It's been a long time!
I have spent the past 8 years doing more than blogging. I have been writing you all a book! It is in the final stages before it will release in this month. It captures the heartache and joys of raising Maddox and includes tons of colorful photos of our lives. This book also has something that no other book has. A self help section with coping activities that will work parents and caregivers through the grief cycle. This section has been co-authored by a certified mental health specialist. We are confident you will gain the tools you need to become a confident caregiver or parent. More details will be released soon!
What Is Wrong With Me?
What is wrong with me?
Today I sent my youngest and non challenged son to school.
Today I cried.
Three years ago I sent my oldest challenged daughter to school.
Three years ago, I did not cry.
What's wrong with me?
This afternoon I sat in my car on my lunch break and I questioned my heart as a mother. There's a cardinal rule and no matter what, you CANNOT love one child more than the other.
I dug deeper. Is there really a chance I love her less? In an attempt to help me feel better I wondered if there was a time I actually cried for my daughter?
Of course! There was that time she got very sick, pale, and started vomiting for no identifiable reason. She didn't have the words to tell me she didn't feel well. She didn't have the ability to understand my words as I tried to tell her what was happening. And I cried. My heart hurt because I couldn't help her understand.
There was a time when her brother slammed her fingers in the door. She didn't know why. She didn't know how long her fingers would throb. She didn't know my kisses were supposed to take the pain away. And I cried that day too.
These little moments started to add up in my confused brain and I realized yes, I do love her.
And there is absolutely nothing wrong with me!
It's simply that my love for her is "different" than my sons.
So no, I'm not a failed mother. Nobody told me parenting love is not about more or less, but it's about recognizing where it's needed most.
On my daughters first day of school, I already knew she was going to make it. She has the social skills to woo the world! Whether mommy was there or not, she would find her classroom, make friends, and embrace the unknown.
And on my sons first day of school I was scared for him. He likes the comfort and predictability of his home and believe it or not, can sometimes be shy.
So, it's not about who I cried for and when. It's about recognizing the difference and giving each child the strength when they need it most.
And nobody taught me that.
So today, I'm proudly shouting to the world that I am not a failed mom.
I need to share what I have learned about myself this week in hopes to reach one mommy that might have experienced that same feeling of incompetence.
Raising a special needs child brings more challenges and new emotions than I've ever imagined.
And not once, for a single moment, do I want a mom out there to feel like I did on that day.
I want to be the first to tell you.
There's absolutely nothing wrong with you - actually you're even better than you thought.
Kindergarten is looming
As I count down the day until the yellow bus picks up Maddox in our driveway, my heart flutters nervously. She is no longer walking into a small one building preschool. She will be walking into a real school building.
She will put into perspective, the important things in life.
More than a Mother
The memories all started this morning when I opened up my photo album to find the perfect snapshot to display on social media for the world to see. Mother's day is always a bittersweet day for me. I tend to think about my life as a mom, quite different than I ever imagined. I also think about my mom and all the things I am - because of her.
She always had a quote or saying that was just fitting for every moment.
For example, in middle school, I tried out for the basketball team. The coach couldn’t decide between another girl and I so we went to the team practices for one long tiring week before a decision would be made. On Friday at 5:00 PM he called me into his office. Unfortunately, the coach picked the other gal, not me. My mom was the one waiting at the school to pick me up after that meeting. She didn't know the outcome, she couldn't prepare her speech but the minute the car door shut, she knew which way the tide had turned. Mom knew exactly what I needed. Time. She drove me around town and let me cry it out. When I didn't have any more tears to drop, she parked the car and gave me my pep talk. A talk that would ring in my ears for years to come. When I felt like a failure, her words would remind me to never give up and that my dreams were worth fighting for. And yes there came a time when I did make the cut. Mom was right.
I scrolled across a photo that was taken when my best friend and I split our ways to attend college. It was a sad day for me because deep down, I knew our lives would never be the same. After spending the last four years, every single day, with someone, you tend to go through a little mourning process. After saying our final goodbyes I cried in my mom's arms. Yet when I was done, she knew exactly what to say. Dust yourself off, there will be changes in life, some good and some bad but making the most of them all is a must. There will be good things waiting, you might not see them if your sulk, and know that your friendship will always be deeply etched in your heart.
Life keeps rolling along, and yet mom is always there for me. She listens patiently as I tell her my fears and she celebrates each victory with me. She taught me that love is a powerful thing. For my wedding, my mom was my rock making sure I was nothing less than a princess. She came to my shower, rehearsal, and wedding day with one message.
Family is the most powerful thing you will ever experience. The love that Scott and I will experience will grow to be stronger than any bond. (Little did I know just how difficult our test would be.)
There was college. Mom was there from the beginning to the end. She started with me in Kindergarten when a group of school administrators told her to send me to an all deaf school. And she was there when I graduated from Creighton University with honors and a Doctoral degree in my hand. My mom listened patiently as I would panic before each test. She never once doubted me.
Then there was the time she flew in to Michigan from Nebraska and surprised me for my baby shower when I was pregnant with Maddox. Without me saying a word, she must have known how bad I needed her. When she walked in, my heart skipped a beat and I was thankful to have her in my arms again.
After the shower we went to our hotel and ordered room service. We stayed awake into the late hours of the night while Maddox hiccuped away in my belly.
After Maddox was born, mom was not only mom, she was my counselor, doctor, psychitrist, babysitter, and best friend. She listened to me day in and day out as I shared my fears. She sat in silence as I would sob on the phone from miles away. She reminded me that every thought I was feeling as a new and extremely scared mom was absolutely ok.
After Maddox was born, I wasn't quite able to do all the things I had wished. My mom stepped in and loved her when I couldn't. She went to great lengths to make sure I was I happy and provided humor when I couldn’t.
For Maddox’s first birthday party, she did her best to mask (literally) the pain I was in. For her efforts, I am eternally grateful.
I found a photo of when I was in labor with MacGregor. She knew I was so scared of what the future held and that my post traumatic experiences from giving birth to Maddox lingered dear to my heart. She couldn't make the trip in person to comfort me, but once again found a way even with the miles in between us to help me in my time of need.
My list goes on and on about all the times my mom was there to catch me when I fell.
But on the day of my 5th bittersweet Mother’s Day, I felt it was only appropriate to share just how much my mom means to me. She was there to hold me at the lowest point in my life.
She was there to pick up the pieces after they crumbled. She delicately glued them back together. Some pieces never made it back to the right place but she still follows her own advice.
Family is important, good things are waiting, and never give up.
Thanks mom, for everything you have taught me and for being there to hold my hand every step of the way.
A lot of people are asking my opinion of the recent news story about the wife who left her husband because he refused to give up his newborn son with Down syndrome. This is my response.
To be brutally honest, five years ago if my husband had offered to leave me, run away to a beautiful place and take care of my baby I would have happily agreed - and the world would have shamed me, just as they are doing to this mother.
We can't judge her. You see, nobody knows anyone's story. And my story (five years ago) went like this.
It is rare to have a baby born with Down syndrome. It's rarer to have a baby born with translocation Down syndrome. And it is extremely rare to have a baby with translocation Down syndrome born to a Doctor of Pediatric Occupational Therapy.
What this means is that I wholeheartedly dedicate 8-10 hours a day to providing evidenced based top notch occupational therapy services to children birth through 26 years old. What the world wouldn't have known about me is that I was extremely scared about if I'd have the energy to provide therapy to other people's children all day and then come home to provide a few more hours of therapy to my own child. And knowing me, I'd dedicate countless nighttime hours researching endocrine articles on growth hormones, otolaryngology articles about sleep apnea, adenoids, and tonsil removal. Cardiology articles about valve repairs, evidenced based oral motor therapies, nutritional therapies, and alternative therapies. My list of searchable interventions would consume my mind and I knew in my heart that I wouldn't be capable of handling both jobs or basically being on call 24 hours a day - every single day - for the rest of my life. So yes, if someone was willing to take that pain away from me in an instant, I would have accepted.
Back to that mom - Everyone has their own story and we don't have a right to an opinion about her choices.
Now, hold tight. There's a second part to this. I am now five years into my journey and if my husband offered to leave me, run away to a beautiful place and raise my baby I'd do everything in my absolute mommy bear claw power to stop him -- Because five years ago I didn't know what I know now about this bittersweet journey.....
And that revelation is critical.
I cannot believe there was a point in my life where was I was willing to let all of this all go.
It's obvious now, I was not properly educated. And that mom, that community, that country, has not been properly educated.
It doesn't matter if eyes are round, fingers are short, noses are flat, or ears are small. Underneath all of those superficial characteristics is a beating heart, warm blood, and a brain driven by love, compassion, loyalty, pride, humor, and determination.
That's my opinion of this story - shame on you for judging.
Our Down syndrome community (above all) knows what it feels like to be judged.
I challenge you to rethink those negative words towards that fearful mom and recognize that you need to be a part of the solution, not a part of the problem. Our group needs band together as a team and trudge forward with our mission strongly placed at the forefront and: Teach humanity how to embrace individuality.
There are so many wonderful Down syndrome blogs out there. Some are mothers who are photographers capturing and displaying the beauty of this journey. Others are medical doctors sharing their wealth of knowledge.
My question is, “Why do all these beautiful blogs showcase only the first few years of life?”
Each of these newbie bloggers has the same theme in common. They start with a beautiful and sentimental birth story then share the horror of receiving the diagnostic news. Then they go on to share all the "firsts" that happen because each milestone is huge. There are colorful photos and videos with sweetness written all over them showcasing sitting independently, crawling in cupboards, eating with a spoon, standing in the middle of a room on their own, taking their first steps, and finally the first word. These portrayals melt your heart and bring out such goodness and pride in the journey.
The hundreds of cutie patootie, angelic, wonderful, loving blogs simply - END.
Let’s be real here. Let me ask you this, “How many blogs are you currently following that highlight 6 to 15 year olds with Down syndrome?”
Ever wonder why?
It’s because once school starts, reality starts.
Reality hurts in so many ways because it’s your first glimpse of what your child looks like in a direct side-by-side comparison to 29 "normal” peers. As a parent lots of things stick out.
1. Not only is your child the shortest in their class, they are the only one not potty trained yet and possibly wearing a poufy pull up under those clothes.
2. And the clothes they are wearing are toddler clothes because they aren’t tall enough to get out of the Mickey Mouse themed sizes.
3. And the shoes, the ones that are two sizes too big to accommodate the braces that must be worn on their feet which provide the stability needed to help your child have a chance at even remotely keeping up with their peers when walking down a hallway as a group.
4. When you go to see your child at school you have to quickly respond to questions like, “Why do they look different, what is wrong with their eyes, why can’t they talk, why does their tongue hang out?” Try answering those questions on the fly with charisma. As if these physical observations don’t hurt enough, just know those are the superficial and obvious ones. The more detailed and hurtful ones have yet to come.
For example, during your child’s first year of school you as a parent will be presented with reports and data showing your child’s delays in communication, following directions, staying on task, self-help skills, cutting, writing, coloring, running, hopping and the long list of all the things your child can’t do drags on…
From the core of your being you will have hoped that all the time, therapy, and dedication you put in to your child from the day they were born until school age would have gotten them farther than preschool - before falling behind their peers. My point is, this stuff is hard to swallow, no matter how big or small this is in your tier of importance.
And while you’re sinking into a depression realizing for the very first time just how far behind your child is, your school might also agree and share all the things they can’t afford to do to help them. That is the reality and those are the blogs that parents need to read about. Just how difficult and emotionally draining it is on yourself and your family to fight year after year for a free and appropriate all inclusive education for your child. And when I say emotionally draining, I am talking about the hours you spend reading the literature and the research, the books on how to have a successful IEP, etc... Forget reading for enjoyment. That’s the truth that needs to be shared in these blogs.
Now we all know that once your child is in school, that’s when the inviting classmates to birthday parties start to become popular. I heard from a parent this week that invited several general education students or otherwise known as “normal” kids to her child’s birthday - and nobody responded. NOBODY! Where was the blog sharing the reality of that story? My point is… who wants to mend that little girl’s broken heart? This mom will do it.
I recently had a mom tell me she is emotionally drained because she feels like she has been raising a toddler for 9 years. Toddlerhood, remember those days? That is when you did mental checks involving choking hazards every nine seconds. You would make sure there were no quarters or fingers were being placed in outlets. You couldn’t sleep at night until you checked three different times to make sure the front door was locked in case of an accidental escape. Toddlerhood was exhausting. Now, imagine doing it for 9 years straight. I envy the parents who have normal children only deal with these things for age appropriate times. Special needs parent’s deal with the mental strain of dealing with toddler behavior for decades. It’s exhausting. Where is the blog sharing that reality? I am a parent of both a special needs child and normal child and am speaking from experience when I say raising my son is without a doubt easier.
I recently had my advocate tell me that things were only going to get harder. Seriously? I truly felt like I had been through the worst of it, but as I thought about what is to come, more fears sunk in. The bike riding years and the adolescent crush years will also be difficult because time and time again your child will come to mom with tears in their eyes asking you, "Why can't I ride without training wheels or why can’t I like that person?" Who will break the news? This mom will.
Let me share when those moments arrive, that's when you will realize that throughout all these years, the confidence you have given your child to tackle the world just might not be enough. They will soon realize they are different, they won’t fully understand why, and for reasons beyond their ability some things just won’t happen for them and there isn't a darn thing you can do a thing about it to ease their pain. Where are those blogs?
Therapy sessions verses playdates. That is one I still am dealing with. Summertime hits and the world takes a breather while my little girl only works harder. All so she has a remote chance at starting the next year close to where she left off. It’s not fair and it hurts like heck to see your child have to work so hard at every.single.thing. they do.
The empty nest fear still frightens the daylights out of me. Have you been to the grocery store lately? You don’t see a Down syndrome adult shopping alone. Many are tagging along right next to their parents. You see them anywhere from 30, 40, to 50 years old. Where are the cute blogs when your child is 36 years old, still living with you, needs reminders, meals, is missing out on college, house buying, marriage, children, and so on. I know there are new and different services available out there, but the reality is even at 50, this mom will still be the one writing the check for the services they need. Where are the narratives telling me how beautiful that part of the journey is?
And then there is goodbye. You know a parent's worst nightmare is having to say goodbye to their own child. I will have known life before my child and will have to learn to live life without my child. It chokes me up every time and takes my breath away but the reality and research has time and time again stacked those odds against me proving that the likelihood of this happening is extremely high. I do understand the risk of any child passing is a risk, but when odds predetermined and pick your child, the journey isn't as carefree and beautiful as initially portrayed. Unfortunately, that cute little happy blog your following, enjoy it while you can.
It hurts, every day hurts, and the pain of this reality never really gets any easier for both my daughter or myself. There is a saying floating around Facebook about walking a day in my shoes, and not many people would make it. I wouldn’t wish this journey on anyone else.
I know my blog may be viewed to some as hurtful. It is raw and I can tell you I am as truthful as they come. I know I will offend many people by expressing my fears, but it is also my hope to serve as the voice for many more that are too scared - or ashamed to share.
And that part, I am proud of.
You can criticize my viewpoints, in fact, I welcome hearing your perspective, but you can’t change the reality that I personally face on a day to basis. I do realize not everyone’s story is the same but this story is mine…..my story…. as it unfolds…on this very day. Tomorrow may be brighter but in the meantime I wanted to share with the world the darkest hours and what spins in this thick brain of mine.
Now, I promise you, I am not an entirely pessimistic person. I always try hard to share the bad followed by the good.
And the good is not just good, it’s breathtaking.
While the reality my family faces isn't always beautiful, my daughter, Maddox Lucille, now she is beautiful. And she is worth every last lingering bit of fight I have in me to give her a chance at succeeding at school, being invited to birthday parties, living on her own, and surpassing the medical odds. She has no choice but to succeed in this world because she was born with my passion and determination.
And yes, I promise to blog the entire journey throughout the good, bad, and beautiful. You bet I will continue to share my story with utmost passion and honesty and I hope those traveling a different journey will be respectful of that. Thank you for taking the time to listen, appreciate, and attempt to understand as I share today’s fears with the world.
March 21, 2014
Every year on this day, I sit down with a mind swirling of thoughts, some good and some bad. I never know what is quite going to make it to paper but here goes.
March 21st, a day to honor those who carry with them three copies of the 21st chromosome. It’s also a day designed to spread awareness. This year, I’d like to spread awareness about perception.
Today always serves as a bittersweet reminder of what I lost, but also what I gained. I’d love to say that over the years the pain of my loss has subsided, but in all honesty, is hasn’t. Unfortunately, there isn’t a day that goes by that I don’t grieve the loss of having my little gymnast or dancer, one that just might leave her mark in this world.
But at the same time, when I look at my big picture, I can sometimes actually see through the fog that I have gained an even harder working gymnast or dancer that might make an even bigger mark in this world.
In a different manner, than I had originally imagined.
Getting over my dream isn’t as simple as others would have liked it to have been for me. But every day I make it a hair closer as I trudge through the murky waters. Some days end with me actually managing to gain one step towards accepting the dreams - that were been chosen for me, not by me.
Yes, I understand that those "believers" would tell me that I don’t have a choice in my dreams, it is simply my job to accept what has been created. Please forgive me for not following your lead, but let me give you my point of view, my background.
I have been a self-creator of my own dreams since the time I was three years old and diagnosed with a severe hearing loss. Time after time, the report would be, "She wont hear, she wont talk, she wont go to school, she wont make the dance team." The list of all the things that people didn’t believe I could do goes on.
I had two choices.
One: I could listen and trust that the higher power had created my destiny; I could listen to these so-called “knowledgeable individuals” and believe they were correct.
Two: I could dig deep within, believe in myself, defy the assumptions, and defeat the stereotypes and statistics placed against me.
I must say that after 35 years, I can confidently say that I am an absolute PROfessional at defeating stereotypes and statistics.
Four years ago, as I was about to give birth to my first baby girl, I really believed I was done fighting. I was ready to toss in my shoes, stop pushing to conquer the unthinkable, and live life just it was presented.
I have had many families along my journey write and tell me I should accept this "chosen life." That I need to move on and not be so angry….
But these judgmental strangers: Have. Not. Walked. A. Day. In. my. Shoes.
On January 5, 2010 I wasn’t able to toss in my shoes like I had hoped. I wasn’t able to stop fighting for myself like I was anxiously waiting to do. Instead, I had to put those worn out shoes back on, tie them even tighter, and begin this journey all over again - fighting harder than I have ever had to fight before. I not only had to defy statistics and stereotypes about Down syndrome, but perceptions about Down syndrome too.
And I tell you, changing perceptions is the absolute hardest challenge of all.
Everyday, people superficially look at the size of an eye, the position of an ear, the shape of a tongue, or the style of language spoken - and are quick to judge the full potential of a human being.
This is wrong and must stop.
So must the use of the word retard to refer to our loved ones.
And while we are at it, if I am shaking my magic wand, I’d love to put an end to internet bullying.
Specifically the comments made about my innocent four year old child.
Comments from adult
who have never even met my daughter.
Really people? Adults have to ridicule innocent children to make themselves feel better? I don’t ever waste my time commenting back to these individuals. It was the fight they were after, and as I mentioned, I’m tired of fighting. So, I ignore these hurtful comments about disfigured faces, aliens, and abortions.
Let me ask you this?
How many adults with normal children have had these words used in reference to their child? I absolutely envy those parents who are able to live life not having a clue what we special needs parents experience on daily basis. I often read about their biggest worry being a poor grade on a report card, missing a word on a spelling test, or getting cut from a basketball team.
I’d give anything to have those worries.
As a parent I can fix those. We can study harder, shoot more hoops, run more miles, have longer talks, apply those lessons to life and learn from them. To me, those things are fixable – because they lie within our selves, and we can be self-creators of the outcome.
Changing perceptions of others, unfortunately, is not a self-creation.
It is a creation that I can education others about, but it’s a creation that I personally can not change. My only choice is to find the perfect ground, build the foundation, and hope that others will follow.
My goal is to find it within me to celebrate and educate others on this day. It is days like this that I am gently reminded of how hurtful the world really is and I am only one person fighting like crazy to change perceptions. To teach others that what is visible on the outside has absolutely no indication of what the inside is capable of.
On this day of awareness, I hope to lay the groundwork for others to realize how vital perceptions really are.
I challenge you to analyze your first impression. Take those initial impressions and toss them. Don’t let them count. Get to know a person and spend some physical time with them before you decide if they are cute, smart, likable forgiving, compassionate, lovable, humorous, and so on.
That person deserves way more from you than a one-glance, two-second perception.
I promise by doing this, that your eyes will open wider, your heart will grow bigger, and your self worth will rise higher than you knew was possible.
And one perception at a time, starting with you, the world will begin its transformation.
The people need this, I need this, but most importantly, my daughter needs you - to do this.
You've come a long way baby!
Maddox started preschool this past fall and I was every bit as anxious as her. I wondered if she would fit in, if the bus drivers would keep her safe, or if she would make friends?
A Doll for Christmas
It took me four years, I finally did it. And of course I did it Jamie style. I did not buy just any doll and it most definitely wasn't a flawless American Girl doll (There is a long history in the Down Syndrome community regarding American Girl dolls and their philosophy on making dolls reflective of special needs children).
But that story is for another day. Today's story is about this mommy's milestone.
I have to admit the whole process was crazy difficult for me but going non traditional was the only possible way I could imagine getting the job done. About 9 months ago I ran across an ad titled, "Dolls for Downs." I thought to myself seriously? These dolls have to be terrible looking because everything else I had seen as an attempt to replicate someone who had Down Syndrome was insulting. These dolls usually had unproportionate eyes, ears that looked like monkeys, and a tiny mouth so small you couldn't even fit a pretend baby bottle in it.
I was curious so I went to the site, www.dollsfordowns.org. I closed it right away out of panic. What was I doing?
Over the next three months, I kept visiting the site. First, for seconds, then minutes. at a time I probably visited about 25 times before I actually spent some real time browsing. I couldn't believe I was there shopping for a baby doll for my princess daughter on this website.
Throughout this process, I began to get angry at all the traditional doll makers. Why must the creators believe in blue eyes, smooth skin tones, perfectly shaped fingers and toes, thick hair, and of course a flawless figure? It just isn't fair to those who were innocently born with body features that are not considered the norm.
Fed up with traditional doll makers, I landed back again at the Dolls for Downs website (FYI.... They have since changed their website address to www.extraspecialdolls.com).
After hours of browsing, I had finally found a face that was starting to look intriguing to me. The dolls name was Kynsee.
She had mottled skin, almond blue eyes, single palmar creases, a rounded belly with flared ribs, and sandle toes. And better yet, the clothes that Kynsee was wearing were designed to be manipulated by down syndrome fingers with a large plastic zipper on the back of her dress, large buttons with even larger button holes for them to fit through.
The more I studied Kynsee the more prefect she became for my Maddox.
I finally succumbed enough courage to place an order. My order happened to be one of the very first deliveries prepared by the Dolls for Downs company, so I had to wait four long months before I would be able to hold and inspect Kynsee.
I was so nervous to check her out. Had I made the right decision?
Three weeks before Christmas she arrived.
I stared at the box a while before I opened it.
Once I did, Kynsee, welcomed me with a sign for, "I love you." After a thorough inspection, because she had to be perfect in my eyes. I packaged her away, and carefully wrapped her with love a few days later.
Kynsee had passed my test. But the big question is.... Would she pass Maddox's test?
Without further ado, photos from Christmas morning.
It's no secret, I have always wanted twins. I wanted the chaos of one kid feeding off another, messes, arguments, and the whole chi-bang. I wanted cute little matching pairs of everything from car seats, to two high chairs, two cribs, double diaper duty, and a two seater stroller. This seemed glamorous to me. Well, lesson learned. Be careful what I wish for. I got my twins, and I held true to my methods of doing things my own unique way.
I have two very lovable and inseparable kids, both in the same developmental phase of life right now. And with that comes the inability for one kid to function when they are apart from each other.
This past weekend, Scott and I had the chance to spend four days with just MacGregor. This is a first, since our little dude has been born. My short time as a family of three caused me to walk down memory lane, a place I had not ventured to in a very long time. This blog post is will be clearly separated into two parts. This past weekend I revisited the negative place but found my positive place faster than I had in the past.
The thoughts all started on Friday when a friend of mine, picked up Maddox for a girls getaway. Maddox was thrilled.
The other half., not thrilled nearly as so much. My mom always tells me that goodbyes are harder on the person that stayed behind because the one leaving gets to experience new memories, but the person left behind feels the void. So, as you can see below, I am not sure if Copper, Daisy, or MacGregor was feeling the worst about this separation. There are three very sad faces in the window and a few tears shed by MacGregor.
I had already decided that I wanted MacGregor to rock his weekend as an only child so he got to see his very first football game. I am not sure he cared about the game but be was digging the marching band and the homecoming floats!
He also decided that not sharing the tub and toys with his sister was a pretty sweet deal too.
Over the weekend, Scott and I did something we rarely get to do. Sit with our son and a pile of books and read (and read and read) until we have memorized the chorus line of every book.
Maddox doesn't have the attention span to sit and enjoy very long books and when she throws the towel, so does MacGregor. But tonight was a different story. I was able to snuggle on the couch until my heart was warm.
Once he was done listening to me, he picked up his pile of books and went over to Scott for a repeat.
It's such a warm fuzzy feeling, reading books, following fantasy story lines where everything is colorful, perfect, with a happy ending. We don't get to truly enjoy books when Maddox is around because each book that is designated for her has a purpose. What does she need to study, review, and retain this week? Is it a book on colors? Counting? Animals? Shapes? Feelings? You see, every moment of our life is spent with a deep desire to make sure Maddox develops the skills she needs to be successful in this world. And I learned during my time away from her this weekend, just how exhausting this really is for me.
My upcoming book will focus more on this sensitive subject, but you have to know that when Maddox was born, there was a moment in time that I contemplated putting her up for adoption and walking out of that hospital in hopes to return to a normal life.
This past weekend took me down that dark rocky path again, and had me imagining what life would have been like had I acted on thought nearly four years ago. I experienced many highs a lows during Maddox and MacGregor's four day separation.
I was able to embrace MacGregor's humor, compassion, and intelligence. I saw a different child, one independent of his sister. I saw light in him as he didn't have to compete for attention and I wondered what life would have been like had he grown up being the first child? Would he still have the compassion that he does? Would he be happier not having to be a role model ever second of his life? I wondered if I would have ever been content knowing I had given my daughter up for adoption?
There are many times that I look at MacGregor's innocence and ask myself, "What did I do?" This little guy has more responsibility than he knows. Someday he will be burdened with taking care of his ailing parents. Once we are gone, then he needs to care for Maddox. The responsibility one little man carries is huge and unfair.
While Maddox was away, I found myself dreaming a little about how easy life would have been without her. Would I have ever been able to cope knowing my little girl was out there somewhere? I am not sure? I know raising a 'normal' kid is difficult but I want to educate people on what a typical day is like raising a child with special needs. All the books I read mention the love and rewarding feelings you get, but none of the books mention the pure exhaustion you feel getting though each day.
Let;s take climbing at a campground for example. This happened a few weeks ago.
I was over on another play structure with MacGregor when I turned around to witnessed what was happening with Maddox. She had wandered over to the tower and wanted to climb it. Sounds simple enough, right?
Heck, MacGregor, who is two years younger, just made it to the top.
But nothing comes close to being that that simple for Maddox. First, I watch Scott stand next to her and pretend like he has no clue what she wants because we are working on her independently asking for help.
With prompts though speech and sign, she finally gets her point across. "Daddy, help, climb."
Notice the three people in the photos below. It took one to coax to her, one to hold her, and one to model for her. The person modeling has to show where were to step by tapping the step, then moving her foot to the step and showing her where to move her hands, then tap the bar she is supposed to grab, and finally move her hand to that bar.
And repeat because she needed this not only for the first step but for all six steps. And oh my goodness, that was just to get to the top. Then we have to teach her how to get down. Can you imagine, yet how tedious this process is?
But here's where it gets even more exhausting. The motor planning skills and concept of climbing just doesn't kick in after the first try. We have to walk Maddox how to do this for every piece of equipment on the playground. Then, multiply this by every single task of her day. Everything from when to use a spoon to when to use a fork, to how high to tip the cup when drinking, to how to climb into her chair at the table, how to dress her doll, or turn her four wheeler, and so on.
In college as an OT we learned about task analysis which consists of breaking a task into small teachable chunks. Little did I know that this was going to be the story of the rest of my life. Think about it this way. What would you rather eat? A confetti cupcake OR.... Each ingredient in isolation. The eggs. The oil. The powder. See? Doing things in isolation is not so delicious anymore is it?
There are some days that I still want to shout out how much I ENVY those who simply get to peel the paper off that cupcake and enjoy it.
Now, I know there are those who are going to tell me to stop being so intense, stop making every moment teachable, and just enjoy Maddox. I can't begin to tell you how many countless times I have heard this advice. And no offense to anyone that has told me this, but stop making every moment count is simply impossible for me to do.
Let me frame it this way. As a parent, if you came across a teachable situation and had the tools to empower your child and your child was responsive to your feedback, would you seize the opportunity or would you sit back, purposefully hanging on to the tools your child is desiring, and watch them fail?
I absolutely can not sit back and watch Maddox fail.
And that, unfortunately, creates the recipe that creates the intense high strung parent I have become today.
A wise old bird once told me that I must always follow something negative with a positive. So, for those who braved my negative blog this far actually get to hear about the good that came out of this weekend too.
My sweet little girl got to experience things and create memories she never knew existed. She rode tractors, drove rangers, ate at fancy resturarnts, met tons of new friends and smiled bigger than I knew she could smile. You can see in every photo that she loved her girls getaway and that is priceless.
But nothing, absolutely nothing in the world, warms my heart more than witnessing the end of the separation.
And it is this moment where I find my way again, get back on the right path, realizing that I would have never been able to truly cope knowing I had given up this little girl. No matter how much energy I use preparing Maddox for the world, I want her to know that she is worth every single ounce of it.
Welcome home baby girl! We missed you tons!
These are personal realtime reflections that we have opted to share openly and honestly so you and others can learn about our journey.
- Changing the Face of Beauty
- Professional Documentary
- Talk Tools Voice
- Angel Eyes
- My Lucky Number 21
- Life Liberty and the Pursuit of Happiness
- Spirit of the Season
- Promoting Acceptance
- Cutie with Down Syndrome
- Bets Against Her Doctors
- My New Lucky Number
- Talk Tools
- Pop Pop has no need to worry
- On March 21st
- Home Videos
- First Birthday
- Second Birthday
- Fourth Birthday
- 3/21 Down Syndrome Day
- Making of Movie
- Springtime 2012
- First Surgery
- First Vacation
- Fall 2012
- Dolls for Downs
- Summer 2013
- Preschool Intro
- Fall 2014
- Christmas 2014/5th Birthday
- National DS Day 2015
- Easter 2015
- Changing the Face of Beauty
- Princesses 2015
- 4th of July 2015
- Kindergarten Intro 2015
- Photo Shoots
- Medical Updates
- Jamie's Desk
- Guest Book