What About Words?

I am the mom of 3 "special needs" adopted daughters, so I have spent much of life learning a different language. The words:tone, Rocker bottom foot, short term auditory memory delay, mentally challenged, fetal alcohol syndrome, autism and, the list goes on and on. As I joined or formed support groups or became a part of councils and boards, I learned other different words: SMA, cystic fibrosis, feeding tube, nebulizer, oxygen, rhizotomy, It is like we, special need parents used a different language. You know what though, we also have the same language: happy, laugh, love, pride, and cry, tears, sadness, it is all there. I think that we should not focus so much on what makes our kids different because, we lose what is the same; what conforms us to every other parent and family in the world instead of what separates us and excludes our kids.

We say that our kids are not included, yet sometimes, we keep them excluded by the differences we seem to stress. Recently, I saw one of the kids I have come to know on Facebook at a birthday party. Yes, she was different yet, she was also very much the same. Instead of stressing her differences, she was just being a little girl, playing Barbies the best way she could, helping the birthday girl open up presents...okay, I know, there are many of our kids who can't even do that but, just their mere presence adds meaning to those who's lives they touch.

The reason for this post is pretty simple, my girls were 8, 2 and 8 months when they came into our lives, they are now 34, 29 and 26 so I have had many years to see that they excel (as do the people around them) in an environment where those words that stress the differences are kept at a minimum. In this instance, the more they are different the less they are the same. My hope is that all of our kids grow up to be unique and that their communities accept them much in the same way as they would the tall, short, redhead, blonde, etc. and we are able to join together to help each other be all that we can be! Wishing you all an awesome year ahead!!

[caption id="attachment_7123" align="aligncenter" width="350"]My Daughters, Laura-Lee in White Dress and Nikki in Black. ~2004[/caption]

The Emotional Side of Receiving a Diagnosis

No matter when you find out, hearing that your child has a medical problem is never easy. Some of us find out while the child is safe and snug in the womb, some of us find out shortly after birth, and some of us don't hear those words until our children are older. It doesn't matter when it happens, you feel a plethora of emotions ranging from guilt and sadness to a "we can beat this" attitude. Then there's the matter of the diagnosis. For some, such as those with a recognizable disorder, you get your answers pretty quickly. For others, such as those with rare disorders, the process of getting a diagnosis can take years.

Personally, it took two and a half years for us to get a diagnosis for Jaxson. I know that some of you have waited longer and some are still waiting for science to catch up with your child. In Jaxson's case, Kabuki Syndrome was found just over 30 years ago, so even though he has the diagnosis, there is still much to learn about the disorder and the problems that is causes. Kabuki is not the only disorder out there that there is little information on, so I'm sure there are others that fall in line with it. Over the last two and a half years, we handled what we could and prayed about the rest. When the call came with the diagnosis, I actually saw a spike in my anxiety and couldn't figure out why. Then it dawned on me. When you put a name to something, it becomes real. I could no longer pretend that it didn't exist. And that has had me reflecting on the last years and how unprepared I was for these emotions.

I am not your typical woman when it comes to emotions. Most of the time, I have no idea what I'm feeling, so trying to process everything that comes with having a special needs child has been a huge hurdle for me. I know I am not alone in this, and I am still on my journey of discovery and understanding. However, something changes in you when you have a child with special needs. For the last two and a half years, I have gone through the motions. I've taken Jaxson to therapy and specialist appointments, I've stayed with him in the hospital on more occasions than I can count for surgeries and illnesses, I've helped expand his skull, I've done everything that the doctors said we should do. I had no choice because we could only address the problem at hand and didn't have a big picture to look at. But in that sense, I also only had to deal with the day-to-day. I may have wanted to know what the future held, but I didn't and therefore it did not exist for me.



So I wanted to share a few of the things I felt that I was unprepared for, that way maybe those of you who have not received a diagnosis can be a little better prepared than I was.

The first thing I felt was relief. Relief that this part of our journey was over, that we finally had an answer. I felt relieved that I finally had a place to turn with questions, I could finally connect with people who knew exactly what I was going through. I was free to join groups on Facebook where I could find support for everything versus just one issue. I was relieved I could finally do research on Jaxson's issues and maybe find some answers. That was a huge weight lifted!

Then I felt overwhelmed and anxious. Overwhelmed because I could no longer just go through the motions. I had to research this diagnosis, find out everything I could and learn as much as I could as fast as I could. I'm still in that process, although my brain has calmed down. I was anxious to find out if there were other families in my area with this disorder, anxious to see how Jaxson compared to other kids with Kabuki Syndrome.

There was never a sadness when I learned the diagnosis. I know that some people will experience sadness and devastation with a diagnosis because of the implications on their child's life. Thankfully, Kabuki has a normal life expectancy, and that puts us back to feeling relieved.

The next two things I felt were readiness and frustration. It seems weird to put those two together, but that's how they came. After sorting through being overwhelmed and anxious, I was ready. Ready to tackle this syndrome head on, learn everything I could. And that's when the frustration came. Kabuki was only discovered in 1981, which is not a long time ago in the medical world. So finding information on Kabuki beyond what's on the NIH and NORD websites was not easy. There is one main foundation and about five websites housed in different countries for KS. There is still much to be learned by doctors on this disorder, so those of us who deal with it get to be guinea pigs for the time being. There are plenty of disorders that have been discovered even more recently than that, so frustration can play a huge role in learning a diagnosis.

But here's the thing to remember above all else: Generally speaking, the course of action and plan for your child will likely not change much once a diagnosis is received. Putting a name to something gives doctors a better idea of what to expect with various things, but treatment plans like therapies and such are not going to change. For us, Jax is going to be tested for a few things and go to the sleep clinic, but that's just for informational purposes. Others of you will have similar experiences where a diagnosis is received and you need to check for autoimmune disorders, watch for seizures in case that's part of it, and make sure there are no additional clinical diagnoses that would change a treatment plan. I can assure you, there will be a few of you who have drastic changes come when you receive a diagnosis, but most of the time our doctors have a good idea of what needs to happen even if it doesn't have a name.

So prepare yourself for when the call comes or when the doctor decides to put a name to what is happening with your child. You may feel more emotions than I can put my finger on, but definitely know that you could feel the same things even in a different order. Putting all of this together can be very overwhelming, so don't be afraid to lean on your fellow MOMs. We get it! For those of you who have received a diagnosis, congratulations! It's a good feeling to have a direction. For those of you still waiting, keep doing what you're doing. There are rapid advancements in medical science and technology, and science will catch up with you. It's a rough road in of itself and I hope this helps you prepare for what you might feel when you do finally get the call.

***Note for MOM- Whether getting your initial diagnosis, having a child with medical needs that are not yet diagnosed, or adding a new complication to an existing long list, there are emotions that all of us go through. This is often referred to as Stages of Adaptation. As we cycle through the stages we will learn to move through the darker stages quicker, and more productively. It is a constant cycle though. For more on the Stages of Adaptation, please check out this great document. You can find this and many more helpful article on our Hope page.

How Hot Chocolate Gave me Hope

Our six year old daughter is; beautiful, kind, courageous, smart, witty, entertaining, mesmerizing, and among other things also happens to have autism.  Behind those bright and sparkling eyes is a mind that operates in a way that we struggle to understand.  Where some things come so easy to her, like double digit mathematics “with no fingers or paper,” she struggles to work the equations that would allow her to move through this life with ease, like understanding that dumping out every bathroom product we own will result in an undesired consequence every single time.

She tends to be very set in her ways which leads to outward struggles for her and internal struggles for me.  Everything from, how we do things to when we do things, has to be done the way that she learned it, or it simply isn’t right, period.  Besides that behavior being difficult to parentally mentor, it hurts me to see her in a constant battle to make peace with things that most of us could just do without giving much thought.  That is why a sweet little First Grade assignment called “How to Make Hot Chocolate,” gave me so much hope and nearly brought me to tears.

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                “Did you pour the water in? Did you pour the water in? I need three marshmallows, did you remember the marshmallows?” She rocked back and forth in her chair mirroring the increasing force of her repetitious inquiries, a mixture of excitement over the treat she was about to receive and anxiety over the fact I might miss a step.

“I am working on it, patience please.”

“Did you make the water hot, hot enough to melt the chocolate?  Not too hot though, I don’t want it to burn me.  Is the chocolate milk chocolate? I don’t like the dark chocolate.  What about the marshmallows, how many marshmallows?” She rocked further and further back, the legs of the chair smacking hard off the tile.

“The cocoa will be as close to perfect as possible, just be still please.”

“Is there going to be clumps on the top, or the bottom? Is it going to be warm enough to drink? Will I need milk to cool it off? Will the marshmallows melt on top? Mom? Mom? MOM!?”

As I walked carefully to the table holding her cup of cocoa I hoped that it was worth the moments of frustration for both of us.  As much as I enjoyed the idea that we were about to make a notable memory together, I knew that it would likely end with her being disappointed, and me feeling regretful that my time and efforts did not live up to her unattainable expectations.  She was used to Daddy making her cocoa, and once you pave the way for her, there is just no turning back.  You own that concept.

Predictably so her cocoa craving smile soon turned to an emotional outburst as she realized that I simply could not and did not replicate Daddy’s cocoa.  She wanted to like it, she wanted to not care that it was different, but she just couldn’t, she isn’t wired that way.  Not only was she angry that she would not be having cocoa after all, she was genuinely mad at herself when no one else wanted it and she knew it would be wasted along with my efforts.  I tried to pretend not to care, but it honestly did bother me, not because I took it personally, but because the more things she rejects as having multiple options, the less opportunities she is going to have in life.  Our world just does not operate like that, people don’t operate like that, and soon I won’t always be there to hold her hand in life and inch her through her fears of trying something new.

I leaned back in my chair trying to remember it was just cocoa, hoping she would eventually do the same.

 

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It was the end of Christmas break and I was cleaning out our daughter’s backpack.  Among a stack of “take homes” and holiday projects was a writing prompt labeled “How to Make Hot Chocolate.”  I pulled it out carefully and began to read:

“1. First you ‘por’ the Milk

2. Next you put in the chocolate

3. Then you put it in the ‘mickerwav’

4. Finally you mix it in.”

I just stared for several moments, in near disbelief that the sheet in front of me could be her work.  It was though, unmistakably, her handwriting and her doodles on the back.  What didn’t make sense was the fact that those were not the steps we followed to make hot chocolate.  Those were not the steps that our daughter would have written down, had someone asked me to wager a bet as to what she would have described.

“Chloe?” I called to her as she was putting her shoes on, getting ready for the bus.  When she was finished with strapping her last piece of Velcro she walked over to me.

“Yes, Mommy?”

I got down on one knee and showed her the paper.  She stared at me, her giant grey eyes reflecting her unknowing expectations.

“What is this?” I asked gently.

“Oh, that is my school paper.  We had to write how to make hot cocoa.” She smirked a little.  A wave of blonde curls springing into her eyes.  I wiped them away and looked back at the paper.

“But,” I hesitated, trying to choose my words carefully, “this isn’t how we make it.”

“Oh, I know,” she said with a bounce in her voice.  “This is how Miss Emily makes it.  I drink it at her house this way.  The package says you can use water or milk and heat it on the stove or in the microwave.  She uses milk and the microwave.  It is good that way too, it tastes like warm chocolate milk.”

A flood of emotions instantly came over me, though I tried not to make it obvious.  As she walked away I looked back at the paper that now sat on my kitchen counter.  The assignment that had an original intention to reflect the class’s knowledge of a simple process had reflected so much more in our girl.  It reassured me that even though it might not come as easily or naturally to her, she did have the ability to grow and accept changes, that different wouldn’t always equal bad or scary, and that even though it will still be a long and challenging road, it will be one with many rewards along the way.

Here's to all the MOMs....

The New Year has arrived and we are well into our way of finding out how our 2015 year will be.  At the end of every year I always look back and think what it consisted of....how many doctor appointments, therapies, hospital stays, surgeries, etc.  I am sometimes saddened that my child had a rough one, but then I smile because we made it another year.  I see all my other Facebook MOM (mommies of miracles) friends and think about how their year was and how they made it out....

These MOMs aren't like my typical Facebook friends.  These ladies have become a part of my family, albeit 95% of them I've never met in person.  Our children brought us together.  Our bond is strong because we live a life that no one else can possibly understand.  We fondly look at each other's pictures or statuses and give an encouraging word, praise their children's hard earned milestones, tell our experiences, or cry with them over some of the hardships of our children's lives.  This aspect of our lives is why Facebook has become so important, it is where our best friends are that we can't see in person.  Some MOMs have just been inducted into the club with their newly diagnosed child while others have been a MOM for many years....each MOM comes with her own experience and knowledge.  Knowing I have these women in my life, through the screen, helps me put one foot in front of the other to care for my miracle child the absolute best way I can.  So here's to you, my amazing mommy of miracle friends...

Here's to the MOM...who was just told that her sweet child has a rare disorder and will need constant care.  Her life is forever changed and she is needing support.

Here's to the MOM....who has a toddler who is developmentally delayed and hasn't reached milestones that most toddlers have.  Her hopes and dreams for her child remain in tact as she brings her child to therapies and is tirelessly working with him.

Here's to the MOM....who pushes that beautiful child in the bright blue wheelchair in and out of stores, hospitals, doctor offices, schools, parks, birthday parties, theaters.  She proudly shows her child the world and more importantly shows the world her child.

Here's to the MOM....who has a child with an invisible disorder and gets stares from strangers that judge her parenting skills.  She knows her child like the back of her hand and hopes that with enough exposure and compassion the public can see her child for the way he or she is.

Here's to the MOM....who was told that their child was born blind and would never see.  She never gives up hope that possibly the doctors were wrong.  Her life is a journey of glasses, canes, Braille, sensory integration, and overcoming stigmas.

Here's to the MOM....whose beautiful child has a disorder that will take their life.  The thought of losing her child is never far from her mind, yet she holds onto hope.  Her life is a constant state of when and holding onto her miracle for as long as she can.

Here's to the MOM....who is seen arguing with her miracle child's doctor about what her child needs.  She isn't afraid of a degree in medicine.  She only has one purpose in this life and that is getting her child the best medical care possible.

Here's to the MOM....who is learning to live this lifestyle after her healthy child was in an accident that has changed them forever.  Her heart breaks into a million pieces, but remains strong for her child.

Here's to the MOM....whose child has grown into an adult.  She knows all the ins and outs of this life dealing with special needs.  She is an valuable part of our community of MOMs and is so respected and looked up to.

Here's to the MOM....who lives in the hospital more than they do at home.  She has become great friends with the nurses, therapists, residents, custodians that work at the hospital.  She is an expert of hospital life and can pack a go back in 30 seconds flat.

Here's to the MOM....whose child with special needs has left this Earth and is now an angel.  Her arms physically ache to hold her child and to see their beautiful, sparkling eyes again.  She will forever be in our community because this was her way of  life too, and just because her child isn't with us anymore, SHE still is.  Her presence reminds us to hug our children tighter, cherish our days together, and to send her our love when she needs us.

2015 will most definitely have its ups and downs, as every year does, but this year as we endure our daily struggles and triumphs let us remember all the other MOMs out there.  Reach out to your fellow MOMs for advice and friendship and encouragement.  We are all in this together....rejoicing on a successful therapy session, being mentally and physically exhausted from an extra long hospital stay, or quietly savoring a special moment before bed holding your child where no words are needed to know and feel his or her sweet, pure love.