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

Deep Breaths

     Do you know what it means to have time to yourself? Can you remember the last time you did something just for you? No kids, no significant other, just you? If the next few minutes as you’re reading this are the closest thing to you having time to yourself recently, please pay attention....we moms have to take care of ourselves in order to take care of our families...I think my husband says it best, “When Mommy is happy, everyone is happy!”

     
 I am very passionate about this subject because even though I work full time, I still need “me” time—and my family needs me to have it!  I am a much better mother and wife when I get time each week that is just mine.  I know some of you are thinking, “I don’t have anyone that I can leave my child with that will take care of him or her the way I do...my child just has too many needs, I probably wouldn’t be able to relax if I did get any time away...” I know these words are true for so many of you, and I’m not suggesting by any means that you take time away from your child’s daily needs or routines if it is impossible, but what I am saying is to try each day to take small steps toward time for yourself...even if it is taking a shower without any interruptions (I’m sure for many of you, it is a plus even if you get to go to the bathroom without anyone needing anything!).  I know a very special mom that explained to me how when her daughter first went to school with her aide, she would stand by the window and watch them get on through the window, and as the bus rode off, she would stand by  the window and look at the peacefulness of the morning, and just take a few deep breaths...that was her time, no one else’s...you see, most of her days were filled with thoughts of wondering if her daughter would make it through the school day without having any seizures, or that if she would be able to tolerate being at school the entire day...but for those few moments after she got on the bus, this mom got her own time the only way she could, knowing that she would face the obstacles of her day better if she took those few deep breaths.

     
 If you can start with small things, eventually you can ease you way to more time.  Take a walk around the block, or even just down the driveway. 

Go outside and enjoy the weather.  Listen to music that is just yours...find the one thing that brings you a sense of peace.  I believe if we do these kinds of things every day, we are more productive with our kids, and our thoughts automatically are driven toward positive things; and isn’t that our main focus every day? If we can’t have positive hope for our kids, than who can?  We must nurture ourselves any way we can to stay in that state of positive expectancy...We owe it to our kids.  They deserve it, and so do we!

~Maria

Save Your Energy

A very wise friend of mine gave me some great advice early on in my special parenting journey—she said these few, very simple, yet very powerful words—“Save your energy for the things that matter most.” Her words struck me and made me stop and actually think about how I was utilizing my energy each day. And she also pointed out to me that expending my energy wasn’t just my physical energy, but that we also use and save emotional energy each and every minute. We (especially us moms) have to be very choosy on the things that we will allow into our thoughts and emotions, in order to be the most effective parent we can be.

So I began to examine the ways I would expend my emotional and physical energy… My prayer this week is that my experience of examining and refocusing my expended energy each day will help you do the same.

The main thing I focused on (because I am such and emotionally-driven person) was how much time I spent thinking about and contemplating the things that are challenging for my daughter. I began questioning how much of my thought life was negative. Negative thoughts breed negativity. As I’m sure you know, we don’t have time for negativity when it comes to our kids. Unfortunately, at the time, I realized that I spent most of my time focusing on her limitations, rather than her strengths. I literally had to re-train my brain to automatically see all the amazing things she can do, rather than the things she struggles with. This is the one that took the most time to overcome, and occasionally, I still have to remind myself to have positive thoughts rather than negative when it comes to every aspect of her disability---the treatments we have chosen, how she functions in a school setting, and her everyday routines at home. Doing this forced me to see all of the amazing, wonderful things she can do, and how far she has come. So basically, think about what you’re thinking about. You may be surprised how much energy you are wasting on unproductive thoughts.

    Next, I took a look at the kinds of people that I spent time with, and the kinds of people that were an influence on my family. Fortunately, this step didn’t take long, because I have been very blessed with a wonderful support system of family and friends that are full of hope and expectancy for my daughter’s future. Pay attention to your relationships, and make sure they have a positive impact on you as a parent, and on your entire family. We special parents don’t have time to be in emotionally draining relationships!

     Last, but not least, I had to take a serious look at how I spent the very little free time I have left at the end of each day. I have historically been a “yes” person, agreeing to extra commitments and saying yes to each and every invitation. As I began to truly take time to examine this part of my life, I realized it took up a lot of my energy. I learned that it is OK to say no, and life will still go on. We have to realize that every family is different, and each and every family deserves to make their own decisions on how many social or family events they can commit to. This also took me awhile, but in the end, the bottom line was that my family comes first.  I believe all families need to do what works best for them—take care of your family first, and don’t feel guilty about it!

    

     Because we special parents have learned the hard way what it means to be “on guard” constantly—for the next bump in the road that we have to overcome—we owe it to ourselves and our children to save our energy, because we never know when we may need it next. Save all the good, positive energy for your family, they deserve it, and so do you!

Blessings,

Maria

Stop and Enjoy the Dandelions

The dandelions that pop up in the spring don’t really matter.

Not to me, anyway.

I have yard work that seems to be endless, laundry that continues to pile up, and dust has made permanent residence in my house.

All of these things that were once at the top of my to-do list, aren’t as important as they used to be.

I used to worry about the amount of laundry that was on the floor of the laundry room…it always was caught up—always.

The snacks that were important to my kids and my husband used to always be available in our kitchen, or I thought I wasn’t a good mother.

I also used to think that I wasn’t a good mom unless I continually worried about all of this housework, and my kids.

Constant, consistent worry.

I was very good at it.

I was taught at a very young age that the amount of love you have for someone equals the amount of time you spend outwardly worrying about them.

Then my Olivia got sick at 3 months old.

In an instant, what once were priorities were no longer important.

I wasted so much of my time worrying about things that were really not worth my thoughts or my time.

I now had something to worry about.

On the day of her traditional baptism, she came down with a very high fever, and my husband and I took her to a pediatric emergency room. We entered with a small amount of fear, but were confident that she must have some sort of infection, we would be given a prescription for an antibiotic, and we would go home.

We were so very wrong.

Following drawing every type of fluid from her tiny body, the physician informed us that she had a very high white blood cell count, and they were trying to determine why.

As the nurse was preparing a needle to start an antibiotic, Olivia stopped breathing.

Right in front of my eyes, her skin was turning gray…I remember thinking, “ she actually looks gray.”

A trauma team was called, and an alarm sounded throughout the hospital. The sights and sounds of this moment will never leave my memory.

In that moment, I don’t even think I prayed.

When she was stable, we were able to see her.

And the tiny, 11 pound beautiful baby girl that began her day in a long, white baptismal gown, was now connected to many types of wires leading to all types of medical equipment.

We felt like we were in the middle of a horrible nightmare.

All of a sudden, I had something to worry about.

     Priorities were made.

    

     The things that really matter in life made their way to the surface of my family’s life.

And in a very short period of time, I realized that I never spent any time in prayer. I had no point of reference for a spiritual life, or how to even begin a conversation with God.

I now had something very large to worry about, and I knew I couldn’t do it in my own strength.

     When we finally got to bring her home we were grateful for her life. We were thankful God guided our steps to the emergency room that night; had we put her to bed, she would have died in her sleep. 

      At about 6 months of age, we realized she was not opening her left hand as she should, and eventually learned that her left leg and foot were also not functioning as they should. Because of the trauma her brain experienced that night, Olivia is a person with hemiplegic cerebral palsy.

     As a Mother, I spent the first year and a half after her trauma trying to make sense of it all and wondering, ‘Why her? Why us?’ I spent most of my days focusing on her limitations instead of her strengths. I fell into a depression I thought I wouldn’t recover from. I thought that if I accepted this disability that had made its way into our life, and not outwardly show the world how much pain and worry it was causing us, then I was a bad Mom. How could I love her and not be in a constant state of worry?

     Through all of my pain, Olivia led me to the Lord. As she drew strength from me, I sought strength from God.  There was no other option; in order to get out of my ashes and care for my daughter, I had to cling to His promises and His hope.

 …(The Lord will) “provide for those who grieve in Zion-to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning, and a garment of praise instead of a spirit of despair.”(Isaiah 61:7 NIV)

     I accepted Jesus as my Lord and Savior, and I received His promises. I work at it each and every day, it is definitely a process...

I feel so very humbled and overwhelmed that God turned the most painful days of my life into such beauty so that His love can be seen and heard through my words. And through Olivia’s life.

     She is 10 years old now, and is doing great. She wears a brace on her left leg, to help her balance and walking. She is so full of God’s light and joy, strangers that see her for the first time comment on her beautiful spirit.

 She is the epitome of John 9:2…His disciples asked,” [Jesus], who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned, said Jesus, but this happened so that the work of God might be displayed in his life.”

     So, when my neighbors are cringing at the sight of the dandelions in my yard in the spring, I just have to smile and thank the Lord that He has shown my husband and I that the little things that bother people, usually don’t matter in this life He’s given us. He made the dandelions for us to enjoy.

     Olivia sees the dandelions as pretty yellow flowers to pick for her mommy, they are bright creations from God-- and so is she. 

     My life mission is to be the best Mom that I can be to Olivia and her brother, Jonah—and to help special parents everywhere realize that they were chosen by Almighty God to parent their kids, they can stop and even enjoy the dandelions-- and they will survive.

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.