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.

Special Sense

I often describe raising a child with special needs as a journey—one with many twists and turns. One definition of “journey” is:  “traveling from one place to another, usually taking a long time.” When you begin, you don’t really know how long your journey will take, or exactly what it will look like. But very early on, all of the special parents I know make the choice to endure it for their child no matter what lies ahead.

While it is almost impossible to anticipate a twist or turn, we have a special parent sense that only those have had the privilege of parenting a child that is differently-abled. This sense is almost indescribable—it’s just there when you need it.

It’s not something that you receive instantly; I really believe it is mastered when we go through “survival mode.” I say it often, but this mode is when you are doing everything and anything to get your child towards the next goal. You research, ask questions, get second opinions, and usually don’t sleep much. We don’t realize it at the time, but we are mastering this unique instinct that is specific to our child and his or her needs.

I spent many years in and out of this mode to know that you can’t stay there long—it drains you, so you have to take time to rest and ride it out.

My column more often than not focuses on making sure you rest and sit still on the side of the road once and awhile. We need to refuel and refocus….

But at the same time, I learned first hand recently that sometimes when we least expect it, a hairpin turn can come out of nowhere and thrust you back to your first days on the journey.  It takes you by surprise, but you are somehow able to move forward. The good news is, that because we were chosen for this amazing task, we can confidently take the turn. The special sense just shows up. You go into mode, you don’t miss a step.

Because of my daughter’s disability, her balance is compromised. She uses every morsel of energy to stay up while walking, even though on the outside, she appears to be just fine. She did not use her orthotics to walk very often this summer, and we were on our way to trying to wean her out of them…until our unexpected turn showed it’s face.

She was walking barefoot down a flight of stairs, and fell as she attempted to compensate through the last few steps. She’s not a stranger to falling, so we anticipated she would have a few bumps and bruises and she would be fine. But like most hairpin turns, it was not a “typical” fall.

She ended up in the emergency room with a concussion—and while we were there, this sense of being strong for her just resurfaced—I really didn’t have to think about it.

I didn’t realize it until the ordeal was over—but I’m not the only special Mom that has it—you have it too.

You see, you don’t know how to begin to try to explain this until it happens to you. Some of you may know exactly what I’m talking about, but there may be some of you that have not yet experienced this.

When you do, my prayer for you is that you will remember my words, and they will encourage you through whatever your individual turn may look like.

I am not in any way suggesting that you live your life “on-guard” waiting for your unexpected bend in the road to happen. Take it from someone who has tried it—doing so will exhaust you to a point of not being able to be your best when your child needs you. But I want to you to know that when it does happen, don’t question your ability to ride it out. Your special parent sense will resurface, and you have to trust it.

No matter how many days or months you’ve walked on your journey I’m sure you’ve had a chance to fill up on this instinct. Each time you support your child through a bump in the road, it automatically happens.

In the midst of an ordinary day, we must remember that God chose us to do the extraordinary when our child has a need—trust the special parent sense that is inside you.

It was there when I needed it—and it will be there for you, too.

~Maria

One Step at a Time

No matter where you are on your special parent journey...if you've just stumbled upon the beginning of the road, and are searching for signs everywhere or you've been on this path for quite sometime, and you are very familiar with your surroundings , I hope and pray you will relate to the words that are on my heart this  month..

When you are in the midst of "survival mode," (the time when you feel like this road is that of a marathon, and you must get to all services and physicians that may help your child asap--you are trying tirelessly to win this race--and all other things in your world have been pushed aside)...you don't see any of the scenery that goes along with the special parenting path. And for the time being, that's ok. It's a great place to be when you've accepted that your child is differently- abled in some way than other kids, and you just want to do anything and everything that may help him or her--right now.

As you take on each day in this mode, it is easy to become frustrated, though--you want to see results, and you have a certain expectation of what's to come. Even though you've probably never walked on this road before, you want certain things for your child.

You make decisions that feel good in your gut--and you go for them. And because of that, you want them to produce some sort of success, even the tiniest sign of hope, for your child's future.

My prayer this month is that if this is where you are--don't try to figure it all out. As I say often, I don't claim to know everything about special parenthood, I just give you words based on my experiences...but if the few paragraphs above describe you at this moment, trust me--just try to take it one step at a time.

With each service you decide on or decide not to have your child partake in, you are taking steps toward their future. Try not to have a picture in your mind of the way each twist and turn will look--you'll know that part of the road is over when you get there.

Yes, there will be many bumps and stop signs along the way, just travel with an open heart and mind, and let the Lord be your guide. He put that special parent gut instinct inside of you--trust it , and roll with it no matter what the result looks like.

He chose you for this amazing task, and He'll be with you each step of the way.

You're going to survive the journey--allow yourself to take it one step at a time.

~Maria

Blessings

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may become mature and complete, not lacking anything. James 1:2-4

When it comes to being chosen to be the parent of a child with special needs, this passage is not always easy to take in. I have been on this road for almost nine years now, and I still have trouble believing—truly believing it…depending on which path I find myself on at any given moment.

But recently I heard Laura Story’s latest song, “Blessings.”  The first time I heard it, I didn’t really hear all the words because I was weeping. Weeping at the fact that so many emotions that I have experienced at many twists and turns on this road she managed to put all together in one song. Words that can only come from experience.

Laura Story is not a “special” parent, but she has shared on many radio stations that this song was birthed through the trials she and her husband faced when he was diagnosed with a brain tumor—and in the midst of praying for his healing.

This is the chorus:

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
What if a thousand sleepless nights
Are what it takes to know You're near?

What if trials of this life
Are Your mercies in disguise?

Trials=mercies.

Think about that for a minute.

Challenging to let that thought take root.

But what if?

What if they are?

What if it’s all part of His master plan of choosing us to be special parents?

So if I believe that He chose me for this amazing task, and if I believe that it is all in His purpose for my life, I have no choice—even on the hardest days—to consider it all joy—and receive His blessings.

Even when I can’t see them.

Even when I can’t feel them.

I resolve to turn it all over to Him, because without Him in my life, I wouldn’t have been able to be the mother that I am.

So I am grateful and so very proud to be a parent of a child with special needs, for through her challenges, I found the Lord.

And I choose to believe the “what ifs” in this song.

Choose to believe with me today.

~Maria

To hear Laura Story’s “Blessings” click here:

http://youtu.be/1CSVqHcdhXQ

Dear Alyssa

My beautiful niece Alyssa recently graduated from George Washington University with a BS in Public Health.

She is an inspiration to all of us, and because many family members comment on the undeniable resemblance to Alyssa and my daughter Olivia. I must tell you that not only do they look alike, but they both share the same independent spirit and I hope and pray that Olivia will one day follow in her footsteps. Alyssa has also inspired me as a special Mom, as she reminded me last week of a fellow student of hers that is a person with cerebral palsy that also graduated last week.

This post is in honor of Alyssa, and all that she represents…

Dear Alyssa,

When I think of you, I think of the word “pioneer”—and all that it means….one definition of pioneer is “the first one in any effort.”

Thank you for being a pioneer in our family. Thank you for setting the bar high for all of your little cousins and siblings to arise to. I am so grateful for the amazing pioneer spirit God has given you.

Your amazing work ethic, your brilliant mind, along with your beautiful heart that longs to serve those that have less than you makes you one of my heroes here on earth. Your passion and drive has come from your loving parents and family that surround you, and God gave you your independent drive and passion as He knit you in your mother’s womb.

For all that you are, I beam with pride. Not only do you have dreams, you are making them come true. And the thing about a true pioneer is that their dreams surpass their own needs and wants and desires---the dreams of a true pioneer have the needs, hopes, and dreams of others first….that is you.

The work that you have invested time and money in to benefit women and children in Rwanda is awesome…I am so thrilled that this week the women of that village will be able to put their arms around your neck and thank you personally.... I know that I know in my spirit, that you are an answer to their prayers that they have been praying for the past decade….they have been crying out to God for someone to help their children get medical care, and have a harvest for their children so they can have basic necessities that we all take for granted. The work that you and your fellow students through GlobeMed have done—are the answers to their desperate prayers.

Please take 5 minutes and watch this video of a song called “Pioneer” by Rick Pino. It sums up what you stand for:

http://youtu.be/LwZaz5AVoNY

I love you,

Aunt Maria (Re Ree)

To see the amazing work Alyssa and GlobeMed are doing in Rwanda click here:

Enable 50 Rwandan Mothers to Farm for Profit

For updates on their trip to Rwanda starting tomorrow, click here:

http://gwugrow2011.wordpress.com/about-2/ 

Visit www.GlobalGiving.org --a wonderful organization that Alyssa works for that enables anyone to give to any cause—including those that affect people with disabilities.

It Takes A Village

I’m sure you have heard the saying, “It takes a village to raise a child.”

When you are speaking of a child with a disability, that saying couldn’t be truer. I believe it is so important that our special families set an example to all those that encounter our kids to stress the importance of what true equality means.

We all have strengths and weaknesses—none of us are the same, that’s the way God designed it. Typically developing or non-typically developing—we all have the same desires of our heart—to be loved and accepted for who we are.

Our kids are no different.

They still have the same desires other kids do, they just may not act or look like other kids. They want to have friends, they want to play on a playground, and they eventually want jobs and families of their own. Just because their abilities don’t fit it to the world’s view of what  “normal” is, they want whatever their normal looks like.

Even though the Americans with Disabilities Act was passed in 1989, sadly, prejudices that surround people with disabilities still exist. We as a society may not hear of these prejudices as much as other things that make people judge, but when someone has to come in contact with a person with different abilities, I feel their true colors come out.

I would like to think that we’ve come farther than we have as a society, but we have not.

Can you imagine what our world would look like if we were all truly on the same playing field? Can you imagine if all labels that have been put on kids and adults suddenly disappeared?

So many misconceptions continue to exist regarding people with physical disabilities—ones that are visible to the eye…as well as those that can’t be seen as easily to outsiders.

I don’t expect to change society’s views regarding people with disabilities in one little article, but I do know that if we all did our part—in every social setting we find ourselves in, we can change our part of the world little by little for our kids sake.

Because I feel we were chosen to parent our kids, I firmly believe that in addition to being our child’s caregiver and advocate, it is our responsibility to educate those around us that our kids want to live in a world without judgment and labels.

In our neighborhoods, schools, in the community and in our workplaces—we have opportunities to instill the hope of equality in every conversation and encounter—along with those professionals that our children see daily—the therapists, physicians, aides, etc…Even though they work in a field of disability, it is easy for them to get into auto-pilot work mode and not see each child as an individual. All of those that are part of our child’s team need reminders that each child they come in contact with have their own set of unique abilities, desires, and dreams. The people that are in our children’s lives on a daily, weekly, or monthly basis have great influence on our kids, and on the community’s views of children with disabilities.

Whether they are professionals in the field of servicing kids with disabilities, or they are your next door neighbor, my prayer for you this month is that you will recognize the opportunity when it presents itself to educate and inform those around you in a way that will impact their view of disabilities in general.

People need to be aware of the following truths about our kids:

Even if they can’t speak-they want to be heard.

Even if they can’t see-they have vision for their future.

Even if they can’t walk—they deserve the right to run this race called life.

Spread the joy and simple truths about our kids today…and one by one, we can alter our child’s “village”—forever.

~Maria