Special Indeed

Over the years, I have met several special families—all “special” in their own way. Regardless of what the disability that is part of their world is called, it seems we all relate to one another on a level that most parents never get to experience.

We have a unique advantage that sets us apart from other “typical” parents (not to discount or ignore all the amazing typical parents out there…).

But those of us who have had the opportunity to go beyond the call of parenthood and reach levels of selflessness that we never knew existed, all share a common bond.  We are just that—special.

One definition of “special” is:  having a specific or particular function, extraordinary; exceptional. We were born fighters, and we exude that spirit on to our kids. Just as the definition suggests, the ordinary people we were before our children were born, became extraordinary because of the parental challenges we have had to face with our child. Think about the kind of person you were before your child came into your world, and then think about the person you’ve become since their diagnosis. We all have grown, matured—changed. And as the saying goes, change is good.

It seems as though I have had many encounters with special parents that I’ve never met before, purely by “accident” over the years. We seem to gravitate to each other. Many of us are weary, worn out—and find each other for a few words of strength and encouragement just when we need it. Others may cross each other’s path just for a few moments and in those few moments, we find out that we have more in common with each other than with  people we have known for years…. Our hearts have a way of finding each other. In some silent, calm, invisible way, our hearts know one another.

Because our hearts have changed, too….and for most of us, when this change first happened, it was uncomfortable and exhausting. Then, after some time passed, we got used to this new heart… and we have become accustomed to the way it beats--the way it keeps us alive. It is different than before our child came along, but in a new, fresh way.  The way it used to function is no longer an option. Once you become a special parent, the chambers of your heart feel and act differently---they become stronger with each challenge that we have had victory over. 

Through all of my encounters—there seems to be a thread that connects us all together somehow, and it is laced with the love we have for our kids. It goes above and beyond any other kind of love we ever dreamed of experiencing. All of us agree that we would do anything—go anywhere—to any lengths-- to help our child. No matter what the price, we won’t give up looking for and finding new things—treatment, physicians, therapy, etc…that may take our child to the next level.

We have gone from ordinary to extraordinary—from average to exceptional.

The function of our being has a specific mission. I truly believe that many people go their entire lives searching for the purpose and true meaning of their life here on earth. We special parents have an awesome advantage—our special parenthood is the reason God put us here. He chose us to do the work we do, each and every day—to be the person He wants us to be—to care for our special child.

So, the next time someone asks if your child has special needs, I pray your answer will now have a fresh, new meaning to you—Yes, your child has special needs, and you are a very special parent.

Special indeed. 

~Maria

Just Cry

We all try to be superheroes for our kids---always be “on” and ready for the next thing they may need. We feel as though if we let ourselves come down from this constant mode of  “Special Parenthood” that things will fall apart—and we will be failures.

I know first hand that being in this state for any length of time is completely draining and saps you of every ounce of energy—which is not good for you or your child.

I firmly believe that sometimes we need permission to just let it all out—and call it what it is—raising a child with special needs can be extremely taxing on every area of our lives….our energy levels, our ability to parent our typical kids, our role as a spouse etc…

My prayer for you today is that you will give yourself permission to grieve if you want to grieve—to cry if you want to cry. I say it often, but at the moment we learned our kids were differently-abled in some way—we began the grieving process. Just as one grieves the loss of a loved one that has left this earth, we grieve the loss of the typical child we dreamed of. All of our typical hopes for our child’s future came to a halt, and we had to deal with all of the emotions, we didn’t have a choice. And at the same time, we had to jump into survival mode—learn everything about our child’s needs, get interventions lined up, make sure they had all the resources and physicians they needed, etc…

If you’ve ever had someone close to you pass away, you know how hard it is to deal with the pain, and how you never think you will survive it. Now imagine that on top of all the sadness surrounding it all, that you all of a sudden have to go right into survival mode. No time to think, no time to waste—our child needs us.

That’s what all of us did.

Ask yourself if you truly went through the stages of grief—shock, denial, anger, sadness, & acceptance. Did you allow yourself to feel it all?

 I think we all feel that we can’t allow ourselves to go back to any of the beginning stages of grief, or we will not be able to move on—which is not true. Many times, without warning, we can go in and out of these stages and still survive. We have all been there or will be there.

What I’ve learned in this process is that if we don’t listen to our feelings and let them out, they eventually, slowly, continually begin to seep out onto everything and everyone around us.

If you feel like crying—just cry. It’s OK.

Christian singer Mandisa’s song “Just Cry” says it perfectly:

“Why you gotta act so strong?           

Go ahead and take off your brave face

Why you telling me that nothing's wrong

It's obvious you’re not in a good place

Who's telling you to keep it all inside?

And never let those feelings

Get past the corner of your eye

You don't need to run

You don't need to speak

Baby take some time

Let those prayers roll down your cheek

It may be tomorrow

You'll be past the sorrow

But tonight it's alright

Just cry”

You’re allowed to grieve. You’re allowed to cry. It doesn’t mean you love your child any less; and it doesn’t make you a bad parent.

Once we let it out—as often as we need to—we actually become better parents. When we admit that we are human and we have bad days too, we can see our world a little clearer. We can then dream new dreams for our children. We can have new hopes, and find our new “normal.”

After we let out our emotions, we can see this new normal we have created in our families and within ourselves, and realize this new outlook on life is actually even better than it would’ve been if our child was typically developing. We see the world with new eyes and a beautiful, new perspective.

Acceptance is the goal, but without the sadness and crying, we can never fully come to see the light at the end of the tunnel.

Allow yourself to express all the feelings that come along with this amazing task that we were chosen for, and know that it’s ok to give up your superhero cape once in awhile 

...and just cry.

What's Your Story?

It meant the world to me that my daughter’s principal saw the importance of typically developing children, and many teachers, hearing their inspiring message of courage and strength in the face of their challenges. They both lead productive, full lives in spite of their disabilities.

One of the men, Chris, told the tragic story of how, at the age of four, he suffered an automobile accident that resulted in the loss of his mother,  and caused him to never walk again. What intrigued me about his brief message was that he chose to focus on the fact that we all have a story—no matter how old we are or how many challenges we’ve had to face, we all have a story—and we need to respect each other’s stories.

I was in awe of how true this is. Chris went on to say to the kids is that you never know what life story the student that may sit next to you may be.  This rang true for me I recently had the privilege of hearing two men that use wheelchairs for mobility speak about overcoming—Chaz Kellem and Chris Mielo. The beauty of their speech was not that they were speaking to a crowd of families of children with special needs, nor to an audience of people with disabilities. The real beauty, to me, was the fact that the platform that they had to speak to was an audience of mostly, (with the exception of my Olivia and a few other special children) typically developing children & their teachers in her elementary school. 

and other special parents like my husband and I…

We never know what other parents’ stories are---maybe they have lost a child, maybe their adopted child became part of their family was chosen because of his or her’s life story or history. Or they may even have a child that even though the child is older, they recently found out about his or her’s disability.

 I say often that no matter what the delay or disability our children have is, we all share the same feelings. One thing we all have in common is that we “get” each other’s stories. Pieces of our hearts have a common beat.

What I’ve learned over time is that instead of my heart continuing to ache over my daughter’s story in her nine years of life—I have come to embrace the place where she is today, and have grown comfortable with the changes in my heart. What once was a cause of pain for my heart has now grown into pride for the things that she has overcome—even if her story may be very different from her peers.

Chris and Chaz are an awesome example of even though you may be differently-abled, you can strive to do anything you put your mind to. Chris spoke of how his ability to play wheelchair basketball led to a basketball scholarship for college. Chaz spoke about his amazing employment at the Pittsburgh Pirates organization that he loves. They chose to focus on their strengths all throughout their lives, instead of focusing on the things they aren’t able to do.

Each and every one of our special children have strengths—we need to make a conscious effort in the midst of the multiple doctor appointments, school meetings and therapy appointments—to encourage our kids to foster these strengths. We need to see to it that we create an environment that enables them to press forward with the things that they are capable of doing.

The more I learn of the extent of Olivia’s brain injury, the more amazed I am at her continual ability to rise above all of her challenges. We definitely know that having her in our lives is a privilege, and never a burden. Her determined spirit allows her story to shine.

My prayer this month is that you will allow your child to soar—in their own unique way—in whatever it is that they are interested in and/or what they are good at. We know they are not typically developing, but they all have potential. They all can have an overcomer story. We never know where our efforts may lead them in the future. Let’s strive to bring out those positive abilities inside of them that allow their spirit to shine so that all those around them will want to know their stories. 

Isn’t that what life is all about? We all have a story—we all are different. We all can have an overcomer story.

 

Our kids, like Chaz and Chris, can change the world, one person at a time.

One story at a time.

~Maria

 Olivia with Chaz and Chris after their presentation at Poland Union Elementary School

 Visit them on facebook at Unbreakable Drive

Believe

I heard Christian singer/songwriter Mark Schultz say recently about a particular song he wrote, “Next to the song title it states that it is written by me, but I didn’t write it the words-God did, I just happened to be in the room at the time.”

That’s exactly how I feel about almost every word I’ve written. I don’t have a background or education in journalism or writing, and prior to 6 years ago, I had never had the desire to write at all.

Until one day He gave me the idea. Almost instantly, I had the desire and confidence to start writing. Thanks to the experiences with my Olivia, I had words burning inside me that I felt other special parents needed to know.  

A “wow” moment like that can only come from God. He not only placed the desire in my heart, He gave me the words He knows people need to hear---and He continues to give them to me month after month, week after week….

Now I’m sure some of you are thinking, “God could never use me, I don’t have anything to offer…He would never speak to me like that.”

Has God been telling you to do something you don’t feel qualified to do?

What is it that you started to do that you know could have only come from His strength and His love, and His guidance? Have you had “ideas” come to you that make no sense to your natural mind?

If He gave you the calling, He will see you through.

He will give you what you need—strength, courage, endurance, peace.

He did it for Gideon.

He did it for me.

He will do it for you.

Trust Him.

Believe.

~Maria

Through Their Eyes

We all want the best for our children—we want to see them progress in the areas that they struggle in, sometimes even before they are developmentally ready for it. I’m sure you know the stress that we put on ourselves when we get in this mode. We worry about the future, we make expectations in our minds that may never come to pass, and we stress out about the unknown.

Recently, we have had some unexpected challenges with my daughter, and it has been a rough couple of months. The stress of the issues she is having has been tough on everyone—except her. While my husband and I have struggled over decisions that need to be made, and what professionals to seek guidance from…my daughter has continued to be her bright, cheerful self. In the midst of it all, a very wise woman advised me to try to begin to see the world through her eyes, instead of seeing it through mine. My prayer for all us this month is that we will start to do just that.

All of us have been exposed to a wide variety of professionals that have benefited our children—physicians, therapists, teachers, aides, etc… We are grateful for their amazing ability to apply their knowledge and experience with us.  They help our kids’ progress in ways that we as parents could never do alone. At the same time, I firmly believe that no one knows our kids like we do. The potential in each and every special boy or girl lies within them—we need to believe in that potential and never give up on them.

I am determined to truly believe in that potential and allow it to grow. Even though we can’t control the future progress or setbacks they may have, if we start to see their world the way they see it---our eyes may be opened to a whole new perspective. Through every hospital stay, homework assignment, and therapy session, let’s commit to focusing on how well they adjust and cope to each and every thing that comes their way.

When we think about all the obstacles that our kids face every day, as parents, our hearts break when their disability hinders them in some way. But what I’m beginning to realize is that they don’t see their limitations as a hindrance—they know it’s just part of who they are. Their disability is not who they are—it’s just part of who they are.

I’m sure we all can recall the many times when our child exceeded our expectations. If we choose to focus on these times, think about how many more positive, productive days we would have. I say it often, when we focus on what they can do rather that what they can’t do, everything changes…for the better.

For example, my daughter recently started Tae Kwon Do classes.  Because the muscles on the left side of her body are very tight and her balanced is compromised, I was initially fearful that she would become frustrated with her attempts to keep up with her peers.

Well, as usual, she has exceeded my expectations—she doesn’t miss a beat with the other kids, she may move differently than they do, but she attempts every movement, and is determined to learn. In addition to her perseverance, the instructors push her to her potential, while being caring and empathetic at the same time.  Since it has been a few months since she began, I am not as anxious about her ability to complete everything the way I expect her to. Instead, I have chosen to see how proud she is of herself, and how much fun she is having! I see the class through her eyes.

When you think about trying to see your child’s view of the world the way they see it—what comes to mind? What are the things you struggle with as a parent? Do you dread social situations? Are you continually apprehensive about schoolwork? Are you worried about the next surgery or hospitalization? Whatever it is for you, know that you are not alone in the way you anticipate your child’s future.

If we begin to see our day-to-day routines through our special child’s eyes—the days will no longer be filled with worries and fear--they will overflow with hope. 

God Bless you on your journey,
 ~Maria

I Have Been There

When you are raising a child with special needs, you see the world in a whole new way—because our kids have changed the make-up of our hearts, the way in which we respond to things around us has changed. Things that used to bother or frustrate us, seem very minor now, situations or crises that arise, are not as catastrophic as they used to be. We are changed people, thanks to our extraordinary children.

I believe that God chose us to be special parents for many reasons. But the one that stands out for me the most this month is the fact that he chose us to be an example for others—to let our light shine, regardless of the struggles we have been through with our child, and to appreciate each and every moment, encounter, and circumstance in our life.

After all, others are watching—from the very new special parent, to the typical parent that is eager to learn everything about parenthood. Those parents we encounter on a day-to-day basis—either at work, at our child’s school, or picking up our cup of coffee in the morning—they are all watching. I use every encounter with a parent to show them that they will be OK on this journey, because I have been there.

I have been there when the outcome of a hospital stay is uncertain, and indescribable fear has taken over my entire being.

I have been there when I had to trust professionals that are encouraging me that my child will make progress—even when I could see no results.

I have been there when transitioning to pre-school and kindergarten feels like someone has taken our world and turned it upside-down, and we have to say our goodbyes, and once again, trust.

I have been there when the hopes and dreams that I once had for my baby girl were forever altered.

And I have been there when I learned to enjoy dreaming new dreams for my extra-special little girl.

Because we special parents have had more experiences than most parents, we have learned to take nothing for granted. We appreciate each and every goal our child has met—no matter how small. Each sound, glance, step, or day of stable health is considered a victory to us. And as we grow into more seasoned parents, we automatically become more grateful human beings. You see, the gratefulness, thanks to our amazing children, almost subconsciously spills over into every area of our lives. All of a sudden (or maybe over time, depending on your circumstances), the trivial misfortunes that come with this life don’t seem to bother us as much as they used to. We become people with not only changed hearts on the inside, but on the outside, too.

We’ve learned to be happy to be alive each and every day—to see each and every beam of sunshine that falls on us. To stop and not only smell the flowers, but to enjoy how our kids react to them. To truly see all that God has given us in the world around us, in our families, in our workplace—through all of our encounters.

When we set this example for other parents, our lights shine the most. They can see clearly then, that our children are not a burden to our lives, but a blessing. And that blessing is not only spreading into our families, but to all that we come in contact with.  Each and every conversation is an opportunity to spread the joy and love that naturally flows down from gratitude, and can ultimately change the way others see the world, too. I am in awe of the people that are placed into my path each and every day that I can spread this blessing to, through my daughter.

Just imagine what our world would look like if all of the special parents would share their “I have been there” moments with others, and in turn, spread the blessing.

My prayer today is that you will be driven to do just that.

Trust me, the results will be amazing—I have been there. 

We have to remember, all that we go through...He has been there, too...

Mark Schultz says it perfectly in his song "I Have Been There" 
http://youtu.be/fX20vnf5hH4


~Maria

Don't Walk Alone

 How connected are you with other families that also have a child with special needs?

Have you sought out groups or play dates with other families like yours?

If you’re not sure that you would be receptive to being with other special families, my hope is that my words will give you a start in deciding if now is the right time for you to seek out other parents.

Know you are not alone.

The sooner you realize that, the better you will be.

At the start of any special parenting journey, we all feel alone. We have all kinds of thoughts and worries that are specific to the fact that we had not planned for this journey…

We think, “I must be the only parent in the world that had to take this detour.” The truth is, most of us did not plan on taking this trip, and we do all we can to gather the strength to endure each minute of it. I know it is a very bumpy and exhausting road in the beginning, but the more steps you take forward, the smoother it becomes--And any journey in life is so much smoother when you are surrounded by others that have walked the same path.

Some special families are able to jump right into asking around for other parents that they can talk to shortly after they learn their child is not typically developing, and other families like to wait until they are completely comfortable talking about this unanticipated journey.

Either way, when you are ready, you will know.

I say it often that no matter what the disability that has made its way into your life is called, the feelings surrounding accepting it are all the same. They mimic the feelings that people go through that are mourning any kind of loss—Denial, Anger, Bargaining, Depression and Acceptance.Even if you are not totally and completely in the acceptance stage, you can still reach out to other people for help. Many families I have met over the years have told me that the reason they did not seek out other parents was because they didn’t feel ready to talk about the disability to anyone—let alone a stranger. And once they connected with others, they always end up saying they wish they would have had done it sooner.

We have all been in all of these stages at one point or another. And often, we go back and forth in and out of stages---we must remember that we are all human, and all of our hearts were changed forever when we learned our child had a disability.

Know this—you don’t have to have it “all together” to connect with other special families—none of us have it all together one hundred percent of the time!

  

One of the most important reasons we need each other is so we can all know and realize that we are not, in fact, going crazy—there are other parents in the world that are also on this journey that can often feel like a roller coaster ride.

I encourage you to ask your child’s physicians, early intervention coordinators, teachers, therapists—anyone that is guiding your journey—for suggestions and information on how to get connected to other families that may  not necessarily be on the exact same path as you are, but that have had the privilege of walking on this road that we are all on.

I do consider this journey with my daughter a privilege—because had she not been diagnosed with a disability, I would not have found out what true faith in God is, and would not have found many, many true friends that walk beside me.