Special Needs Mom

Dear Summer Camp " Buddy",

I couldn't help but write you this letter, and I hope that's okay. I have so much to thank you for, first for being Zoe's ' buddy" at summer camp.There is more I want to share with you too. My hope is that you will tuck this letter away and read it again at different times in your life.

I hope it will help you make sense of your world, maybe inspire or comfort you when words like these are what your heart needs.

Sweet Summer Days

I am so happy to be home with my girls this summer, still working.. still writing, and as always stymied as to how to be more exciting than their Ipads! To keep us busy, and creative- savoring the simple things of summer I am writing about some of our fun times, weekly at this gorgeous, cool website Moonfrye.com.  

Remember the funny, and fabulous Punky Brewster from the 80's? Well, she is still Soleil Moonfrye- still fun, creative as ever, and inspiring and motivating parents to celebrate family time.

I am happy to be there, having some fun! You can find me here. Hope you have a chance to drop by.  

6 Secrets of Strong Special Needs Dads

Happy Father's Day Bruce, you are the best Dad ever! Watching you love our girls, makes me love you even more... 

I recently wrote about the secrets special needs moms won't tell you, but heard from many special needs fathers that they felt left out. My husband, Zoe's Dad was my inspiration to write about what I know about special needs dads.

We are in the kitchen, my husband and I, cleaning up after dinner and talking about our day. I am telling him a sweet story about Zoe, a challenge she encountered. The story ends with success and as I happily share the outcome, I look to his face for the approval and excitement that I know he will offer, his endless encouragement something I rely on. Instead, I see he is still working through my words, that his face is still, caught in the moment when Zoe was vulnerable and unsure of her abilities, and in that few seconds, his face fills with pain and I see the heartache I know he lives with.

1. Special Needs Dads suffer silently with broken hearts. These dads are productive and they find their daily dose of happy, but that doesn't mean they don't carry heartbreak around.

What I Want For My Special Needs Child

Zoe just turned eleven! And after these eleven years of mothering her, I know better now, what I want for my daughter. 

Acceptance, Open your eyes. I want others to accept my child for who she is, to look close and see her goodness. At first glance you might miss her amazing sense of humor, the way she can make you laugh or the positive light she radiates, and really.. that is your loss. My child greets everyone she sees with “Hello” , and tells each person she meets, store clerks included, goodbye.She has taught me how meaningful this simple gesture is-because what she is really saying is.. “ I see you. “ Zoe knows that when people look at  her, they first often see her “ equipment”. She has accepted that kids stare (a lot) - but seeing the person behind the wheelchair is important. Acceptance starts with a simple and meaningful  “ hello”.

Summer Herbs: Patio To Plate

It's Summer, and I am thankful to be slowing down a bit, yet still trying to accomplish more. My husband and I have always been big fans of fresh herbs for flavor and healthy eating, years ago after Zoe was diagnosed with a significant vision problem I started researching sensory gardens. Ever since, I have nurtured a couple herb gardens at home. It is easy and a great sensory experience for the whole family. Savor the simple things this summer ! You can read more about it here.

Honeymoon Summer

“ I like helping you..” My daughter Zoe tells me. We are cruising through our neighborhood grocery store, as I weave through the aisles, with my shopping bag overflowing and hanging from the back of Zoe’s wheelchair. Zoe expertly balances a half gallon of milk, green bananas and a loaf of crusty bread on her lap as she goes on.. “ I need to learn this stuff,  how to be a Mom for when I grow up. I have been thinking about this....” Her words stop and start again, as she retrieves the word she was looking for and finishes the string of her sentence. She ends with most difficult question. “ Is it hard to be a Mom?” She is smiling, happy to imagine her future- self this way.

I can’t imagine Zoe being a Mom. She is 11, and without detailing her prognosis, and debating the opportunities for adults with intellectual and physical disabilities, there are basic truths I have come to accept; Zoe’s metabolic disorder is progressive, her generalized epilepsy diagnosis is complex, and looking into the future makes my heart hurt.

A Mother's Day Letter For A Special Needs Mom

This Mother's Day there will be thousands of Moms who don't receive handmade notes, or  home crafted, crayon colored cards. These moms mother for a smile or a tender touch, they mother because that is simply what you do as a Mom.  This letter is for the Special Needs Mom , whose child is unable to write or say the words this Mom may long to hear. 

Dear Mom,

Even without my words you always know what I need. 

When I am hurting or afraid, frustrated or weary, you gather me home into the safety of your arms. 

You know what makes me smile, and fills my face with light.

You make my happiness when you sing my favorite song,  and sweep the softness of my favorite blanket, across the curve of my cheek.

Through Tragedy and Terror, Written Words Touch A Million Lives

I held my first daughter tight against my breast as I watched the Twin Tower tragedy unfold on television. Tears dripping onto the soft red curls on her infant head, she slept soundly, as I held her tighter and tighter, believing this would keep her safe from the terror at hand. Innocently she slept, unaware of my growing grief,  only awakened by the fear in my voice , as I phoned my husband, describing minute by minute,  the unimaginable images.

It was the terror that every one talked about that week. The true stories of the heroes, took weeks, months and even years to be told. News events were still reported then, in the paper, on tv and online , at the time of 9-11,  social stories were not “ shared.” 

6 Secrets Special Needs Moms Know But WON"T Tell You

 

I am a special needs mom. And I have secrets. Things I don’t talk about and stuff that other mom’s don’t know,or may have forgotten along the way... 

• Special Needs Moms are lonely. I yearn for more time with friends and family. Authentically, I have a positive attitude and most often you see me smiling. I may even look like I have this SuperMom thing down, am super busy, and have enough help, but I am lonely. Being a Special Needs Mom doesn’t leave me the time to nurture and maintain the relationships I really need.I could get super detailed here about the hands-on caring for my child ( Do you remember when your kids were toddlers? That hovering thing you had to do? It’s that plus some.) The plus-some includes spreading my Mom love around to my other child and my husband, who on a daily basis are put on hold, waiting for my attention.I don’t have much time to call or email my friends and even family...and if they don’t call or email me, well then I feel massive guilt about the time that has passed. More negative stuff that I pile on my shoulders. Getting out is tough. I really miss the day’s when I had playgroups with other Mom’s, open-house style, dropping in and drinking coffee at a friends’  kitchen table with my child playing nearby.  

Special Needs Mom " Honey, There Is No Easter Bunny.."

 

In our home, traditions are all about family- and designed with creativity and flexibility. 

Like last Easter, when I decided that Zoe’s excitement over her soon to be arriving Easter basket coupled with her fear that the “ Easter Bunny would be in our house” wasn’t worth a sleepless, stress filled night. So the Easter “ baskets” arrived after dark, with a “ glowing”  Easter egg hunt beginning on the backyard patio. ( Yes, I bought into the Pinterest rage of glow-stick Easter eggs and you know what? It rocked) When you spend a lot of time at home, these family fun traditions are important.

And this year,  as Easter draws near,Zoe is excited again. This time hoping her Easter basket includes not the wholesome Beach Barbies the bunny brings each year, but instead a goulish pink haired Monster High doll in roller skates. I was grieving the loss of Beach Barbie, thinking about how Zoe is growing up, when suddenly it occurred to me that I had missed something I don’t usually miss. 

The Lesson I Learned Again, The Day I Cried In My Car

When my daughter Zoe was little, I looked to the doctors to forecast her future. After all , they had the clinical experience from thousands of patients , and I was the first-time parent of a special needs child. I  would cover Zoe’s baby face with kisses, all the while wondering, “ Will her words ever come?” Will she ever walk? The doctors were uncertain. 

As Zoe grew older, she missed  “ milestones” , yet amazed us with her tenacious achievements. We learned to embrace her uniqueness,and I found peace with the fact that as her Mother, I knew her the best. 

Adoption, Belonging and Finding Family

I am fiercely passionate about what happens in my home, and the family life we make. My mothering, my marriage- the relationship we have with our children , how they feel our love, and the connection we share. I am not aiming for perfection, and it has nothing to do with Zoe’s special needs and acceptance. It is all about belonging, I want my kids to know that family is a place where they belong. I am adopted. 

I am an adoptee, I have searched for and found my birthparents. I was lucky enough to unravel the truth behind the false birth certificate I grew up with. All of my original  records remain closed,( for now in the state of Ohio ) yet still I was able to first find my birthmother, who told me the story of my “ famous” father. I was able to reunite with my birthparents and find that part of “me”. I was even fortunate enough to co-present with my birthfather, the keynote address at The 30th Annual American Adoption Congress , Adoption Network National Convention.

Special Needs Siblings: Great Expectations

My girls are twenty months apart. " O" the big sister, is almost a teen- she wears wedge flip-flops, designs elaborate doodle drawings and can master most online games; All enviable accomplishments to her little sister, Zoe, who does her best to follow in her sister's  footsteps. Where " O" can run , Zoe uses her walker. When the girls do "" Just Dance 4" on the Wii, Zoe has some pretty mean moves that are meant to model the spins and bounces her sister effortlessly exerts. The girls share the same medical diagnosis, however in our house, O is the " typical " kid ,and my expectations for her are great, maybe maybe even sometimes..unrealistic. 

Olivia was about 8, when we started talking in detail about Zoe's diagnosis. It was then that I realized through O's little girl eyes, that she was expecting Zoe to get better. The medicines, the therapy appointments, even doctor's visits.. were all meant to make Zoe better, help her learn to walk and speak clearly. O was just waiting for it to happen, and waiting and waiting, until one day when she asked me if it ever would. And I told O what I knew to be our truth,. I watched her eyes fill with tears and waited for her words of grief, and instead heard her little girl voice ask" Does Zoe know, Mom?" She was protective of her little sister, trying to imagine if Zoe knew this, if Zoe, with her great  love for life and easy laugh, knew this to be her future or if there was more hurt to come.

Fitness For You.. Mom Review On Fitbit.. Weight Watchers, Map My Walk, Fitness Pal and More..

A few days ago I posted on " Taking Care of YOU" and how I finally found my fitness start after 10 plus years of waking through the night with Zoe, gaining a few pounds a year, and feeling pretty unhealthy. The response has been very cool! So here is the scoop for those of you who asked! 

Living the life of a special needs mom, organized classes, gym visits, and bootcamps just won't work. I needed to focus on me, and pretty much do it on my own. I started researching first, and after talking to a friend I started with Weight Watchers online. It was an awesome introduction that helped me start losing weight right away. The online tools, recipes, apps ( bar code food label scanners, trackers and more!) were awesome, and the content on the website was plentiful. Inspiring, interesting and helpful tips and tricks to get started. 

Here is where I was coming from..I needed to slow down.

Now She Knows She's Different

When Zoe was little I spent a lot of time thinking  ( and writing) about about how different she was. Then she grew, and through her grade school years blossomed with the encouragement to try and do her best as I made sure she was always included, and treated just like everyone else.

Zoe will be starting sixth grade next year, and growing into who she is meant to be. She is quick to laugh and smile, full of pre-teen sass.

I have always maintained my own set of rules for Mothering Zoe. Many of them involve not making a big deal about her disabilities, within our family .. even in small ways.

A Personal Confession: Taking Care of You, Getting Fit.. and Taking Care of Family.

I never imagined Zoe as the 'tween she has become. She talks alot now about growing up , and asks those difficult questions that make me feel old and sometimes sad. The last ten years have flown by, but when I look in the mirror I can see every moment. The way my life evolved from a master plan to just getting through each day.. learning to shift my life from " black and white" to an okay shade of gray. The way there is little time for anything besides family, home and work.

Things have been kinda calm lately, and after a whirlwind of working non-stop for the last year,parenting my girls ,ten plus years of not sleeping through the night, and long talks with my husband with his repeated reminders to " slow down" ,  I kinda had a revelation. Something has to give.

What Frustrates You Most About Your Special Needs Child?

 Well, technically the question in the packet of papers read “ What frustrates you most about your child?” The questions were typically brief and non-descript and this was the only question that made me pause, put down my pen and sigh. There was less than one line to complete my answer, not anywhere near enough enough space to tell my daughter’s story. 

  It was laughable really, that someone would ask such an open ended question that sounded so insensitive, at least to a Mom like me. The packet was specifically written for parents of kids with special needs, the question and answer process designed to know my child better.. but frustrates? Typically, when my kid misbehaves there is a  “wiring” issue involved in the behavior.. processing, impulsivity, fatigue etc. There is nothing about my daughter Zoe that “ frustrates”  me, as  in.. “ gets on my nerves, drives me crazy, or really *#**#$* with my day.,..yet really... now that you ask.. almost EVERYTHING about Zoe FRUSTRATES me.

Mitochondrial Disease Awareness Week is Over, and What Our Future Holds..

Zoe is ten now, TEN. Once upon a time , we weren’t even sure she would live this long. That’s what it’s like when you have a young sick child, diagnosed with mitochondrial disease.

I have been reading about mitochondrial disease all week, and thinking about how rarely we speak of it now. How we had to move on with our life and had to start living it. How time can change things.

Our questions about Zoe’s future were impossible to answer, and the only clinical estimate Zoe’s Doctor offered was “ The earlier the onset of the disease, and the more organ systems involved, the more severe the progression.” Zoe was almost 3, and we knew mitochondrial disease was affecting her brain, her muscles, her eyes and kidneys." This wasn't hopeful news. 

 Although Zoe’s diagnosis was not as severe as some, like this family’s story just published by CNN, the plan was the same- take your medicine, and take care- do whatever you can to avoid illness and fatigue and we’ll see what the future brings. 

It has been a long ten years- and by looking at this picture, you wouldn’t know that. You can’t see the power wheelchair Zoe needs to move through large areas like school , or her push chair that we used on the day this picture was taken. You can’t see the walker she needs to stand unassisted or move through our home. You can’t see how her every moment, each step, each activity in her life has been adapted for her success and independence.

Zoe's Summer of Independence

It’s seems like only yesterday I was sitting in a small room, with a desk between Zoe’s Doctor and I - as I ask him question after question- all of them starting with “ Will she ever..?  And in that moment, instead of feeling tragically overwhelmed- I was empowered. 

Finally, I was getting confirmation on something my mother’s instinct had always known. I was getting answers.  

Seven years have passed since then, and for the first time, in a long time- I find myself starting over asking questions again, researching and  learning new methods for tackling daily life and Zoe’s physical and medical challenges. Zoe is 10 now , and continues to give her all to everything she does. She approaches becoming a “ tween “ no differently,  reaching for more freedom, becoming frustrated at times that she can’t enjoy certain privileges her “ almost teen” sister earns.