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!

IMG_2099

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.

IMG_1094 (1)

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!!!

IMG_1587

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

 

Advertisements

My Partner Through it All

My blogs focus a lot around Abigail because let’s face it when you have a cute baby that people care about they want to hear about the latest updates and all the details of her development. I love sharing our story and telling about all the things I am learning and things Abigail is teaching me. But this story would not be complete, it would not even be possible, without someone I rarely talk about. Not because I don’t like that person, but because he isn’t one to draw attention to himself. He is my other half, my hubby and my best friend. Jordan isn’t mentioned a lot because this space is usually reserved for Abigail, but Jordan is who keeps our story running and tonight I thought I would share how Abigail has impacted our marriage.

In a world where the divorce rate is skyrocketing and single parenthood is so common, I am thankful I can share my story. Of course we are no experts at marriage. We only have four very short years under our belts and one kid. There are millions of other couples who could give lots better advice, but I am not here to dish out marriage advice tonight. I am simply here to share our story – our short, crazy, unplanned story.

Jordan and I met in college. If I was sitting down with you over smoothies (I hate coffee, so I’m saying smoothies) I would give way to many details about the beginning of our relationship which mostly include him thinking I was a crazy weirdo (he still thinks that too) and me thinking he was too popular and cool to be with the likes of little old me. But since I’m not sharing our dating life, let’s just say it’s a miracle we ever made it to the girlfriend/boyfriend stage. However we did, and then 6 weeks into dating I nearly died. I might be exaggerating a little, but I did have a freak bleeding episode and had a 2 night stay in the hospital that included 4 blood transfusions, 5 IVs and a surgery so it was pretty intense. But my boyfriend of only 6 weeks stayed with me through it all. Well that brought us pretty close pretty fast. Only 2 weeks after my hospital stay Jordan told me he loved me. He said, “as I watched you laying on that hospital bed the only thing I could think was, ‘my girlfriend is going to die,’ and that thought actually made me sad.” That’s Jordan for you. He is a very romantic and sympathetic man as you can see. But it all worked out for me because I caught me a man and that man became my husband a little over a year after that.

IMG_0113

I tell that whole story to say that maybe God brings medical cases into our lives to wake us up and help us realize something. He used my hospital stay to bring me and Jordan together, and now He is using Abigail and all her disabilities to build our family. Did I want to bleed to death to get a guy to fall in love with me? No! Do I want my daughter to have special needs so our family can be shaped and molded a certain way? Of course not. But God is using Abigail to teach us so much.

I am thankful to have Jordan walking this road with me. We have been through a lot with Abigail as any parent has been with their child. We have heard multiple doctors assessments of her, we have had multiple strangers praise her beauty, we have seen her progress leaps and bounds. We have seen her with needles and wires all about her and in her. We have held each other when we both have had to cry. Jordan keeps me sane when this world feels out of control. When I get all emotional, he keeps me steady and level-headed. He is my solid rock, my listening ear and my loyal companion. While I stay home with Abigail and work with her and deal with all her doctors and therapists, Jordan makes all that possible and he helps me be a better mom.

Having a child will impact your marriage. Children change you life in so many ways. We only had 6 short months of marriage before we found out we were pregnant. I didn’t think I was cut out to be a mom. Neither of us knew what we were doing, but we survived. Thankfully God gave us the easiest baby in the universe so Abigail made it easy. But no parent wants to hear there’s something wrong with their baby, and that’s all we have heard from doctors from 2 months on. There’s an issue with her eyes, there’s an issue with her muscle tone, there’s an issue with this or that. But no one can tell us why those issues are there. But through it all I have had a partner and a best friend. Jordan has experienced it all with me. Our marriage has been forged deeper because of all this. When we have had no one else we have had each other.

Children impact every part of you. They impact relationships and they impact your marriage. Some parents build their lives around their children and not their marriage which is devastating. Some marriages break up when one spouse or the other finds out their child will never be ‘normal’. There are thousands of reasons marriages don’t make it. But when calamity strikes, when you receive that bad news you never want to hear, when the world just seems too much to handle – I couldn’t imagine doing it alone. I am thankful our marriage has survived this so far, and I pray it continues to stand strong. I love living life with my best friend! I love always having a friend to talk to. I love my husband and our little family of three.

IMG_0635

Growing Up Slowly

When you have a child time seems to speed up somehow. In just a few short months Abigail will be three years old. Where has three years gone? I still remember being pregnant with her. I had horrible night sickness (my morning sickness always hit around 3 and stayed all evening). And around week 12 I remember having multiple thoughts that I was going to die at any point, but the only thing that kept me going was that I was growing another life, and her life mattered too much to give up. But here we are almost three years later and I am glad I kept shoving food down my throat after all because having Abigail was worth all those weeks of sickness.

I have no idea how parents of typical children do it though. I mean an average child is sitting by six months and is walking by a year. They start talking and being independent. They get sassy and push the limits and they know where every button of yours is. Your baby grows up in a blink of an eye! You might get a few cuddles here are there but after they are mobile they don’t sit still for long. Again I just don’t know how you do it!

We have been so blessed in a weird way that Abigail has grown up so slowly. I’ve never thought about that before, but it hit me the other day we are getting a small blessing in disguise. Don’t get me wrong I wish everyday my little girl could walk and run and play like every other 2 year old. I cry that she cannot communicate the way she wants to. But even in the bad things and the things that don’t make sense I truly believe you receive little blessings in disguise. Sometimes you don’t see those blessings while you are in the middle of the storm, but they are there. Abigail herself is my blessing. She is an amazing little lady! But the fact that, as a mother, I get to soak in every stage a little longer is amazing!!!

We had a newborn basically for about 10-12 months. For Abigail’s first year of life she really wasn’t aware of her environment. She just loved watching people’s faces. She had barely any head control and her muscle tone was basically none existent. She was exclusively breast fed, which was not my choice but she wouldn’t eat baby food very well so we did what we had to do. That first year was hard!! Abigail did not show a lot of progress. We had no idea what was going on. We had no clue how to take care of a baby, much less a baby that doctor’s kept telling us ‘wasn’t normal.’ The doctors kept telling us things that we didn’t understand or that we didn’t like. We loved our baby and she was the happiest, easiest newborn ever so it was hard for us to see anything ‘wrong’ with her. Around a year old she was still around 5-6 months developmentally, so I got to savor those newborn moments for longer.

IMG_1097

Abigail around 7 months – she was still the sweetest thing you ever saw! But she had no interest in those toys you see. We always tried new things though.

Then her second year of life came and things started to progress. She became more aware of her environment, she started to like food, and she showed true potential physically. We began to learn we didn’t have to listen to everything the doctors said. We began to learn the system and find things that were helpful for us. We had amazing therapists that encouraged me and worked with Abigail diligently. But I was still able to savor those baby moments longer because she was around a 6-9 month old developmentally.

IMG_3521

This picture means the world to me! Abigail was around 15 months in this picture. I left her on the couch to go get ready (crazy huh? but she never moved so it worked for us), and I returned to a smiley baby and an overturned bucket of toys! I snapped a quick picture because I was so excited! This was the first time Abigail had ‘played’ on her own!!!

Today, we have hope like we have never had before. Abigail is doing the best she has ever done. She is eating (and a lot of times helping herself) normal table food, she is moving, she is learning to play in new ways, and she is trying to communicate like never before. We are in such an exciting time! I feel so much more confident in what I am doing. Medically Abigail is healthy and at this point her doctor is simply trying to find the cause of why she is the way she is. But if they never give us an answer I will be okay because she is progressing forward every day.

Abigail is still only around a year old developmentally maybe 18 months in some areas cognitively. But if course she cannot sit or stand yet. But for almost three years I have gotten to savor what most parents only have 1 year to experience. It is like time has slowed in our house. This means we get to see the tiny little steps of progress and we celebrate the tiny victories. This means that sometimes the days are long! I get tired of having to lug her everywhere, because goodness she is getting heavy!! Sometimes it would be so convenient if she could sit because we could do so many more things. Sometimes I have to be creative while we are out, and about, and going to a bathroom with her in a public restroom when I forget the stroller is a trip. But I am savoring!

We may be in the toddler stage for a long time. Honestly, she may never leave it. We have no idea what Abigail’s future holds. I tell people all the time. Abigail has the potential to be a 100% normal 5th grader who you wouldn’t even know went through all this when she was 2. On the other hand she could be living with us forever because she never leaves childhood mentally. We have no idea what her future holds. But right now I know we are hitting the toddler stage hard, and after 2 years of being in baby stage that is tough on this mama. I’m watching Abigail grow and mature everyday. I see my baby growing into a little girl. She is beautiful in every way!! And while she might not be growing up like every other toddler, I appreciate that she is growing slowly. It gives my mama heart time to soak in every moment, every change, and every day with my little sunshine. While I wouldn’t have chosen this life for us, I am blessed to have a little one who is growing up slowly.

About Me

 

IMG_8832

For those who need to see hope in this world.

For those who want encouragement in parenting.

For those who want honesty about living with a child with special needs.

This blog offers a positive view on children with special needs; written for special needs moms, stay at home moms, and those who are interested in my daughter’s progress. If you love inspirational writings, adorable toddler stories, and a heart felt love for children than this is the blog for you! The posts on this site include stories of my daughter’s progress, things I have learned from being her mother, and life with a special needs toddler because she is the inspiration behind all I write. The journey with our daughter started when she was two months old. It has been an almost two year process of tests, therapy and tears and we still are not sure why causes our daughter’s developmentally delay. This blog tells our story of the day-to-day life as we discover how to love each other through the delay.

Welcome to our family! My name is Heather. My husband, Jordan and I were married February 1, 2014 and we had our beautiful daughter, Abigail in May 2015. My husband works hard providing for us at his retail job while I stay at home with our joyful little girl. She keeps me busy between occupational, physical, and speech therapy. We live in Atlanta, Georgia, and love spending time as a family. We are active in our local church and are Christians who love God and have an intimate relationship with Him. My prayer for this blog is that it would inspire you to love others more and encourage you in ways you could never imagine. Life is hard, and we are often dealt cards we were not expecting, but those hard, unexpected things are sometimes the greatest blessings. That is what Abigail is to my husband and I, a great blessing! Abigail gives us encounters everyday that we treasure with all our hearts.

So please, if this blog sounds like a good read, subscribe to my posts! Send me an e-mail with comments or questions, or find me on social media. You can find all the links on the left side of my home page. I want to tell our story and help others with theirs. Thank-you for stopping by, and hopefully we will talk to each other soon!

img_2886-1

Quality of Life

This saying was never part of my vocabulary before having Abigail. Honestly, I never thought about a persons quality of life. It never accrued to me as I lived in a very safe, innocent bubble that people out there sometimes don’t have a very good quality of life. But what is quality of life? Who determines that? According to the all wise Wikipedia quality of life is defined like this,
“Quality of life (QOL) is the general well-being of individuals and societies, outlining negative and positive features of life. It observes life satisfaction, including everything from physical health, family, education, employment, wealth, safety, security, freedom, religious beliefs, finance and the environment.[1] QOL has a wide range of contexts, including the fields of international development, healthcare, politics and employment.” Of course Wikipedia goes on to explain that QOL should not be confused with health related QOL which they define as, “an assessment of how the individual’s well-being may be affected over time by a diseasedisability or disorder.[1][2]
 
So all those big fancy definitions are just ways society measures who is well off and who needs help. Who is rich and who isn’t. Who will have a good life and who won’t. And we have worried about Abigail’s quality of life since we started finding out about all her issues. We have no idea if she will ever leave home and be an independent adult. We have no idea if she will ever walk or sit or talk. According to the world Abigail’s quality of life isn’t that great. But I recently started following this mom on Instagram. Her daughter has Down’s Syndrome, and she wrote something so beautiful as she posted a picture of her precious daughter with the biggest smile plastered on her face. “I hope you see how much quality of life my daughter has. She deserves a good life and so do all the people that don’t fit the world’s definition of perfect.”
 
It made me step back and think about what is quality of life? When I talk about it I think about how Abigail will be able to function on her own as an adult. I’m already thinking twenty years down the road in typical Heather fashion. But what about today? Today, does Abigail have a good quality of life? Abigail isn’t your typical three year old in many aspects. She can’t do a lot of things she should be able to do. But I would argue that she has a great quality of life! 
IMG_2243

Abigail’s two favorite toys right now. Batman from Daddy and her tray from her portable chair. She drags that tray all over the house!

 
Abigail is in great health. She is joyful all the time. She is beyond loved. She has no wants. She has no idea she is developmentally behind. She has a pretty good life. Right now her quality of life is perfect. But so often I forget to live in the moment. I get so caught up with what tomorrow might hold that I forget that right now my girl needs me to just meet her where she is. 
 
So often we let the world define things for us. I listen to the world when they say my daughter won’t have as good as a quality of life than others. I begin to question if we are capable of caring for her. I worry what will happen to her if something were to happen to us. I have worries about what the future holds. What if we have another child like Abigail or even worse off than Abigail. I forget that today we are blessed. We have everything Abigail needs to have an amazing quality of life. I forget that today she needs me just to be her mom and love her. I forget to listen to Truth and not the lies. I forget that God has brought us this far, and He will continue to give us our daily bread. I forget that God is bigger than any diagnosis, any worry or any fear. These fears won’t just magically go away, but they don’t have to conquer me. I pray I always remember that Abigail does have a good quality of life. She is well cared for.  And even if ten years if she isn’t ‘normal’ she still can have a good quality of life. She still has purpose and a reason for the way she is. 
IMG_2292

Mommie and me night when I painted her toes. I love my joyful little girl who is full of life!!!

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!

IMG_8830

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!

IMG_0416

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.

IMG_2158

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!

IMG_8247

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!

IMG_8438

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.

IMG_5855 (1)

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?

Let’s Take a Step Back

We have been with Abigail’s physical therapist, Hallie, for over 18 months now. She loves Abigail and we love her! But last week she said something profound that made me take a step back. Abigail has gotten her ‘yeah’s and ‘nah’s down very well! Today, Hallie was working with her and everything was ‘yeah’ until Hallie asked Abigail to do some hard work. Then Abigail responded with a clear ‘nah.’ She can be a bit sassy at times. Hallie still tried to make her walk with her walker, but Abigail just wanted to pick it up and play with it. Hallie was thinking about how to get Abigail to stop and focus on working when she took a step back.

She told me, “Look how much we have put this girl through these last three months. In just a few short weeks Abigail has received leg braces, a stander, and a wheelchair. She has started horse therapy. She started taking steps. She is communicating more than ever. And that doesn’t even include all the work she is doing for occupational therapy. We are all so excited about her progress that we keep pushing her to do more and more. But Hallie asked, “why don’t we take a step back and let her soak in all she has learned instead of pushing her to do even more?”

IMG_1491

We love seeing Abigail doing new things. We love challenging her and teaching her new tricks. We love stretching her to see what all she is capable of, but Abigail is not capable of saying ‘stop’. She cannot tell us to slow down. So we decided as a team to let Abigail have this month of July to breathe a little. Instead of introducing anything new we will simply work on the skills we are already working on. We want to give Abigail a firm foundation before we continually place new challenges and goals on her. In all our excitement for new and getting to the next step, we forget to slow down and let her catch up.

IMG_2046

She pushes Pink Streak all over the house now. My mom got her the cutest, tiniest gloves ever to use with her chair so here we are practicing with them!

I am so glad Abigail’s therapists can come to me and we can work through these things as a team. I love having a team! Without Hallie’s step back, we would all have missed an important piece of the puzzle. The enjoyment stage. Taking the time to enjoy all the accomplishments and victories Abigail has won these last few weeks. We all forgot for a little bit that it is okay to sit back and rest. It is okay to sit back and take in all that has happened. It is okay to build a strong foundation. It is okay to enjoy the journey. And I am thankful I get to enjoy my daughter’s journey, for it is quite amazing to see where she has come lately!

We got braces simply for her to bear weight through her legs and hips. Next things we knew Abigail is up and taking steps. We got a wheelchair for her to go to school. Little did we know that she would be learning to push it herself the day after we got it. Abigail’s legs and arms are getting so much stronger! She is trying so hard to get on all fours and crawl. She is communicating so much better, and picks up on things instantly. She is so smart, and completely understands what you are saying even if she cannot fully respond. She is sassy, and ‘runs’ away from you now. She thinks she is hilarious and will joke with you. She cries when she does not get her way, and she loves to be the center of attention. In so many ways she is a typical toddler, and I am so glad!

I am excited to build all these skills Abigail has this month. I am excited to have fun with her and just spend time with her. I am ready to enjoy watching my child learn and develop. This is my last month with her before she starts preschool in August. She starts August 1 at a special needs preschool in our local elementary school. She will go every morning and get extra therapy there. I am so excited for her, but so nervous too! So this month we are just going to have fun and enjoy our last month of summer. I cannot wait to see what Abigail is capable of, but I am thankful for times to step back and enjoy the journey!

When Nothing Goes as Planned

Five years ago today I stood on a dock and watched this boy that I had learned to love get down on one knee and ask me to marry him. We should have known that night would have been a reflection of what the rest of our life would be like. Blessed, helping each other, sweet memories, and nothing going as planned. That’s the last few years in a nutshell. When Jordan asked me to be his wife, I did not get butterflies. We just are not the mushy, gushy kind of people. Honestly, about 2 minutes after he put the ring on my finger a beautiful rainbow came out and shone right over the dock. I ran out and leaned over the edge, jumping all about over the rainbow, forgetting all about the huge diamond for a minute. It probably was a very strange engagement if anyone had been there, but it was so us! Why was I so excited about a rainbow? I just felt like God was saying that He would bless us. It was a special sign to me, that me and Jordan would be okay. That we would be will taken care of. That God was looking down on us at that moment and giving us His blessing. And through all we have gone through, God has continued to be with us so I am still thankful for that tiny, beautiful reminder!

IMG_2015

The night he popped the question – June 18, 2013. My parents wanted him to do it on their 25th anniversary, and today they are celebrating their 30th!!!

In these five short years nothing has gone as we once planned. From jobs to children everything we have tried to do has been turned all around. I wish I could go into details, but this just isn’t the place and also I wouldn’t have to space I need to write everything. But today I can look back on these last five years and truly wonder how did we make it? What is our next step? What does God have planned for us? So many questions, and very little answers. But I have faith that God has a bigger plan for our lives, and that my husband is the best leader for our family. With that faith I just take one day at a time and trust!

Jordan and I met at college as we were both resident assistants in our dorms. But what brought us together was the fact that we both wanted to go into ministry. One summer evening we sat at a table at Sonic. Perfect strangers, but with stories to share and those stories made Jordan pay attention to me. That’s where are relationship started.

IMG_2018

Our very first picture together.

We planned to be ministry partners together as he led a youth group. Well after multiple and painful attempts at getting a job we are still without a ministry at a church. Jordan is now facing having to return to school so he can get a degree in education and become a teacher. Another lifelong dream of his. We have no idea why God slammed every door in our face. We have no idea why jobs we tried for were not offered. We have no idea why we were called to ministry just to be taken on this route instead. It is a big unknown still in our life.

Of course, another big unknown is Abigail. In the midst of applying, interviewing and being turned down for countless ministry jobs we had a beautiful little girl. And that little girl has led us on a whole other journey that I have written about countless times. She is another unknown factor in our lives. Abigail comes with a huge question mark. We can’t make a lot of future plans because we simply don’t know the future. Of course, one big unknown is will we have more children. Abigail puts a damper on that decision. If her condition is genetic then we are scared to risk having another child like Abigail or even worse than Abigail. We love Abigail to pieces and we aren’t worried about having another special needs child. We are worried about our children’s quality of life. We feel it isn’t right to bring a child into this world when we know the chances of them never functioning on their own is slim. We would much rather adopt than make a child suffer in away way! It is such a big unknown, and we spend a lot of time talking and praying about it.

We have always been mature for our age, but these experiences over the last five years have aged us decades I feel. So often I feel like we have already known each other for decades instead of just the short six years it has been. When I said ‘yes’ to My Man those five years ago I had no idea our life wold look like this. I had no idea we would be living in the house my husband grew up in with a special needs child, with no ministry job and one of us would be going back to school. What a rollercoaster this journey has been with my man. And it is just beginning. We are only four years into marriage. FOUR! I cannot believe it. But through it all I have had my rock. We have helped each other laugh and cry and talk out everything. I am so thankful I have never had to do any of this alone. I have an amazing partner through it all. We truly are so blessed to have each other, and our baby, and our amazing families to love us and help us in our time of need. I am not sure what tomorrow holds. But five years ago this man asked me to do life with him, and I will always stand on that commitment. We knew within two months of dating each other that we would be married. I knew Jordan was the one I wanted to spend my life with, and I am so honored that he picked me. He put a ring on it, and we have never looked back. So here’s to many years of being thankful to saying ‘yes’ to My Man. Wherever to Lord may lead, at least He led us to each other first!

IMG_2009

Love walking hand in hand with this man!!

All About Daddy

My favorite things about My Man, Jordan. The man I plan to spend the rest of my life with. My baby daddy. My rock. My support. My constant encourager. I could make other lists just about things I love about this man! But in light of Father’s Day I tried to keep them on a more fatherly note. Happy Father’s Day, everyone!!!

1) We found out I was pregnant on Jordan’s birthday. I think he loved that birthday gift. He nearly tackled me in excitement when the stick said I was pregnant. I love that he was so ready and excited to be a dad. He always has wanted kids from day one, and I am so thankful for a man who loved his children even when they were almost nonexistent.

2) “It’s a girl.”

We just looked at each other and smiled when the ultrasound tech said that. I have never seen my husband smile that big either. He wanted a girl, and still wants a houseful of them. It was definitely a great memory! A daddy of girls. He is so good with her, and I hope we have some other girls to complete his all-girls dreams.

IMG_1700 (1)

They took a lot of naps together in those early days!

3) That moment he cried while Abigail was having test done at a day old in the hospital. At a day old Jordan loved that 7 pound baby more than anyone else. It was stunning to me how much he loved her and I knew I would be an amazing dad.

4) All those nights he would stay up late with her while I got some rest. He was the perfect partner in those early days. I had day shift and he had nights, and would come let me nurse and then take her back downstairs again. We loved our system!

IMG_1711

5) Those sweet giggles only Daddy could bring out in Abigail. I posted a video of it on Facebook the other day. You will have to check it out if you haven’t yet. He could always make her laugh! Here’s the link for this video if you want to watch it. 

6) Wrestling time with daddy – Abigail loves it! She loves to crawl on him and ‘beat him up’. She loves to pull his hair and be tickled back. Of course, wrestling for Abigail means trying to desperately pull up on you while hurting you in every way possible. But it still is cute!

7) Abigail loves to tap her little hand against you. Abigail used to not want to hug Jordan. She’s getting better, but for awhile we couldn’t get her to hug him. So we started doing love taps, and it’s still the cutest thing. Abigail will crawl right up beside him and gently tap Jordan’s face or his stomach or his arm and talk to him. It’s how she wakes him up and I love it!

8) I love my twinsies. They looked alike from day 1 and still look alike today. But she has a lot of her daddy in her too. She is stubborn and independent and has the best sense of humor.

IMG_1703

9) These last two are my sentimental thoughts, but the way Jordan fights to support us. We have been through a lot in our four years of marriage with Jordan’s career. We have not had a lot of good ‘luck’ as some would call it. But through it all Jordan has kept working even at jobs that he should never have to work. He has fully supported us for the last two years and I am so thankful he has never quit. He just keeps going for us and I know we are both blessed by his work ethic every day!!

10) Lastly, is the way Jordan loves me. The way parents love their children reflects so much of how the child will grow up. It impacts how the child perceives love and often it impacts their relationships with their future spouses. I am thankful to have a man who loves me. Who sacrifices for us. Who has committed to me his life and love. I pray our marriage stands the tests and trials that come, and that our love can be a model to our children that a good marriage can be had. That love isn’t a feeling. And that we are simply trying to reflect God’s love to them.

img_2886-1

Now What?

A lot of special needs families get one big punch as they hear the diagnosis from a doctor that their child has special needs. Whether it’s in utero or when the child is four years old it is painful. No one wants to hear that their child is ‘messed up.’ No one plans to have a special needs child. Honestly, most people don’t even consider it a possibility. So when that diagnosis comes, when the news is heard, it is often not taken well. They wonder ‘what now?’. What do we do now? How do we do life with a child with so many needs? How do I live with crushed dreams or all this guilt? But I would dare to say life isn’t over with a diagnosis. Yes, life looks different, but there are amazing blessings in store!

But our story is a little different. We didn’t have one of those end all moments. Our news came in slow, sporadic moments at doctors’ offices. It started when Abigail was two months old with her vision. The pictures below are some of my favorites from when she was itty bitty. You can see how her eyes always looked up. That’s where our journey started. Today she is three and we still don’t know a whole lot more than we did then. But her eyes are slowly fixing themselves, and that’s a huge praise! Abigail’s diagnosis as of right now is severe developmental delay. It’s a blanket diagnosis until they can give us a real one. I can tell you a lot of things Abigail doesn’t have, but as to an official diagnosis we have nothing.

 

We were never told that Abigail had special needs. It just happened. It is like a mist that slowly crept up on us. We saw it slowly coming in the distance, and soon we were in it. It didn’t knock us over like a tidal wave. It wasn’t unexpected like a tornado. It simply came – slowly but surely. It took awhile for me to be able to say those words. My child has special needs. I think the first time I said it was in my first blog I wrote almost two years ago. It is painful, but more than that it is unknown. People do not like the unknown. I have had a lot of questions about what is wrong with Abigail or will Abigail ever talk or walk. I have no answers to these questions. We do not know what is causing Abigail to be the way she is. We do not know what her future holds. And that unknown factor makes it so hard to be able to talk about her and her special needs.

IMG_1632

Abigail is a huge question mark. She could be completely normal in five years, or she could live with us when she is forty because she cannot sustain herself. She might never walk or talk, or even sit by herself. Or she could be an Olympic gymnast with an amazing story. We have no idea. We have no idea if it’s genetic or what has caused her to be the way she is. We know she isn’t a normal three-year old. We know she is improving at a snail’s pace. We know that she has special needs and needs a little extra attention. We know she is precious and wonderful and wants to do so many things! We know she brings blessings to our life everyday, and we are so thankful for her.

We have been so blessed on our journey. A lot of families hear the diagnosis and then ask “now what?” We never had to do that. Every time we had to take another step, find a new doctor, a new therapist, or start more paperwork someone was there to guide us. Our pediatrician was the first to help. Looking back I will be forever in debt for their quickness in spotting Abigail’s delays. Without them Abigail would not have received the early intervention that she did and she would be even further behind. We were clueless anything was wrong with her. Her pediatrician led us to start therapy at five months old. They got me connected to the right doctors. And then those doctors and therapists led us to where we are today. I have met fellow special needs moms that have been there and done all this, so they have helped given me advice and contacts to call to answer any and all my questions. We were never alone in this! For each new step someone helped us over the hump. I think that’s what has made this whole process easier on me. I have never felt helpless. I know I am giving Abigail the best care I can. I feel good about where we are and where we are going.

IMG_1910

Our baby girl was cute from the start, but I am so thankful for those who caught her issues early. I was so blind to her needs, but they saw them and helped us in ways I might never know fully!

Yes, our daughter has special needs. But we never had to ask the what now question. We never lost hope in her. We simply take one day at a time. If I start thinking too far in the future it gets overwhelming. But day by day Abigail is improving. She is always trying something new and amazing us all. It doesn’t feel as awkward to say that Abigail has special needs anymore. Her needs don’t define her. Even a diagnosis wouldn’t define her. She has the ability to raise above a diagnosis or a prognosis. So now what? What do we do moving forward. We keep teaching her. We keep helping her strengthen her muscles. We keep loving her. And we keep watching her soar! Abigail’s future is bright, and I am so thankful for our journey and cannot wait to see what tomorrow holds.

 

IMG_1867

Learning to color while in her stander. She has come so far, and I will share more about that in my next blog!