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