Your Calling as Guardian

I have a serious plea for all of you! 

Appreciate your calling as a mother. Appreciate that you are GOOD at it! Accept that it means you may not always be perfect at other things you might think you should do because you were meeting your ultimate call with such a full commitment. 

Didn't get the vacuuming done? Left the dishes in the sink over night? Didn't make it to the gym? In regard to any of those little things nagging you...Ask yourself this: Is THAT your calling? Is THAT your purpose? In comparison to caring for your child who requires a little more care, is it that important? Pretty sure the answer is a resounding NO. You have been called to be a special needs mama! It is a beautiful call and you are good at it! RESPECT yourself for meeting your calling. Allow yourself to be imperfect at the other "stuff" and recognize that it is all it is... just stuff. Please? For me? Thanks, guys!!! xoxo

Guardian Lyrics

Alanis Morisette

You, you who has smiled when you're in pain

You who has soldiered through the profane

They were distracted and shut down

I'll be your keeper for life as your guardian

I'll be your warrior of care your first warden

I'll be your angel on call, I'll be on demand

The greatest honor of all, as your guardian

You, you in the chaos feigning sane

You who has pushed beyond what's humane

I'll be your keeper for life as your guardian

I'll be your warrior of care your first warden

I'll be your angel on call, I'll be on demand

The greatest honor of all, as your guardian 

Now no more smiling mid crestfall

No more managing unmanageables

No more holding still in the hailstorm

Now enter your watchwoman

I'll be your keeper for life as your guardian

I'll be your warrior of care your first warden

I'll be your angel on call, I'll be on demand

The greatest honor of all, as your guardian 

 

Parenting Manifesto

 

It has been quiet around here, hasn't it? I'm sorry about that. It is not for lack of inspiration, ideas, or stories to share. I simply got out of the habit. But I feel a sense of rejuvenation. I believe in kidz. I believe in the relationships I have been seen others build as a result of kidz and other similar sites. Most importantly, I believe in our kidz and US - us special needs parents who live and breathe this life and sometimes feel discouraged and need to hear that someone else has felt that way or an idea or thought someone else has had that lifts you up, even if for a moment.

This 'Wholehearted Parenting Manifesto' by Brene Brown, PhD. is one of those ideas/thoughts for me that helped me see myself and my situation with a little more clarity for a moment. It wasn't written with special needs parenting in mind, but I do think it is applicable in every possible way. Read it and soak up the message.

 

I'm glad I went to Brene Brown's site for one other reason: I found this book of hers, The Gifts of Imperfection, on the sidebar. Read the subtitle: 'Let Go of Who You Think You're Supposed to Be and Embrace Who You are.'

I think that is beautiful. It is one of my favorite parts of the manifesto as well... HAVE self-compassion and embrace your imperfections so you can TEACH your children to do so. Isn't that SO important? For every child and every parent, YES. For a special needs parent to teach their special needs child? Perhaps just that much more important.

So, yeah, I bought  the book based solely on the subtitle.

And on that note, happy Monday, y'all! Make it a great week!!!

It Might Be Hope

We have walked these halls many times and are so thankful for the amazing staff at Primary Children's Medical Center. Mercy River and KSL recently teamed up to make this new video. It was so close to my heart... 

It Might Be Hope
by Mercy River

You do your work the best that you can
you put one foot in front of the other
life comes in waves and makes its demands
you hold on as well as you’re able

You’ve been here for a long long time

Hope has a way of turning its face to you
just when you least expect it
you walk in a room
you look out a window
and something there leaves you breathless
you say to yourself
it’s been a while since I felt this
but it feels like it might be hope

It’s hard to recall what blew out the flame
it’s been dark since you can remember
you talk it all through to find it a name
as days go on by without number

You’ve been here for a long long time

Hope has a way of turning its face to you
just when you least expect it
you walk in a room
you look out a window
and something there leaves you breathless
you say to yourself
it’s been a while since I felt this
but it feels like it might be hope

Awww....

 

Some sweet thoughts to tug at your mama heartstrings....
(Images linked).

 

 

Celebrating Holland ~ I'm Home

By Cathy Anthony 

a follow-up to the original
Welcome to Holland by Emily Perl Kingsley

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned. I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger, the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time. I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

 

7 Lessons

 

This post from the blog Wrestling With an Angel by Greg Lucas touched my heart and made my day. I hope it might be uplifting to you as well....

The tragedy of disability is not disability itself, but the isolation it often creates. This was one of the most important lessons our family had to learn. Sadly, we learned it the hard way. But hard lessons often lead to great insights and over the past few years we have had the wonderful opportunity to gain great wisdom from several families in many different communities.

While there are still many discoveries to be made along this journey, here are at least 7 helpful insights gleaned from the community of disability that have made a powerful difference in our family.  

1. God is both sovereign and good. When you are given a child with a severe disability, it is essential that you see God’s sovereign hand at work in your family. Scripture declares that your child was not an accident or a tragedy, but wonderfully and purposefully knit together from a blueprint of God’s plan that was designed before the foundation of the earth. (Psalm 139:13-17; Ephesians 1:3-12). Disability is not a curse; it is the goodness and grace of God magnified in ways that many typical families never get to experience.

 2. You have been brought into this community for a purpose. I was very slow to realized the purpose and potential of our family’s suffering and hardship until I began sharing our experiences. 2 Corinthians 1:3-7 came alive during that time. Suffering brings us into the intimate presence of God where the sweetest comfort occurs. But we are not comforted to become comfortable; we are comforted to become comforters. Every single episode in our family’s experience with disability was an equipping of God’s grace to be shared with those in desperate need of His comfort.  

3. Disability magnifies our vision for joy in the smallest things. Most families living with disability will testify that some of their greatest victories have been those moments typical families often take for granted. I remember the first time our son used the bathroom in a public restroom (at the age of 17). We had just walked into Walmart and Jake took me by the hand and led me to the men’s room. He pulled his pants down and tried to pee in the toilet. He missed the toilet completely, peeing all over the seat, the floor, the wall and the stall. But he didn’t pee in his pants! We were laughing, clapping, cheering and praising God in a urine covered stall of a Walmart restroom. Most people cannot comprehend the enormous victory of that day, but disability often gives us 20/20 vision to see the things that others seem to miss. This is a wonderful gift.  

4. Community brings much needed perspective As said before, the danger of disability is isolation. The danger of isolation is idolatry (yes, our disabled children can become idols). The blessing of community is perspective. We all need perspective to wake us from the potential of self-pity and self-centeredness.

Just when you think no one on earth could possibly have it more difficult than your family, you meet a single mother with severely autistic twin boys. And just when the single mother thinks she can’t go on, she meets a grandmother trying to raise a 10 year old girl with fetal alcohol syndrome. The grandmother watches as a young couple attempt to nourish their unresponsive child through a feeding tube between seizure episodes. These families are learning something extremely valuable from each other--perspective turns our inward focus to outward community. And within community, disability become ministry.  

5. Outspoken men are often minorities. While this is not always the case, oftentimes when it comes to family leadership, women seem to be the most outspoken advocates for their disabled children. A mother’s tenacity may seem like the most natural response to a child’s disability ("Mama Bear" is not one to be messed with), but when this tenacity stems from a father’s detachment or disillusionment, it can create a lopsided weakness in the family structure. A family living with disability needs a father of certain dependability. This dependability is often best cultivated and strengthened through other masculine men in the community of disability.

6. When marriage takes second place to disability, it ends up in last place. It has often been said, “The best way to love your children is to love your spouse.” While very few couples would admit to neglecting this truth in principle, many neglect it in practice. Good intention, without deliberate application, leads to marital deterioration. The relentless care of a disabled child, added to the care of other typically developing children in the home, added to working overtime to pay medical and therapy bills, added to stress and depression and weariness, leaves little time for marriage maintenance. A marriage that is not properly maintained is like a car leaking motor oil. Sooner or later the cylinders will seize, the engine will blow, and the damage will be beyond repair.

Do whatever it takes to make space in your busy schedule for quality time alone with your spouse. Men, don’t wait for your wife to seek this; lead the way. It could be as detailed as planning respite care and adding a date night every other week, or as simple as ending every evening sitting on the couch laughing (or crying) about the day's events. Aside from daily intimate time with the Lord and His word, this will be the single most important thing you can do to protect your family from becoming the alternative sad statistic.

7. A child with a disabled sibling is anything but typical. I have borrowed (and adopted) the term “typically developing child” from my good friend John Knight. It is clear and accurate language in the proper context. But the more time I spend with siblings in families touched by disability, the more I realize these kids are anything but typical (per se). I have watched in awe as siblings have stepped into difficult situations rivaling the heroic status of soldiers, firefighters and police officers. I have seen awkward, backward teenagers discover their extraordinary gift and calling as compassionate caregivers. And many times when I began to feel pity towards one of these typical siblings I have felt the faint nudge of the Lord scold me with, “Pay attention, I’m doing something incredible in the life of this child as I conform them into the image of my Son.”

No school, public or private, can teach the deep lessons of life like the school of disability. I can say without hesitation that my sons will be better men because of their relationship with their disabled brother. Living with Jake has not only prepared them for the worst of trials, it has equipped them with a profound sensitivity to recognize the intentional hand of God in the smallest, most unsuspecting, details of life.

What an extraordinary gift their brother has been!

These lessons are not even close to being exhaustive. They are ongoing and ever developing all around us. The desperate search and refreshing discovery of each nugget of wisdom brings strength to our family and equips us to be poured out into the lives of others.

 If you are reading this and happen to be new to the community of disability, welcome to the family! It is a wonderful, glorious, breathtaking journey that will open your eyes to the most precious things in life as it draws you closer and closer to the most precious truth for eternity.

Special Needs Moms

You may think us “special moms” have it pretty rough.
We have no choice. We just manage life when things get really tough.
We’ve made it through the days we thought we’d never make it through.
We’ve even impressed our own selves with all that we can do.

We’ve gained patience beyond measure, love we never dreamed of giving.
We worry about the future but know this “special” life’s worth living.
We have bad days and hurt sometimes, but we hold our heads up high.
We feel joy and pride and thankfulness more often than we cry.

For our kids, we aren’t just supermoms. No, we do so much more.
We are cheerleaders, nurses and therapists who don’t walk out the door.
We handle rude remarks and unkind stares with dignity and grace.
Even though the pain they bring cannot be erased.

Therapies and treatment routes are a lot for us to digest.
We don’t know what the future holds but give our kids our best.
None of us can be replaced, so we don’t get many breaks.
It wears us out, but to help our kids, we’ll do whatever it takes.

We are selfless, not by choice, you see. Our kids just have more needs.
We’re not out to change the world, but want to plant some seeds.
We want our kids accepted. That really is our aim.
When we look at them we just see kids. We hope you’ll do the same.

~April Vernon

Try This Fresh Perspective On Your Strengths & Emotions

I went to a women's conference a few weeks ago and I keep thinking about one of the talks. It really resonated with me and I wanted to share it with all my kidz readers. I hesitated to do so, though, but it just keeps nagging at me and I cannot put it off any longer. I hope you can be touched by this like I was. It really helped me accept and understand some of my feelings about a lot of things! I'm just doing a re-cap from my notes about the talk given by Julie Hanks, a clinical social worker/therapist as well as a singer/songwriter. If you've ever wondered where your miracle is and can relate to the lyrics of her song, then the message of her talk is for you!

Overwhelmed and underpaid

Morning comes too soon

Running late and on my plate

A million things to do

Got a baby cryin'

Another trying to find the other shoe

When I open my eyes the dam will break

Their need will flood my room

My mother's sick

And I'm late to pick up kids at school

I need to clean, can't fit in my jeans

The fridge gives no comfort food

You made wine from water

And raised up Jairus' daughter from her bed

Filled the empty fishing nets

And with some loaves and fishes fed a hungry crowd

Make enough of me to go around

Multiply and magnify this tiny little life of mine

Enlarge me and expand this heart and fill it with divine

My heart is cold, nothing grows but thistles and some thorns

They choke the light and shrink the vine, I need to be reborn

You made wine from water

And told a scarlet daughter, 'Sin no more.'

Surrendered to the garden,

Through thorns and nails you pardoned the angry crowd

Make enough of me to go around

 Many women live by several myths:

• Taking care of myself is selfish
• I should always be happy and perpetually sweet
• Acknowledging my strengths is prideful

These things are NOT true! This is truth:

• We have to take care of ourselves first so we can take care of others.  (Think of the oxygen mask in an airplane).
• We need to acknowledge all of our emotions so we can identify the source of those emotions, manage them, and use them for good purposes.
• It is ultimate humility to acknowledge the good of God in yourself. Understanding and owning your divine attributes and divine purposes is one of the highest levels of gratitude. Here's a short clip from Julie Hanks talking about accepting your strengths and improving your confidence:

Start to think of emotions as E-MOTION ---> energy in motion. Emotions are to be used as a guide in our lives and to help us understand our true, authentic self. We don't have to feel better, but get better at feeling and understanding those feelings. Don't suppress your emotions. Instead, ponder on them, then use them to direct your actions and interactions so you can be a source of joy as well as find joy for yourself! What brings you joy is information about your life's mission, so prioritize the things that bring you JOY!

Oftentimes our to-do list doesn't get checked off because we spend time taking care of other things that come up, like talking to a friend who is going through a hard time, doing a craft with our child, or going on a walk because the weather was so nice and it made us happy. Then we beat ourselves up when we look at the unchecked items on our list. Stop that!!! Instead, make a "Ta-Da!" list at the end of each day. This is a list of good things you did, those things that really are most important. Acknowledge your accomplishments, do not dismiss them because you didn't achieve the trivial tasks around the house. See and appreciate the good within yourself and all the good that you do each day!

I hope these concepts touched even one other person as much as they touched me. As I have applied this fresh perspective on my emotions and strengths, I have seen a tremendous difference in my life -- an increase in happiness! And you special needs mamas definitely deserve a little more happiness!

 

The Letters He Would Write

I just had to share this sweet birthday gift to Caleb from his grandmother, Janene Baadsgaard.

Happy Birthday Caleb!
Instead of writing a story for your birthday this year I thought you might want me to help you write a few letters to your mother, father and brothers Joshua, Mathew and Mitchell.
I think if you were able to write a letter to these very special people who love you so much and take such good care of you they might read like this . . .


Dear Mother,

Many years ago you went in for an ultrasound very early in your pregnancy. You found out that I was a boy . . . and you also found out that I was missing my brain. When the medical professionals told you that I had no chance of survival and recommended an abortion - thank you for having the courage to listen to your heart and not your fears. When they told you I would have no quality of life and that I would ruin your family’s quality of life, thank you for choosing to discover what quality of life really means. When they told you I was missing an eye, thank you for choosing to see me as your precious son and not what the doctor called me (not viable - not conpatible with life). When further tests revealed that my entire head had not formed correctly and that my cleft-plate, partially formed nose and multiple missing cranial structures would make eating and breathing in a usual way impossible, thank you for choosing not to despair, but to devote yourself cheerfully and gratefully to my 24-hour care. When the doctors told you to take me home, buy a burial plot and let me die, thank you for choosing to fight for my life and celebrate each day I was in your home.

These past seven years have brought multiple hospitalizations and near death emergencies. We’ve spent a lot of time in hospital, you and me. Thank you for always being there right beside me when each individual breath was painful, labored and exhausting. I’ve heard your every prayer, every heart-felt longing and each exhausted plea to God. And though I’ve never been able to speak a word or raise my arms to embrace you, never doubt how much I love you my precious mother. There is a love deeper than life and broader than time between you and me, an eternal bond that time and circumstance will never break.

I am so grateful that you have chosen to live the past seven years with joy, not sorrow – that my presence was and is enough for you. The world defines us by what we can do. Thank you for choosing to define me by who I am. There will be a day, beyond this life, when I will be able to say all the things I never said, but I have a feeling you already know. When two hearts are knit together, there is often no need for words.

I was born in the winter, a time of waiting before the spring. Always remember that winter’s promise is the hope of spring. There will be a day when the time of waiting is over and all that was lost will be reborn.

I love you mom.

Caleb


Dear Father,

I know you and mom stay up late every night with me so my medication can take effect and also to have some special snuggle time with me. You and Mom usually tuck me into bed around midnight, but it usually isn't long until my alarms start beeping, I need suctioning, a diaper change or more medicine. A few nights a week I have a night nurse who sits with me from 12-6 so you and mom can get some sleep. But on the other nights, it is you and me Dad. You are always there with me when I need you in the night. Those late night hours when it is just you and me mean everything to me. In this life I will never be able play catch, or even speak or hug you. But I know that when fathers love their sons, they love them in the way they need to be loved. With us it is g-tubes, respirators and diapers.

You are always there with me when I need you in the day also. Dad, thank you for going to work every day at BYU so that all of us have everything we need.

Dad, I want you to know about something you may not see. When fathers love their sons like you love me, the powers of heaven open. There are angels around you every night, lifting your arms when you are too tired and keeping you awake when every cell in your body screams for sleep. I am aware of and grateful for every time you turn me, change my diaper, suction me then hug me and kiss me. You never complain, and though I can’t respond when you talk to me, I hear you Dad. I hear every word, spoken or unspoken, every desire, and every prayer to God in my behalf.

I also love the way you tease me like Dad’s do. Like the way you call me One-eye and let me dress up as the one-eyed pirate on Halloween.

I love the way take me everywhere and proudly tell people I am your son. When you come into my room at night I always proudly tell the angels that you are my father.

I love you Dad.

Caleb






Dear Brothers,

Josh, Matty and Mitch - I’m so happy that you are my brothers. You always take time every day to include me and make me an important part of the Moody boy’s story.

I remember when you used to crawl in in crib when I was a baby and sing “I am a child of God” when my heart rate was getting too slow. You always brought me toys and even though I couldn’t play with them the way you do, I imagined myself playing with them and it was still fun.

I love it when you hug and kiss me and tell me about your day. Even though I can’t raise my arms to hug you back, I love the way you lift my arms around your neck and put your cheek next to my lips.

When you talk to me I can’t answer you with my mouth in words, but I hear you listening to me with your heart. When you’re listening that way you can hear me telling you, “I love you Josh.” “I love you Matty.” “I love you Mitchell.” Thank you for helping mom during the day when I need to be turned or suctioned. That is such a nice way to tell me you love me back.

Don’t worry about my eye that is missing. When I was in heaven, I knew the Baadsgaard secret code for telling each other “I love you, you’re wonderful, and you can do it!” It was a wink. I knew that I would never be able to speak to you with words in this life, so I thought of a plan. That is why I chose to come as your brother winking so that you would always know that I love you and believe in you. Thank you for believing in me – believing that I am still your brother inside this body – even though I can’t move, or see or hear or think the way you do. Thank you for believing that even though I’m missing my brain, I’m not missing my heart and soul. Thank you for believing that we will always be one of the Moody boys and we’ll always love each other forever.

I love you Joshua.

I love you Mathew.

I love you Mitchell.

Caleb

Milestone Moxie

Guest post by Cassie of Beyond Measure.

I follow a lot of blogs... I love reading about all of these other kids.... I love reading about their many victories. I pray for them when they are facing surgeries. I care about all of these kids and their entire families. Recently I have noticed that many of the moms out there are struggling. It seems like the moms that have the younger kiddos, under 2 years old, are struggling the most. It is to you that I am writing.

So many of you are hurting because your baby isn't sitting up yet, isn't crawling, won't roll over, can't stand up, and can't walk. You are frustrated. Beat down. Exhausted. Sad.

You feel like you are giving everything you have to help your child reach these milestones, but it's not working. Or maybe you are beating yourself up because you don't think you are doing enough. It's your fault.

I remember those days so well. I cry sometimes when I read your blogs and I hear the pain in your words. That pain is very familiar to me.

I had several friends that had babies right around the same time Caleb was born.

And I can vividly remember how different he was, even as an infant. Caleb struggled to keep his head centered, even when he was laying down, he would just look to the right or the left. He had to work so hard to keep his head straight.



I remember having a play date with some former co-workers and their babies could hold their heads in the center, but Caleb couldn't. Something so simple. My son couldn't do it. I remember leaving that same play date crying. And honestly I eventually stopped going to play dates altogether. I didn't want to be reminded of all that was different about Caleb.

So, getting Caleb to hold his head in the center became my priority.
That was the goal we would work on.

As an infant, Caleb did not move his legs at all. And I mean no movement. They just flopped out to the side like a frog.



I saw how other babies would constantly kick their legs and could even stand up a little when held. Not Caleb. No movement, no feeling, nothing. Just sweet little legs that flopped out to the sides.

That became my priority. I just wanted him to try and use his legs. That was the new goal.

Next was head control. I called Caleb "bobble head" because the boy could not hold up his head. It was just too heavy.



He required so much support. I just wanted him to be able to hold his head up.
That became my priority.

My goal for him.

He was probably 7 months old before he could hold his head steady.

We bought him an excersaucer but he was just too unstable in it so we had to wrap blankets all around him.



His PT had to make him a special seat to go in his high chair so that he would have more support when eating.



It felt like we were constantly having to do things, adapt things, to help Caleb.

Things that every other baby could do with such ease, was such a chore for my son. Everything was a reminder that he was different.

The next priority was rolling over. I worked and worked with him. Desperate for him to just roll over. Begging him too. Bribing him with toys just out of reach so that he would roll over to get them. Nothing. I was convinced that he would never roll over. While other babies his age were sitting up, crawling, and even standing...my baby couldn't even roll over. Caleb was 10 months old when he rolled over for the first time. It was to get a teddy bear that was out of reach. I cried. Rolling became his means of getting around for a long time. He would just roll across the living room to get to what he wanted. He found a way.



And then came the milestone that I thought would absolutely break me. Sitting. Caleb could not do it. I did everything the PT told me to do, I worked with him daily. I prayed and prayed. I asked family to pray. I was desperate for him to sit up. I remember calling my mom and just sobbing because I didn't understand why my one year old son could not sit up on his own. Caleb was about 15 months old before he could sit up well on his own.



With every milestone reached, there was another one that needed to be worked on.

For every mountain he climbed, there was another one waiting.

Each goal became my priority.

Each mountain became my focus.

I made myself a calendar that listed all the things that his PT wanted me to work on. I put the list on the fridge as a reminder of what I was supposed to be doing to help Caleb reach his goals...which were really my goals to begin with. I would highlight the things I worked on for that day. And I would beat myself up endlessly on the days that I didn't get to everything. I felt like a failure when I didn't work with him enough. I carried a heavy burden. Every day. Every time I went to the fridge, I saw that list, the things I was supposed to be doing. A constant reminder that I wasn't doing enough. I wasn't enough.

I think us moms are way to hard on ourselves. I know I am. This idea that we have to do it all, be it all, every single day. I think all moms carry that weight but us moms with special needs kiddos have additional weight to carry. We have to be caregiver, nurse, advocate, physical therapist, chef, maid, chauffeur, teacher, administrative assistant, mom, and wife. And that's just naming a few. We wear a lot of hats.

We have to be experts in UTI's, shunt failure signs, tethered cord symptoms, non-verbal learning disorders, and more. We fight for our kids. We argue with doctors who think they know more about our child than we do. We push therapists to get our child the braces and equipment they need. We deal with stares from strangers.

I hear how tired so many of you are. How sad you are. You love your child so much and your heart is breaking because he/she isn't walking. Or sitting up. Or talking. Or standing. Or whatever. It's always something. There is always something to work on, a goal to achieve, a milestone to reach. A mountain to climb. It's exhausting.

Caleb is 5 1/2 years old now. I've learned over the years that Caleb does things in his own time. He works hard and he does as much as his body will allow him to do. And I've seen him climb many mountains. I've seen him find a way. I've seen him succeed.





I've seen him find joy in mobility.

Something that many people would considered a burden, a hindrance, something that he is "bound" to, means freedom and independence to Caleb.



I've seen him do things we were told he wouldn't be able to do.



I've seen him do things I didn't think he would ever do. Like crawl on his hands and knees. He crawled on his belly until he was 3 1/2 years old. I had all but given up on him ever being able to get his knees up under him. But he did it, he got stronger, he figured it out. In his own time.



I've seen him graduate from HKAFO's to just AFO's.



And I have seen him walk. I have even seen him run.

I've seen him get stronger and stronger. I have seen him use legs that he can't feel.



And I have seen him redefine.

I don't have it all together, I still worry, I still beat myself up on occasion. As Caleb has started school, I have found new things to worry about. New goals to reach. But I'm learning to just appreciate all that he is and all that he has accomplished. My burdens aren't his to carry. He isn't sad, so why should I be? Caleb's a happy kid. He always has been.

Even when he couldn't hold up his head, he was still smiling.

Even when he couldn't sit up on his own, he was having fun rolling all over the place.

It didn't bother him that he crawled on his belly instead of his hands and knees, he still got to where he needed to go. Getting a wheelchair didn't make him sad. He loved it. It changed his life and his personality for the better.

So, to all of you moms out there that are just plain tired. Beat down. Sad. Defeated. Go look at your the precious child God has given you. We have beautiful, strong, resilient, determined kids. Our kids have and will achieve great things. Our kids may never blend in with the crowd, they may always stand out, but they will change this world and the people around them. They already have. There is great joy in that.

Don't let yourself drown in the milestones. Don't let each goal not yet reached consume you. Your little one will climb that mountain, just maybe not as fast as you would like. So, take the time to enjoy the scenic route up the mountain, and anticipate the beauty and the joy that awaits at the top.