Survival Mode Again...

Hello all,

Please pardon my absence....recently I had to go back into survival mode. This time, though, it had nothing to do with my daughter or her needs.

My husband was diagnosed with Burkitt's  Non-Hodgin's  Lymphoma. It is a rare, fast growing form of cancer, and the closest hospital that treats it is the Cleveland Clinic. He underwent aggressive, in-patient chemotherapy. We are so very grateful the Clinic is very close to where we live, and even though it is rare, they treat it often.

During the past 4 months I learned alot about who I am and the strength I have gained because of the all-to-familiar state of survival mode. I was surprisingly able to pick up on all the medical terminology, medications, side effects and how to recognize them when they came. I was able to just read my husband's face and know what he needed.

 I attribute this to the past eleven years of having to do whatever my daughter needed, whenever a crisis occurred with her. I became good at it, because of survival mode. I am grateful for the opportunity I have had thus far being a special mom , and truly discovering who I was meant to be.

God chose me to be a caretaker. To my entire family. I consider it a privilege to care for them and have the strength to endure this season of my life.

If  you are in the midst of survival mode right now...even though you may not feel it or see it, God is preparing you for the future and He will hold you up and teach you so many things along the way.

Trust Him.
His molding you into the person you were meant to be.

~Maria

Hope Filled School Year

September is here…and if you are a special parent, September usually brings concerns and tension for the upcoming school year. Even if everything at school went well for your child last year, the thoughts of a new teacher, maybe a new school or therapist, etc….can bring upon anxiety in all of us.

I have always done my best to take a deep breath and hope for the best with each school year. I strongly believe that if our mindset and attitude is positive from the beginning, we have reason to hope for the entire year. I have heard so many stories from families over the years that have had negative experiences with their school district when it comes to obtaining the necessary services for their child. I completely understand that the decision making during these days can be overwhelming. But at the same time, I know that if we do our best to have an open mind in this process of Individualized Education Plans, testing, specialists, and the frequent meetings we attend, that we will have a better chance of obtaining what is best for our child in the school setting.

I feel that having a “not go in fighting” attitude is very important. I realize that at times we all might not agree with every detail of school based services, but it is vital that we keep our emotions in check during this process…(I know because we have our individual opinions regarding what is best for our kids this is easier said than done).

My prayer for all of us this month is that we will have the strength to dig deep into our well of faith, and strive to see the big picture of school based services.

Understand that I am not suggesting that you don’t stand up for what your child needs in school, and making sure that the school following the guidelines of the Individuals with Disabilities Education Act (IDEA). But I strongly feel that we should, as special parents, make every effort to meet these professionals half way. After all, our kids spend many hours a week in their care.

I’m sure every parent reading this can think of at least one school professional that has make a huge different in your child’s life. ( I know I can think of many). We must remember that they chose this profession to help and support kids—the teachers, therapists, aides, and administration. The ones that stick out in our minds are what we need to focus on…and hold on to the hope that these angels that were sent to our schools will continue to surface in our children’s lives.

We were chosen by God to be the parents of differently-abled children. Because of this, we were born with the ability to have strength that we never knew we had, and advocate for what is best for our kids. In addition to school-based services, most of our kids have multiple therapy and physician appointments after their school day. So in order to have the stamina to assist them with school demands as well as get through these appointments, we have to prioritize what we expend our energy on.

I’m a huge fan of saving my special parent energy on what matters most based on what the day or month will bring. I hope and pray that this school year for your child and for you will be filled with many positive filled days… Days when you have a clear picture of what you have the ability to accomplish with all the professionals in your child’s life, and have a vessel of reserved energy that you can draw from when you need it.

~Maria

Angels Umong Us

Whatever kind of delay or disability that your child deals with daily, I’m sure part of your week is spent with some kind of pediatric therapist—Speech and Language, Physical, Occupational, Auditory Verbal, etc.... You have learned from these experts how to interpret certain aspects of your child’s development. They probably have become like part of your extended family, and have taught you how to help your child at home reach his or her highest potential.

     Think about it---these individuals, maybe many years ago, chose to go to school to learn about how to help our kids meet goals and be productive regardless of disability, before some of them were even born-- That fact never ceases to overwhelm me.

     Throughout the past eleven years with the journey of cerebral palsy with my daughter, we have had the privilege to encounter several therapists. The most appropriate descriptive word I think describes them all is angel. My favorite definition of angel from Dictionary.com is “a person who performs a mission of God or acts as if sent by God.” I firmly believe from the depths of my being that we special parents were chosen by God to parent our kids; and He has sent angels on a mission to provide therapy for our kids—in home, outpatient, inpatient, and in school. Isn’t that awesome? These angels existed in the therapy world before our kids were born, and they so beautifully make themselves visible to us when our kids are in need of their help.

     The angels we have had in our lives thus far all seem to have the same personal qualities that are divinely distributed—passion, determination, compassion, persistence, hope...all come to mind instantly. Who are the angels in your child’s life? How did you find them, or did they find you? Do you ever wonder how you helped your child succeed before they came into your world?

     From our experiences, the speech pathologists hear things we don’t hear, the physical and occupational therapists see things we don’t see. They all make us look at and listen to our kids from their unique heavenly perspective. They offer suggestions and plans that challenge our kids, but at the same time offer us hope and inspiration for their futures.

     All of my daughter’s therapists are an important part of her team—they all have her best interest in mind. They openly answer questions my husband and I have regarding her future, and our aspirations. Their words are definitely sacred; we feel God definitely placed them in our path to guide this part of our journey.

     I feel compelled as a mother to share some facts regarding one of Olivia’s angels that makes herself apparent to the human eye as an occupational therapist. She is definitely on a divine mission. Linda Ankerman is a friend of our family, and for the past ten years, she has blessed us with her knowledge, skills, heart, and love… every month, without asking for anything in return (in addition to working a full time job). She is the epitome of what it means to be a servant of God—her unselfishness amazes me.

     So the next time you have a bad day and are thinking “Why me?, Why my  child?”, just remember He thinks so much of our special kids that He has sent His angels to personally take care of them. What could be better?

~Maria

Rainbows of Acceptance

 I have come to a place of accepting the disability that has entered my daughter’s world, and embracing the person that she is. I have learned to stop mourning the person she might have been, and instead grown to celebrate the amazing, smart, beautiful girl she is. I recently realized that there are several stages of acceptance, and I think I have graduated to the final phase of it.

You may be reading this thinking, “Wow, I’m not ready to celebrate this disability that is part of my child just yet.” And that’s OK...

My daughter turned eleven this month, and I am just starting to embrace this season I am entering. It’s actually a freeing feeling. I spent many days in the “why me”, “why her” stage….and I am ready to start a fresh new path of this  journey that I have been on, and finally see all of the beautiful landscape that surrounds this life of ours.

Wherever you are on your journey, my prayer this week is that you learn something new about the stage of accepting the disability that has become part of your world, and look forward to your many celebrations that are yet to come. This, like all of the other stops on our path, doesn’t come quickly or easily. It has many benefits, and I have learned that you need to go through many twists and turns in the road to get to just the perfect angle to see all the beauty that surrounds us.

It’s like the times when you are driving, and happen to look up at the sky—and you notice all of the hues that are encompassing the clouds. Sometimes there are shades of pink, purple, and orange that take your breath away. In those moments, we see beauty that could not have been created by anything on this earth. It happens naturally, thanks to the weather conditions at the time. These moments usually happen after a storm, when there is just enough moisture in the air, and the sun starts to reappear. Sometimes, you may even catch a glimpse of a rainbow.  They happen so fast, that if you don’t take a minute to shift your focus from your destination to the beauty that is right in front of you, you may miss it.

That’s what we tend to do as special parents. We spend most of our time and energy thinking about and focusing on the destination and the questions that fill up our days—“What will my child’s adult life be like?”, “Is this the decision that is best for my child’s future progress?”,etc…..

We spend so much energy on the journey looking toward the future that we don’t see the present. And the precious present is what helps us accept and embrace each and every moment, rather than worrying about the future.

We naturally are the best crisis-driven parents on earth. We have weathered all kinds of storms, and we are always ready for the next challenge. It’s part of who we have become. But I have realized that the best things have come for us as a family after the biggest storms. I have become an expert at looking for a rainbow in the midst of the thunder and lightening that is an automatic part of special parenting.

The most amazing thing I’ve realized is that once you get in the moment, catch your breath, and look up at all the wonderful things your child is capable of doing, you get to enjoy the beautiful landscape of your life.

Not just for the moment.

But for a lifetime.

Once you start accepting and embracing your child completely, you won’t have to look very hard to see the rainbows, they’ll surround you.

~Maria

Finding Your Team

I don’t know much about sports or what skills are needed to be a coach of a particular team, but I do know what it means to need a strong medical/therapeutic team to help you through the challenges and victories of raising a child with special needs.

I speak to families frequently about the struggles and the triumphs they have encountered on their search to find a team of professionals that truly want the best care for their child.

The initial team of professionals that you encountered in the beginning may or may not be the same people you have on your team currently.   But whatever game of your special parenting season you are currently in, I hope my words will guide you as you continue to scout out players for your team of professionals that have the same goal in mind--your child.

My husband, Michael and I are the head coaches of Olivia’s team. He is my rock when I need him the most, each and every day I thank God that I am coaching this team with him.  

From my personal experience, I truly feel you learn and grow as a parent during your search for the right team members. We all go through some kind of trial period…trying to find just the right skills and experience that fit our family. As you get to know your child’s condition and their unique needs, you end up searching and finding the right partners that have the same focus as you, and can help you with each step. If that’s where you happen to be today as you read this, hang in there-- it’s all part of the process. Your teammates are out there somewhere, waiting to be recruited.

Our assistant coach is Olivia’s physiatrist from Akron Children’s Hospital. He spends time with us when we see him; like no other professional ever had before we met him…he truly cares about each step of our journey, and our Olivia. From our very first appointment with him, through his humble, gentle words, he made it very clear to us that we were the most important part of Olivia’s team. His honest guidance and expertise has helped us see our vision and goals for Olivia’s life ever so clearly.

Our specialty coaches include other physicians from Akron Children’s, and professionals from St. Eilizabeth’s and Hanger Orthotics.  We searched for a few years to find just the right mix of expertise and skills that we thought would help us win more challenges of her disability. They all are on the same page with her treatment, and they all care about her future.

Whether you have a team for your special child or not, I believe it is important that I share the success we’ve had in finding just the right fit for our family. It did not happen over night, and we have learned a lot about forming a good team over the past few years. 

I encourage you to seek out other parents that are also searching for a team, and share ideas and success stories. We all need each other through every game we have to play, and every defense we come up against.

As special parents, we cannot be complacent and just sit on the sidelines and let the rest of the coaches take the lead in our child’s care. We have to consciously take the effort to be the leaders of our teams, no matter how tired our journey may make us at times.

The strength that is required to endure season after season with our kids, I feel comes directly from them. Special kids have the most resilient spirits, and we need to allow them to shine on us when we need it the most, so we can fight each and every battle and lead our entire team to more and more victories.

We feel so very blessed to have all of our coaches we need, in the form of many wonderful medical and therapeutic professionals.  Whatever disability has become part of your world, and wherever you live, know and trust that there are professionals waiting to be on your child’s team…to get you that next victory. 

I recently started my own Special Needs Consulting Services. You can find information on my FaceBook  page-  "Help and Hope Special Needs Consulting Services"

~Maria

Choose Hope

 Christopher Reeve said, “Once we choose hope, anything is possible.”  We special parents have good days and bad days with our children, but our best days are those filled with hope.  Hope for the here and now along with hope for our child’s future.  I feel we must understand that hope is a choice—people that don’t ever have to think about reaching inside themselves to grasp some hope to get through a day probably don’t realize it is a choice.  The alternative would be focusing on the negative, the “what ifs”, the “cant’s”, or the “wont’s”...as a parent, those words cannot be in our vocabulary in order for us to pass on the light of hope that our children so desperately need, so they can dig deep within themselves and call upon it whenever they may need it.  It would be making the conscious choice to dwell on all the things our kids can’t do, instead of the things they can do.  If that is what we chose, what kind of message would we be sending to our children?

      

With the multiple physician and/or therapy appointments we take our kids to, all too often the focus is on what our children are not capable of, and a professional’s opinion is usually all we have to get us through any particular day.  While many, many professionals give us hope, there are many days we have to have our own sense of hope when those appointments don’t go the way we had expected. That “piece” of hope is based on what we know our children are capable of (after all, no one knows our kids better than we do...), not what the expert we see on any particular day has to say about them. If you are surrounded by family and friends that are hopeful, it is much easier to “find” our hope when we need it...

      

Our kids will always look to us for an example, for empowerment, and encouragement...if our light of hope would dim for any reason, we may be unwillingly deterring their progress that day—or we may be altering their self esteem and not even realize it.  We must lead by example and look towards them with positive expectancy. 

Our kids have dreams and wishes just like all kids; obviously, we have to be realistic as to not frustrate them, but if we expect great things for them, they will always be sure of themselves and know that they can and will do anything they want to....and if their body or mind limits them in any way, they will always have our loving support and encouragement that stems from that constant light of hope inside us. That hope can present itself as many different things to different people at any given moment—it may appear to you when you see your child do the smallest thing that you may have been working on for months, or when they have met goals above and beyond your expectations—that unbelievably wonderful feeling that comes over you that you just can’t quite explain to someone in words (I know the feeling very well!)...That is the feeling of expectancy beyond belief. That is what our children need more than anything at times. That is the hope I’m challenging you to find, or if you have already found it—embrace it with all of the energy inside of you... I know first hand that the smallest light of hope can get us through even the darkest day...have you made your choice?   

Choose hope and anything will be possible...

~Maria

Flip-Flop Moments

During this hot, sun-filled summer,  I am very grateful for flip-flops. Yes, flip-flops. I am very grateful for the skill it takes to keep them on your feet, and the sound they make as you walk. I never used to be so fond of them—until last year.

 I’m sure all of you reading this have had the experience of wearing a pair of flip-flops. And I’m also sure that it is an uneventful, subconscious experience for you.

Well, for my daughter, it was a learned skill that took a few weeks, and since she is used to always wearing tennis shoes with braces, it was a huge accomplishment for her.

So, for weeks last summer, I allowed her to wear them in the house only, just so she would take her time and not fall. Even though she was insistent on trying them, I was hesitant because her therapist voiced how awful they are for her feet, and suggested it was not a good idea. But because she wants to be just like her friends, she wanted to learn. So how could I deny her the right to be like everyone else?

Recently we had to run to the grocery store for just a couple of items—and she proceeded to the door in her flip flops—and for once, I did not object. When she realized I was going to allow her to wear them out of the house, she was elated and thanked me the entire way to the store!

The simplest thing that we take for granted all summer long, brought her such joy.

We went to the store, and she took her time, proudly looking down at her feet often. And, in the midst of the hustle and bustle of the people in the store, a quiet miracle of our own was occurring. I started to cry a soft, grateful, joy-filled cry, right there in the middle of the store. My heart was full as I watched her accomplish this big task.

This week, what are your flip-flops?

What are the things that have happened in your son or daughter’s world that would definitely be a miracle to you and your family?

If you are unsure, my prayer this week is that you will be able to recognize when something remarkable has happened, no matter how insignificant it may look to the world—and want to celebrate and share it with others! Our kids’ successes will motivate other special parents to keep hoping, and look toward their next “flip-flop” moment.

I know some special moms that are patiently waiting for their child to put a simple sentence together, while some are praying for the ability to sit up or walk. For them, a new word or a strengthened muscle can turn into a day of celebration.

I also know a very special mom who is currently waiting patiently for her son’s miracle while praying his new blood will save his life.

Yes, save his life. So, I’m certain she finds way to celebrate each tiny accomplishment or good report from the doctor during his very long hospital stay.

Each hope-filled day breeds the next, and the next….and each celebration makes her a stronger, more special mom.

I feel it is so important for us to share our special children’s astonishing miracles with “typical” parents—not so they will feel pity for us or our kids, but so they will in turn be grateful for all of the things their kids do automatically, and feel very blessed that they do. Our kids were put on this earth not just to make us better, stronger parents, but to show others their exceptional, silent strength.

We all have to be ready and waiting for these moments, and not give up hope that they will happen for our child. All of these miracles are unique in their own way—some may look more important than others, but at the root of them lay the same thing—special parents’ hopes coming to life before their eyes--Moments that we have prayed for coming to fruition can’t be taken lightly, and deserve to be celebrated.

I firmly believe that faith is the basis of things we hope for… So don’t be afraid to have faith—it will breed hope, and will automatically set the stage for your next flip-flop moment.

Are you ready?

~Maria

“Faith is the substance of things hoped for; evidence of things not yet seen” Heb. 11:1