A New You

I write a monthly column for the Mahoning Valley Parent Magazine, and I don't realize the impact it has on parents until one reaches out to me. This post is my November column, by request. 

For Danielle...

I’m very certain that if you asked any special parent if their child has changed their life, they would all answer “Yes.” I feel there are stages of change on this journey we are all on, and they may have different details, but we all experience the same feelings along the way.

When your child first comes into your world, your life changes dramatically. You are trying to figure out this new place you’ve entered, and it feels like you are lost in a foreign land.  It is uncomfortable, and you don’t really know how to act. Fear takes up residence inside of you, and you’re definitely not the same person that you were before.  You sure have changed, but you don’t think at this point it is for the better. You are in survival mode twenty-four hours a day, seven days a week. Most of the time you are running on empty, and you can’t see anything else around you. Your focus is only your child. When you are in the midst of this stage, you have no idea you’re changing on the inside.

Then as time goes on, it starts to get more comfortable. Even though worry and fear are always lingering in your mind, you are not as scared as you were in the beginning.  You have become more familiar with the road ahead, and you are able to take steps forward. Even though you may still be in survival mode, you have found guides and seen light along the way. You start to notice things about yourself that are different than before your child came into your world. You probably speak up more, take charge more, and have learned to be an amazing advocate for your baby girl or boy. Your heart has most definitely changed, and you and others start to take note. This stage can last for months or years, and on some level, this is the plateau we all come to find ourselves on a regular basis. It has taken time to get to this leg of the journey, and you are most certainly not the same as you used to be.

You realize over time that your child has made a positive impact on the person that you are. Experiences, good and bad, have taken place that positioned you where you are. Experiences take time. It’s during these days, months and years that you realize that even though this task is the hardest thing you’ve ever done, it has altered you as a person.  

I know a very special Mom that said profound words to me recently. Her son Joshua was born with a degenerative brain disorder, and she considers it a privilege to be is Mom. She said to me, “He changed my life. He made me a better person.”

Now, I’m sure we all could agree with her. All of our kids have changed our lives, right?

The difference between us and this amazing Mom is that Joshua was only here on the earth for sixteen brief months.  He lost the fight against his little body in a very short period of time. And in that small amount of time, Joshua took his Mom through these phases, and changed her into the person she is today.

She didn’t have to tell me details about exactly how he changed her life. She didn’t have to describe to me how he made her a better person. I could feel her heart in her words, and see the pride in her eyes. Joshua’s life is proof that our children bring hope to those around them that can’t be described in words. The effect that takes place from caring for our kids is the same regardless of the time we have to spend with them. They shine their light on all who come in their presence…even if they are struggling through their days. In the midst of the things they have to endure on a regular basis, they make their mark on the world.

My prayer this month is that you will take note of how your child has impacted your life, regardless of how long you’ve been on your path. Don’t ever doubt that you were hand-picked for your unique road—with all the sharp twists, turns and bumps that are only yours. These steps were designed with you in mind--to transform you into the person that you were meant to be.

~Maria

Surprise, Surprise!

Olivia learning shot put

My daughter Olivia started track camp this week. 

Track camp is a five day program for kids entering Kindergarten through 7th grade. It is facilitated by the Middle School track coach, along with High School students that participate in track. They introduce track events, and give children the opportunity to try all of them in a fun, relaxed environment. 

You may be thinking, "Oh what a nice thing for her to do in the summer, to keep her active and see her friends." But what you may not realize is that Olivia has never participated in a "typical" sport activity--ever. Nor has she ever had the desire to. 

You see, when Olivia was a baby, we prayed she would walk.

Most kids learn to walk around their first birthday. With the help of weekly physical therapy and her leg brace,Olivia started walking a few months after her second birthday. It was truly a celebration for all of us. As parents, we always hoped and prayed that day would come and had many uncertain and doubtful moments. 

But, as usual, she surprised us. 

Once she started walking, her physical therapist informed me that they would next work on running. 

Running?

The thought never really occurred to me--now we were going to have to teach her to run. Running seemed almost impossible. I was just elated she could walk!

Olivia fought through each therapy session with her amazing determination to learn the gait pattern and balance that it takes to run. 

She surprised us again when she was running by her third birthday.  

So now....as we are approaching her thirteenth birthday, the fact that she is in track camp with her peers totally overwhelms me. 

When I brought her to the school on Monday, we spoke to the coach about the fact that she will have to take multiple breaks and do things at her own pace. The coach responded in a very positive way and reassured me she would be taken care of. 

 As I was walking away from Olivia to go to my car, she said, "Mom, I'm scared." 
And as my heart was about to crumble in a million pieces because I, too, was scared, I said, " You always surprise yourself and do everything you put your mind to! You got this!" And I did what all the other moms did...I walked to my car. Even though it was hard, I knew I had to. 

But as I watched other moms pull out of the parking lot, I was experiencing emotions that most of them have never had. This moment was uneventful to them, and I was witnessing a small miracle.  

As I started to cry in my car, I realized I was crying because I was scared for her, but also because I was so very proud of how far she has come. If someone would have told me when she was two years old that I would be taking her to run track with her typical peers at age thirteen, I would have said they were crazy. 

But, as usual, Olivia surprised me. 

When I picked her up she was beaming. She had so much fun and loved trying all of the events. She  told me in the car that she wasn't the only one that was falling behind when they were running around the track. Her face told the whole story--she was proud of herself.

Even though every muscle in her body hurts, she says she will be sad when it is over Friday.... 

...and she informed me that she wants to try out for the Middle School cross country team in the Spring. 

Oh how I look forward to that surprise...

~Maria


   

A New Season

Why didn't anyone tell me this stage of parenthood would come so quickly? It seemed to come out of nowhere--all of a sudden, my kids are growing up. 

In my 16 years of parenting, I truly think that I believed everyone else's children were going to grow up and mine were going to stay little. But at the same time, in the back of my mind, I wanted to make sure they grow up to be independent, productive members of society. So the only logical explanation of my mind thinking about both of these concepts at the same time can be boiled down to one word : Denial. 

I consider myself to be a realist--give me facts, I will do everything in my power to help and support those facts with faith and expectancy. I never really thought of myself as one that could take up residence with denial for very long, but obviously I have lived there for quite some time. 

When my son, now almost 16, was a baby, all I wanted was for him to sleep through the night. If only he would sleep, I could enjoy the next stage of his life. Even though it took over a year for him to sleep through the night, I then started looking towards the next stage of his development. If only he could do this or that, THEN I would start to enjoy him--truly enjoy him. Unfortunately, I wished away every year to get to the next. 

And when he came home ecstatic about his new driver's permit last month I wept. I wept because in my mind, he was never going to be old enough to drive a car. Right? That's what denial told me! How could this actually be happening? 

And as I watch  my daughter, now almost 13, do things independently without needing me, I can't believe my eyes. Since she has muscle tone issues in her hand and leg, I made sure her whole life that I helped her reach her goals, one at a time, by getting her therapy, working with her at home, etc...I prayed for the day she would walk. When most parents are hoping their two year old will say small sentences, I was hoping she would walk.

And she did walk.

Then at age three when most parents are hoping their child will be potty trained, I was hoping she would talk. 

And she did talk. 

She does everything in her own timing, on her terms. She has surprised us over and over again these past 13 years. And lately, she doesn't need me in the same ways she used to. While I have been praying all her life that she would be able to care for herself and be independent, at the same time, I didn't think this day would come. Denial again.

This season of parenting is very uncomfortable for me. I guess I need to be needed. (It's an Italian mother thing, I think).

But as my wise friend told me recently, "They still need you, just in different ways". It has become my new mantra, and I have chosen to believe it. 

So just as I celebrated milestones and birthdays with them over the years, I am choosing to embrace this season.  I choose to enjoy them (even though they are both teenagers) and be proud of their achievements. And at the same time, look forward to the young adults they will become. 

I  have made myself take a step back and be thankful for the Mom they have molded me into-- A Mom that has too many blessings to count, and one who recognizes the clock is ticking...and there's no time for denial. 

~Maria

A Winter Dream

My family and I recently had the most amazing trip to Clearwater, Florida. We have not been on a "real" vacation in many years. It was just for a long weekend, but it was wonderful to spend time together--just the four of us. In fact, it was a dream come true for my daughter.

We all have dreams---dreams that stem from childhood, dreams that evolve as we get older..and dreams as adults that we strive for.

Do you remember your childhood dreams? What did they look like? Did you ever have the privilege of living any of them before time went on and those dreams changed?

Fortunately for my twelve year old daughter, Olivia, she was able to see her childhood dream become a reality at the Clearwater Marine Aquarium.

If you are not familiar with the aquarium, it is the home of Winter the Dolphin, whose story was told in a major motion picture "Dolpin Tale" that was released in 2011. Winter is a brave dolphin that the Aquarium staff rescue on the beach when she was very young. A fishing net had entangled itself around the bottom portion of her tail, and she was abandoned and alone. The aquarium ends up nursing her to health...and having to make a decision about the portion of her tail that enables her to move around that was decaying as a result of her injury. Her tail had to be removed, and she ended up getting a prosthetic tail made by an amazing Dr. at Hanger Orthotics. She is the first animal to ever wear a prosthesis. The tail enables her to swim in a natural way, allowing her spinal chord to function typically.

From the day Olivia saw the movie, she has wanted to meet Winter. They share a special bond--Hanger Orthotics in town also make her Ankle Foot Orthotic brace that she has been wearing on her left leg since she was 2 years old. Winter's ability to fight through the many obstacles surrounding her rescue and healing gave Olivia determination and inspiration to continue working to make the left side of her body function to its highest potential.

Thanks to the amazing people at the home office of Hanger Orthotics, Olivia was able to meet Winter, and learn from her trainer the many tricks Winter can do. She spent time with Winter,and was able to touch her tail without the orthotic. This experience was so very special to her, and to all of us...as it was truly a miraculous day. At the end of her visit with Winter, she posed for a picture while touching Winter's snout. We didn't realize it until we came home and looked at the pictures that Olivia reached out to Winter with her left hand. Olivia's muscles in her left arm and hand are very tight,and she has limited range of motion because of it. She uses her left hand only when she has to, and with weekly occupational therapy, she learns to stretch and incorporate it in her daily living routines (but she is still stubborn, and uses it sparingly).

So the fact that she willingly, subconsciously, reached out to Winter with that hand was truly miraculous. In the video of her experience, as she is reaching out to Winter, Winter is swimming towards her hand so she can feel her snout. In this tiny moment of time, the two of them connected.
It may not sound so miraculous to you, but since she was a baby we have worked on getting her to use her hand more. To our entire family, this became so much more than Olivia's dream. As special parents, my husband and I had our own dream come true.

We thank the wonderful people of Hanger, and the staff at the Aquarium for their warm welcome, and making our day one that we all will remember forever.

Seeing Winter and Olivia's connection can be inspiration to all of us to keep on reaching for our dreams...

You can see Olivia's dream come true here: www.seewinter.com

-Maria

Getting off the Wheel

Please forgive my absence...my weekly commitment to my blog looks more like 'monthly" right now.

Writing is one of  my many passions...it makes me feel alive. I love the feeling of giving life to my thoughts and feelings as well as encouraging others with my words.

But life has seemed to get in the way the past few months.
I felt that the part of me that gives me life was going away.


When did life become so busy? When my husband was sick with cancer last year I vowed to never allow "life" to get in the way of "living".
But somehow I have allowed it to happen again.

Why do you think that we put things that we love on hold to keep up with the hamster wheel that we seem to never be able to get off of?

Sure, we take vacations, weekends away and date nights to breathe, but then, without even thinking, we jump right back on the wheel.

When you're on the wheel for so long, everything becomes blurry.  It makes you dizzy and tired.
So when you finally do decide to jump off for a few seconds to catch your breath...you're exhausted.


All of my spinning is making me tired.

Can you relate?

I feel that society has influenced us so much that we think that if we are not busy, we are not ok. In order to "keep up" we must keep going....does that make sense?

Well, this week, and the weeks ahead in 2015, I have truly committed to enjoying the things ordinary, everyday things in my life--like the look on my daughter's face when she gets a good grade on a test, my son's eyes when they light up while looking forward to next year's football season, and the quiet date nights my husband and I are so very blessed to still have together.

My prayer for all of us is that we will jump off the wheel....and vow to not get back on. Be honest with ourselves and admit that each day is truly a gift from God and we can no longer waste them by spinning continually.

Are you ready?

~Maria

Give Thanks

We all have things to be thankful for at this time of year--and always. But since we all go through our days so very busy, we miss out on appreciating the little things in our day to be grateful for. Many people I know have taken the “thankfulness challenge” by writing down a few things they are thankful for each day for 30 days. I think writing them down makes us be physically aware of them and can refer back to them often.  Even though it is difficult to do, I hope to be mindful of all I have to be thankful for every month, not just during this time of year. 

As special parents, it is difficult at times to stop and truly notice what we have to be grateful for on any given day. Between appointments, surgeries, school issues, etc…it is hard to see the blessings in all of it. But at the same time, if we look close and pay attention, we will see that we have so many things to be thankful for that most people take for granted with their children.

If you are a parent of typical children, my prayer for you this week is that you will appreciate and truly express gratitude for all the things ---even the smallest things, that your child is able to do that you may take for granted. How they walk with ease, tell you with their voice what they feel, or their ability to be independent and do things for themselves---believe it or not, these are little miracles that you should be grateful for. 

And if you are a special parent, I pray that you take note of my words and my heart and be aware of the little things each day that make your child unique—and celebrate and be thankful for all the things he or she can do, rather than focusing on their limitations.  

In our busy days, it is so easy to become preoccupied with things that aren't really worth our time or energy. All of us get used to the "stress" of all we need to do on any given day. But, in reality, it's not really stress. It is just life. Our busyness takes over and gets labeled as stress....and in the midst of it, we miss all the beauty around us that we should be truly thankful for.

Ephesians 5:20 states, "Always give thanks to God the Father for everything, in the name of our Lord Jesus Christ." 

Let's commit to give thanks always....for everything.

~Maria

Angel on Earth

There are  many special Moms that go beyond the word "special." I don't have a specific word to describe these women. They do what the rest of us do...but they take their gift to another level. They truly are gifted, they truly are the Chosen.

I have the privilege of knowing one such Mom very well. My friend, Jeannie, is the mother of Chloe. Chloe is a person with spina bifida, and more recently has had many health issues in addition to her everyday challenges. She has spent most of the past year in the hospitalized from many surgeries and complications...with her mom right by her side--doing what she needed to do to be strong for her baby girl.

Last week, at the age of twelve, Chloe went to be with the Lord. Her little body couldn't handle the stress of it all, and she received her angel wings.

She is now singing and dancing with her fellow angels--free of Drs., surgeries, medications, and movement limitations.  She is an angel now but was truly an angel when she was here on earth. She made everyone smile and she lit up every room she entered.

My prayer this week is that you will notice the angels in your daily life. You may not realize how they effect your life on a larger scale...because they are around you daily, and their gift may not shout out to you in big neon colors.

But they are there.

Because of Chloe, I am making a conscious decision to not take the angels in my life for granted. I know they come in forms of my beautiful, amazing  friends, sisters, family, and, of course, my children and husband. I am very blessed and have made a commitment to thank them and be grateful for them.

They will all get their wings one day, too. So I will enjoy them and recognize their impact on my life.

I know Jeannie recognized the amazing light of hope, love, and strength Chloe was to her each and every day even through her hardest days.

Please pray for this beautiful family.

While Chloe was hospitalized, her friends, appropriately named, "Chloe's Angels" created a fund to help the family offset the cost of her medical expenses, and to help with funeral costs.

You can find the site here: http://www.gofundme.com/88al0g

This is Chloe and I at a challenger baseball game...she was shining her smile on me that day, and I will be forever grateful for this moment.

Thank you, sweet Chloe for being an angel to so many. 

~Maria

Italian Warmth...

"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel." -Maya Angelou

I always say that having compassion and empathy for others is part of my DNA.

I don't think it happens by accident, I feel the family factor has much to do with it.

I was fortunate enough to be born into a big, Italian family. If you know anything about Italians, you know that we are huggers. Lots of hugs and kisses...given at hellos, good byes, and for everything else in between!

I think that's where my feelings for others---being able to feel what they feel--and empathize, comes from. I saw it modeled each and every day, and felt it in the atmosphere of our home. It oozed out of my parents, and it spilled into my two sisters, my brother, and me.

People often comment to me that I have a gift for empathizing with people, and, in turn, helping them. Although I am very grateful that they call it my gift, I know it was a gift that was given to me not only by God, but also by my parents and extended family.

Because of this, I know it is so important to have kids that are capable of feeling for others also.

Don't we all want them to grow up to be compassionate human beings? To be able to be the voice of hope and sincerity when people need it the most?

This can only be modeled--in our voices, our actions, and the tone we set for the space that we all dwell.

Regardless of the kind of home you grew up in, or the family you were born into, I'm sure that being a parent changed you. Someone calling you 'Mom' or 'Dad' altered the make-up of your heart and gave you the ability to create your own unique atmosphere that fosters this kind of warmth.

Please don't misunderstand me in thinking that my home is constantly flowing with positive , quiet voice tones  and angelic singing. Remember I told you I'm Italian...100% Italian. I am by no means claiming that my house is a quiet, serene place each and every day.Voices are loud, crazy mom comes out of me at about 9pm every night.... But I will tell you, that at the end of the day, my kids know that my husband and I love each other---and them--more than anything in this world. I hope and pray daily that they will grow up secure in who they are, and that a piece of my love and compassion for others will be instilled inside of them forever.


My prayer for you this week is that you will recognize the moments in the busyness of your day that this compassion-love-warmth-can be shown to your kids. And that you will be able to instill this gift to them..just by being you.

~Maria

What Doesn't Kill You....

I have had alot of "why" moments lately. Why do so many people in this world have to hurt?" Why does it seem like others have multiple things  to endure in this lifetime while others seem to go through their days worry-free?

I know as a Christian, I am not supposed to ask these questions. John 16:33 states it clearly:" I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."

So, in faith--having TRUE faith--we must believe.
I've learned that believing is a choice. A choice we must make daily...whatever the hour, day, or month may bring, it begins with choosing.

Because of my "special motherhood" and my husband's recent fight against cancer, I have to choose. So many people have said to me "what doesn't kill you makes you stronger" and "God will never give you more than you can handle."

And I think, aren't I strong enough now? How much faith does God have in me??
Some days, the questions haunt me, and doubt tries to seep in.

But I know that I know that God made me a survivor, a warrior. He chose me for all of these things, just as much as I have to make the conscious choice to believe that He is in all of it. Always. Each and every moment of my life.

I was in the pity/doubt mode a few months ago, and I found an interview article with Joyce Meyer in Called magazine. For those of you that may not know who Joyce Meyer is--she is an amazing woman of God and teacher of His word. She has a fiery, no-nonsense spirit that makes you listen when she talks.

She is also no stranger to pain. She spent all of her childhood (into adulthood)  being sexually abused by her father. She speaks about it candidly, so that viewers can know how she has overcome.

This is an excerpt from the article...which spun me right out of my pity party:

 “I just started working with a new strength training coach, and he told me that when I got to repetition 9 or 10, if I felt the weight I was lifting was going to be too much, I could use my own discretion about when to stop. I told him that if the goal was 10, I would do 10 (if there was any possible way for me to do it). I said, ‘If I quit early, you can be guaranteed that I absolutely could not go on.’ I wasn't bragging; that is just the way I am. I had to make that decision early in life when I was being abused, and no adult was willing to help me. I had to make it again when my first husband walked out on me when I was pregnant, so he could live with another woman. I had to make it again when God called me into ministry, and I was asked to leave my church – resulting in me losing all of my friends. When my strength was gone, I finally realized I needed to rely on God’s strength. [...] Perhaps the reason God didn't rescue me from all these difficulties was for the purpose of building that determination in me – because without it, none of us can do anything great in life. If you have big dreams, then you’ll need determination.” 



And all of a sudden a light bulb went off.

This is who He created me to be-this is the life He has given me--just for me. He made my circumstances and struggles to form me into the strong, determined woman He wants me to be....and He has given me big, God-sized dreams in the meantime.  He dealt me this hand of cards because He wants me to rely on Him for everything and be confident in who I am.

My prayer this week is that you will find hope in the struggles you are facing. Hope that you will become stronger than you were before, not just because the phrase says you will, but because you truly believe this is the path you were meant to be on. I pray that He will also show you dreams that could only come from Him, and you will choose to believe.

You were chosen for your unique journey--and your faith and determination will grow with each step.


"All you need to remember is that God will never let you down; he'll never let you be pushed past your limit; he'll always be there to help you through it." (1 Cor 10:13, MSG).

~Maria


See the entire Joyce Meyer article at:

http://calledmagazine.com/inspiration/item/330-cover-story-joyce-meyer/330-cover-story-joyce-meyer?start=3

A Football Life

Fall is in full swing and I love it.

The cooler nights, the autumn breeze, and of course--football.

Football has become an integral part of our lives. Our fourteen year old son, Jonah, is completely obsessed. Obsessed with his quarterback position on the Freshman team and obsessed with the Steelers.

On the field, he is calm, cool and smooth. Off of the field he has fiery energy that is difficult to describe. Many people have their opinion about kids playing football--the injury risks, etc...

But this game is forming my Jonah into the person he was meant to be. It has been a platform for him to channel his energy and passion in a positive way. He has blossomed into a leader, and I am so very proud of him. Since sixth grade, he has been the one that pulls the team together on the sideline and leads them in prayer---even now, on the public school football field. I am in awe each week.

 He has been fortunate to have had in the past, and has currently---wonderful coaches that pour into all of the boys. They are not just teaching football skills and plays. They have been instilling life skills that these kids will remember their entire lives. 

So, do I worry about the possibility of injuries? Of course. All moms do.

But I know that I know that if I had discouraged Jonah and not allowed him to play this game he loves so much, he would not have the confidence he has now, and I would have squelched his passion for life. 

My prayer this week is that you will, despite your fears, encourage your children to do what they love, use their God given gifts...and bask in watching them become the individuals they were meant to be.

~Maria

  

Blessings

Singer/songwriter Laura Story song, “Blessings” chorus says beautifully, “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.”

Blessings come in all sorts of shapes and sizes-and sights and sounds.

They’re everywhere. All the time. All around us. We may not notice them.

But they are there.

If you or anyone you love has ever been sick, hurt, or disabled, you may have already witnessed many of these blessings. I like to call them little reminders that God is with us-in everything-EVERYTHING-and He sees us, and hears the cries of our hearts.

In the midst of my daughter’s “phases” of recovering from her recent surgery, she still continues to amaze me. I know it is her voice telling me things she is thinking and feeling, but I know that I know it is the Holy Spirit speaking through her amazing body, to comfort me, and show me multiple blessings.

After her second casting this week, she was scared and in pain…and said to me in her twelve year old voice, “Mom, I might cry when I say this to you….but I am proud of myself.” And I was the one crying. In the middle of probably the worst pain she’s ever had, and the struggle between her thoughts and her body, she said exactly what was on her mind. And she is proud.

And it makes me proud.

It was my little blessing of the day.

You see, if you are in too much of a hurry of your day, your schedule, your appointments, your kid’s schedules…you may miss these beautiful reminders.

As a mom, I was so apprehensive about this surgery, and the outcome….I always wonder if I make the right decisions for her, and for her future. It’s just a mom’s nature to want what’s best for her, and to make decisions that will benefit her…and doubt always seeps in. Worry and anxiety creeps into my mind, and I try not to show it to her.

Then, again, shortly after she was adjusting to the feeling of this new cast, she walked up the steps-alone-even though I told her to wait for me to go behind her and for her to go slow….

I voiced that she was making me nervous, and yet again, I was fortunate enough to get the second blessing of the day she said… “Mom, I am strong and brave, and you don’t have to worry about me.”

She might as well have said, “Jesus wants you to know He is here, in all of this, and He doesn't want you to worry anymore. He is taking care of me.”

Again, I was crying, thanking God for the beautiful miracle girl He gave me so I can be reminded of His love and His presence.

My prayer this week is that you know He is in your everyday world-He knows you like no other-and He sees your pain, your hurts, your smiles, and your tears.

He is showing you through blessings that may not appear like fireworks, but they are in the voice of a loved one, a sight in nature, or a gesture of a kind stranger.

Pay attention.

The blessings are there.

He is there. 

~Maria

Keep Walking

Recently, my daughter had surgery. Pretty major surgery--her orthopedic surgeon had to cut and lengthen the heel chord of her left leg to allow her heel to hit the ground while she walks.

It was very painful, and she is still wearing a cast...four weeks later.

She is so resilient, as usual. I was worried and anxious prior to the surgery---contemplating all the pain she would be in. She was in an enormous amount of pain for the first week. Then, her amazing physical therapist worked with her to encourage her to walk on it.

Walk on it? I thought she was crazy!
How could she even begin to want to put pressure on the ground with that foot while being in so much pain??

But as usual, she surprised me. Even though she was in pain, just 5 days after this major surgery, she started to walk...taking little baby steps--but walking.

Despite all her pain. She kept moving...and continues to move--and will until they remove her cast next week. Then her orthotist will mold her new brace, and she will get yet another cast while we wait for the brace to be made.

As a mom, my heart hurts that she must endure all of this.
But to her-it's just a part of her life.

She is twelve, and she continually teaches me how we all should live our lives.

Face each challenge as it comes.

Challenges are not your entire life, just part of it.

...And keep walking in spite of your pain.

"...let us exult and triumph in our troubles and rejoice in our sufferings, knowing that pressure and affliction and hardship produce patient and unswerving endurance. And endurance develops maturity of character. And character produces joyful and confident hope of eternal salvation. Such hope never disappoints or shames us, for God's love has been poured out in our hearts through the Holy Spirit Who has been given to us. " (Rom 3-5, Amp)

~Maria

Surprises

I love surprises. I always have--I'm a little girl at heart.
This week, I got a very unexpected surprise that made my heart sing...

My Olivia, who is now 11 years old, has challenges with her left hand, and it hinders her to complete many self-care tasks...we are getting there, trying to teach them to her...but it is a daily, ongoing, thing.

The other day, my husband and I were both at work, and she had to be home with her older brother. (Which they both do not enjoy to begin with...) And she was getting ready to go spend the day with her very best friend. Getting ready, that is, without any help.

She wears a brace on her left leg, that is kinda tricky to get on to begin with. Her occupational therapist, Linda Ankerman, and I, have not even begun to think about teaching her to put it on. She hasn't even mastered putting her socks on.

Until the other day.

She calls me and says she put her socks and brace on, couldn't master her shoes, and her brother was still sleeping. She didn't want to make him mad by waking him up.

The point of her call was to just tell me she wanted to wake him up, and didn't know how.

I, on the other hand, was in shock at her words and had to ask her, "Did you say you put your socks and brace on?" And in her matter-of-fact voice she said, " Yes, I told myself, well-he's sleeping, and you have to figure this out!"

And she did.

So as I was quietly crying on the phone, I encouraged her to wake up her brother, even though she was hesitant to do so.

As usual, she taught herself yet another task all on her own--because she wanted to..

And I got the greatest surprise ever.

~Maria

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