On the day that our daughter was born, we were new to the fact that she was blessed with Down Syndrome.  This was a new world for us because neither myself or her father knew anything about it.  Over the next few days, we did minor research, trying to prepare ourselves for what could lie ahead.  As her mom, the one thing that stuck with me wasn’t “how are we going to do this“, but rather “how is the world going to treat her?”

Since she wasn’t my first born, my son is nearly twenty months older than her, we had additional people to take into consideration in this new chapter.  He was so excited to have this cute little girl added to our home, yet we knew that there was so much that needed understanding.  Being that he was quite young, we took baby steps in explaining his baby sister’s differences to him.

Fast forward to last year.  Both kids are in school and doing remarkably well.  They have blossomed, grown, and are learning to experience life outside of mom’s grasp.  Its scary, yet they are loving it.  Throughout the past few years, we gingerly spoke to him about his sister’s diagnosis.  The conversations were always small, to the point, and sugar coated.  He understood as well as a small child could, but he knew she was a bit different.  We spoke to him about caring for her because we were unsure of how well she could care for herself in social situations, things like that.  Their school was insanely accommodating by placing them close together, in different classrooms.  They had contact throughout the day, allowing her to become comfortable without her security blanket, aka her brother.

She trusts him.  She relies on him.  She looks to him for guidance in so many aspects.  He knows this, he can feel it.. and let me say, I am so proud of the protector he’s become.  He plays with her at recess, checks on her through their school day when mom can’t be there, makes sure she’s safe.. the list goes on.  He’s the best!

As much dread as I’ve felt about this day, we’ve recently been faced with it.  Someone, another child, causing her physical harm because she doesn’t stand her ground.  When we realized what had been happening, I can honestly say, I’ve been torn apart ever since.  To know that someone will take advantage of a person just because they are different is exactly what I’ve feared since the day she was born.  My first reaction was to remove her from the situation, get her home safely as quick as possible, and place a bubble around our family.  I was infuriated, sad, and washed with a new realm of emotions.

Through her years, I’ve had fears, yet never truly encountered something like this.  But.. when this happened, our son was the person to stick up for her and tell his dad.  He told his dad that someone had done something unkind to her.  So much gratitude goes to this boy for protecting his little sister when his parents were not there.  (I’m not going to get into details because they are irrelevant at this point).  He stepped up and made sure that we were aware of what had happened to her.

It saddens me to think of placing such a huge responsibility on a child to protect another child, yet making him aware of the potential dangers, unkind people, in this world, is a necessary precaution.  I never want to be the parent who drives her child to grow up too quickly for my own good.  I pray that it comes across to him as being a caring, loving part of a family.. and that’s a job for all of us.

He’s just a boy.  The sweetest, soft-hearted, most loving, ornery little boy I could ever be blessed with.  He may be young, but he’s a giant.. nearly as tall as me!  (trust me, that isn’t saying much, I’m bordering the size of a “pocket pal”!)

In our role as a family with a special needs child, we’ve also been given the task of creating boundaries more significant than we previously imagined.  And that’s okay!  We understand that we will encounter people who aren’t prepared, or know how, to “handle” our dynamic.  And that’s okay!  We are aware of the possibility of losing people from our lives because the lessons taught in other families/households aren’t up to our standards.  And that’s okay!  These are all things we’ve considered, but have made peace with because the most important part of our journey is keeping our children safe, happy and most of all knowing they are loved.  The rest is an after thought that is taken for granted most of the time anyhow.

My son is a rock.  He has a playful heart, a backbone stronger than some adults, and a demeanor of an old soul.  He may be ornery, like all kids, but his heart is kind because he was created in light.  God made him this way for a reason.. because only He knew that a short time later, he’d be given a sister who is slightly different from him.  A sister that looks to him for guidance, understanding, protection, and a playmate for years to come.

After all, he’s just a boy needing the same love, respect, and understanding as everyone else.

xoxo

I have days when I feel that no one understands how I feel. When I feel that no words can accurately express what’s going on inside my heart and mind. Sadly, this happens more often that I’d like to admit.

Yes, my daughter has Down Syndrome, and yes, she is a handful more often than not. But what you don’t see is how your inconsiderate mentions of my seemingly inadequate parenting is taking its toll on me. I won’t say it, but you’re making it worse. You’re making me feel like my parenting is unmatched to yours. What you fail to understand is that my child will never be like yours.. and you will never grasp that.

On the occasion that I would discuss my frustrations of whatever is happening with her at the time, I do so because I trust you. Not because I need a response. I just need a listening ear. When I say that you’ll never understand our life, I don’t say those words to be condescending.. I mean that sincerely because sometimes I don’t understand either.

I hear when you say you love her, she’s so sweet and cute, and how awesome she’s doing. What you don’t know is the glares I catch, the disgust I see on faces, and the comments said that I’m not supposed to hear. All of which are soul crushing.

It may not seem like it to you, but I’m doing my best. I’m putting in every ounce of effort, every ounce of selflessness I have, and every sleepless night to make sure she’s okay. And some days I just want to break.

I have days that I lock the bathroom door so I can have a few minutes alone to weep and not have to explain why I’m hurting. Sometimes I lay in bed before the sun rises and thank God for allowing me to be her mother, before she begins to stir. There are days that she makes me feel crazy and all it takes is her tiny face to look at me and say “I wove you Mommy” to take all of the anxiety away.

But please don’t judge me. I’m doing the best I can. I get it.. sometimes I look (and feel) beyond frazzled.. as if I really can’t handle my life. Just know that I can. Until you’ve spent a day living my life, feeling my emotions, and steering through my doubts, I don’t need your burden as well.

You’re dear to me and my child, but we’ve got all the negativity our hearts can handle. And this mama can’t absorb any more.

So, please. I kindly ask for your patience with her. She isn’t yours and you’ll never understand. There are many times when I don’t either, yet I trust that there is a reason for all of it and I just have to be her person to guide her, help her, heal her, and make her feel safe.

After all, she is and always will be my baby girl. 🖤

When the days seem to run together with no variation of events, I long for bed time. Not because it will be different tomorrow, but because I need a break.

I do these things without hesitation. My children depend on me for all of their needs. Whether it be driving to events, making their meals or just holding them tight, I am their comfort.

On the days where it doesn’t seem that the sun will shine, I remind myself that these babies are mine. I created them, I will take care of them above anyone else, and no matter what I’ll always be there for them.. exhausted or not.

There are days in which I feel I’m about to break. Days that I can’t even express in words how I feel. All the while, trying my best to make them feel incredibly loved.

I go to bed at night, two small beings beside me. No matter the tantrums, the tears, the talk back, I lay there beside them adoring every second of their existence.

Each day I attempt a smile and a cheerful demeanor because that’s what they deserve. It’s not their job to pick up my pieces. It’s not their responsibility to carry my burden. It’s mine to lessen theirs.

My kids will never know the sacrifices I’ve made for them. They will never know the tears shed on their behalf.

I want them to know of the love that overflowed between us. To remember the days of laughter, excitement, dance parties, and pure silliness.

One day I’ll miss this. One day they’ll no longer want held. One day they won’t need me. And when that day comes, I’ll come back to this.. that no matter what happens in life, I am and always be your biggest fan.

Every exhausted parent should remember that you’re not alone.. and that one day when they’re all grown up, we have the precious memories to come home to.

The days are long, exhausting at times.  The nights are moments stitched together in love and peace.  I hold you close.  Your tiny hands in mine.  I hope to never take for granted the days you asked to be held, needing to know that I care.

I’ll always be here for you, my love.

People will let you down.. disappoint you and make you cry, yet know that my arms will always be open to hold you.. to take away your pain.

The moment I realized I was fully alive was when I looked into your eyes for the first time.  Your perfect arrival will forever be embedded into my soul.  From that point on, I knew my role was bigger than I could ever imagine.

I will be your guardian, your soldier, your cradle, your storybook, your first love.

I’ll always be here for you, my love.  No matter the years past, no matter the circumstance.. I’ll always be here to pick you up, hold you tight and remind you that you are loved beyond measure.

Who doesn’t hold this title in today’s society? I believe that the percentage of “traditional” parenting (as was when we were children or long before), has drastically changed to be perceived as, what, new age? Sure, the basic ideals of parenting are still in-tact, yet what each of us decide is acceptable varies drastically from one parent to the next.

I bring to you: vaccinations. I don’t bring this up to start a debate or ensue demeaning remarks, but to shed light on beliefs and understanding.  I am that mom; the one who doesn’t believe that injecting live viruses, harmful chemicals and carcinogens into my children’s tiny bodies is a good idea.  But, that’s just me.

There is a news coverage frenzy happening regarding the measles “outbreak”.  Allow me to start by saying this:  my heart goes out to anyone suffering from any illness, children and families.  But, if we take a hard look at the statistics regarding vaccination deaths and deaths related to the measles.. that’s where I begin to wonder just where the hype should be targeted, as compared to the news that is being bombarded to us daily.

There are different reasons for each parent to make the choices that they make, some scientific, some religious, and some personal choice.  I like to think of myself as a little of all.  I find the truth behind the science fascinating (not in a whimsical way, but educational) and enlightening, but the science I believe is the science that isn’t mainstream, isn’t popular.  I follow my instinct.  I follow what makes sense to me and my children.  I also find that the religious reasons for not vaccinating children to be equally interesting.  Just as personal choice.  Everyone has a stance; an opinion of what’s right or wrong.  I can not for one second condemn someone who does vaccinate, as I would hope that the same consideration is taken for those that choose otherwise.

When I was pregnant with my first-born, I made a very important decision to do absolutely everything as natural as possible.  I took care of my body  and growing baby holistically.  I took nothing lightly.. I researched absolutely everything.  If you’re a parent, you know how it is.. first-born.. you do everything with dedication, unease, and determination to make as few mistakes as possible.  When having the “talk” with my husband about my choice to skip vaccinations, among a few other things with our new baby, it took a lot for him to see where I was coming from.  I had to provide as much research as possible, confirming both sides of the discussion, to get him on-board with my plan.  After a bit of time to ponder the new information, he saw my point of view and then it was time to tell the new grandparents.  Lets just say that some were more accepting than others, but nonetheless, babies were born healthy and continue to be so many years later.

It all comes down to this (for me!)..  if you feel strongly in your gut that vaccinating or not is the best choice for your children, then do what you know is best.  I chose not to and I have two extremely healthy kids.  That’s not to say that they don’t get sick occasionally, yet in their years on this Earth their intake of antibiotics or other prescribed medication has been sparse.  Don’t get me wrong.. some people need assistance when it comes to medication and I am not knocking that!  I’m merely stating the position of myself and my children.

To go along with my previously stated choice, I believe that a healthy diet is insanely important in warding off illness.  The amount of processed foods consumed in the United States is astounding.. and not in a good way!  This country is one of the most unhealthy countries alive!  EEK.  What happened?  Why did making processed foods become the thing to do, instead of feeding your growing children fresh food?  So many diagnoses can be controlled with a lifestyle change and I firmly believe that if that took a stronger pitch on a radar (that was likely less profitable than these multi-billion dollar pharmaceutical companies), our bodies and those of our growing generations behind us would benefit greatly.  Isn’t that why you see the questions from your children’s pediatrician asking how many fruits/vegetables they consume daily?  Or what do the children drink?  Or how much physical activity do they partake in each day?  It all adds up.  These are all keys to living a healthy lifestyle and teaching our youth to be productive in making those choices.

To answer your question, yes.  Vaccinations and diet are related, in my opinion.  I do not claim to be an expert in either field, yet I do my research and make the best decision for my children in hopes to show them that the choices they make have a lasting effect.

To date our family has not been discriminated on based on these choices, yet I am saddened to hear of those that are.  In 2019, advancements in health and wellness have been made less important and overrun by profitable markets.  Our children are sick.  And to make things so much worse, there are kids without clean drinking water or food.  There are kids starving on our streets.  There are families torn apart for countless reasons.  Our world has changed.  Priorities have changed.  Well-being has taken a backseat to greed.  Nurturing one another is no longer of importance.

Maybe we all need understanding.  Love.  And as much compassion and empathy as you can muster.  Our kids need us..  vaccinated or not.. to make the best, most informed decisions for them.

Whatever your stance, I applaud you.

I’ve been hesitant to write this because once its written, sometimes it feels more real.   There is no denying the fact that our babies grow up.  All we can hope is that they grow into the amazing human beings that we know they can be.   When we begin creating families people from all corners of our world will tell us ‘don’t blink.. they grow up too fast’, yet no matter how many times we hear words such as this, we continue to roll with our lives.  If you’re like me, you somewhat take those words for granted.  Obviously, our kids are going to grow up and living every single day in the stresses and glories of parenthood, we oversee them much of the time.

Recently, my youngest woke up one morning and much to my surprise became a tiny adult.  Her spunky demeanor, sometimes foul-mouth (which we will attribute to her pirate heritage! HA!) and subtle girlishness has blossomed into a full-blown GIRL.  Now, don’t get me wrong, I love it, but I am unsure how to proceed with such flash, sass and flare.  In a matter of days, she was requesting ear-piercing, a manicure, fluffy dresses and more!  I mean, really!  Ingrid has always been a girl, but even for her this is a new extreme.  Enjoying her play kitchen, baking sets, princess costumes and dolls, that is nothing new.  But make-up?!  C’mon!  Let me just add that my baby is still in the single digits of age!

Her birthday came so I obliged her requests.  Her ears were pierced, nails painted, fluffy dresses obtained and shopping to top off all needs.  Based on her smile that went on for miles, I’d say she was pleased, yet this mama is left to wonder what will come of the next several years.  If you know me, I’m not the mom that dresses my kids like little adults.  They play outside, not on electronic devices.  They have human friends, not strangers they’ve encountered online.  They are taught manners, to appreciate the wonders of a book, instead of a television show.  They have been taught “old school” values, not to be unappreciative or entitled, and that hard work creates positive results.  All of this to say, that I’ve been holding strong to keeping my kids as young as their age number allows.  Then to wake up to my baby girl wanting to be a big girl..  tears, I tell ya!

I like to think that sometimes I can influence her strong personality to be tamed, but as of recently, I’m learning that she is only doing what is inevitable.  She is growing up to be a beautiful soul inside and out.  Her sweet tendencies shine brilliantly through her devilish glares (most times!); her tender heart allows you to see how gentle she can be.  And to know that all of what makes her a baby is slowly coming to an end.  As much as acceptance is all I really have, its disheartening.  Time is playing a torturous game with my heart-strings.  I’d like to encapsulate all of the moments that make them who they are without the growing of age.  To keep my babies as such.  To forever see them as the moment they entered the world.  My babies.

Lesson learned.  Keep them as close to your heart as possible for too soon they will be on their own adventures.

 

xoxo

Lately I’ve realized the difference in what we think should be understood to what is actually understood.  I wonder if we’d try to walk in someone else’s shoes for a moment, view life from their eyes, hear words from their ears.. would you still feel the same?  Everyone has a different perception of what is said, heard or seen.  I’m coming from a mom of a child with Down Syndrome, yet in reality, this could be felt in any given situation.  Politics, religion, neighbor differences, families, etc.  If we hear one another for who they are, how they view the world, how the feel, then maybe the drastic decline of humanity would be lessened.

I was lying in bed at 4:00 am this morning with my daughter.  We were both awake due to a bed wetting accident (her, not me!).  I asked her if she was okay and her response was “Tunia”.  (that’s our nickname for our dog, Petunia)  Knowing her, how she speaks and sensing her body language, I knew that the dog was simply laying too close to her to comfortably fall back to sleep.  Then I began to think.. if we put as much thought into how the world around us lived as we do in the way our loved ones communicate, we may just have a better place to live.

Have you ever just listened to someone?  Not with judgement, not with frustration for a difference of opinion, not with rose-colored glasses..  just listen.  Every single person on this planet, child or adult, has feelings, thoughts, ideas.  And, I’d bargain to say that everyone just wants to be heard and loved.  After having my daughter, I had to see the world differently.  The world is a scary place, if you let it be.  I lived in fear for a long time.  How would people treat her being that she was born with Down Syndrome; how would she live after I’m gone; who will make sure she’s taken care of in this world of condemnation and fighting?  I lived in this bubble for long enough.  I prayed.  I talked to my family, I listened to my gut instinct.  I had to force myself to just be.  I can’t control the world or the people occupying it, but I can control how I interact with the world and its challenges.

When people don’t respond how we think they should, we tend to get upset.  Why don’t they understand where we’re coming from?  Why do they have to be so difficult?  Have you considered that your reaction to them might be the most hurtful, degrading thing they’ve encountered recently?  Maybe they thought you were the one person who they could relate to, yet you’ve just crushed their sense of being.

I love knowing that there aren’t two people made the same.  God’s plan was to create a world of uniqueness, individuality, beauty and acceptance.  Whether you believe in God, or whomever, you were created to be a lovely creature walking this Earth, having a voice, spreading your love and being an integral part of this thing called life.  We all have challenges, we all have differences.  I think that if we were to educate ourselves to see people for who they are, not the preconceived idea of who they should be, we might all get along better.

Love is free.  Acceptance is free.

Just as if you were embarking on a new relationship and you had to see the new person’s ideas for what they are, see the world that way.  Everyone is different, yet everyone feels.  We can make a better world, just by effort alone.  Our differences are what make us unique.  And what makes us unique is beautiful.  If you can appreciate that, you’re one step ahead.

Talking to my daughter is sometimes challenging.  Sometimes she will say exactly what she wants, yet most of the time her responses are one word and I have to decipher what’s actually going on.  I’ve learned patience.  I’ve learned that her lack of communication makes it difficult for her to respond how I would think she, maybe should or could.  This is my bad.  She has no control over what I think she should be able to do, yet I had to step back and see things from her eyes.  She is trying her best to tell me whats wrong, what she wants, how she feels, etc.  I just need to listen.

Same goes for all people.  Listen.  If we try to see life how they do, maybe we could reach a peaceful compromise, a loving lifestyle or simply an unexpected friendship.  Accepting our differences and appreciating one another may just make this life easier to enjoy.

I don’t know about you, but I hate confrontation.  Don’t get me wrong, I’ll stick up for myself if need be, yet I don’t look for instances where I need to forcibly make myself heard.  I may not be the best listener, but I think I do a decent job at seeing different perspectives.  I don’t see that hurting one another is an answer to anything.  I definitely do not agree with neglecting another’s ideas just because they aren’t mine.  My brother calls me a hippy and I’m totally okay with that.  It may sound silly, but if you believe in past lives, I’d be the girl placing flowers in gun barrels instead of chanting in protest.  Or feeding innocent, neglected individuals left on the streets because of a government that’s failed them.  That would be me.  I try to see the world for what it is.  I’m not saying I’m right, what I’m saying is that believing that everyone is valid, precious and worthy of being who they are is important.

Be kind.  Love, educate and accept.

xoxo

 

{This post is hard to write.  I am not writing it for you to feel sorry for me or my daughter, yet to know where I’m coming from.  We have a good life.  No matter the challenges, my kids are my entire world, diagnosis or not.  As you read farther, I hope to put into perspective some of what other moms go through on a daily basis.  Some of you will appreciate the rawness, while others may wish to pass on this post.  Either way, its real life and I’m thankful for every single second.}

There isn’t a day that goes by that I don’t look at my daughter’s face and feel grateful for being her mom.  Also, I can say with absolute certainty that there isn’t a day that passes that I don’t feel like crumbling for her. My five-year old daughter, whom I speak of often was born pre-mature with Down Syndrome.

I knew I was in labor.  I recorded all of my contractions, feelings, everything.  I was ready to call the midwife to let her know that we were having a baby sooner than expected.  After hours of contractions that continually grew closer together, I knew that I needed to rest.  I was in for a long day ahead.  I went to bed and awoke at 6am to blood covered sheets.  After a great deal of panic, we rushed to the hospital.  There we met with a team of doctors, specialists and surgeons.  Hours later, Ingrid was delivered.  What you expect from any delivery is to deliver and immediately see your new baby.  Not the case.  As soon as she was delivered, she was rushed off to be seen by nurses and doctors.  I do not recall there being any sound.  Especially the sound that everyone was hoping to hear.  Ingrid was not crying.  After what seemed like the longest seconds of my life, she made noise.  A surgeon approached my bedside, while still in labor, to tell me that he believed my seconds old daughter has Down Syndrome.. and walked away.  No explanation, no further conversation, no room for questions.  As distraught and shocked as I was, my midwife at my feet was just as appalled.  All I could think was “What are you saying?  How do you know?  She was just born!”  I was not in the position to be making a fuss, yet all I could do was beg to see my baby.  At first sight, none of their concerns mattered.  She was mine.  She was perfect.  She will conquer the world, no question.

What I did have to do was come to terms with everyone else.  Ingrid’s diagnosis was serious, but that didn’t change the impact this beautiful girl had on my heart before I could hold or see her.  She was mine, perfect and precious.  There was never a doubt in my mind that Ingrid would be fine.  There was never a doubt that she wouldn’t do amazing things in life.  What we didn’t expect was the reactions from others.  Phone calls apologizing to us for having a special needs baby.  People, whom we thought would react differently saying things such as “I just can’t deal with this”. All I could think was Thank God I have never asked you for help, to care for her, to “come to my rescue”, etc. I had more difficulty with grasping this reality than that of our child’s diagnosis. How will the world treat her? Will they see her for who she is or simply see a girl with almond shaped eyes and a diagnosis? THIS is what made my life complicated. Not the doctors appointments to assure us that she was healthy, not the hospital stays to help her thrive (because there was a time when she wasn’t), and not the days of zero hours or minutes of sleep.. all while trying to keep up with her twenty-one month old brother. It was the words of others that was crushing, the stares, the comments of discontent on our behalf.

From that moment on, I’ve lived by one philosophy. She is my daughter, perfect, no different from anyone else on this Earth and for as long as I’m alive, she will always be treated as just that. You see, no one can prepare you for any of this. Sure, you can gain knowledge from books and advise from people who are living a similar life, yet no one can tell you how to treat your child, how to react to the hard days, how to handle the stares and apologies, how to stand-up to professionals because your gut feeling as their mother is telling you that they aren’t right. None of it.

Ingrid has gone through phases that I couldn’t fathom. Every child goes through phases, changes in behavior based on a number of factors, no two children are alike. I never realized, and some days I still don’t get it, how to ease Ingrid when she is completely out of sorts and losing her grip on reality. Sounds harsh, right? Without sounding so, it’s very difficult to explain to others. People with Down Syndrome seem to be characterized their bubbly personality, energetic outlook on life, and being a joy to be around. What you don’t hear about is the breakdowns, cowering in corners or under tables because every aspect of their being is uncomfortable. Situations that we take for granted, my child sees as an attack on her person. It’s very likely that if you see her in public, she isn’t going to be the sweet little girl who says Hello, waves, makes polite conversation. She will be the kid with her face buried in her knees because she doesn’t want you to see her. She will be the sweet little girl who is petrified to think of you looking at her. She will be the little girl that takes at least an hour to warm up to other kids at a friend’s birthday party. Don’t get me wrong.. she’s a delight to be around. But if she isn’t sure about you, you are not in her inner circle of comfort and don’t expect anything from her. She’s a tough little thing. She’s brilliant, resilient (sometimes!), and a total joy to be around most of the time.

Here’s the kicker.. as beautiful as Ingrid is inside and out, she can be one of the biggest challenges of my life. As her mom, I have days that all I want to do is walk away. Not in a forever kind of way, and definitely not in a harmful way, but just walk away. Some days I’ve been told to “shut up” more times in a single day than most people are told in a year. You might think its our parenting, and maybe you have a point, but I feel that flooding her with love is much more effective than shouting (which I do, because I’m human) or spanking. If you know me, you know that I have the most amazing, supportive parents a person could have. That said, my mom has listened to me sob on the phone more times than I can count because the days are just plain hard. The way the world is treating her, the way she’s treating the world.. and what if I’m making it worse?! I don’t know most of the time. I’m totally winging it. I tried to read the books and listen to other parents in support groups, but that isn’t me. I never grieved my child’s diagnosis as they’d describe. I never thought I couldn’t do this. I never thought life would be easier without her. NEVER. There have been hard days, yes. But she was made by God’s hands, as perfectly as he’d made you and me.. and this is something that I have to remember on a daily basis.

We take for granted many daily tasks that my child just can’t do. Sitting in a crowded restaurant, going to a movie theatre, or even school. I feel that I need to censor everything for her because I know her best. I know that she will not enjoy the same things that most kids do. I want her to try everything she can, yet I know her limits and ques. I know when she’s had enough or when she’s just being stubborn, but that doesn’t negate the fact that her “done” is different from most people’s. I’ve sat through countless meals in public, eating with her on my lap, face buried in my neck and begging to go home. We’ve had to talk her out from underneath tables because she thought there were too many people around her. I’ve had to beg her not to hit herself or pull her own hair because she’s hit a sensory overload that I can’t even comprehend. Meetings with school teachers and psychologists that don’t understand her speech or how to handle her behavior or lack of. IEP meetings that I dread because it’s the same all the time.. I am my child’s advocate, her speaker, her thoughts, her defender, her body-guard, her mom.

You wouldn’t know this, but I’ve literally spent one single, solitary night away from my kids in their lives. One. I did so because I needed to breathe. I needed a moment of not carrying my five-year old like a baby because she’s unwilling to be around anyone else. Because I needed a moment of quiet. A moment to gather my thoughts. I needed reassurance that someone else in her life can handle her for just a bit.

As I write this, I fear that the wrong impression is being released. This life that we’ve been given is the best. Yes, it has its challenges, but I wouldn’t change one day of it. The hard days will never go away. I’ll continue to struggle wondering if I’m doing this right, just like every mom. But one thing I am sure of is this.. nobody will ever love my kid the way I do. For the days when I have to walk away and let her dad take care of her for a few hours while I work or just need a break, are insanely heartbreaking. Hearing her cry, pleading to come with me, saying “mommy… mommy..”. Those are my saddest moments.

Like all children, mine are completely different from one another. I appreciate their differences and likenesses. My son adores his little sister, yet they have a very typical bond. They tease one another, they get on each other’s nerves, etc., but he’ll do anything for her.

This may have sounded like a pity-me story. I sure hope that isn’t the case. I guess I just wanted you to hear the realness of life from a different prospective.

xoxo

Never a time has come that I could imagine my life without her.

Her spontaneity bring virtue to my soul and light to my darkest days.

She is sprightly, fierce and electric. Her strength is unmatched; her will unapologetic.

She came into my life on a whim, unaware of her beauty, she rises to every challenge.

She is my child. She is my blood. She bares a remarkable heart.

Brilliant in essence. Sparkling with personality.

To know her is to love her. To fear her is your loss. She is simple and complex. Tiring, yet rewarding.

She is composed of love and shares it with others in a single smile.

Born unique in her own right, she will never allow to be overshadowed. Demanding to be herself, she will conquer far more than ever expected.

She is my child.

There are many fears that tag along when becoming a mom.  Add to that, being the mom of a special needs child.  When you list all of the possible things that could go wrong or happen to your perfect mini-me, one can understand that by their age of 18, you have either become certifiably insane or an alcoholic.  I venture to say that I’ll freely accept the first.

Upon moving into our new house, I envisioned that someday we would have an “issue” with our little escape artist, Ingrid.  I purchased all of the appropriate safety locks for our doors (or so I thought!) and began rising earlier (much earlier than I like) to be ready for the day.  Played out in my mind I had taken enough safety measures to ensure that all was good in our world of keeping the kids safe when I wasn’t hovering over them.  It didn’t take long for Ingrid to scare the life right out of me.

This morning, I wake early, just as every other day.  I hop into the shower without a care in the world.  Within minutes I hear her yelling “Daddy!”.  Naturally, I yell back ” I’m here.. just lay down.  I’ll be right out.”. She busts through the door!  Okay, so that’s the first heartache for the morning.  After a few seconds of begging her to lay down in my bed until I’m done, she slams the door and off she went.  Uh oh!  A minute later, my six-year-old comes in the bathroom saying that Ingrid woke him up.  Here we go.  I ask him to go find her and get back in bed.  He responds with “I can’t find her anywhere”!  What?!        

As you can imagine, I took the fastest shower of my life.  I’m pretty sure I got clean, buy I was a bit more concerned with the whereabouts of my kid.  Seconds later I’m rushing through the house yelling her name.  I found her in the garage, sobbing.  My first reaction was to yell at her for taking off, yet I realized that didn’t work because now she’s crying harder.  I grab her, console her and carry her back into the house.  Whew!!  My little girl almost made my heart stop this morning.  Every scary thought ran through my mind within the smallest amount of time.

Many people wonder what it’s like to be the parent of a special needs child.  Every parent has a different experience and many that I can’t relate to, but one thing is certain.. typical or otherwise, kids know how to scare the poo out of you!  Lesson learned..  I’ve got to get this house secured!  I know it’ll happen, yet I never want to feel that desperation again.

Stay strong parents!  We’re all they have and they count on us.

xoxo

Being called Mom is a privilege.  So many ladies out there would give anything just to hear those words.  Words that are easily taken for granted by the ones who are.  Add in an ounce of something extra, like an extra chromosome in my case, and let’s just say that no one is truly prepared for what comes next.

I’ve read the books, joined the support groups and talked to other parents.  Just like our kids, there are no two situations the same.  Yes, my kid has Down Syndrome.  Depending on many circumstances, she may or may not  look as though she does.  She does!  And there is not one speck of her being that I would change.  Often I hear that DS kids are delightful, funny, the light of the room, etc.  I guess it’s possible that her personality didn’t feel the need to be “typical” in any way because she is not typical.  She is delightful.. at home.  In a public setting, she is happy, but doesn’t want attention.  For instance, about a year ago we were walking into our local grocery store when an employee mentioned how beautiful my daughter is.  I’m not kidding when I say she looked at the person and without hesitation said, “Shut up!”.  Mortified, I instantly apologize and walk away as quickly as possible!  Before, I would have felt the urge to give an excuse or explain her diagnosis, but those days are long gone.  She is a kid.  Her personality doesn’t have to be a textbook description of what her diagnosis says she should be.  She loves to sing and dance, but don’t put her in a spotlight.  She will shut down faster than you can crack a smile.  She isn’t affectionate.  I say this lightly.  With her family, she is all about loving on us in her own time and pace.  Be warned.. do not engage this kid in hopes of cuddles and giggles.  She will run, she will fold, and she will scream!

To go along with my unpredictable kid, I am her mom.  I am also the mom who is investing in child proofing our house because she can be an escape artist.  I am the mom who blogs in the middle of the night because I can’t sleep so I listen and watch her on the monitor in the likely failed attempt at her sleeping in her own room.  I fear so much for her.  That she’ll stop breathing during the night.  That she’ll wander off while I rest my eyes for a few hours.  Or that she’ll think I don’t care because I’m trying to make her more independent.  I carry my 4 year old like a baby while crossing through parking lots because I’m afraid that she’ll run into traffic.

I do this mom thing in an unconventional manner, but I do not make these choices lightly.  You can probably tell by now that I’m a thinker.  I think a lot.  That’s not to say that I care about everything, because I don’t.  If my kids are involved, I’m all over it.

What I want people to understand is that just like our kids, there are no two parents the same.  I adore my kids with every ounce of life.  There is not a person out there who can dare say that I’m not involved.. I so am!  What happens at their worst times breaks me down.  These are things that are relatable, yet change with each perspective.  Ingrid isn’t a classic definition of a non-verbal child.  She speaks, she yells, she isn’t shy about telling you a two minute story.  Whether or not it’s entirely understood, that’s different.  I can decipher most of what she says, but there are days.. whew!  Then there are the times when she isn’t well.  The days that she is feeling unlike herself and voicing her thoughts or feelings just isn’t happening.  I can’t begin to express how much it hurts to watch your beautiful baby girl punch herself in the face or scratch her legs until she breaks skin.  These days I try my best to hold strong, all while breaking down deep inside.  Most of these times, words do not come from her gorgeous little mouth, but only screams and growls.  The hair pulling, hitting and tantrums can only mean one thing.. she needs me.  She needs held to know that I’ll always be right here.  I’ll fix it however best I can.

To add another aspect.. our son.  This kid has such a strong, loving heart that he cries seeing his little sister confused and frustrated.  He tries to rationalize with me when I’m beginning to get frustrated because she won’t calm down.  He will sit down with her and very gently speak to her in an attempt to gain her trust.  Having him watch this and grow older every time she is facing a challenge, I often wonder what he thinks.  Will he grow up knowing that a diagnosis doesn’t define anyone (I hope so!!)?  Will he have the same respect for her in twenty years that he does now?

This is my life.  I wouldn’t change one thing about it.  My kids are my everything, yet seeing it through different eyes sometimes helps us understand why the parents do things the way they do.  We are all different beings with one common goal.  We want our children loved like everyone else.  Down Syndrome has been a new chapter in our lives. A chapter that I will continue to learn from and strive to be the best parent for her.  She is utterly amazing and I cherish every second that I can look into her face!  The words “I love you” coming from her (and my son) are the sweetest sound to me.

I guess my point is this.. don’t judge.  You have no idea what parents are going through.  Our daily home life is different from others, and that’s okay.  But cut slack where it’s due.  The challenges that face us are continually different and sometimes difficult.

Stay strong friends!  Parenting is hard, yet we’re raising a generation of spectacular little souls!

xoxo

Ahh, the adventures of potty training.  If you have kids, you can feel our excitement.  It’s so funny to think about..  it’s two-fold.  Not only does this mean our kid is growing up, but what it really means is that we’re saving money!  Who wants to spend a large number of dollars on diapers and wipes that are literally poo’d in?!  I mean, I’d much rather spend that cash on something like a trip to Disney World!

Ingrid is at the stage in her life (or maybe it’s more for me!) when potty training is a great idea.  Trust me when I say she does not feel the same.  If there is one person in the world who has less interest in going on the potty, it’s this girl!  She is not feeling it.  At all!! Now I know the process is going to be different from when our son decided diapers/pull-ups weren’t cool any longer, yet I can’t seem to get her on the same page.  We try to make it an exciting process by saying things like she’s a big girl now or that she can get a treat (Ya know, because bribery is a parents’ best friend, especially when potty training! Ha!)  This isn’t supposed to be a humbling experience for anyone involved.  It’s a do or die process.  If the beautiful little joy that you’ve grown and nurtured decides that you’re worthy of her toilet experience, then you’re set.  But if that little prince or princess feels that you’re not, well then, break out the big bribes, parents.  There has to be a breaking point, right?

Last summer my husband and I purchased the cutest printed training pants for Ingrid with the hopes that she would be excited about trying something new.  Not only did the smallest size sold in the store not fit her tiny frame, but she was anything but impressed.  We tried time and time again to get her to wear the starry night pull-ups, all while sitting on her tiny portable potty chair almost every hour.  This fun routine went on for a few days, until she finally said NO MORE!  Her interest was not there, never was, and now she was completely over entertaining her parents.  So, what do we do next?  We buy her a toy.  Yes, we stooped to a new low and fell prey to the parent bribery trap.  At that very moment, it seemed that we were winning.  She had agreed to be a big girl and go on the potty.  New toy in hand, she sat on her tiny seat to potty.  What happened next will likely not surprise you.  Nothing.  Nothing happened.  She refused to go potty.  Pulling the wool over the parent’s eyes, the kid fooled us.  We had such high hopes of having both kids out of diapers, yet she had other plans.  Apparently, her plans included a new toy!

Here we are many months later about to make another attempt at potty training.  As you know, we have many friends in the DS community.  Although we choose not to do things differently than most parents of special needs kiddos, we will always ask their advice when necessary.  These other parents have been in our shoes in one way or another and we value their word.  Anyhow, I asked a few other parents about how they got their kiddos potty trained.  As much as I thought I would be that hard-core parent, I am not.  I see now that my kids have me wrapped around their fingers and I am losing the battle of having kids who are textbook awesome.  Instead my kids are little dictators.  Wow, actually saying that out loud really puts it into perspective.  HA!  I have to laugh at that because it’s not entirely true, yet really funny to say it that way.  They are opinionated, strong-willed and stubborn.  Traits that I am so glad they have.  I’ll likely be more appreciative of said traits when they’re older and no longer living in my house, but for now I’ll go with it.  They’re adorable so that makes it all better.

So, back to potty training.  Our dear friends did something that I’m going to give a try.  Potty training boot camp.  As harsh as it sounds, I have complete faith that this will be the light bulb monent when Ingrid decides that it’s worth a go.  Not sure I’m completely prepared for the impending work, but with summer around the corner, I hope Ingrid agrees.  That bag of trendy starry night pull-ups is still waiting to be worn.  I imagine I should invest in some obnoxiously princessy big girl undies to push along with our master plan.  Wish us well because only one of us can win this battle..  it’s either me or Ingrid!  She may come out of this with some new toys, a lot of croissants (her favorite food) and laughing all the way or we’ll have a little big girl with lots of toys and potty trained!!  Either way.. pray for us!  All of you parents out there can feel my displeasure of potty training.

xoxo

Wow, I have missed this!  Over the past few months I have been busy working on other writing projects, spending time with my family and planning my posts.  Now I’m ready to get back to work.

I have a desire to explain something to everyone.  You already know that our beautiful daughter has been blessed with Down Syndrome, yet what you don’t know is why I won’t advocate for her.  As I say this, please understand that I have many friends who choose to stand for their cause and I am writing this very delicately, as to not discount anyone’s purpose.  I applaud you!  But my focus is different..

Before having a child with Down Syndrome, I had no knowledge of what this diagnosis contained.  My husband and I were not aware of the health concerns, development delays, or any other hurdles that we may encounter in our daughter’s future.  All we knew was that we were embarking on a journey that would enlighten us to an unknown world.  I won’t lie, I was taken aback when her diagnosis was confirmed.  Not that I was afraid of my adorable baby, yet I was worried about how the world would treat her.  When Ingrid was less than a month old, we were given some advice that I’ll never forget.  Our pediatrician at the time said that Ingrid is just a baby and to treat her that way.  We couldn’t expect the world to embrace her and her beauty, unless we showed the world all that she had to offer..  and that didn’t include a diagnosis.  It was about a girl who had enormous potential to conquer the world.  These few little words have stuck with me since the day they were spoken.  My husband and I vowed that we would never treat Ingrid any differently from her siblings.

You see, I feel strongly about this.  Ingrid is now four years old and doing wonderfully in school.  We haven’t been faced with many health concerns, she is extremely healthy.  We have run into some “characteristics” (I say this very lightly) of DS that we understand are common, yet we never let that be an excuse.  She sees her older brother doing his chores and always wants to help, so recently, I gave her her own chores.  At four years old, she helps me fold laundry, unload the dishwasher and she sets the dinner table every evening.  Some of you may not agree that our kids have chores, but I will not apologize.  We are teaching them that you have to work to make life happen.  You can’t expect to be handed anything!  I never want Ingrid to grow up with the understanding that because of a diagnosis on paper, she can’t or shouldn’t be treated like any other person.  She is a person and she will be a valuable asset to the world around her.  Her understanding may be delayed, yet that doesn’t have to stop her from accomplishing absolutely everything she can dream of.

This is why I don’t advocate.  Trust me when I say that I understand the importance of anyone who chooses to do so.  But my focus in life is for my children to see that hard work paves the way for life.  My children know that very few things are free, except love, friendship and respect, but even those require work.  All of them are loved and cherished for their individuality.

When Ingrid was about one year old, Brixton couldn’t grasp why we frequently went to therapy and doctor appointments.  Keep in mind, at the time he wasn’t even three years old.  After some thought, I explained to him that Ingrid is different from he or I.  That she was born slightly different and would need some help with the things that we take for granted.  I told him that as they get older, its possible that other kids, and sadly some adults, would say that she was “weird”, but that was okay.  Not everyone has the opportunity to know someone like his sister, that we are lucky!  He may hear people say that she’s special, but that didn’t mean that he wasn’t.  All he needed to know was that he had a cute little sister and we would take care of her, no matter what.  I told him that when, or if, he hears someone say mean things to her because she is different, that he could simply respond by saying that we’re all weird and that’s okay.  Being different is exactly how we’re meant to be.  There are no two people alike!

I hope I wrote this as delicately as possible.  I applaud everyone who feels driven to speak up for those who can’t.  And I thank you for your hard work that will likely influence my children’s lives!  We may do things differently in our family, yet your vigilance will never be overseen.

Ingrid has a diagnosis on paper.  There have been times when I felt the need to explain to passersby that she isn’t “typical”.  I have seen my wrongdoing in that and no longer feel that need.  She is a girl.  A beautiful part of the world that will journey farther than anyone could expect.

xoxo

Having a child that is a bit shy or backwards in public situations is rather common, yet I never imagined any of my children would be this way.  On many recent occasions, Ingrid has proven me wrong.  I believe she could win a trophy for her level of discomfort in public settings.  This child has reached a new extreme of shyness.

Over the holiday weekend, our family took a road trip to see our extended family to celebrate my dad and brother’s retirements.  My husband and I were looking forward to seeing many people that we haven’t seen in a long time.  At the same time, we were preparing ourselves (and others) for the overwhelming feeling that Ingrid would experience.  If you recall, we tried putting Ingrid in preschool a few months ago.  After seeing how much anxiety this caused her, we decided to withdraw her from school and keep her at home with me, until a more appropriate time came along.  Ever since, she has not been willing to be social with anyone, in any setting.  She is withdrawn in large crowds.  If there is loud noise, she is even more unhappy.  As her mom, I feel terrible and torn.  I feel terrible because I know she is incredibly unhappy and overwhelmed, yet I feel torn because I am so proud of her and want to show everyone how amazing she is.  At the same time, I don’t want to make her experience worse for her.. I wish she could enjoy it.  After noticing how miserable she was for several days while visiting family & friends, I felt it was time to get an outside perspective.  I spoke to one of her therapists about the issue.  As I’ve said before, we are surrounded by brilliant people.  Her therapist had some wonderful ideas of how to help Ingrid adjust to ever-changing life situations.  She brought to my attention things that I didn’t even consider as being a potential concern, such as body awareness and personal space.  If I, or we, teach her about her own body, how it works, and her personal space, she may understand that the people around her are not a threat, just other people.  Also, recognition.  My husband and I have noticed a pattern of what really makes Ingrid shut down emotionally.  New people are completely scary for her.  I understand this is something that she will come across for the rest of her life, but her sheltered personality is not prepared for so much newness in such a short time.  need to be more accommodating to her sensitive nature and not push her into situations that are too frightening for her.

Being completely honest, this concerns me.  What kind of life are we leading?  My husband and I do not have the personalities to be reclusive.  We are outgoing, outspoken, fun-loving people.  Our other kids are the same way.  Rachel has been an active part of competitive cheerleading for many years and Brixton is a social butterfly.  Are we hindering Ingrid’s beautiful soul by pushing our own ways onto her?  Are we enhancing her level of discomfort by placing her in situations that she is not mentally and emotionally prepared for?  All of this has my mind reeling.  The last thing I want for my kids is to feel that their wants, needs, and self-being is not being respected.  Yet I want them to flourish in life, however they choose.  I think it’s important for me to take a step back and put myself in her shoes, per say.  How do I feel when being forced into a situation that I am not comfortable with?  As an adult, we handle things differently and can rationalize why we feel a certain way.  But for a toddler, her words are limited and her ability to comprehend the situation may be less.  That being said, if she doesn’t have the opportunity to overcome her fears, how will she learn to handle the world?  This is no longer about keeping her sheltered until she is ready.  I need to help her branch out into her own comfort level in various settings.

I found myself making excuses for her when we were in large crowds.  Everyone is so loving and caring and want to see her beautiful face that is buried into my neck as she hides her eyes.  I would tell people that she is being shy or that the crowd is too big, but don’t worry.. it’s her, not you.  That is in fact true, but assuming that I need to make an excuse is my fault.  I realize now that even though adults love admiring our cute kids, we bombard them with hugs, stares, handshakes and more from people they do not know.  They are not wanting the attention.  They simply want to be kids.

On our way home from our family gathering, I began to think that Ingrid’s behavior could be more than I understand.. maybe it’s related to her having Down Syndrome.  After speaking to her therapist, I now know that it isn’t likely, yet more her personality.  She is the opposite of anyone else in our house.  She content being in the shadows of her brother’s silly character.  She allows me to make decisions for her.  And she relies on her dad to protect her.  We do these things without thought.  We do them because we care.  But by doing them, are we hindering her from blossoming into a confident person?  Oh, the woes of parenting.  I’m sure this is said for many topics in raising kids..  we do things with the intent to show them a better life, all while holding them back in hindsight.  There is no easy way to overcome this.  We can not just let our kids live in reckless abandon.  There need to be lessons in life, rules, understanding.  I guess it just comes down to doing the best job we can do as parents, with our kids best interest at heart.

Parenting is an ongoing lesson for me.  I’ll never be the best, but I can be the best that I know how to be and learn daily to encourage my kids with love.

As I sit in my office, the house is quiet, and I wonder where to begin.  It isn’t uncommon that my mind is racing with all that I want to talk about on any particular post, yet today is different.  My planned topic for today is going to have to wait.  I feel compelled to talk about something with more depth.

In light of recent tragic events, I will not discuss politics or gun control.  But I want to touch on something like this:  Us.  Humanity as a whole.  Why are we such a judgemental group that we are willing to destroy someone or something else, just because we don’t feel it’s importance?!  We do not and will not always agree, but is it our place to degrade (or worse) those who are different from us?  I feel this is absolutely disgusting.  I have strong opinions, as does everyone, but I would never harm another living being based on any belief or feeling.  There is so much wrong in this world.  So much hurt.  I try to see it from a different prospective, than just personal opinion.  As you know, we have a daughter with Down Syndrome.  She was born a blessing to our family and we are raising her to see beyond her diagnosis.  She is an intelligent, beautiful person that has goals, ambition, and can conquer anything she puts her mind to.  I will never let anyone tell her otherwise.   It is no secret that she is different than you or me.  She learns at a slower pace, one that is perfect for her.  She understands differently than I do.  But she is no less human than me.  We, her parents, will never allow her to feel sorry for herself.  The world is here for us to make better; to shine our light wherever possible; to show those less positive that a kind heart is the only way to be.  I will not allow her to feel your hurt.  She will have her own.  We teach our children peace, not anger.  Being a parent is hard.  Being human is hard.  But if that were your child hurt by a horrific, senseless act of violence.. what would you do?  Would you change your views?  Would you accept that no one is the same, but that doesn’t make us wrong..?!  Would you allow the next generation to believe that violence really IS the answer?  I won’t.

When I said we teach our kids peace, I mean this..  my kids are no different from your’s.  They are rotten at times, they argue over silly things, they play, they laugh and they drive us crazy from time to time.  They are not perfect by society’s standards.  They are kind-hearted, fun-loving, brilliant, sweet, resilient beings with hearts of sincerity and love.  Because that is how we choose to raise them.  When Ingrid was born, we brushed aside the fact that she has Down Syndrome.  Not because we were ashamed or scared, but because she was a baby.  She was healthy and perfect, and we didn’t want to make it something that led her life.. or our son’s.  Yes, he has a sister who is different.  Different is good!  It is welcomed in our family.  Every one of us has a different personality.  We accept that.  Our son, Brixton knows that his little sister is not like him.  He understands that she is smaller and doesn’t quite talk clearly.  He knows that she requires more attention at times.  Yet, he loves her none-the-less.  He cheers her on at her accomplishments and brags to strangers about his “baby”.  They are tender children because that is how we want to unleash them on the world when they are adults.

Don’t you see..  we are raising our kids to hate and fear and differentiate.  The world is full  of religions, nationalities, abilities and dreams.  I fear that several years from now it will be easier to hurt others than it already is.  I’m not naive.  I understand that bad people exist.  And I know that so many of them will go to extremes to accomplish their hurt.   I stand strong in this..  I pray that my kids never grow to feel that.  That they never have that passion to hurt another human.  That their loving souls will be the light of love and spread it across their lives.  I am not a perfect parent.  Believe me, I have made mistakes that I hope to forget about, but I can go to bed at night assured that my family knows I love them.   A few years ago, Brixton called me weird.  I laughed because he’s right.  I am weird.  We all are.  I have many tattoos adorning my body.  I’m not a typical mom.  I don’t implement a strict schedule.  I am unlike other parents.  My kids are happy.  They are loved.  We have told them that everyone is weird in their own way, and it’s okay!  There are no two people alike, so embrace it!  Enjoy the friends you’ve made, for you may never find anyone as perfect as them again.  This is what I want them to remember as they grow.  Their friends may practice a different religion, or none at all, but that doesn’t mean we can’t be friends.  We are here to enjoy our existence.  Let’s thrive knowing that we have the ability to make this world a beautiful place.

My heart is sad for anyone involved in the recent tragic events.  I pray for peace for you and your loved ones.  I can not imagine how you are feeling, but I do hope you can see outside the darkness.  There is light and it can shine on in the name of those lost.  We are remaining to tell their story, in a positive way.  I don’t have answers.  I will never understand why such tragedy occurs.  Yet I feel confident that I will never be the reason of it.  There is peace, love and understanding in this world.  We just have to reach for it.  If we put that at the forefront of our lives, maybe we, as a whole, can live in love.

Until next time..