There is a Santa Clause

A very long time ago, before my special kids were even in the picture, I had a friend named Patti. Patti worked very hard cleaning houses in order to support her 5 children without any help from anyone. She was and is an amazing woman; she never complained and always tried to do the best she could for her kids.


It was about 27 years ago and the Cabbage Patch dolls had just become "The Thing" that the little girls wanted most. For months before Christmas Patti tried to accumulate the money to get her little daughter her very own Cabbage Patch Doll. Unfortunately something would happen and the money she was trying so hard to put away always needed to be used for other, more pressing things. Then, as Christmas grew near, it became impossible to even get the dolls. There were none available to be had. One day we heard that a local store was getting a small shipment of the dolls so a bunch of us went to stand on line, waiting and hoping that we could get one doll so Patti could give it to her sweet little girl. Unfortunately, none of us had any luck. Patti tried all the way until Christmas Eve, by now she had squirreled away the money but there were no more dolls.

My oldest daughter and I spent Christmas Eve with a friend named Rose who had 2 daughters. We were sitting around chatting and the girls were off playing somewhere unable to hear our conversation. Rose confided in me that she had sent away for 2 Cabbage Patch Dolls, one for each girl but, she got 3 dolls in the package that had been delivered. Knowing how difficult it was to get the dolls, Rose told me that she didn't want to send the one back, but did not know how to give one girl two dolls and the other one. Patti and her daughter came to mind immediately. I told Rose about what had been happening and asked if paid for the doll, would she give it to me for Patti? Rose asked me to wait, she left the room and came back with a doll. A pretty girl doll with blonde hair, just like Patti's daughter. Rose handed it to me and said, "it's her doll, no need to pay for it. It is going to where it should have been in the first place; it came here with a purpose!"

I called Patti, and asked, "Did you get a doll for Rachel", Patti said she had not been able to get one. "Well, you have one now," I said, almost losing my breath from happiness. I asked her to bring Little Rachel to my house in the morning so I could share in the moment. Patti cried and I cried and Rose cried too. It was a Santa Miracle!

The next morning I set the doll on the floor in the middle of the living room, still in the shopping bag that I used to take her home the night before. A few hours later Patti and Rachel walked into the room. We all wished each other Merry Christmas and although we usually sat in the kitchen, that day I invited them to sit in the living room. I walked over the the shopping bag and said, "Rachel, this is for you, it is from Santa Clause! You need to come over and see what it is". Surprised, she walked over and looked inside the bag. The tears were apparent in both Patti and my eyes as we watched Rachel pull out the box and carefully open it to reveal her wonderous gift She was so happy, the house was filled with an indescribable feeling of warmth. It was such an amazing moment.

So you see, I believe, there is a Santa Clause. He brings miracles to those who need them most, and not only at Christmas. Some of these are small little things and others are huge awesome things. They could just equate to a moment, a movement, a smile or just the feeling of a sweet baby's skin, a child looking out the window and really seeing a bird or a leaf. These Santa Miracles are not only for kids, they are for the kids in all of us. So during this holiday season and all year long, I wish you at least one Santa Clause Miracle, even if it is just the twinkle in the eye of a loved one. Wishing you all A Happy Holiday season and the joy of a Santa Miracle throughout the coming year!

My Daughter is Autistic and That is Okay

Recently, someone who had not yet had the pleasure of meeting our daughter asked me to describe her.  We were inquiring about placing her into a playgroup at their facility and they were curious as to how she would operate within the group having, well, autism.  More specifically they wanted to know if she could get along with other children and follow direction from adults.  I explained that while following direction is sometimes hard for her, we have special cues for her that help her stay on track and that she gets along well with other children.  They were hesitant yet glad to hear it of course, and I could not help but feel I was talking about enrolling our furry family member into doggy daycare, instead of our six year old daughter to a playgroup.

As the conversation went on the all too often question finally came of “just how autistic is she.”  We get it all of the time, from those who have fears of just how difficult she will be to work with, to those who meet her and are surprised when she does not quite meet their stigmatic expectations.  I explained that our daughter is considered high functioning and that many times those who do not understand how broad the spectrum is or what they are looking for may not even realize upon meeting her that she in fact has autism.  Before I could continue to explain how this often makes things difficult for her, the person on the other end of the phone exclaimed “oh that’s great,” undeniably satisfied that my daughter’s autism would not get in the way of the happy environment they had created for their other families.  Though the clear attitude received that autism is somehow an insult; to my child, to our family, or to others, made my stomach drop, it is clearly a bigger problem that falls far outside the length of this one phone conversation.

 

1. Autism is not an insult.  More often than not when we explain that our daughter is on the milder end of the spectrum people react as though they are relieved for us, and often themselves, that she may not “appear” as autistic as they originally imagined based off of their often limited views of what autism is.  Although I know this reaction is not meant to harm and is only natural having likely never experienced truly loving someone with autism, the reaction is most unnecessary.  We just don’t view it as a rampant negativity.


2. Autism does not define our child, but it is a part of her.  Our daughter is who she is with or without the label of autism.  She is defined by the light possessed within her very being, not by a disorder.  With that said having autism has shaped how she sees the world and interacts within it.  Being afraid of my daughter’s autism is like saying you are afraid of my daughter, but only you are not looking at all of her, you are only looking at the parts of her you find difficult to relate to and understand.


3. Our daughter needs acceptance in group activities just as much as those group activities need her.  We aren’t placing our differently abled daughter into playgroups at the unfortunate expense of other families.  While it is true that the best way to teach an autistic child social skills is to integrate them with other children, it is also true that the best way to teach typically developing children social acceptance is to integrate them with children who are differently abled.  The best part is that kids are often the last to see these differences in the same light that adults do.  Stop worrying about the negative effect my daughter could have on other children, and start embracing the positive.


4. Telling us she does not seem autistic is not a compliment, although I know it is often offered as one.  As previously mentioned the fact that our daughter has autism is in no way an insult to who she is.  Comments like this one more so go to show that too many have a preconceived notion of what autism is and that it is somehow bothersome that our daughter has been “labeled” with it.

 

Much of the world is still clearly lacking awareness when it comes to such a highly prevalent developmental disorder.  While the current statistics from the CDC are showing 1 in 68 children have been identified with a pervasive developmental disorder, most people still only refer to that one guy they knew back in high school, or the key autistic character on a popular television show.  The spectrum is much broader than you think and since each person also is born with their own personality and family structure it makes each person with autism unique, just like the rest of us without.

Our daughter is autistic and that really is okay.  We, more than anyone, are fully aware of what that means when it comes to her.  We never mind people inquiring, but the approach is often rather off.  It is not her autism that is frightening or hurtful, it is other people’s views of what that diagnosis means for her that is.  I cannot speak for everyone who has a child with autism or different developmental needs, but I can tell you what would be a much better way to approach this situation when it comes to our daughter.

Dear sibling to a child with "specialties": Let me tell you why you're amazing....

Hey there little friend,

I heard you are the sibling to a child with "specialties" and I wanted to write you a letter explaining why you have a one up on life.  I know your life might seem hard or different from your friends, but trust me you most definitely will be more prepared for this life than anyone else walking around this big ole Earth.  Let me explain...

I heard that you deal with more than any child should, like having your parents spend a lot of time away from you.  You know they are taking care of your sibling, possibly bringing him or her to the doctor, maybe your sibling is admitted in the hospital often, they might be on the phone taking care of insurance business, or even physically caring for your sibling constantly.  I know my friend.  You see these happenings more often than not.  You see the love that your parents have for your special sibling and it is being embedded into your heart.  You see the patience they exhibit when caring for him or her and it is being buried into your soul.  You see that your parents never stop trying to get what your sibling needs and it is being ingrained into your mind.  You see your parents exhaust themselves making sure that your sibling and you are well taken care of and loved and you are learning from this.  You may not know it, but all of these "little" things are teaching you traits of how to be an amazing person.

I'm certain that being the sibling to a child with different needs than most is a struggle.  I know you have those moments where your heart stings with jealousy, where you are worried sick over your sibling, or when you get mad because you can't go to all the birthday parties you want to.  All of those times are totally understandable.  You have a right to be upset every now and then, but I can bet that you can think of some pretty cool things that you have in your household that your friends don't.  How about all the cool equipment your sibling has? Huh?  I know you've climbed into that wheelchair or played with his super cool assistive technology toys!  How about getting to see your sibling reach a milestone and that proud feeling that overcomes your body?   You get to experience a friendship that is like no other.  Your sibling completely and utterly trusts and loves you with a love that can penetrate the coldest heart.  They look at you with those beautiful eyes and know that you are there for them no matter what.  The bond you have is indescribable.  You are their sibling, their friend, and their protector.  Your sibling might not be able to speak verbally, but we both know that your hearts together carry on conversations that us adults could never possibly understand.  And I tell you what, we are so extremely jealous.

Did you know that your parents watch you and your siblings interactions on a daily basis and their heart literally wants to burst out of their body with pride and love?  They see everything you do for your brother or sister.  They notice when you walk by and give them a quick kiss, stroke their hair, or give them a hello.  Your mom and dad love to witness you sticking up for your special sibling, or when you go out of your way to make sure he or she is included in everything. They quietly observe you as you help with therapies, put oxygen masks back in place, hold their hand during tests or doctor visits, or wipe their innocent little face.  Your parents recognize every time you perch yourself on the counter to help make medicines or bring them a diaper, a syringe, or whatever else they are calling out to you!  You do such a crazy amazing job helping your parents.  It surely takes a wonderful little boy or girl to do what you do on a daily basis.  I'm sure they tell you thank you, but sometimes if they don't just know THEY ARE BEYOND THANKFUL FOR YOU!

But most important of all, my dear one, the reason you are going to ROCK this life- you know true love, you know true heart ache, and you know what is truly important.  You have lived a life that takes a strong heart and a strong mind.  You will mature much faster than your schoolmates (don't be too hard on them), you'll exhibit compassion that astounds others, you'll know more about healthcare than 95% of adults you pass on the street, and you will most definitely have a wicked sense of humor that will enable you to keep life joyful no matter what!  When you were introduced to your sibling with complex needs for the very first time, that moment in time is pinned in the stars, for it was then that your destiny was determined.  You will be an awesome human being and you are going to change lives for the better....all because you were the sibling of a child with specialties.  Rock on my brave friend!

All my love,

the momma of a child like you and your special sibling

I Loved You Your Whole Life

Like an instinct I knew you were there.  I held onto the small plastic device that would in a near instant be the confirmation I did not need.  I could already feel you burrowing into a place deep beneath my heart, immersing every part of my existence in a new level of love I had never felt before.  I was filled with so many emotions, astonishment working as a mask to cover the fear of the fact that you were not planned.

Like a trance you immediately came over me, the love I felt becoming more powerful by the day.  I had a new strength I did not know existed within me, a will to stand and fight wars of words, to overcome obstacles out of the realms of this world to protect you.  You quickly became the only thing I truly needed, the one thing I did not realize I was missing in this life.  You became my everything.

Like an instant change of course you became my future, the clarity I had never had before.  Every single plan now surrounded you; things I did not even know could be desired for were now my only focus.  My every will to become a better human was to make you proud of the person you would one day call Mom.  I wanted different for you.  I wanted better.

Like a constant motivation you drove me to treat my body like the temple it always should have been.  I had an untamable desire to keep it a perfect place for you to grow.  Every single; bite, step, and hour of sleep carefully calculated to be sure that you would continue to thrive.  If only it could have been that simple.

Like a flash the winsome world that you had created with your presence abruptly turned to shades of grey.  The eight weeks of perfection that had been your life had become endangered by symptoms that were getting worse by the hour and words spoken by carefree doctors in cold emergency rooms. The echo of “threatened abortion,” still haunts me to this day.

Like an instinct I knew when you were gone.  As your heart beat slowed to a stilled silence, so did the parts of me that had any will to keep moving.  A certain death overcame my very being; a pain enough to match the love I once had living deep inside of me, a despair masking any joy I once had.  I could not remember how I even used to breathe before you.

Like a forced sense of self-worth I had to will myself to survive.  The person I had been before you ceased to exist.  You came into this world forever changing me and then left, taking pieces of me with you.  I had to continue with what was left of me, however small those pieces may be.

Like a tattered sailboat drawn to the shore, I came to find my solid ground.  It hurt me to think of what had become of the person I wanted so badly to be for you.  I needed to do better, not only for my own well being, but because to not do so was to openly admit to myself that losing you left me no longer your mother, and that was a thought I simply could not bear.

Like a prayer I carry you inside my heart to this day.  The nine years that have passed without you often seem like an eternity compared to the nine weeks I held you.  The very foundations of the mother I am today are owed to your existence.  Not a day goes by where you are not in my thoughts.  Four children now to fill my arms and I still wonder what it would have been like to hug five.  I know one day we will be reunited, until then I will continue to live on knowing I was blessed to love you your whole life.

Living life with a child who has Epilepsy...

Whether you were told by a doctor that your child would likely suffer from seizures or your child began having seizures unexpectedly, nothing can prepare you for a life with a child who has epilepsy.

When our kids are hungry, we feed them; when they are sick, we give them medicine; when they are crying, we console them- but when your child is seizing there seems like there is nothing you can do about it, but wait it out.  Sure, sometimes we have to give rescue meds, but for all the times when the seizure is a few minutes, or not strong enough to give rescue meds-THAT is when this helpless, awful feeling hovers over us.  We just watch and wait, praying for the end to be near.  This goes against every momma law there is.  It is our natural instinct to protect our children, but epilepsy doesn't care one...little...bit.

I don't know about you, but I was seriously clueless about epilepsy and seizures before my miracle boy was born.  All I had known about seizures was what I had seen on TV or read in books.  Boy, did I get a rude awakening and a lesson in seizures when my son began having seizures at 6 months old.  As my sweetness got older he introduced me to a variety of different types of seizures.  I first met the Tonic Clonic family (and their twins Tonic and Clonic who like to show up multiple times throughout the day), then along came Ms. Atonic (aka Head Drops), not long after Mr. Myoclonic (boy he sure is an aggravating fella too), then Mr. and Mrs. Partial (Mr. Simple and Mrs. Complex that is..).  I was so overwhelmed meeting all of these seizures and learning their crazy personalities.  They like to take turns visiting, but sometimes it's just a big ole party where they all want to attend.  So not my kind of party.

Caring for a child who lives with seizures day in and day out is mentally and emotionally exhausting.  You live with heart ache.  You live in fear waiting for the next seizure.  You live a life that feels lonely and alone.  Sure, you might have friends that understand your journey, but it is extremely rare to have someone TRULY get it.  Even in your own family, surrounded by a crowd of people who love you, you feel singled out.   You live a life of anxiety waiting for the next seizure, you live a life learning how to phrase your child's seizure over the phone so that the neurology nurse can picture it, you live a life full of doctor's appointments, EEG's (and how to get that nasty glue out of their hair), anti-seizure medicines, and researching ways to help your child.  It is a life that we didn't ask for, but it's a life that we take on gladly to help our child.

Though raising a child with epilepsy is hard, it isn't about us.  It is about our sweet miracle child that endures these electrical brain storms.  Making their life enjoyable is our life's mission.  Aggravating the neurology office on a weekly (sometimes daily) basis for answers, pleading with them for another VEEG, begging to try a new med, or even the calls where we just cry in defeat, it is what we do....for our child.  Watching your child digress developmentally from seizures is not acceptable.  The momma bear in us comes out and fights her way to finding an answer, a solution to the problem that is epilepsy.  And then we momma's are hit with the reality that epilepsy is a killer.  It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.  This fact hits us hard because if this hasn't happened to us personally, we know someone from our support groups on social media who has.  We cry in fear of our child being taken by the epilepsy monster and we cry for others who long to hold their child again.

Epilepsy is real. Epilepsy is life changing. Epilepsy takes lives every single day.

November is National Epilepsy Awareness Month, I want to leave you with these facts (from epilepsy.com)

-Anyone can develop Epilepsy, at any point in their life.

-Epilepsy is not contagious.

- Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined.

-You can die from epilepsy.

-Epilepsy research is GREATLY underfunded.

-Epilepsy DOES NOT define a person.  Most people with epilepsy CAN DO the same things that people without epilepsy can do.

Seizure first aid is so important, please take a moment to review this poster from the Epilepsy Foundation.  You never know when you might need this vital information.  And PLEASE help spread Epilepsy Awareness!

 

50 Pounds of Mashed Potatoes

Today is 11/12... three days after the Night of a Thousand Stars, special dinner-dance we have as an annual event for people in our community with challenges, their families and caregivers. Once again, it was a pretty successful evening. Although it was raining outside, the room was filled with sunshine and warmth.

On Friday we had an orientation for our volunteers, after which, we begin setting up and decorating. This time we were able to have all things completed by about 9 pm. The list of volunteers was filled with people of all ages and backgrounds. There were JROTC cadets, National Honor Society members, civic groups and some people with disabilities who wanted to volunteer, rather than attend. The most touching moment came when a lady walked in with a bunch of little ones aging about 6-12 marching behind her. They announced they were there to help- and the did. They all went straight to work, putting on chair covers, putting luminaries up the stairs of the stage and helping to put on table clothes and lay out napkins. I asked the obvious, where did they came from and how did they know we needed help? It seems that one of the churches sending volunteers sponsors a cottage where these kids who are in the foster care system. They thought that the idea of them helping others would be a good project. The kids asked questions, worked hard and left knowing that they would not see any of their hard work in action. I made a note to myself that after everything was done, these kids had a pizza and ice cream party coming their way!

A few weeks before, I had gone into a local restaurant and asked if I could get a discount on 50 lbs of mashed potatoes. I was asked to wait while they got the chef. By the time he reached me he knew that I was there to ask for something. He reached out his hand and said hello, then had the amazingly warm look on his face. He said, "What do you need?" I answered, "we would like to purchase 50 lbs of mashed potatoes for our dance and, if we could get a discounted price that would help even more." His eyes met my serious face and then he gave me this big smile and said, "You got it! What else do you need?" I told him that was it and I walked out with this incredible feeling of warmth because a man I never met, just gave us 50 lbs of mashed potatoes to help make the evening great for our guests!

This was only one of many good deeds from the community. I can't help but think that there was so much more in that evening then just providing a special event for some very special people. It was an awesome chance to see many diversities at work in a happy and loving way. We had a very well known local weatherman come in a greet our guests, the mascot of our Tampa Bay Rays, Raymond made an appearance, dancing with our guests and taking selfies with them, the lady "pirates" of the local Krewe came to visit. Before leaving weatherman Denis told me we could count on him again next year. The Krewe hugged and kisses us all and even offered to do a fundraiser for us next year. I had already been told that we could count on Raymond's visit as long as we had our dance.

Next year, we need to find a bigger place. We had to turn away about 30 people because we were filled to capacity. We are already searching and hoping to find that perfect venue.

The reason for a piggy back blog about the Night of a Thousand Stars Event this month, for me, is to just give you all the chance to hear about how special and unique our kids are and what incredible things they are able to bring and accomplish. So many of my volunteer's hearts were touched by the joy, happiness and laughter within that room. What is so wonderful is that it is so easy. You share your caring and you get back huge amounts of gratification and joy! I cannot wait until next year! P.S. As of yesterday, 11/11/2014, we have established our non-profit Night of a Thousand Stars Foundation, Inc. It is our hope that we are able to not only bring this very special event to our area but increase our Foundation to offer, advocacy, education, awareness, information and events not only relevant the special needs community but, to to promote togetherness for everyone!

My real blog post

This past weekend we went to my brother in law's 30th birthday party, and while standing in their kitchen I happened to notice their calendar.  It had two things on it for the entire month.  I stood in awe and amazement and perhaps a little bit of jealousy.  What I would give to only have two things on our calendar.  We have two calendars just to keep track of everything.  Our lives have become a hectic semi-organized litany of doctors appointments, OT/ST/PT therapy sessions, phone calls to medical equipment suppliers, coordination of services, driving to/from daycare and grandma's house, etc etc etc.  Throw on top of that doctor's appointments for me (with my own health issues), working full time, laundry, cleaning, cooking, dishes, grocery shopping, taking care of the house, picking up prescriptions, and trying to maintain a healthy relationship with my husband, and there are times that I don't stop moving until my head hits the pillow at night.  I do have to say that my husband helps out a TON with the housework, cooking, and cleaning, and I am very blessed to have him so I'm not doing it all alone.  Even so, I wake up in the morning completely tired, drained, and just plain exhausted.

I think sometimes its so easy for us to get caught up in the day to day activities of caring for our miracles that we forget to take care of ourselves.  We are so busy, crazy busy, that by the end of the day we are too tired to think about doing anything for us.  I think that's when the problems start to creep in.  We just go through the motions of daily life but don't really LIVE it.  Burnout, exhaustion, and functioning on auto-pilot.  Caregiver burnout is a very real thing, and should be taken as seriously as any other health issue.  Taking care of a miracle (depending on their medical situation) can be a full time job for several people put together.  Sometimes we try to take all of that on ourselves.  We have to remember we are human too, and can only do so much.  If we just go, go, go without a break, we will reach the point where someone needs to take care of us.   Sometimes, we need help.

 

And I think that's where I am.  My daughter is coming up on her 3rd birthday in December.  We have started the transition from Early Intervention over to the school district.  Meetings and paperwork abound.  We just switched formulas again, but she won't drink the new one either.  I count every calorie, every ounce she gains or loses.  Winter is coming upon us and I am nervous, will she be as sick as she was last year?  Will I miss as much work?  I am in a new job that is much more demanding of my time and energy, but we need the money so I have to do well.  My doctors are changing some of my medications around, and although I know that the end result will help me better, the change itself is always difficult.  My car is falling apart.  Money is tight.  Bills are everywhere.  My stress level is through the roof.  On top of all that, my husband and I started fighting.  A lot.  For years, 95% of our conversations have been about Elizabeth, and somewhere along the way we lost the ability to communicate about anything else without  a fight ensuing.  We have been so focused on our daughter that everything else went by the wayside.  We are now in couples therapy to work on our communication skills, and to try to learn healthy ways of dealing with the stress level in our lives.

 

So I guess the point of my rant is this:  so many times I read blog posts that are uplifting, encouraging, positive, optimistic.  Sometimes when I read those posts I feel like there's something wrong with me because I don't feel that way too.  Like, am I the only one who gets exhausted and discouraged and depressed?  Am I the only one who cries in the shower because that's where I can get 5 minutes alone?  I don't think I am ... so I wanted to do a different blog post and talk about how hard this can be sometimes.  How much other people just don't get it.  How stressed we are, how tired we are.  How overwhelming this journey can become.  How we acknowledge the strength it takes to be a MOM, but sometimes we just get so tired of having to be strong.  We want to relinquish our superhero status sometimes.  And how important I think it is that we acknowledge that.  The lives we live are not easy.

 

But at the same time, I want to stress how important it is to take care of yourself.  So often we put our children first and make sure their needs are met (as any MOM does). But in doing so, are we putting ourselves into burnout mode?  We need to occasionally take time for ourselves, and take time for our marriages/relationships.  What good am I to my daughter if I'm falling apart and exhausted?  What good are we to Elizabeth if we are fighting?  I have to put myself first sometimes so that I am able to be a better parent to her and a better wife to my husband.  We have to put our marriage first so that we can be loving, kind, attentive parents to Elizabeth.  Much easier said than done.  Although my husband and I are making a concerted effort to make time for just the two of us, and we are going to couples therapy, I have a much harder time taking care of me individually.  I am trying, though.  I go and get my nails done once a month.  A few weeks ago I got my haircut (first time in a year).  A little bit of "me" time.  I make sure I can make it to my own doctors appointments.  That's really it.  I know there is more to it than that, and I am working on taking care of me, so I can better take care of her.  I think we are all working on that.  But it's hard, it's really hard.

 

[caption id="attachment_6783" align="alignleft" width="224"] Me and my miracle, cuddling by the campfire one night when I was just terribly overwhelmed with it all, and burying my face in her hugs was all I could manage to do.[/caption]

 

So this blog post may not be uplifting, or optimistic, or enlightening.  It may not teach you anything new.  But this blog post is real, this is from my heart.  I want to acknowledge to all the MOMs out there how hard this journey is.  I have had a very rough couple of months, and I wanted to write this to let you know that you are not alone.  We all struggle, we all cry, we all are overwhelmed.  We all go through good phases and bad.  We get tired of being strong all the time, it's exhausting.  Never think you are alone.  You are surrounded by an army of MOMs who can relate to what you're going through.  Try to take some time for yourself, if you can, even if its 5 minutes a day.  Take some time for the relationships in your life so they don't disintegrate.  Recognize that its ok to have bad days, or bad weeks, but remember that it won't stay that way.  The one good thing about life is that it is always changing, so the bad we have today may be gone tomorrow.  Above all remember to take care of YOU, so that you can be the best possible MOM to your miracle.

 

And for all you MOMs having a rough time, I am sending love and hugs your way ...

Magical Places

Let me tell you about 2 magical places here in Florida. I live about 1 hour and 20 minutes from Orlando, the home of Disney, Universal, not far from Legoland and so much more. For many of our kids, these parks are merely a dream because of the difficulty and expense a trip like this would cause but there is a way for them and their families to experience the dream!.

I have been made aware of 2 awesome, magical places in Orlando that are there strictly to make sure our kids have a time they only dreamed about. The first is called Sunshine Foundation's Dream Village. Here amongst the hustle and bustle of the city is a place where our special kids and their families can come to spend a week going to theme parks and, at each day's end, they will come back to one of nine villas, designed to accommodate the entire immediately family right on the Dream Village property. These invitations are "all expenses paid" vacations and the answer to dreams of Mickey and Minnie, hot dogs and cotton candy and all things magical. The limitations are listed on the web site, Sunshine Dream Village is only available to those from somewhere in the USA. If you are interested here is the web site where you can get further information


The other place is actually in Kissemmee, Florida, a hop, skip and a jump to Disney and all the attractions in Orlando. It is called, Give Kids The World. When checking out the website, make sure to check out the story of how this awesome place began.


My husband, daughter (who has CP) and I are volunteers there. We had to go through a background check and, 2 hours of informational training. GKTW has 70 villas on premises, it accepts families from all over the world and pays all expenses, including: plane tickets, rental cars, all housing expenses one of the 70 - 6 person villas, assuring that the entire family will be able to enjoy this respite from therapies, sickness and simply have the chance to enjoy being a family together. The premises are truly magical. I can't remember it all but, there is a train that goes around the village, a pool, a pirate ship, castle, 2 restaurants, a cookie truck that goes around giving out cookies, many times there is special entertainment, a theater and so much more...and, most important, ice cream anytime you want it, even for breakfast...and a snoring tree!! Accessible buses pick the guests up and bring them to the park of their choice. In the late afternoon or evening, the guests return to GKTW from their day of fun upon their return, GKTW keeps everyone busy with special entertainment and fun things to do. There is even one designated evening which is called Parents Night Out, the volunteers provide a fun evening for the kids so that the parents can enjoy some very much needed quiet time usually GKTW provides discounts or gift cards for free dinners in Orlando.


No one can apply directly to GKTW for a visit, you must apply through and be recommended by one of the many agencies that works with GKTW, such as, Make-A-Wish or Dream Foundation. In total, applications are accepted from over 70 agencies both here and abroad. If you need to find one of the agencies, contact GKTW and they will lead you to the connection.


Please look at this information and give your child a dream to enjoy and, your family the chance to spend time together without having to be on schedule, going to doctor's appointments or brace fittings. A chance to be like every other family on a vacation together.

When I had my orientation to be a volunteer, our trainer said, "Welcome to GKTW, this is a place where you leave all your troubles outside the gate and it is your choice if you want to pick them up on the way out or remember the time you spend here and it will change your life!" That statement was meant for the volunteers and, also for the guest families.

Encouraging Gross Motor Development

From when our daughter was just a newborn, it was evident to me that she had "differences", and was going to need some (lots of) intervention to help her be the best version of herself.

During the most intense period of her early life, Sophie was seeing 19 medical specialists, and attending speech therapy, occupational therapy and physiotherapy sessions.  We were physically drained, and financially stressed.  Something had to give.  We had to make some tough decisions around where to direct our time, energy and money.

We were lucky in that Sophie's gross motor delays were not as pronounced as some of her other issues.  So we made the decision to drop physiotherapy, and replace it with “at home” and family activities to help develop her motor skills.

Don't misunderstand me.  I'm not saying that professional physiotherapy sessions are not immensely valuable, and for some children they are absolutely essential.  But we had to make choices.  And we were lucky that, while Sophie has low tone (also known as hypotonia), she was not so physically delayed as to need continued intense professional physiotherapy sessions.  But she did need intervention.  So we researched, and researched, and started to develop some ideas about how to help her at home.

I'm not a therapist.  I'm not suggesting that what helped our daughter will necessarily be appropriate for other children.  But I’d like to share some of the things we did with Sophie to help develop her body awareness and physical skills.  For some of you these ideas may be impractical, unsuitable, or plain impossible.  For others, perhaps these suggestions may give you a few more ideas to play with.  But PLEASE - check with your doctor or physio to see if these activities are suitable for your child before attempting them at home.

• Sophie was uncomfortable with touch, so we attempted to get her more comfortable through massage from when she was just a few months old.  We took it slowly.  Just a small belly rub during nappy changes.  Or rubbing her arms or legs when she would allow it.  Some lights stroking, some heavier stroking.  We also started to do joint compressions at bedtime.   These activities to increase her comfort with touch, help build neuro-connections and increase her tolerance of different sensory experiences.


• We incorporated "crossover" exercises into her daily routine.  Each time we changed her nappy, we would take her left arm and touch it to her right foot, then take her right arm and touch it to her left foot.  Repeat, repeat, repeat.  This was to help her with “crossing the midline”, which is important in bilateral coordination.


• At least four or five time a day we would take her little arms and gently try to pull her up to sitting, supporting her head as necessary.  We did this to help build her abdominal and neck strength.


• We took her to Gymboree. We enrolled her in a session with kids slightly younger than her, so her physical delays wouldn’t be so evident, and she wouldn’t be frustrated by her inability to “keep up”.


• We took her to playgrounds.  All the time.  At first she needed much more supervision than the other kids of her age.  We had to be directly within arms-reach, or hands on.  Over time, her confidence and abilities grew.


• We went camping. Often.  Camping was especially great once Sophie started to be able to walk, as the different textures and gradients of the environment challenged her skills in balance and proprioception.  Hills, grassy places, sandy spots, rocks, pebbles, tree roots and twigs.  Puddles . Creeks and water holes.  
  
  We noticed a definite "leap"  in her physical abilities each and every time we took her camping.  So we took her, even when packing the car seemed impossible.  Even when the mere prospect of leaving the house filled me with dread. We had always loved camping, but the exhaustion of sleep deprivation certainly didn't make it an appealing idea in the first couple of years.  Luckily the rewards always outweighed the effort, and I have no doubt that all of Sophie's camping experiences have not only improved her motor skills, but also helped her with her sensory issues and socialisation.




• My husband did a lot of work around proprioceptive awareness from when Sophie was only a couple of months old, including rocking her from side to side, lifting her high into the air and lowering her down to the ground, spinning her and rocking her.



• My husband carried Sophie in a backpack before she could hold herself up, tucking her in tightly with towels.



• Before Sophie was strong enough to hold herself up, we tucked her into her highchair with bath towels, so she could experience eating while sitting.



• Once she was able to sit, we bought her a tiger Zooba, which we have always called her "bouncy tiger" . Sophie sat on that at a children's low table for all meals (and still does).  The Zooba required her to continually shift balance and helped to develop her core strength.*



• Once Sophie could stand with support we bought her a mini trampoline with a handle,  and she was only allowed to watch TV if standing on the trampoline.  Even before she could bounce, the gentle movement of the sprung base required her to continually readjust her balance.

Thanks to the financial support of my parents, we were able to start Sophie with an excellent private Occupational Therapist when she was two years old. Robyn Simms worked (and continues to work) on fine motor skills and play skills with Sophie, but she also worked on her gross motor skills.  Thanks to Robyn our repertoire of "tools" with which to help Sophie grew.

• We started to sit Sophie on a Swiss Ball, holding her by the hips, and moving the ball from side to side.


• As she grew in confidence, we would lie her on her tummy over the Swiss ball, tipping it one way until her head nearly touched the floor, then pulling it back until her feet were nearly touching the floor.


• As her strength grew, we held her by the feet and put an object just out of reach, then rolled the ball forwards so she could reach out to grab the toy.


• When she was strong enough, we progressed on to holding her feet in the air while she supported herself on her arms, and moved forwards  "wheelbarrow" style.


• We used a scooterboard to develop her core strength. At first we had her sit upright on the board, and gently moved it around, to assist with developing her core strength and balance.  As she grew more confident we progressed to more difficult exercises – for example having her lie on her tummy, while we pulled the board around.  She is now able to lie on her tummy and use her arms to drag herself around on the board.


• We bought mini three wheel tricycles without pedals and of different heights, including a scuttlebug.  This required her to develop the strength in her thighs and core in order to propel them forwards.





• We bought three second hand slides of varying heights and angles, to help her with climbing and overcoming her fear of sliding.


• 
  We bought balls of all different shapes and sizes, and practiced rolling them to her, and getting her to roll them back, then progressed to throwing and, finally, kicking.  A "knobbly" ball was particularly good when we started off, as the protruding bits give more grip and more sensory feedback.


• We installed a sandpit in the backyard, a swing, a climbing cubby and a rocking toy.

Almost all of these items were bought second hand or gifted to us, so the costs were kept low, while our house looked like a gymnasium!  Toy libraries are also a good option for when funds are low.

At the age of just three Sophie started horse riding with Riding for the Disabled. Thankfully the costs for this were low, as the center is run by volunteers and subsidised by donations and some government funding.  She screamed her way through most of the first few sessions, but thanks to the gentle care of the volunteers she soon lost her fear and began to thoroughly enjoy her sessions. Hippotherapy (horse riding therapy) has helped tremendously with her poor posture, curved back, low tone and sense of proprioception (balance and awareness of body in space).  It has also significantly increased her confidence and willingness to try new things.


Developing her physical skills and confidence was (and continues to be) a team effort. Sophie stays with my parents for two days each week, and they diligently work with her.  We incorporate "physio exercises" into Sophie's day, each and every day, but under the guise of "play".

Sometimes Sophie is reluctant and fearful to try new physical challenges.  "All done now" was a phrase she used often. And sometimes tears flowed. But despite her trepidation, with gentle and continued encouragement she would always” give it a go” in the end.  She showed (and continues to show) so much courage and perseverance.  Those are qualities I admire in her so much, and qualities that I'm sure will stand her in good stead throughout her life.

In terms of Sophie's challenges, her gross motor development is currently the least of our concerns.  That's not to say she doesn't have delays, and that continued intervention is not required.  It's just that in the grand scheme of things, we know she will be "okay" in this regard.   She may not ever be the fastest swimmer, or the most graceful dancer, but she has good enough mobility that it no longer interferes with her capacity to join in on the playground.  She can enjoy the delights of trampolines, and slippery slides, climbing, and playing "can't catch me".  And really, that's what matters.

At five years old, Sophie is still more physically frail and clumsy than other kids her age.  But now when she falls, rather than tears or hysteria, she just laughs and gets straight back up again.  A wonderful lesson for me to take on board...when you fall..laugh and get back up...keep trying, and never give up!

I hope these ideas may give you some inspiration.

If you would like to read more about our journey, I'd be delighted if you took a look at my blog about Sophie.

* Please note, the Zooba  is not currently available in the United States, but the product has been licensed, and creators of the product are currently in negotiations with a distributor in the United States.  Zoobas are expected to be available soon in the United States.  For more information, you can contact the creators via the website link.  If you are reading this post and wish to purchase a Zooba, they are offering a 5% discount if you quote this reference...MOMGM1

In the US you can purchase a Rody Pony, that is very similar to the Zooba Tiger.

Why the phrase "Curiosity Killed the Cat" Haunts Me

Seven years old…our son.  Bilateral Persylvian Polymicrogyria, Lennox Gastaut Syndrome, Polymerase Gamma 1 Mitochondrial Disorder, Osteogenesis Imperfecta, Nephrocalcinosis, Neurogenic Bladder, Dysphagia, progressive, degenerative, palliative, terminal…our son.  Cute as a button, infectious laughter, extra-long eyelashes, blushed cheeks, prefers blondes, lover of country music, baseball player, first grader, wordless but wise, morning person…our son.  Feeding tube, bowel management program, cathing regimen, ventilator dependent, suctioning needs, tracheostomy tube, percussion vest treatments, wheelchair, fifteen specialty physicians, therapies, therapies, and more therapies…our son.

Dog?  Not our son.  Cat?  Not our son.  Family pet?  Not our son.

Parenting a child with so many complex medical needs has made my husband and me no strangers to well-intentioned but rather ignorantly blissful commentary about our son.  Somehow I still struggle to wrap my mind around how well-meaning people find common ground with our “plight” by comparing my son’s struggles to the struggles and needs of their beloved pets?  I understand that we are not always terribly relatable, and that sometimes the effort to be relatable is just that - effort.  However, I am never receptive <understatement of the century> to the notion that somehow my son’s sensory seeking behaviors – like his love of chewing his fingers nearly to the bone – are somehow the same motivations that your beloved “Fluffy” has for chewing.  By the way, shopping at the local pet-store for “chew toys” for my son is not something we will ever do, but thank you for the kind suggestion and we are thrilled that you were able to find some long-lasting squeaky toys for “tough chewers” like Fluffy.

I have established that our son is not your pet – he is not our pet either –he is an awesome little human being with infinite value who has taught us a lot about love and acceptance and I fear he is beginning  the end of his courageous battle against mitochondrial disease.   So why exactly does the phrase “Curiosity Killed the Cat” haunt me in the darkest recesses of my very sleep-deprived brain?  The same places where I store up the seemingly endless nonsensical scenarios of doom which always involve breaking my two front teeth in half or my irrational anxiety of  burning the house down because I threw a piece of burnt toast in the trash and maybe I threw it on top of a dry paper towel which might spark and catch on fire which will then result in our house turning into a pile of ashy dust and what insurance company will cover a house burnt down by toast???  <deep cleansing breath>

Seven years of countless tests, hospitalizations, procedures – DIAGNOSES - more tests, more procedures, more hospitalizations and now we come full circle investigating yet again for more diagnoses to explain possibly another rare condition without a cure.  What is it that drives our rather fierce need to know even when we are well aware that nothing will change the outcomes?

This week my husband and I were given the “option” of having a sedated brain MRI for our son to investigate some new symptoms that have recently developed - mainly some really disturbing muscle spasms, neuropathy, and increased seizures of a variety we have never experienced with our son and we thought we had experienced every seizure known to the medical world: tonic, tonic clonic, complex partial, infantile spasms, grand mal, subclinical, myoclonic, absence, status epilepticus…but what in the heck are these facial-like seizures??  Are these seizures at all?  We wanted to know, but sedation and mitochondrial disease do not play nicely together and after some fairly unfortunate past sedation attempts we are hard pressed to find an anesthesiologist – even in one of the top children’s hospitals in the world – who will sedate our son unless it is a life or death situation.  Is this life or death?  Well, we don’t know??  Maybe?  To us, yes?  The advice of many of our son’s trusted physicians against further investigation left us confused, and for the first time during our seven years as parents, left us somewhat hopeless.  Was our medical team so sure that the risks of further testing far outweighed the benefits of knowing a little bit more about disease trajectory?  Was the potential to perhaps slow disease progression not enough to take the risk?  For the first time ever, our son suddenly felt like a cat, and were we really going to kill him just out of curiosity??  Was our “NEED TO KNOW” actually going to kill our son, when all we have ever wanted was to save him, desperately so?

I was having an existential crisis about my own son who I had established LONG AGO was definitely not a dog, and definitely not a cat, despite the failed attempts from others to equate him as such, but who doesn’t know that “curiosity killed the cat”??  For a moment I thought, well CRAP, did our doctors think Owen was a cat too?  I don’t even LIKE cats!!!!  My husband and I found ourselves just sitting there in clinic staring at each other, hunched over, staring at the doctors, staring at each other, staring out the windows, staring at the bleak tan walls decorated with whimsical pictures painted and drawn by able-bodied children, children whom my son would never become  – and there it was a drawing of a patchwork cat.  We continued to sit there as wordless as our son - but definitely not as wise (and I swore I could smell toast burning down the hall).  Perhaps our son was a patchwork cat?  Perhaps we intimately knew about some of the pieces of who he was, but that we would never know what the red spotted patch, the yellow zigzag patch, or green striped patch were truly made of?  Would it matter if we knew?   Would it change that he is still a patchwork cat made up of many different materials and fabrics.

Somehow we found ourselves in a ship that always seemed to have a good sense of direction, even in the stormiest seas, but all of the sudden it felt like we were sinking.  The decision was laid fully on us about diagnostic testing and the admirals of our ship – our trusted physicians - wanted nothing to do with the direction we wanted to sail.

“How do you want to proceed mom and dad?”
"It is up to you mom and dad?”
"You understand the risks don’t you mom and dad?”
"You understand this won’t change the outcomes of his disease mom and dad?”
"Mom...mom...mom...mom...mom???"

Why can’t they ever look at dad or say dad first?  Oh the pressure!  I ran my tongue roughly across my two front teeth to make sure they were still steadfast in place.  The agonizing, aching, anxiety swelled up in the pit of my stomach as I said, “I want to know, let's do the testing”.

Today, our son had a sedated MRI and we are awaiting the results, the results that will not change the outcomes of my son’s life, but results that might help us know if we need to change the direction of our ship even if it is against the advice of our admirals.  The results that may or may not help us better define the green striped patch on our patchwork cat.  Our quirky little man is smiling and doing well post sedation and desperately showing everyone who enters his room his IV site and how much he is “suffering” from it with a rather dramatic furrowed brow and IV arm waving in the air.  We are thankful he did well.  We are thankful we made the decision even without our physicians approval, because our son is not a cat.  He is Owen.  Our son, with many patches - some we know very well - and others we will likely never understand the fabric of which they are made.  Curiosity killed the cat…but our son is not a cat.



Fellow Mommies of Miracles, when it comes to our most medically fragile children...do you think we will have the wisdom and discernment to know when to say "enough is enough"?  Should we ever say it?  Should we resist our need to "know" if we also know that the outcomes will remain unchanged?  How do we weigh risk when the stakes are already so high?  Please comment and discuss.

"Life with Cerebral Palsy" with Stephanie Cox: Introduction

In 2014, author Stephanie G Cox's book, "Gentle Firmness" was published by Winters Publishing Group. Her book highlights how Christian parenting sets firm boundaries and gently helps children learn to cooperate.

Nothing too remarkable about a book on parenting in 2014, right? Except that this 500 page book was researched and typed without the use of hands…or a voice to text program…

You see, Stephanie G. Cox experienced a long period of oxygen deprivation during her birth which resulted in damage to her brain. This short period in her life resulted in a life-long condition called, Cerebral Palsy.

As with anything, symptoms of this condition can be very different in every individual.

• It can be mild or severe


• it can involve only one side of the body or both sides, or may be more pronounced in either the arms or the legs.


• It can reduce the brains ability to process information (as in make the person less intelligent)


• It can cause tremors, abnormal movements, loss of coordination but allow a person to still walk or, like Stephanie, the person can be left unable to walk at all.


• It can cause pain, seizures, hearing or vision problems, or trouble with speech.

Stephanie has more severe symptoms of cerebral palsy. She lives life in a wheelchair and has her own language which she affectionately refers to as "Steph Speak", that is most easily understood by those who know her. But, though she is not able to speak quickly or clearly, she hears herself in her mind just fine, as her mind is "sharp as a tack!" Cerebral palsy did not affect her intelligence and the Master's Degree hanging on her wall is a testimony to that fact.

Stephanie is unlike most people in the way her body functions, but, is exactly like "you and me" in the way she thinks about her body.

How many of us spend life thinking, "Wow! I sure do type a lot because my fingers are well-coordinated!"

Or, how many of us spend time thinking at the end of each day..."I sure do get a lot of work done around the house every day because my legs enable me to walk without assistance!"

Or, how often have you walked into a store and thought, "I sure did pass through that door easily because...my body was able to coordinate walking, talking, texting, and opening a door all at the same time!"

No. We live our lives and do the things we do and whatever we do it’s normal.

Likewise, Stephanie doesn’t filter everything she does and doesn’t do through her physical abilities. She just lives her life the way you and I do…but also not like you and I do.

Just like I don’t sit around thinking about how my life would be different if...I had the physical abilities of an Olympic gymnast, she doesn’t live her daily life thinking of herself as "disabled."

When Steph first published her book, it didn’t even really occur to her that the fact that she had to type her book with her nose was even that interesting. To her, it’s just the way she types.

Due to her "Steph Speak" way of speaking, programs like Dragon (speech to text) won’t work for her. And, her fingers have a mind of their own so the only part of her that cooperates to type what she wants to say is her nose.

To a person used to typing with their fingers, this is a feat as amazing as watching the physical abilities of an Olympic gymnast in many respects! But, to Steph, it just is how she types.

Recently, a local news station did a segment about Steph and her book and she was surprised by how many many comments she got from the public who imagined that surely she must just type with her nose just for the challenge. Because her physical body is the same as anyone’s in that it is "just her body". She’s surprised at how people have reacted to her physical condition and how little people really seem to know about what cerebral palsy is.

Watch the news segment.

And, so, she and I will be working together over the next year to help the public learn more about what life is like for a person with severe cerebral palsy. I will be doing a series of 12 interviews with her, to be published here monthly, in which we will cover one topic or aspect of life with cerebral palsy from her viewpoint.

We hope that you will find this interesting (and a little entertaining!) and that this will help you all understand her better, and also to understand what life as a "disabled" person is like in general.

Thanks for reading!

~ Dara (and Steph)

OY! The Joys of Fundraising

Hello everyone, since last month, much has happened. I could have chosen many topics, based on any one of a number of events. I chose to write about fundraising. This topic is upper most in my mind these days because of "Night of a Thousand Stars" or NIGHT OATS as I call it. In the last few years NIGHT OATS has become something very near and dear to my heart.

On November 8, 2014, we will be opening the doors of a local church to a very special evening. There will be local celebrities, the mascot of the local MLB team, princesses and pirates. The sanctuary, which holds 400 people, will be transformed into an elegant ballroom, twinkling lights will shine all over the room, delicious food smells will fill the air, as each guest walks in. They will each receive a corsage or a flower for their lapel. The ladies will be provided with tiaras as well. They will enter the room wearing formal wear donated by the people in the community. The ladies' will have had hair and make-up done provided by a local beauty school. There will be a red carpet for them to walk down and a guest celebrity will interview each of them when possible. I guess you wonder why I said "when possible" you see, our guests are adults, 16 and up, with challenges of any type. Our guests are joined by their caregivers and families. You see, this event is to honor our STARS, to give them a special time, one that most kids celebrate by going to a prom, homecoming or other dinners/dances during their school years. Our guest probably did not experience this "right of passage" and even if they did, our amazing guests do not experience this type of evening enough! They should be honored, so this year our theme is the presentation of THE COURAGE AWARDS.

Now that I've explained NIGHT OATS, I am going to tell what it takes to put this on event and the money we had to raise. We need volunteers (High School kids, local volunteer organizations, other churches and other people who wanted to do something positive). I worry about volunteers each year but they always come through and are my shinning lights on the day of the event.

It all begins sometime in late June- we pick a theme. Next is the menu (which often turns out differently as we get donations from restaurants and from people who want to help with the cooking). It then goes on from there.

This year, we unfortunately lost one of our bigger sponsors, making it imperative for us to develop more fundraising activities then we have in recent years. We found out about the "drop out sponsor" last month and are now hustling to get an event together to help us with the needed deficit. A local BBQ restaurant has opened their doors for us on Sept. 27, a Saturday night so that we can bring in entertainment, have raffles and silent auction items. We have been wonderfully blessed to have 2 incredibly awesome bands come forward to donate their talents for the evening, the restaurant is charging a cover charge which is going directly to Night of a Thousand Stars!

So now it is the raffle items and the time element! My job is to get on the computer, find possible businesses to donate, send them a donation request e-mail or call them asking, in the nicest possible way, to part with an item that I know they could sell...Oy! Tough to do but, when it gets a bit difficult, I go to "my pictures" find the "Night of a Thousand Stars" folder from last year, open it and click from one image to another. I quickly remember that awesome inexplicable feeling of happiness as I look at these people laughing and remember their stories. I see images with their families and I see pride on their faces. Our guest all dressed up, wearing make up and nail polish and moms all over the room smiling down on their children no matter if they are 16 or 60. There was so much joy in that room and in my heart. Yes guys, it is a selfish thing I do. There is nothing that equals the feeling and joy when seeing my friends and their families feeling like STARS- even though they may be only one of a Thousand!

So after, I refresh my energy, I reach for the phone, "Hello, may I speak with the owner or manager?" I say. "My Name is Marcia Minutello and I am the co-organizer (my daughter is the other co-organizer) of NIGHT OF A THOUSAND STARS, I am calling to ask if we may count on you to donate an item for our raffle or will you sponsor our event?". Most times they graciously find a way to say no but, a few times a day they agree. Some with little fanfare, other with incredible enthusiasm. That enthusiasm is when I feel my face fill with a smile of joy of knowing we are one raffle or one small check closer to giving our amazing guest the time they deserve. One of the moms told me in her RSVP note for this year that her daughter had picked out her nail polish color from the day after last years event.

Well it is time to get going, grab a bite to eat, and then back to my computer and back to work. One thing more, this night that comes once a year reminds me of how magnificent our kids are. They bring us joy for just being who they are and they deserve the grandest of celebrations. They are each STARS not just for one night but always and we are blessed!

Let's Get Real

Special needs parenting does indeed have its gifts.  It teaches us patience and resilience.  It forces us to be better people.  It forces us to find our voices, so we can advocate for our children. It opens the door to friendships with people we may never have ordinarily crossed paths with.  Every time our child learns something new, the pride we feel is immeasurable. No "milestone" is taken for granted.  We get huge  amounts of joy from the smallest accomplishments, things that other parents may take for granted.

But there is another side to the story. One we are sometimes shamed into not sharing. One we are supposed to "suck up" and hide away, because some people are uncomfortable with hearing our pain.

So let's get honest. In many ways, special needs parents get a bad deal. My husband was fired from his job (with a Disability Services provider!) largely due to taking too much time off to attend Sophie's appointments. They refused to accommodate part time work. I've had to take more than two years off work (and am at possible risk of losing my job)  because of depression and anxiety largely resulting from a traumatic birth, chronic sleep deprivation in Sophie's early years and high stress around Sophie's extra needs.

Make no mistake...I am FULLY aware that there are plenty of parents who have kids with much more devastating issues than Sophie. But I'm sick of minimizing what we go through. And today I'm going to be brutally honest.

As parents to a child with special needs we fight. All the time. We fight for access to services. We fight to be heard. In Sophie's first year I was accused of being "paranoid and delusional" by one pediatrician, an "over-concerned" mother by at least three other doctors, and other unmentionable things by more doctors than I can remember. All because I thought my daughter had a genetic condition, and they thought I was imagining it. They were wrong, I was right. They shamed me and made me question myself, because they would not look outside the square.

A doctor at the sleep clinic at our local children's hospital refused to listen to my opinion that Sophie's chronic waking and screaming were pain related. He said she was waking because I was depressed and we had poor bonding, and if I was just prepared to let her cry it out then she would sleep. Would you let a child in pain cry it out? I wouldn't. We healed her pain (through the GAPs diet) and she started to sleep through the night.  If we had listened to that doctor's advice, she would still be living in pain.

Special needs parents fill in paperwork. All the time. We can't just enroll our kids at daycare or school or ballet classes or soccer and be done with it. We have to have special meetings, and write up information on our children's challenges, educate the teachers and carers in how to help our kids. Check in to make sure that our instructions are being followed. A teacher at Sophie's special needs kindly fed Sophie gluten (which she can't tolerate, and the teacher knew) and she had the hide to tell us she "figured it wouldn't kill her". Sure, it didn't, but was the teacher the one who had to get up in the middle of the night when Sophie was screaming in pain afterwards? I think not.

We have to hold our children down while they scream as they have blood drawn. Cradle them in our arms as they are anesthetized. Cook special meals for them because their systems can't tolerate a "normal" western diet. Console them when they tell us they asked all the kids in their class if anybody wanted to come to their place to play, and they all said no. Console them when, at just four years old old, a child in their class spat on them. We have to trek around and sort the wheat from the chaff when it comes to medical professionals and therapists. We question ourselves ALL the time...are we doing enough? Are we doing too much?

We have to teach our kids basic skills that come naturally to "normal" kids. We have to watch on while they are rejected by their peers. We have to face the shame of seeing that our own kids are so much braver, more positive and more courageous than we are.

We love our children without doubt...deeply, endlessly, honestly. And at the same time we sometimes hate the things we have to do every day. We hate the endless list of doctors and therapists. We hate the fear of wondering when the next thing in the list of issues associated with our child's diagnosis is going to raise its head...for us, with Kabuki... epilepsy, kidney failure, chronic immune deficiency, hearing loss, joint replacements and more. When our daughter complains of sore legs and asks to be carried, we have to wonder whether we are indulging her, or whether she is having legitimate joint pain associated with her disorder. We have to face the stares of parents who watch us carry our child into the water while she is screaming...because they think we should wait until she is ready, and we know she will only ever be "ready" by being pushed past that barrier of fear. We berate ourselves for looking too far into the future, and question whether we have looked far enough into the future to provide the assistance they may need to help avoid some issues.

As grown adults, who have been used to being financially independent for years, many of us (yep that's us) have had to accept financial help from our parents. Which we are so utterly extremely grateful for, but that makes us feel small and beholden and inadequate. We won't deny Sophie the therapy that our parents have helped us to afford, but we feel guilt that we can't do it all ourselves.

Generally we minimize it all. Almost all of the time. We write and talk about the positives, the pride, the joy. Because the average person doesn't want to know, they want to tell us to be positive. And because we are SCARED that we will lose friendships if people know that these deep and dark thoughts are within us. And yes, positivity is needed, and a great thing to strive for. And positive reinforcement is invaluable. But sometimes we just want to be heard. We want to cry for our children's difficult life path. We want to be held in our pain, and allowed to process it, rather than being told to deny it.

I love my daughter. More than words can say. I hate my weakness. And here, today, I am choosing to share it. Not for pity, not to be judged. Just in the hope that other special needs parents might not feel so alone.  And perhaps that parents without children with special needs may read this, and get some insight into our lives. Special needs parents can't hold it in all the time. We are human. We are not "special people", chosen because we have "special gifts to offer". We may perhaps end up being "special", because we have to travel this path. But it is not one I would wish on anyone. Parenting is a challenge for anyone. And sometimes, as special needs parents, we need to grieve and moan and cry. Not all the time, that's not what I'm saying.  But if we are heard, and understood...it is THEN that we can accept the well-meaning advice to "get on with it" and "see the beauty" and fully move into the role we have been called to fill.



Check out Kathy's blog if you would like to follow her journey with daughter Sophie.

All About Our Trick-or-Treat Program

As a mother of a child with complex medical needs I hear the same question ALL the time “Is there anything I can do to help?” or some variation of that question. Early on I would just say no, but thank you for asking. Over the years I have learned that most people that asks really do care and want to help. When there is something they CAN do, it not only helps me, but it typically makes them feel pretty good as well.

While my daughter has a lot of medical issues, she is still just a kid and loves to do many of the same things other girls her age do. This includes dressing up and holiday traditions. Halloween is a family favorite at our house. Since my daughter is fed through a feeding tube and is not able to eat by mouth at all, trick-or-treating just seemed mean. I felt like it would be almost cruel to drag her house to house to then take all of her treasures away at the end of the night. Not to mention, then my husband and I are left with more candy that we end up eating.

One year we took some stickers and little Halloween themed toys to a few neighbors' homes and asked them if they would mind keeping those aside so that our daughter could trick-or-treat at their houses. Our neighbors were so excited and loved being able to help us bring Halloween to our daughter. When we took her to these houses not only did they have the little treats we brought over, but they went out and got other stuff to add to her goodies as well. Everyone won that night- especially our daughter.

That Halloween got me thinking. My daughter is one of thousands, or tens of thousands, that can not eat Halloween candy. My neighbors were thrilled to be able to contribute to Halloween fun for our daughter. I figured there has to be more people out there that want to do the same. Many people already do, and had no idea that by handing out stickers, pencils, spider rings, etc in addition to or in place of candy that they have made their Halloween goodies inclusive. It really is that easy.

MOST people want to help. When people hear our daughter’s story they always tell me about how their cousin, best friend, little sister, etc has a child with special needs. All of us have special kids in our lives that we love and want to help bring them joy. This concept lead to us creating the Trick-or-Treat Program. This program gives EVERYONE a chance to make a difference.

We have developed a few tools to help make this program a success.

It's as easy as 1-2-3

	1- Add some non-food treats
	2- Print out a decal
	3- Share Halloween fun with ALL kids

We have an online registration system as well. You can register your address (we don’t ask for any personal information- not even your name) to let kids in your area know that non-food treats are available at your home. There is a simple map that will help individuals plan out their trick-or-treating routes.

This program is so simple, and impacts so many. EVERYONE can participate. You do not need to have a child with special needs, you do not need to have a child at all. If you plan to be home on Halloween and hand out treats, just add some non-food options. This is NOT and anti-candy campaign! I LOVE candy and for many kids its still a great option. I must tell you though, the past few years I have offered both. When kids knock on the door I let them chose. The non-food treats go much quicker than the candy. The older kids want the candy, but the younger kids love the non-food options.

Please help us make this program a success. The more people that know about it, the more people that will participate. We are just stay at homes and rely on word of mouth to help us deliver these details. We need YOUR help! Tell your friends, tell you family, co-workers, neighbors, tell everyone! You can post a link to our page, tweet it, pin it, instagram it, or any of the other cool things kids are doing today.