Words Aren’t Necessary

I live with a three-year-old who can say three words. She loves telling people “bye-bye.” And she can answer yes and no questions with a “yeah” or a “nah.” But as far as her vocabulary that’s about all she has. I talk a lot to her during the day. And she ‘talks’ in her own way. Well right now she’s in her screaming phase where she literally screams everything. And telling her to be quiet only makes her louder, so that’s fun. She has a clear “ah” scream and she loves making the “o” noise. See her in the picture below. In the photo shoot she wouldn’t stop saying “o” so we just rolled with it. It’s a new sound, and new sounds are so much fun!

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Even though Abigail cannot communicate in words she is very expressive! I tell people a lot that even though she is not able to communicate verbally, she can definitely communicate in her own way. Her nonverbal communication is on point! Yes, she knows a little bit of sign language but that’s still new too. And of course, she can’t do a lot of signs correctly because her little fingers don’t have the coordination they need to do true ASL signs. But Abigail does not have a poker face. What she thinks and feels shows up in those big blue eyes and little lips. Most of the time she is joyful – a smile spread across her face or a laugh to brighten everyone’s day. But when she is tired her poor eyes get red and blue shadows appear under her eyes. When she is sad or hurt her bottom lip puckers out. It is about the cutest thing ever, but she just looks so pathetic. When she is frustrated or impatient she will holler at you to hurry up. When she is scared she reaches up to cling to your neck and she gets a death grip on you. By looking at her face you can see what she is feeling, or if she likes something or not.

As always, Abigail is my normal. I’m used to toddlers not talking. I’m used to wondering what she is thinking or what she wants to play with or even what she wants to eat. Thankfully Abigail is easy-going and not too picky so she is pretty easy to please. We are trying to teach her how to make decisions by choosing between two different options. Making a choice isn’t her strongest point since her whole life other people have done everything for her. So when people ask me how do I know what she needs or what she wants, my best answer is that I have spent every day for the past three years with this girl and I know her better than anyone. I know how to get her to eat and drink when she pushes things away. I know how to distract her before she gets too angry. I know how she works best and what she likes and doesn’t like. Even though she cannot speak, I feel like I know what she needs. Her smile on her face all the time shows me that she seems to be okay with our system.

I do hope she continues to grow in her vocabulary and one day can speak and choose and be more independent. It would be wonderful to hear her little voice, and hear what she is thinking. To hear her say “mama” or to have her ask me a million questions. As she gets older communication will become harder and much more needed. I never know if she is sick or if something hurts. I will never know if she had a good day at school or what happened that day. I will never know her favorite color or what she wants to play with.

But a friend once commented that maybe Abigail is teaching us that words aren’t necessary to express love. I love that! So often I talk too much, and I’m not even a big talker. I’m a very quiet person and I would much rather be by myself or with a couple of people than a crowd of people any day. But we often use unnecessary words to fill holes and gaps. But precious Abigail doesn’t have words to use, and she fills a room with her presence instantly. People are drawn to her. Strangers are always coming to speak to us while we are out and about. When I am crying over something silly on a television show, Abigail will come right over and crawl into my lap to give me a hug. Those precious hugs make me laugh every time. Abigail hugs hold so much love in them! They are my favorite things!! So often we confuse love with a feeling. But love is so much deeper than what you can feel. I love a little girl who cannot even talk to me for no other reason than because she is mine. She has never said “I love you.” She has never given me a gift. She has never done anything for me. But she expresses her love with hugs, with smiles, and with that quiet, strong connection we share. A connection I could never begin to explain, but it is present and it connects me to my daughter in a very strong way.

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One of my most favorite pictures of us!

I am thankful words aren’t necessary. I am thankful Abigail is teaching me how to listen with more than my ears. She has made me better because of it. I notice so much more because of her. I have learned love is more than words and feelings. And while I can’t wait for Abigail’s next words, I am also ready to grow in our connection and keep learning to communicate with her in our own way. I want to learn all I can about her and what she needs. We are entering into new waters as she continues to grow and mature. It is scary and exciting all in one. She is quickly entering sassy toddlerhood. There will be things that will have to change and so much learning as this new chapter begins. But I know we have made it this far and together we will figure this out too. Because while words aren’t always necessary, community and partnership are very, very necessary! And I have the best little partner in crime any girl could ask for!!!

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We aren’t super, but we make a SUPER team!!!

 

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Respite Time

Finding time for me in the midst of taking care of my little girl. How do I do it? How do i carve time out of my day to nourish my soul. Like many moms I feel guilty, or even selfish, about taking time to do things I want to do. I feel bad ignoring my child to do something fun or relaxing even just for a few minutes. I struggle in this area badly! But so often I crave moments away from Abigail. I need moments to breathe and unwind. So how do I find these moments of respite during our day? I am in no means perfect in this area. I am not supermom, or even close. I struggle with guilt, time management, and laziness on a daily basis. But in an ideal world these are the areas I would focus on for myself everyday. I often do not get to do all these, or even one of them in a given day but I feel like these are vital to find respite and time for me. I tried to keep them general, so these principles can apply to moms across the board. Of course, our life looks different from many others’ so please take these and know this is how I find respite. I hope they help anybody else who struggles in this area.

  • Time in God’s Word

I listed this one first, because without it all other areas in your life suffer. Of course, finding time to read your Bible and pray is tough. I used to spend hours in Bible study while I was in college. Now days I barely get five minutes. Study and reading looks different. It is a matter of what my priorities are. But I know when I am reading something, no matter how much or how little, I feel more encouraged throughout the day. Now days there are many study helps available. There are apps like ‘She Reads Truth’ and ‘First 5.’ There are daily bible reading Bibles that break up the Bible over a year. I wish I had more time in this area the most. I often feel like because I cannot devote the study time I want to it that I just shouldn’t do it, but that is a horrible lie. I am learning that five minutes is better than none. This season is one where I cannot devote hours to Bible reading and prayer, but I can find five minutes to read a chapter here or there. My five minutes happen right before Abigail wakes up. I can hear her shuffling, so I get up and get on my First 5 app, read my devotion for the day and then start my day! Find your five minutes and take time to nourish your soul.

  • Hobbies

What do you enjoy doing? Figure it out and do it. That’s pretty much what my husband tells me every time we talk about hobbies. I have always struggled with hobbies because I have never really had any. I like to read and craft and write. I have lately wanted to get into photography because who does not want to take great pictures of their kids? Jordan tells me to just do things I want to do. He encourages me to follow my dreams. But when do I have time to read a book or learn to take amazing pictures? When do you find time for hobbies? Instead of sleep when the baby sleeps advice, my advice for this one is have fun when the kids are sleeping. Abigail has not taking a nap in about six months, but she is in bed by 8 usually. So from 8-11 is my “fun time”. I usually clean up the house real quickly and then relax and sew or watch Netflix. While Abigail sleeps I make sure I take that time to do things I want to do. Cleaning happens while she is awake normally (I might do a post on our daily schedule soon so you can have an idea of how our day normally goes). I try to enjoy my evenings without her. Find something you like to do and just do it. Find time for your hobbies!

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This was one way I found to encourage my soul. Family pictures. We do not get them a lot, but I loved this evening with my family – to just capture us where we were.

  • Treat Yo’self

This is one of my favorites! And it can be as simple as baking fresh chocolate chip cookies or as extravagant as going to the spa all day. We are on a very tight budget so my treats are small and simple – a small ice cream here or baking cookies at 10 PM and eating them all while they are still warm. Or taking a bath while Jordan watches Abigail after dinner. It could be a new shirt you feel pretty in. It is okay to splurge on yourself every once in a while. A little splurge brings joy to your life!

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Hair cuts and pedicures are always amazing ways to treat yo’self!

  • Friendship

There isn’t much to say about this one because it is self-explanatory. But the Beatles once sang, “I get by with a little help from my friends.” So wise! Spend time with other women and moms. It is so encouraging to be around other women. Find friends that can pour into you and encourage you to be you. I am not great with friendships, but I know they are so needed. You don’t even have to see them a lot. Just having a girl time once a month helps.

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My time with friends this month was going to this sweet wedding and catching up with some old friends! It was so nice to get dressed up and talk to amazing people!!!

  • Romance

I had to include this one because my husband is my best friend, and for me time with him trumps all these other things. But I want to spend time with him. If I haven’t talked to Jordan in a while I feel empty. So he is one of my ways to find time for me. Since Jordan works such weird hours, when he is home my focus is on him. Of course, a lot of these things can happen together. Kill two birds with one stone. As I write this post I am sitting on the couch and Jordan is in the recliner watching The Office. We are giggling away doing our own thing, yet being together. And that being said, I have to add a side note here – LAUGH a little each day!!! It definitely will help. Laugh at your kids. Laugh at yourself. Look up funny videos on YouTube or old videos of your babies. Just laugh and have fun and slow down!

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DATE NIGHTS!!! It’s an amazing uplifter. Have regular date nights. If you need fresh new ideas check out The Dating Divas. Their website has a million ideas from stay at home to group dates to romantic dates to funny dates. I highly recommend following them on social media too!

  • Get Away

I do not mean on vacation. I mean if you want to take a nice long trip away from your family, do it! I would not mind going to the beach for a weekend alone. But since that’s not a realistic thing for many people, I am thinking on a small-scale. For me getting away means window-shopping at the mall or Target, or even a grocery trip by myself. We let grandma have sleepovers once a month with Abigail to give us a night to ourselves (and a morning to sleep in). Those nights without Abigail are so nice. We usually end up eating dinner out and watching a movie or binging on Netflix, but it’s our getaway from Abigail that I need to recharge. I like having a little time away from Abigail each week, even if it is just for an hour here or there. I miss her, but it is good for both of us!

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My mom and I love going to Christian women conferences. This was our latest one we went to, and we are going to another in next month!!

 

  • Rest and Relaxation

This is really just a summary of the above six. But even if at the end of the day you just lie down on the couch and do nothing it is okay. Sometimes adding more things to your day like an outing or participating in your hobby is just more tiring. Do not add more to your day if it’s too much. Just relax, and find time for you. And it is okay to have a lazy day. That’s what I call them. We have had a lot of lazy days this summer because our schedule has been a little off, and my baby is going to preschool in a month. Lazy days mean no plans and no outings. A lot of times they include me watching television or a movie while Abigail plays. I don’t encourage lazy days a lot. But sometimes it’s okay to chill for a day. Relax with your family. The world tells us we must constantly be doing something, but that is such a lie. It’s hard to find a positive verse about busyness in the Bible, but you can easily find verses about rest, peace, and stillness. It is okay to sit, rest, and renew your mind, soul, body and spirit. Find your rest in God first, and the other things will fall into place.

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You are so important and do so much! Take care of yourself, and find joy in the small things!!!

Good not best

This quote just kept replaying over and over as I wrote this. We will never be perfect, so perfection is not my goal. BUT I do want to be the best, and so often I just do the good things to get by. But am I doing my best? I am all about imperfect progress. So my question for myself is how can I be my best for my family and for me?

Carry Me

I carried her inside of me for nine months. I loved being pregnant. Well, after I got past the wanting to die because I was so sick part of it then I loved it. I loved feeling her inside me and watching her wiggle around in there. I really had no problems except for being sick the first trimester. I just remember wondering what Abigail would look like the whole pregnancy. I don’t think either of us expected her to have blonde hair and blue eyes, but I’m so glad she got her daddy’s traits!!

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The day before I was induced. May 7, 2015 – last day pregnant

The first time I had to carry Abigail was hours after she was born. The hospital we had Abigail in transferred you upstairs to a mother/baby room after you finished in the labor and delivery room. They put me in a wheelchair and Jordan handled all our bags. (Our 15 bags we brought because we were so overly prepared – oops!) Then they placed that seven pound little baby in my arms – all swaddled so perfectly as any nurse in that ward can do! I honestly could think nothing else but ‘don’t drop her, don’t drop her’. I was so exhausted from giving birth I didn’t think my arms could hold her much longer. The trip upstairs lasted an eternity with me thinking my ‘hold on to this baby’ mantra the whole way. But we made it. My arms kept her safe the whole way. And now I laugh thinking about how I thought 7 pounds was heavy.
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The awful wheelchair trip. I was so tired!!

Now I still carry Abigail everywhere. I carry her to breakfast and then back upstairs to get dressed. I carry her to and from the car. I carry her so often that I don’t even think about it being odd to have to carry a three year old everywhere you go. It’s amazing how your body adapts to what you need. I am a weakling. I am not scared to admit it because it’s the truth. I have never really worked out a day in my life and I am truly okay if I never do until I die. I love to walk and swim, but the thought of working out sounds awful to me. But I have carried Abigail A LOT in the past three years (and I haven’t even dropped her once – knock on wood.) I have gotten some arm cramps, but my body has slowly adapted to carrying her around. Thankfully she gains weight slowly so my arms have time to adjust to her weight. And I am thankful my little girl is only on the 9th percentile for weight. Could you imagine if she was in the 90th? Maybe God made her small on purpose! That’s what I like to believe at least. Abigail’s weight is different than a normal toddler’s because she doesn’t support herself much at all. She is getting better, but most days she is like carrying around a sack of flour – literally. There’s no help. No give and take. It’s all of me carrying all of her. If you ask her to hold on she will kind of hug your neck for a few seconds before simply just letting go. She is just too trusting. She knows that you won’t drop her. Abigail fully relies on you to do all the work and get her where she needs to go.
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Carrying her in for a doctor’s appointment.

A lot of people say how I’m a good mom or how I always seem to be happy. I guess a lot of people wonder how I can have such a great attitude about having a child with special needs. Maybe people wonder how I can be so confident when we know so little as to why Abigail is the way she is. It’s because, like Abigail, I am also being carried. Full reliance on God has been my motto since college, and it hasn’t failed me yet. But I struggle with it daily! Oh I wish I had a childlike faith. I wish I could be as free and innocent as Abigail. But one thing I do know is that no matter what this life may throw at me, I am being carried. God won’t ever forsake me or make me doubt His goodness. He is Lord and His ways are better than my ways.
I am reminded of that famous poem that used to be so popular, “Footprints in the Sand.” I will post it below for those who need a reminder. But it is very true that in your lowest moments, God is always there. He never promises our lives will be without sorrow, heartbreak and pain. But God promises over and over in the Bible that He would never leave us or forsake us. God taught me a little object lesson once and it has always stuck with me. God always shines brighter when it is darker just as the stars always seem to increase when you get away from the lights. The darkness is often scary and very lonely, but God can show off in the darkness. When you can’t see to guide yourself then it’s time to let God guide you. When you don’t know what step to take, let God lead you. And when you don’t know how you can make it, let God carry you. When you can rely fully on Someone else then all those fears, doubts and worries seem to handle themselves. God won’t ever drop you. He won’t ever let go. Cling to Him, cry to Him, and find comfort in Him as He carries you.
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So glad I get to carry this sweet thing! We love each other so much!!!

Yes, my arms are often full! Between carrying Abigail and her bag and whatever else we may need that day it becomes a juggling act. But I love that my arms are full with a little girl who I can call mine. And God loves when we come to Him too. I know I can carry Abigail better because He has shown me how to be carried. I can love better because He has shown me how to love. And I can be the mother He has called me to be because I find my strength in Him. I am not perfect by any means, and I struggle with these truths daily, but I am learning that dependency on God is good and I am thankful for His never ending presence and His arms of love that carry me onward even when I don’t know what is ahead. At least I am being carried by Someone who will always take me where I need to go.
Footprints in the Sand

“One night I dreamed a dream.
As I was walking along the beach with my Lord.
Across the dark sky flashed scenes from my life.
For each scene, I noticed two sets of footprints in the sand,
One belonging to me and one to my Lord.

After the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that at many times along the path of my life,
especially at the very lowest and saddest times,
there was only one set of footprints.

This really troubled me, so I asked the Lord about it.
“Lord, you said once I decided to follow you,
You’d walk with me all the way.
But I noticed that during the saddest and most troublesome times of my life,
there was only one set of footprints.
I don’t understand why, when I needed You the most, You would leave me.”

He whispered, “My precious child, I love you and will never leave you
Never, ever, during your trials and testings.
When you saw only one set of footprints,
It was then that I carried you.”

The Gift of Motherhood

As Mother’s Day has come and gone this past weekend this quote has been on my mind, “God doesn’t call the equipped. He equips the called.” I have heard this quote more times than I could count! But it applies so well to my motherhood. I was not equipped to be a mother. I am selfish, independent, stubborn, quiet and clueless about children. I did not really want children. I knew we weren’t ready (who is?). But everyday God equips me and gives me the strength the face another day.

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Motherhood is about seeing the joy of your child as they explore this world!

When Abigail was a newborn, I literally just turned into a robot. Feed the baby. Change the baby. Get baby asleep. Eat something myself. I don’t remember a lot about those first few months. On top of all the stress a newborn brings, we were also discovering that our baby wasn’t quite normal. Abigail’s first year of life was quite a blur with all we had going on. I never felt like her mom. I was simply a glorified babysitter. I didn’t feel like a mother. But one thing I did know was that I loved my little girl, and that was enough.

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It’s about letting them explore new things!

It has taken me quite awhile to learn that motherhood itself is a gift. A precious, wonderful gift. I would not trade being a mother for anything. Since we have moved to this area I have become a full-time mom. Abigail is my job. She is my buddy. She is my coworker. She is often the only human I see some days. I love my little girl my than I ever thought possible. She lights up my life. Honestly, she is my life. I don’t do a lot apart from her. If people talk to me, it’s about Abigail. Sometimes I need a little me time here and there. But I treasure my gift of motherhood. I am thankful God have me Abigail. She is perfect in every way. I truly wouldn’t change a thing about her. She teaches me so much, and makes me a better person. My gift may come in a different box than everyone else’s, but she is perfectly and wonderfully made. And I am so thankful to be able to celebrate the gift of motherhood because of her!

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Comforting them in their time of need (and surgeries).

But I still have so much to learn about motherhood. I strive to be the best, but God has been speaking to me and calling me to more. Sunday morning I surrendered fully to His calling of motherhood on my life. Our pastor brought a wonderful word that morning about Hannah. He said something that just spoke volumes to me. “God’s grace is absent at certain times of our lives to bring us to a place of dedication.” My own version would read something like, “Maybe God gives us difficulties (a special needs child) to bring us to a place of full surrender.” But then he made the point that God doesn’t only call us to fully surrender, God also calls us to fully exalt. Even in the hard times – the times it feels like God’s grace is absent. We are called to worship and exalt the King of kings and Lord of lords. So that’s what I want to do. I want to dedicate my motherhood to God. I want to surrender it fully to God. Full reliance has always been my motto since college. And lately I have forgotten it. I have taken on loads of things that aren’t mine. I have forgotten to rely on God. I have forgotten how big of a God we serve. I have forgotten to exalt Him. But on this past Mother’s Day 2018 I pray I can be the mother God has called me to be because I have first surrendered my all to Him. I have first sought His face. I have fully relied on His strength. I have dedicated my life to Him. I love being a mom to this precious little girl, and I just want to be the best mom I could possible be. I can’t do it alone, and I am thankful I do not have to. I am thankful that God has given me this precious life to raise, and I am blessed to be her mama!

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Always watching and copying me – even when I am attempting to do crunches.

You Would Too

Do you remember that oldies song “It’s my Party”? The lyrics go, “It’s my party and I’ll cry if I want to. You would cry to if it happened to you.” I know it’s a weird connection but that’s the song I thought of as I began to write this blog last night. So many people say how I’m a great mom or how Abigail’s blessed to have me. Maybe I am. Maybe she is. There’s a ton of special needs parents and care givers that are amazing!! I’ve met only a small handful and their stories need to be heard by everyone. Special needs parents are some of the most amazing people I’ve found out. But like the song goes, if you had a special needs kid you’d be pretty amazing too.

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Just a few days after we got home from the hospital before we found out about this journey we were about to be on.

Let’s face it. If you’re a parent you are amazing. The responsibility God has given you to raise your child or children is one of the biggest under takings you’ll ever have. You are raising the future in your home right now. It’s huge!! It’s scary!! And often it’s a rollercoaster of emotions. Parenting does not come with rule books and how-to guides. And as soon as you kind of think you have one kid figured out another child comes along who is completely different. Parenting is a privilege and a blessing, but one that should not be taken lightly. So every parent who loves their child unconditionally is amazing in my book!!

But as a special needs parent you just have a few extra responsibilities. You often have a list of doctors to call. Often you have to deal with insurance companies and other financial assistance companies and organizations. You grow to realize there are not a lot of helpful people out there to assist you, so you learn as you go and learn to be assertive and to be your child’s biggest advocate. You are your child’s voice in a medical field, which is often full of people who are just after the next dollar or who think your child isn’t as high a priority. If you had a special needs child you would learn all about the ends and outs of the medical field too.

 

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Then at two months old we got the news about how our perfect little baby may have some vision issues, and our special needs journey began.

A special needs parent often has to be more accommodating and a quick problem solver. A lot of special needs children have physical and social limitations that you have to work around. I know a lot of children with sensory issues who cannot handle loud places, even crowded restaurants. Parents bring noise canceling headphones to help them in those situations. For us, Abigail cannot sit up. For the longest time we carried our own chair for her to sit in when we went out. Now she is stable enough to sit in high chairs at restaurants. But often the hostess will not ask us what we need, so she will get a booster seat for the booth. Abigail cannot sit in a booster seat because she would slide right out. So then I have to go chase down someone to replace the seat with a high chair. It’s a mess. But if your were a special needs parent you would learn to accommodate in a world that is not often accommodating to people with special needs.

Often a special needs parent has to deal with medical issues with their child. Whether it is seizures, a g-tube, or a host of other symptoms, parents have to walk through these scary things with their child. Not to mention the surgeries that often come with these medical issues. We have been blessed not to experience any medical issues with Abigail, but I have talked to many a mother who has and it is always an awful part of their story. One mom even said they feel as if they are going through it with their child. As moms we are often more scared and hurt and worried about our children than they are. But if you were a special needs parent you would do all this too if you knew it was best for your child.

 

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While we don’t have any medical issues, Abigail has done a lot of testing. This was taken at the lab while we waited for her blood to be drawn for about the fourth time. I was over it – she was as happy as ever.

Often as a special needs parent you have to help your child in ways you don’t expect or teach them things that should come naturally. They are much more dependent on you. Special needs children need help doing even simple things like getting dressed and using the bathroom. I still have to feed Abigail all her meals and give her every sip of water or juice she drinks. We aren’t even considering potty training, and diapers may be forever in our future. We still carry Abigail everywhere she goes. I have to teach her how to play with new toys and how her hand can make a fist. But if you were a special needs parent you would do all this too.

Lastly, often our dreams and expectations of our children crumble before our eyes. No one plans to have a child born with autism or Downs or a genetic disorder. Often parents do not know anything is the matter with their child until they are months, if not years old. So by that time you have planned for them to be your older child’s best friend, or a star athletic or a well-known doctor. Every parent dreams about their child’s future. And often as a special needs parent these dreams are broken as diagnoses come along. But that doesn’t mean we don’t dream. It is just that our dreams and goals are very different. My dreams for Abigail has changed dramatically in the last few years. Now I want her to be able to walk, to have accepting friends and amazing teachers and doctors. Things I would just take for granted when I was pregnant with her. But if you were a special needs parent your would adapt your dreams and expectations too.

The fact is that I am not anything special. God didn’t gift me with any extra abilities to care for my daughter. I am not amazing in any way. In fact I mess up a lot. I am lazy and don’t do everything I should. I don’t want to deal with doctors so I don’t call all the time when I should. I want to do my thing sometimes and not spend every waking moment helping Abigail. I am selfish. But I am a mother of a special needs daughter, and I will do anything I can to help her achieve her very best. Yes, we have to do things a little differently, but this is my normal. Abigail is my normal because I have no other typical child to compare her to. I would be scared to be around typical toddlers because I don’t know what they do. Around here we just take one day at a time and enjoy the small victories. I am thankful for my daughter and for being allowed to be her mom. Abigail teaches me more than I ever thought she could. Her joy and determination are contagious!! I am thankful to be on this journey with her and if you were a parent of a special needs child you would be blessed in ways you couldn’t imagine too!!

 

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A Musing Mother

It happened again. We were in the waiting room of our doctor’s office waiting for Abigail’s eyes to dilate so we could go back to see the doctor. Abigail was in my lap eating goldfish and watching all the other children running around. Me and her are good people watchers. One particular father was having issues keeping track of his son. The little boy kept wanting to run away and run straight out the door, so the dad kept running around after him only for the son to escape again. At one point the dad sat down across from us and tried to offer his son his own goldfish, to try to entice him to be still for a minute I am sure. The dad made a passing comment that made me cringe inside. He turned to his son and said, “Why can’t you be calm like that little girl?”

It is not the first time that comment has been made about Abigail. Obviously, she is calmer than a typical two-year-old. I mean she can’t move for goodness sake. And this was not our first rodeo in a crowded doctor’s office full of typical kids. So you can imagine when parents are chasing after running toddlers, and trying to keep their young children occupied in a boring office that seeing my child just sitting in my lap calmly chowing down on her snacks could easily make you jealous. I mean selfishly does not every parent want an Abigail who does not move and get into things and all the normal toddler things that toddlers do? A selfish parent wants an Abigail, but a parent with any bit of love for their child would never wish this on their child.

I wish I could tell that father that he really does not want his son to be calm like Abigail. I wish I had the time to explain our story, but a crowded doctor’s office is not the place. That dad wouldn’t care. If anything we would just get all the pity stares from everyone when I explained why Abigail was sitting in my lap and not running around. We receive enough pity stares already, so we do not need those either. My favorite response from strangers are the ones when they comment on how cute Abigail is, or how her pink glasses are adorable, or how blonde her hair is. I just want to stop and thank those lovely strangers for taking time to talk to us and to see my girl for who she is and not what she can’t do. I know these comments will decrease and the pity stares will increase as Abigail gets bigger and we actually have to use her new adaptive stroller or wheelchair more. Kids in wheelchairs are different and our society does not like different. Right now that only thing that sets Abigail apart from a typical toddler (at least from what a stranger can see) are her glasses and we get so many comments about those!

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Abigail’s newest wheels – the adaptive stroller. We haven’t used it a lot but I think when we do this thing will get some attention.

“Why can’t you be calm like her.” I won’t ever forget that small comment. I would not wish any parent to have a child with special needs. It is a whole different world (that I am only beginning to learn about) that comes with struggles, heartaches, and a dash of hope. While I am thankful for our journey and I could not be more blessed to be a mom of a special needs child, I want more than anything for Abigail to be normal. I want her to be able to be the independent child that she thinks she is. I want her to be able to walk and run and just be a kid. I want her to play pretend with her baby dolls and help my bake a cake. I want her to talk my ear off in the backseat and tell me what a cat says. I want her to learn her ABCs and sing made up songs to me before nap time. Oh these are just some smalls dreams I want. I know she is progressing daily, and for every baby step we just cannot believe it. As long as she is moving forward we know there is hope that one day she could do all these things.

What I would say for any parent of young children out there is that I know the days are long. I know you are tired and maybe even burnt out. I know toddlers are crazy! I know you have amazing days and then you have some horrible days. But please don’t take these days for granted. Be thankful for them being toddlers. Be thankful they are learning how to be little people and how this big world works. Protect them, love them and be patient with them. Soak in every silly song, every kiss for a boo-boo, and the sound of those little feet running towards you. They grow so fast and they need you more than ever right now. And if you happen to know a parent of a special needs child, or just see one out and about please do not offer the pity stare. Just say hey like you would any other mom. Tell them their child is beautiful and get your child to wave at them. You will make that parent’s day I assure you. All a special needs parent wants is the same thing you want – someone to stop and give us a smile and say hey I notice all you’re doing and you’re rocking it!

And to all mom’s that is what I leave you with – you are rocking it! Keep going moms! Drink your coffee, take a shower, do whatever you need to do for you and then love those babies with all your heart. We are in this together, and together we can do this thing called life. So find some mom friends and encourage some mom friends and love some mom friends this week. We need each other!

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Parenting a Special Needs Child

“I have to deal with a lot being a special needs parent, but it’s also apart of parenting a child. Many people have told me that my strength is beyond their comprehension. We are often applauded for our care of him. I do appreciate that people realize we are working hard, but I don’t want to be a martyr because I am caring for my son. Any parent faced with our situation would take the steps they need to make sure their child has the best possible life. When you are put in this position, you have to dig deep and find a way to muster through the struggles. There are many days I feel alone, and frustrated and that I cry. You can absolutely tell me am a great mom, but I’d rather you say it was because he was a happy, polite, and sweet child.”

This is an excerpt from one of Katie Paulson’s latest blog posts, “I’m an Autism Mom: 5 Things you Need to Know about My Journey.” She is a fellow special needs blogger mom, and you can find her here: withoutacrystalball.com I loved this passage because I can so clearly resonate with it. A lot of people tell me what a great mom I am or how patient I am with Abigail. But I am really not. I get frustrated with her just as any mother gets frustrated with their child. She still fights her afternoon naps, and makes big messes. She whines when she doesn’t get her way and she pulls my hair and hurts me sometimes. I am no different than any other mother out there. I just have a special needs child, so this is our normal. You learn to adapt, and work around what your child needs and what he or she can or cannot do.

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This is Abigail ‘napping.’ She has learned to roll over in her crib and now nap time is the new play time.

I am not trying to raise my life as a symbol of victory for all special needs parents. This is just my life, and I enjoy sharing it with others. When Abigail was born we had no idea anything was wrong with her. She gave us our first scare when she was just a few hours old, but the doctors said that it was nothing and they sent us home after two days. We figured she was healthy, and we did not think twice about it. We were just trying to figure out life with a baby, and enjoying our new bundle of joy. We were not prepared for having a special needs baby. But because of her needs slowly unfolding over time, we took each piece of news in slowly. Each time we visited a new doctor or received a new test result we were able to digest slowly what was going on with Abigail. This is our life. I would not choose this for our daughter, but she is perfect the way she is.

I am not a special mother in anyway. I am not a more patient person. I am not more loving or more caring than anyone else. In many ways I am less patient and a lot meaner than I used to be. I simply am helping my daughter live her life to the best of her ability. Any mother who found out she had a special needs child would love their child and do the best they can do. That is all I do. Most days I feel like a big failure. I feel like there was so much more I could have done in those hours we had together. But I do what I can, and I try to do better the day after.

I am simply a mom to a special needs child. I love my life, and my little girl with all my heart. I would not have chosen this life for me or for Abigail, but it is our life. It is nothing extraordinary; it is simply life with a child with severe developmental delays. I appreciate every kind word spoken on our behalf, but I know any parent of a special needs child just wants a friend to lean on. We need a team behind us that is rallying for us and for our child. We need you to love our child no matter how they may look or act in any given situation. We need you to understand that this life is not what we would have chosen, but it is the life we have and we are simply doing what we need to do for our child. We are not anything special, and we surely do not have any more energy, patience, or love than any other person. We just have a child who is a little different than others and who is unwrapping their gifts at a little different speed than others. So please if you see a special needs parent, don’t look at us in pity or in awe. Please, see us for who we are, parents just like you, raising a child to be the best they can be.

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