Category Archives: Parenting

We got by.. 

  
Yesterday was a long day for My Simon.. We jam packed every minute full.. And he had to get through his whole day at school knowing what he had “endure”… But after getting through his school day (albeit loudly)… And was somewhat patient through my Audition workshop after school.. I watched him walk independently into his trombone lessons with a new instructor.. And he rocked it.. 
I know some of you are probably thinking ..”ok?!? My kid does that everyday..” And that makes me happy.. I love to see kids be successful whether it comes easy for them or if it’s more of a struggle.. But for my boy? He struggled to learn even basic skills like talking.. Doors were always a struggle to walk through.. But he was drawing by age 18 months.. He could write the whole alphabet .. But not utter a word.. So yes! We celebrate every success..

This morning I have been thinking back to my early years as Simon’s mom.. When it felt like it was me and Sy against the world.. When I could see my boy so clearly at home (when it was just us).. Only to watch how he would disappear when we walked through the doors to go into the outside world… 

This song that the Johnny Orr Band sings (We’ll get By).. Makes me tear up for 2 reasons.. First because I remember that feeling.. Being close to tears of frustration SO often but knowing that we were going to make it. Secondly? Because we have gotten by.. And we have come so far. 

Simon has come so far from the boy who needed to be held in public because the stimulation made him bury his face into my shoulder.. Watching him walk through a “door”.. into a room with a new person.. and being successful at showing his skill with his trombone?? Yup.. we’ve gotten by.. 

  
But before you tell me how great of a mother I am.. His success isn’t mine.. God has always put some of the best people into Simon’s life (and mine).. People who help challenge him and support him.. But mostly? Mostly.. Simon is one of the strongest people I know.. He holds himself to such high standards and pushes himself forward when I am tempted to let him have a “break”.. 

So while I have shed so many tears of frustration .. while trying “to get by”.. I wouldn’t have traded a single one.. I love the son I was Blessed with.. 

Stay on the Path…

Sometimes I look back at some of my blogs and re-read them.. A friend of mine was talking about how much my “Stay on the Path” blog touched her.. 

So?? 

I opened it up and re-read it..

At the time I wrote it.. I had been only think about the aspects of being a mother of a child with special needs. But today? Today I realize it could count for any number of my struggles in life..

And lately my path has been really icy..

Stay on the Path…. (For anyone who hasn’t read it)

It’s a Spring thing… understand?!?

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I have a son who has special needs… He has autism with a touch of bipolar. As a parent? That can be tough on a day to day basis.. or it can be easy.. depending on the day… and Honestly? Honestly it depends on the season. Summer is the easiest for us…  .. but Please don’t think my son is the norm for all kids with Autism… 

There is a very accurate statement out there.

If you know one person with Autism? Then .. you know ONE person with Autism.. 

Every child with Autism is an individual.. every child with Autism has their challenges.. every child with Autism has their super powers…. Every child with or without Autism.. is a child… first and foremost.

But in our little crazy household? 

Summer time is the easy season to parent. So much to do.. free time to explore. 

Fall and Winter come with their mood challenges… 

But Spring?

Spring is a challenging time for our family… The longer days… the warmer temps… the increased activities… These all increase the serotonin levels flowing through all of our veins… but for a child with a mood disorder? It wrecks havoc on the delicate balance in the system.  For us it means increased happiness.. increased agitation.. increased activity.. increased anxiety.. increased frustration… increased laughter.. increased tears.. and sometimes… increased aggression.

I say sometimes…

There were years that all I could remember was the aggression.. because it is devastating… Can you imagine anything more devastating than your child hurting another person? Can you imagine anything more devastating than your child feeling so “in danger” that they lash out to protect themselves? Can you imagine anything more devastating than your child feeling so OUT of CONTROL that they punch themselves in the head to relieve the “pressure”?

All of these things threaten to overwhelm me in the Spring…

But I am Blessed… My husband has always provided a stable platform for me and our two children. Because of this, I have been able to have careers flexible enough to care for our son. Flexible enough that I can be home for him when this Spring thing happens.

With my husband’s support.. constant prayer … and the wonderful people God has placed in my son’s life?? We survive every spring.. Every year we grow a little stronger and mature (my son and I both)…

My son has grown so much.. in fact… that this spring? When the flowers bloomed.. I was able to do some things I enjoy in the spring.. Like taking walks and reading books… and sewing prom dresses.

So someday soon… I hope to rewrite this spring thing…

Where is Cinderella now?

100_0706The story of Cinderella was originally written as a scary story to tell children.. to make them behave. Then Disney came along and took all the scary parts outs. They shaped that same scary story into a beautiful fairy tale that little girls fantasize about.

The Disney version of Cinderella is such a great story of Faith. A fine example of how Hope can come from the least expected places. Because one would definitely think that a close neighbor would have noticed Cinderella’s suffering before the Prince would have. And I could see where Cinderella, herself, would doubt help was coming at all.. if her neighbors didn’t try to help when they noticed she had gone from cherished daughter to the unpaid help.

But the story of Cinderella, this Disney one, has started to take on a different meaning for me recently. A different tone.. if you will…

What changed?

Well.. I have a daughter.. (a teenaged daughter)… One that could spring into dating at any moment.. without any warning. THAT in itself would be a little terrifying.. IF I didn’t have Faith in my daughter.. as well as Faith in God to guide her…

But the story of Cinderella has unseen dangers..

You see? Cinderella meets her Prince Charming.. when she isn’t dressed as herself.. but when she is dolled up and wearing beautiful clothes… THEN they meet at a magically fancy dance and fall in love at first sight… AND THEN he rescues her and they marry immediately.

You don’t see any danger??

If you look at it from a little girl’s point of view? This says “I need to be beautiful AND dress beautifully in order to meet my Prince Charming.” BUT here? HERE I will pause… Even though I have a ton to say on this.. it isn’t the story I want to tell today…

Today I would like to point out the real danger. That danger shows itself at the end of the tale..

With the words, “Happily EVER After.” If the narrator had said, “And they rode through all of Life’s obstacles together,” or “And THEN they helped each other deal with their issues for the next 50 years,” ? THEN this story wouldn’t be scary at all.  I would love it.

Let them enjoy the fairy tale you say? Ok I did.. I read this story to my daughter for years… I quoted this Happily Ever After for years….

But now the Honey moon is over… Cinderella and Prince Charming have unpacked their baggage and are trying to fit it into their castle…

“Cinderella didn’t have any baggage, she was too poor,” you are saying? I am referring to the baggage we all carry around with us.. the issues we have.. the weaknesses .. the temptations… Telling girls that there aren’t any issues.. that you will just be happy forever after you meet the right prince? That is dangerous…

What issues could a nice girl like Cinderella have?

A young girl who doesn’t remember her Mother because she died too young? A girl who’s father married a manipulative woman… and then promptly abandoned her to that woman’s care (through his untimely death)? A childhood of hard work? A life with verbal abuse? Not to mention she talks to animals…

Yes.. Cinderella has baggage.

Ok.. ok.. so you agree that Cinderella may need some TLC.. but the Prince.. he grew up in a castle right? How could he possibly have issues?

Everyone has issues.. they are all different but everyone has issues..

I guarantee you within a few years of that fairy tale wedding..  that other glass slipper will most likely hit the wall and shatter.. Whether it is because Cinderella is sick of Charming always telling her what to do… or whether it’s Charming getting angry that Cinderella is constantly cleaning the castle instead of paying attention to him… or because Charming is always on the road and Cinderella feels abandoned… OR.. Charming no longer thinks that it’s adorable that his young wife plays with mice? I MEAN.. what WILL the neighbors think?

Alright .. BUT IF THEY LOVE EACH OTHER… then none of that should matter…

Right?!?

I agree.. it shouldn’t matter!!! If Charming and Cinderella love each other? Then they should get married ..baggage and all!!! They should even help each other carry those heavy bags..

But often that isn’t the case … Often I hear of “love at first sight” turning into… “Well I didn’t know he did that..”… or “I thought he would grow out of that,” or “she stopped taking care of herself,” OR… “I thought she wouldn’t need those mice anymore once she had me.”

So I started telling my daughter about the real life of Cinderella.. the story of AFTER she became Mrs. Charming. I don’t tell her that they would have been better off if they had not met at a Ball.. I don’t tell her that there is no such thing as love at first sight… and I don’t tell her they should not have ever married…

What I do tell her?

I tell her that if Cinderella goes into that fairy tale marriage knowing that there will be issues? If she spends time talking to her prince instead of just dancing the nights away.. if she expects him to not be perfect? Then she can still expect a happy ending…

… and maybe… JUST maybe they won’t still have that baggage to pass along to Charmella and Prince Cinder.

So when I am reading Cinderella to my future grandkids? Should I change the words from “Happily Ever After” to “And then they walked hand in hand through life battling, whatEVER life threw at them, together”…? Ha.. maybe not… it doesn’t exactly have the same poetic effect…

…but I do think I will continue to tell them Cinderella’s sequel…

Be prepared..

IMG_6998Ever since the day my daughter was born, she has proven to be unfailingly … unpredictable. If I thought she would act a certain way, she would always pick the other. If I thought she would do great at something, she would refuse to try. She was SO unpredictable.. it was almost predictable..

As a young mother, I decided I was going to rock my infant daughter to sleep every night (because my wise mother had not allowed us to rock our baby brothers)… At 3 weeks old? At 3 weeks old, my daughter decided she had enough of that. She screamed until I laid her in her bed. She peacefully fell asleep on her own. This pattern continued with having to feed herself.. dress herself.. pick her own clothes. What ever I thought she would choose? She would suddenly chose something else.

I decided early on.. I was going to have to be prepared for anything.

My motto became… BE PREPARED!

I remember one camping trip fondly. My daughter was 2.. and fairer than any child I had ever seen. So I dressed her in a swimsuit.. in case she got wet in the wash tubs again.. or got too close to the water pumps… or “accidentally” spilled her juice on her clothes again. Then I slathered her from head to toe in a strong sunscreen.. that way I wouldn’t have to call out to her to stay in the shade.  Setting her down outside the tent, I then sprayed her with bug spray .. so the mosquitoes wouldn’t carry her away.

With a nod of satisfaction… satisfied that I had been as prepared as I possibly could be.. I turned back into the tent to prepare my second born.. my easy going son.

I had only JUST started dressing my son… when the laughter started. I am not talking about cute giggles. I don’t even mean a short laugh of amusement… This was full blown laughter.. and it was coming from the adults in our camping group. Trying to catch his breath, my husband called out, “Hey honey.. come here a minute… and… and bring the camera.”

Scrambling toward the door… I stepped outside to see my beautiful blond haired child.. covered in black dirt… from head to toe. While I was preparing to protect my daughter’s porcelain complexion, I happened to create the perfect glue. So perfect in fact, that when she laid down and rolled around in that dark sandy black soil? It stuck instantly to her.

And in the middle of that dirt caked face? A beautiful smile…

So I laughed with my family.. and reached for the camera. But I vowed.. I would be better prepared next time.

Then one night, I tucked my second grade daughter into bed.. and reached for the book on her night stand. Startled, I realized it wasn’t the same book that I had been reading to her.. It wasn’t the book I had been reading to her every night for the last week..one chapter at a time.

“Where is the book we were reading yesterday?” I asked her, confused.

“Oh I finished that one .. that is the next one in the series,” she replied nonchalantly.

“You finished it?” I repeated, still confused. “How? We only read chapter 10 last night..”

Taking a deep patient breath, my daughter replied.. “You left off where it was getting good.. I had to know how it would end. So I took it to school today,” she finished with a shrug.

“But we were reading it together,” I stated bewildered.

“You go ahead and finish it,” she encouraged. “But tonight you can start this one.” Pointing to the book I held in my hand.

In that moment? In that moment, I realized I was never going to be fully prepared. I was always going to be surprised by her.

So I decided…

I would go on being prepared.. but I needed to let the control go. Or at least the illusion of control. You see?!?  I never really had control. And I knew that I needed to just let the rest go.. I needed to let the NEED to feel prepared for ANYthing go.. and just lean on faith.

Now that my daughter is a teenager.. YUP.. she is still unpredictable.. But she no longer surprises me every time. We have come to expect her to be unpredictable. Always taking her two choices.. knowing that she will choose the only option we didn’t offer… We have just come to expect it.

So my new motto has become.. BE prepared and leave the rest to God..

This works for me.. most of the time. I still prepare myself for several scenarios… and occasionally I am still surprised by the unexpected. And occasionally? Occasionally, I am unprepared for it.

No matter how many times I talk myself through it? I am always surprised when someone lets me down. When someone that I look up to, behaves in a way I could not predict… in a way that disappoints me… it always takes me by surprise. I have to force myself to give that surprise back to God.. and to lean on faith. Faith that THAT person is dealing with unpredictable surprises of their own. The faith that everyone needs understanding.

It works well.. until the next time.

Recently, my family had something happen.. that none of us were expecting.. and we certainly weren’t prepared.

My youngest brother and his wife have a 3 year old son. Beautiful 3 year old boy.. with a beautiful soul.  As he progressed through his “terrible” 3’s? We, as a family, prepared to help guide the independence.. we prepared to keep a straight face when funny sassafras came out of his independent mouth… we prepared to pretend to be firm when needed. We all want this amazing boy to be the BEST that he can possibly be.. so we prepared to support his parents when needed.

But we prepared for the wrong thing…

My nephew was diagnosed with NF this spring. NF stands for Neurofibromatosis. A genetic disorder that we all believed to be characterized by large birthmarks .. and cyst growth on the skin. Again we prepared.. we prepared to make him feel comfortable in his skin. With these growths.

But again.. we prepared for the wrong thing…

Neurofibromatosis (NF) can cause tumors to grow on nerves… and cysts on bones… and anywhere.. on any organ system in the body.

My nephew? Well this beautiful  3 year old boy has cysts growing on his leg bones.. causing so much pain that he can’t sleep.

We weren’t prepared for that….

Then through a routine eye exam, they found what the specialists knew could happen. A non-cancerous tumor growing on his optic nerve.. behind his eye. Non-cancerous prepares our hearts to not be scared. But in fact, these tumors are too risky to operate on. When left unchecked, a growing tumor can damage his eye sight. The solution?

Chemotherapy.

Our beautiful, sweet, amazing nephew… needs chemotherapy..

We weren’t prepared for that either…

I don’t think anyone could be prepared for that…

“To everything there is a season, A time for every purpose under heaven: A time to be born, and a time to die; A time to plant, and a time to pluck what is planted; A time to kill, and a time to heal; A time to break down, and a time to build up; A time to weep, and a time to laugh; A time to mourn; and a time to dance;”  Ecclesiates 3:1-4

God has never promised us a perfect life… and it is not even close. But He has given us other promises. Promises to give us strength.. promises that we need not fear what He has planned for us.. promises that all things will make sense someday. And in these verses.. He tells us that after the tears.. there will again be laughter. Sometimes that laughter comes in the middle of the tears.. like a rainbow in the midst of a storm. Sometimes… it’s much later… after the storm is but a memory.

I don’t think we will be able to fully prepare this young boy …or ourselves… for the next 18 months.. But we can definitely try .. The rest? The rest we will have to take on faith. Faith that God will be there and get us through what we aren’t prepared for. That he will get this young boy and his parents through whatever they aren’t prepared for.

I have a feeling that my nephew will be more prepared for his chemotherapy treatments then us adults will be. After all.. he has 2 amazing parents with a deep faith in God. But it is always hard to see a child struggle through hard treatments.

So this week? This week was my time to weep.. and it was my time to break down.

But next week? I am praying that next week will begin the time of healing for my nephew.. and a time for laughter.. and a time to build up .. To build up in preparation for this road we will travel with this beautiful boy.. and his parents..

And in 18 months… I am praying it will be our time to dance…