreational opportunities.

Pictured here is one such volunteer, a young man from Princeton University, who gave his time and attention to Brian yesterday during the Princeton Disability Awareness Carnival, a bi-annual event that allows children with special needs to experience a whole host of fun recreational activities for 5 hours . Each child is assigned to a student, who is their buddy, teacher, and friend. As you can see, Brian had a great time, and so did his wonderful mentor! This picture is definitely worth a thousand words…

It is an extraordinary example of why volunteers are so very important to our kids, to the families, and to the world are large.

Until we meet again…thanks for reading! 🙂

 

Here’s a picture of my Lil’Harry Potter in his classroom 5 years ago. It’s one of my favorites! That engaging smile, always eating , and cute buzz cut gets me every time! Brian has had quite the colorful educational career with its twists and turns, great teachers and not so good teachers, like most special needs students. The initially dreaded IEP meeting has now become more  of a collaborative experience in order to make sure Brian gets the resources that he needs to be the most successful. This was not always the case, especially in the early years when we were still grieving and processing Brian’s additional diagnosis of autism at 2 plus years old and all that comes with it. Those initial meetings felt intimidating and were not always in Brian’s best interests. Advocacy was born through a baptism of fire. Time and experience have helped us to  more effectively communicate our son’s needs and  to set the tone that we truly know Brian better than anyone else and always did!

Now the actual IEP document itself…well, that emotes a different response entirely, especially in the privacy of our home office, as I carefully read and ponder its meaning. The most recent one just came in the mail yesterday and I am still reading it, thinking it through. There’s a lot of effort that goes into the IEP, so many goals, so little time, and from my vantage point, not a lot of mastery of them. Brian’s skill sets are mostly “emerging”, “progressing”, but few are mastered overall. I think the goals are

appropriate, after all, I am part of the IEP Team that decided they should be included  in the first place. And Brian’s current school staff are doing a great job and the best that they can to help Brian learn. So what’s happening then? One theory I have is that Brian is too cool for school. I really think that he chooses not to  always show what he knows, just because, you know, he’s cool! I believe this  theory because Brian does have very strong receptive language skills, will absolutely attend to something when he is motivated, and will communicate on his I-pad directly whenever he feels it’s a benefit to him. We see this all the time at home!  This is not to minimize Brian’s multiple challenges and how they have a major impact on his learning, which they most certainly do. Work avoidance and a lack of motivation are areas that Brian struggles with, further compounded by puberty. We have learned over this past year not to underestimate the power of testosterone and all that comes with it, including an attitude and unwillingness to cooperate and do what is necessary.

Thank goodness for behavior plans, motivators, and the wonderful people who implement them, such as the school staff and Brian’s home therapists. I call them God’s Chosen People, and they really are, as it takes very special folks to do this type of work. They have also saved my sanity on certain days, especially when Chardonnay was not an option, lol! I But seriously, they are the most essential members of Team Brian and we would be at such a loss without them.

There always is and always will be the annual sadness that comes with reading the IEP document. It is part of the special needs journey that is inescapable , but it by no means defines who our child is or who we are as loving parents. It just reminds us that we are human, love our kids, and only want the best for them. We appreciate progress, one step at a time, and continue to learn to cut ourselves and our kids a lot of slack, by having very flexible expectations. It’s one of the most valuable lessons I have learned from my Precious Marvel. And you can never be too cool for school, just ask Brian! 🙂

Have a great weekend, Everyone, until  next time…..

 

 

 

 

 

 

 

 

 

 

 

 

The Foe of Scoliosis, The Redeemer of Spine Curvatures, and  it’s always got your back like a loyal friend. Presenting the one and only….Providence Brace! It’s been Brian’s nighttime companion for a little over a month now and their relationship has definitely had its ups and downs.

Brian has grown almost 4 inches over the past year, necessitating the brace. The orthopedic surgeon had forewarned us of the likelihood of Brian having scoliosis about 8 months ago when X-rays showed the curvature of his lower thoracic/upper lumbar region of his spine.  I was able to clearly see the curvature  progression myself on the subsequent X-rays- it was undeniable and painful to see. The curve started at 16 degrees…Doctor said that 25 degrees was the magic number for bracing and Brian wore his brace for the first time on St. Patrick’s Day.  Coincidentally, my final chemo infusion for colon cancer was on the same day 6 years ago. I completed my journey and Brian was about to begin his- the irony was not lost on me.

As you can imagine, the first week was rough for Brian to sleep. He woke up frequently, was irritable, and sweaty from the brace, even though a bonus prize of 2 special undershirts to keep Brian comfortable and prevent rashes came with this $3000 customized contraption. In a few weeks, however, he developed an awful heat rash, so we switched to under armour shirts, then the rash came back again, with a terrible itch. My husband saved the day when he came across a Gold Bond spray that thank  goodness, has been working very well so far. Brian is finally sleeping much better too, so thank God for that! Brian has been stoic in putting on his “armor” nightly, and doesn’t complain perse, but what my husband and I both notice is the sadness, almost resignation , that Brian displays when we strap him in each night. His big blue eyes peer at us intently as we go through this nightly ritual ,wondering if we might change our minds and not have him wear this thing.

I tearfully lamented to a few friends this past week that bracing Brian has been hard for him and hard for us. I greatly appreciated their listening ears because I’ve been really struggling with this. Even though we know that “this too shall pass,” things will get better”it’s for his own good”, etc. and all of those other platitudes. He has been wetting his bed frequently too, a silent, yet loud protest to the brace. Yes, I’m sure this will pass as well….

In the final analysis, anytime our Precious Marvels go through challenges, we parents are in the trenches with them, feeling their pain, wishing we could make it go away. It is instinctive to protect our children not only from harm, but even from helpful tools, like a Providence Brace, because it is initially daunting, even though it is for their own good. We will eventually look back with pride at how Brian once again conquered another new challenge, but in the meantime, we are relying on Providence to see us through one day  and one  bracing at a time….

 

 

 

 

 

 

 

 

 

 

 

 

Brian’s Ode To Spring

Eating and Swimming, With T-Ball Tommorow

A Road Trip to Baltimore- It’s Really Not So Far, No!

Drinking My Juice Box On The Big Playground Swing

These Are A Few Of My Favorite Things

When The Doctor Pokes And The Dentist Cleans, And I’m Feeling Mad

I Simply Remember  I’m Off For 9 Days, And Then I Won’t Feel So Sad!

Stimming And Smiling With Toys And At People

Signing For “Crackers”, While Eating Another Handful

Home Therapy Program Gives Brian His Wings

These Are A Few Of His Favorite Things

When The Textures Change, And Transition Comes, And  There Is No i-Pad

I’ll Try To Remember That This Too Shall Pass, And Then I Won’t Feel So Sad!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Welcome to Marvels and Moxie and my inaugural blog! My name is Brenda and I am the Proud Mama of a beautiful boy named Brian. It has been my heart’s desire for quite some time to share about my journey with my marvel, Brian, (who certainly has lots of moxie!) with the hope that my experiences in raising a son with special needs will be an encouragement, humorous, and helpful for those of us whose lives have been blessed by  these Precious Marvels!

Brian has Down syndrome and autism, is non-verbal, and  LOVES music, eating, water, and Frozen! Brian uses sign language and a communication app on his i-pad for speech. He also has severe sensory integration issues, experiences great difficulty with transitions, and gives the best hugs in the world! Brian requires assistance with all activities of daily living, had open heart surgery at 3 months old, wears glasses and orthotics, and was recently diagnosed with scoliosis requiring  him to wear a back brace at night. Despite all of these challenges, Brian inspires my husband, Jim, and I, with his perseverance, resilience, and total trust that all of his needs will be taken care of.  I have learned this lesson often from my son throughout his 12+ years of  life and still continue to do so. He has been my Best Teacher and continues to show me things that I am capable of  that I would have never dreamed were possible before, such as being an Advocate, Medical Expert, Social Director, Therapist, and my favorite role of all-  his Mom! ♡♡♡

Until we meet again, thanks for reading! 🙂