We are on a Move

Well folks she is off! Well kind of. Abigail will not be winning any races soon, but she is moving. It is exciting to say the least. She can flip herself over, and she loves tummy time now. That in itself is a huge deal. Tummy time has been a struggle for us from the beginning, but lately she will stay on her tummy for an hour at a time. She can pivot around any direction she chooses. And she can push herself backwards like a champ. We are even starting to see her wanting to come forward. Her little legs are trying their hardest to get under her, but they just do not quite know what to do yet. Abigail has never used her legs a day in her life, so the fact that her legs even are attempting to do something is a miracle. I know this does not sound that impressive on paper. I mean we have a two year old who still cannot sit, stand, walk or talk on her own. But if you could have seen her even 6 months ago, the fact that she has this much mobility is amazing.

IMG_8031

Our little leap frog, learning to push herself forward!

To say we are excited would be an understatement. We have been waiting for some mobility for, well two years now. And Abigail loves it! She rolls and scoots and pivots everywhere now. I love just setting her down with her toys and watching her play. Every parent loves when their child reaches milestones. You smile the first time they sit, and cheer when they take their first step. A sense of pride just wells up in your heart. But imagine that your baby never sits on their own even when they are 9 months old. Imagine seeing other babies your child’s age crawling and walking while you are still trying to just get your child to play with a toy for a minute. It is very discouraging. We have waited for this for so long, and to see her with this limited mobility is huge. It is even more rewarding when you have to wait for things to come.

And while we are excited about her moving and growing in strength, we are trying to teach her there is a time to play and a time to sleep. Abigail believes sleep time is play time. She wants to wiggle and roll and play when we lay her in bed. It is cute but when it’s midnight and she is still rolling around it becomes not too cute. I am exhausted. She is exhausted. These late nights are wearing on both of us. We have taken her mattress out of her crib and lay beside her now and literally hold her down to keep her from wiggling. We are trying to teach her that bedtime is bedtime. Last night it worked. She was asleep within 30 minutes as opposed to the 2-3 hours it takes usually. Now we just need to get a bigger mattress and I think she may just learn to put herself to sleep.

IMG_8026

How I found her one morning this week. She was dead asleep, but had managed to turn herself around and still perfectly land on the pillow. How?

If you would have told me six months ago that this girl would be keeping me up until all hours of the night because she would not stop moving I would have just rolled my eyes at your positive craziness. But that craziness is coming true! Just today I was talking with Jordan, and he said, “Maybe this girl will learn to walk after all.” Just maybe we will have a child who will be mobile. We still have a looong ways to go. Right now a snail could beat Abigail in a race, but the fact that she is so motivated and excited to move means she will keep trying. Abigail will keep learning. She will only continue to get stronger, and maybe just maybe we might have a little crawler in our hands.

Now here’s to baby proofing our house. Yikes!

crawling

 

Advertisements

About Me

img_2886-1

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!

Dealing with Doctors

I was a very healthy child growing up. My whole family is. We rarely go to the doctor for anything, and if we do it is our family doctor running his own tiny practice in our tiny town. Needless to say I had no idea about the medical field until Abigail came along. And I still only know one tiny piece of the whole puzzle.

We have seen at least 10 different doctors in different fields for one thing or another the last 2 years. We have seen multiple neurologists because our first one gave up on us, and sent us to one at Children’s. We have been to countless eye doctors who have told us everything under the sun. We have been to the geneticist, an othropedic doctor, and even an eyes, ears and throat doctor once to do a hearing test. I am an expert form filler outer!

IMG_0617

One of the early doctor’s appointments. See how she was looking up all the time!

There are two things that all these doctors have in common though. One is that they have all said in one way or another that Abigail is a puzzle. They say it differently, but it all means the same thing. They have no idea what is wrong with our child, and they have no idea what to do for her. She is a square peg in their round holes. Most children like her also have other ailments, so even though Abigail checks some boxes she does not check the ones they want her to. I am sure doctors are not excited to see us when they look at Abigail’s charts. And secondly, everything they have tested or looked at has come back normal. On paper Abigail looks like a typical two year old. But in real life she is anything but normal.

Right now we have a geneticist appointment in February, which we scheduled back in June because that is how awful it is to try to get appointments made. There are only a handful of pediatric doctors that serve in these areas, so getting into see them is a nightmare. Our neurologist does not quite know what to do so she is simply running all the tests we have already ran over again. Our eye doctor keeps giving us little fixes like patches and glasses to help Abigail’s vision, but our neurologist says it is not her eyes it is the connections in her brain giving us issues. But the eye doctor knows these things will help and if not there is always surgery.

52693184079__04398C6A-4A1E-4E74-9B12-249DDA6E3954

Our little pirate. Just one more thing this poor baby has to go through!

On top of all this and keeping up with all the appointments, we attend three separate therapy sessions each week and go to music class. It is a mess. I want the doctors to talk to each other. I want them to care about Abigail and actually read her chart before they enter the room. I want them to know we have already seen 10 doctors before them and each one tells us something different, yet none of them have given us a single answer as to what is wrong. I want them to see Abigail’s progress instead of a two year old who cannot sit, stand, walk or talk. I see a two year old who has conquered mountains instead of one who needs to be tested and documented like an animal.

Just today we saw a new eye doctor and he was explaining what he saw wrong with Abigail’s eyes. He asked me if I saw her vision as being off any. I simply looked at him and said, “Sir, I see a child who literally looked up at the ceiling her first year of life. She wasn’t interested in anything and today she tracks objects and looks into your eyes. That’s huge! So no, I don’t notice her eyes being a little crooked or shaking here or there occasionally.” His reply, “Well from what I see her eyes do seem to be a little off still.” Oh if he could only know from where we have come!

It has been a long journey, and we are only at the beginning of it. I know so many other parents who would tell me I have it easy or that they have been through worse. And I am thankful we do not have to see cardiologists or other doctors for Abigail’s health. I just pray we find a doctor along our journey who we love and who cares about where we have been and how far this little fighter of mine has come.

Baby Steps of Intentionality

Be intentional!

It has been one of my life mottos for awhile now. I think I picked it up while working on camp staff at summer camp for a couple of years. It applies to a lot in life. Be intentional with your relationships, your work ethic, your faith, your self-care. The list is endless. So often I tend to get into my routines and I begin to just float through life. But by reminding myself to be intentional with every moment, I am reminded that I need to be fully present and aware in everything I do. Floating through life without being intentional with your thoughts and actions quickly leads you to places you never thought you would be. It can lead to discouragement, defeat, purposelessness, doubt, and fear. A little intentionality every day can make your whole outlook on life so different!

If anyone has taught me to be intentional it is my daughter. From day one we could lay Abigail down on her play mat and just leave her. She was not a cuddly baby. She is still the same way today. Even as I type this she is laying beside me just playing with her toys as content as could be. If we are not intentional about playing with her and doing her exercises she would be fine just laying on the ground all day. We have to intentionally take time to do all the things our therapists want us to do and still have fun too. Of course, these things are not a burden and we love playing with Abigail and taking her places, but she is not the one begging to go or running around like a mad woman driving us crazy.

IMG_7929

Abigail pushing herself under the table. She is a mess!

We also have to intentionally teach Abigail everything! Most typical children do not have to be taught how to feed themselves or sit or move. They just somehow magical pick it up and before you know it they are off and into everything. It happens so fast that as a parent you can barely keep up with them. But with Abigail, and many other special needs children, this is not the case. We have to intentionally teach her how to sit. How to hold a spoon correctly. How to get hair out of her own mouth. How to play with certain toys. And most of these things we have been teaching her for over 18 months now and she still cannot do them, much less mastered them.

Just this week our therapist wanted us to start putting toys just barely out of Abigail’s reach so she could start learning to come forward instead of always pushing herself backwards. So I sat down with her and put a toy just out of reach while she was on tummy time. Most children would learn to push forward and grab the toy easily. But Abigail just cannot figure out forward motion. She always pushes backward. So I had to get behind her and tuck her stubborn legs underneath of her and make her propel her body weight forward. She got the toy! So we did the whole process again. The third time I let her try on her own again. Well, she knew what she needed to do, but those pesky legs just do not work the way she wants them to. I shared a video of her on my Facebook wall. Those legs will always be an issue for us! After you have not used a body part for over two years I guess it takes awhile to figure out how to work it again, but maybe one day she will get those legs working.

But for today we are intentionally learning how to crawl. We are learning in baby steps. First strengthening our core, then working on our arms, and then one day we can get those legs fully under us and everything will click. Baby steps are slow. Baby steps are clumsy. Baby steps are unsure. But baby steps do eventually get you where you need to go, and we are making intentional baby steps of progress. I am a proud mama of a little girl who helps me be truly intentional every single day!

Intentional-Quote

Me and My Man

Today marks five years that I have been with this guy. We met five years ago as we were both hired to be resident assistants at our school. The volleyball court brought us together that year, and for some reason this popular, athletic boy picked this weird, dorky nobody to spend his forever with. I still do not understand it to this day, but I am thankful Jordan picked me.

We knew we would be married two months after we started dating. That might seem quick (and it was), but I had had a near death experience in the hospital and Jordan, my boyfriend of about 7 weeks, was there for every scary moment. I truly hated that weekend, but I am thankful because I think it made us both realize how we felt about one another. The next week we made a commitment to one another. We said the ‘L’ word that rhymes with dove, and we never looked back.

On June 18, 2013 Jordan proposed at the first place we had ever known the other existed. Back then we did not even know each other’s names and I was just a weird girl with an even weirder testimony, but it got his attention and he started noticing me. The day he got down on one knee and I said yes, God sent a rainbow in the sky. I truly believe it was a promise from God that He would be with this union. I know that is not what rainbows mean, but it was wonderful either way!

IMG_7960

Seven months later, the day we had been waiting on finally came. Wedding bells were ringing .on February 1, 2014 It had snowed just days before, but Saturday was beautiful! I really just floated through the morning of getting ready, talking with my bridesmaids, and taking pictures. I was nervous as anything as my dad led me down the aisle to meet this man I had already committed my life to months before. We stood in front of our family and friends to share this commitment with them.

After the reception, as we drove to Atlanta to spend the night in our hotel before catching an early plane, I felt awful. The wedding day should have been glorious and one of the best days of my life, but I was just relieved it was done. I felt guilty. We talked as we drove, and as always my man of wisdom reassured me. This day was not for us, it was for others to see what we had already done. In my heart I was already His and he was already mine that day we first talked about getting married. But today we made that commitment public and we celebrated with family and friends, and for that I was thankful because we had so many who cared about us and loved us.

When I committed to marry this man I knew he would be going into ministry. I wanted that for him and me. We were simply waiting for God to call us to a church so we could begin our ministry. We had been helping at a church together the whole time we dated and were engaged, and now we could do it together at our own place. Job opportunity after opportunity was opened to us. We have done countless interviews and attended churches the past few years. Yet, every door as been slammed in our face. Whether it was because we were not the right fit or because we felt like it was not where God was sending us, we have been told no an awful lot. Both of us have degrees in Christian Studies and both of us are called into ministry, yet we have not found that ministry yet. We pray God has a plan for us. We pray the right doors will open and we pray we will be ready and willing whenever that day comes. But in the mean time we are serving where God has us in whatever capacity we can.

Then six months into marriage God blessed us with Abigail. Our journey with her has been long and hard, but it has also been rewarding and joyful. Having a child rocks your marriage no matter what, but having a special needs child rocks it even harder. Most people I have met with special needs children are older or have multiple children and it is their second or third or later babies that have special needs. But we were hit with it from the get go. We knew nothing about kids so for us Abigail is our normal.

IMG_7957

But through it all I have a man that is committed to me. I have a husband who loves me and loves his little girl with all his heart. I have a man who is willing to lead us. He is my strong rock, my wise counselor and my listening ear. I would not be making it today without him. I would have given up a long time ago, but he pulls me through my pity parties and convinces me to keep running the race. I am usually the positive one, but just last night he laid beside me reminding me of all the good in our lives when all I could see was the bad.

We have only known each other for five years, but it feels like forever. Everyday I see little ways that we are becoming one. We are starting to think the same, and know what the other is thinking. We share some similar hobbies now, things I would have never done prior to knowing Jordan. We know what the other one likes and what they do not like. I cannot wait to get to know this man more and more as the years continue. He is my best friend, my love and my other half. I am thankful Jordan asked me to be his. I am thankful I have him. And I will always stand on that commitment we made all those years ago. He is my one and only, my forever and always. I could not imagine doing life without my man right beside me. Thanks for picking me Jordan Lidh!

IMG_7956

When all you have is God

Yesterday we started going to a music class for toddlers in our area. Abigail loves music and our therapist thought this would be a good way for Abigail to have some social interaction with children her age. We showed up and the teacher was terrific! We sat in the circle with about seven other toddlers and their mothers. Well the class got started and in true toddler fashion there was chaos! Kids were running everywhere. Moms were trying to calm screaming boys. And on top of it all there was musical shakers and drums being played. I honestly did not think Abigail was going to make it, but she did. She never jumped or cried. She also did not move a lot, but she sat and watched all of this going on around her. I was so proud of her! Then a mother of a particularly rowdy boy sat beside me and said, “Wow, I wish we could switch kids. She is so calm!” I simply gave her a sympathetic smile and kept singing. How could I tell this perfect stranger that this was huge for my daughter to not be scared to death right now? How could I explain Abigail is not calm, she just cannot move? How could I explain that I wish my daughter was running around and singing on the top of her lungs?  How do I explain that for us to be here with her child is a big step for us? I couldn’t, so I simply smiled and kept trying to keep Abigail calm.

I love my little girl! She is beautiful and wonderful and such a hard worker. She has come so far, and I know she is a fighter. But days like today I wonder why could she not be normal. She has no idea that anything is wrong with her, but she will never be able to play with kids her age. She will always be behind in some way. Having a special needs child is hard and it is lonely. But it is the not knowing for me that drives me crazy. Not knowing what her future holds. The unknown is scary.

No one likes the unknown. No one likes waiting. Whether it is waiting to hear back from a job interview or waiting to hear news about a love one   waiting and not knowing are hard. And we have been in this period of our lives for over two years now. I have asked God why many times. Why us? Why Abigail? I have asked for answers. I struggle with many things, so I have asked for more faith because that is what living in the unknown takes. Tried and true faith.

I do not like faith. I do not like it because to have faith it means you often cannot see. You have to rely on another to guide and lead you. I like to be in charge. I like to be independent and alone. I do not like asking for help and it is hard for me to trust other people. But that is what God requires of us. He requires total obedience and little steps of faith daily. He requires complete surrender and complete trust in Him. But most days I just feel like that dad in the New Testament who cried out to Jesus, “I believe but help me in my unbelief.”

I believe lots of things. I believe God is good. I believe He is love – not that He loves us (He does that too). But that He simply is the embodiment of love itself. I believe God is just, sovereign, merciful and full of grace. I believe He has made One Way for us to receive eternal life through His Son, Jesus. I believe He is holy. I believe God is who the Bible says He is. But I question His ways. I doubt His goodness. I do not understand His purposes. That is where I need faith. When I have a hundred questions that cannot be answered I must have faith in what I do know. And what I do know is that God is the God of gods and King of kings. He has this whole world in His hands and in the end He is the victor. He has defeated sin, death and Hell itself and I will follow Him no matter what. Because while my faith may be small, my God is big!!

Image (6)

Abigail’s Fear

I am not sure what a typical two-year old is afraid of. Maybe the dark or having to eat veggies. But Abigail is not scared of much. She doesn’t understand that falling could hurt her. She doesn’t understand the concepts of sharp or hot or dangerous. Thankfully she cannot really get into anything so that makes our life easier. We always joke about one day having to actually baby proof our house, and hopefully that day will come.

But Abigail’s biggest fear is children. Kids are unpredictable and fast. Abigail does not have time to process their movements so she gets scared. Abigail’s processing time is S-L-O-W. She bumps her head and it takes her a literal minute to process the pain before she starts crying. While adults know to approach slowly and are usually relatively calm, kids are not. Every time a child approaches Abigail she instantly tenses up and starts shaking. If they are brave enough to touch her, she begins to cry. Loud noises or fast movement, like jumping on the couch beside her, can set off the waterworks too. Children are just too much for her.

IMG_7836

All of us…it’s hard to take a picture with three littles. Do you see Abigail’s face?

We spent this last week with my parents and they watch my two nephews during the day. Benjamin will be two in November and Jackson is about to be 6 months. I figured she would go into hysterics with the two boys. The first day my mom brought in the boys while we were eating breakfast. Abigail cried about five times while trying to eat. She is used to quiet because it is often just me and her, and two-year old boys are not quiet. Every time Benjamin brought her a toy or ran by her chair she would start shaking and crying. But lo and behold, after she realized Benjamin wasn’t a complete threat to her life she actually sat on the floor and allowed him to pass toys to her. It was a beautiful sight.

IMG_7886

Benjamin and Abigail passing toys back and forth. Yes, her hand is touching his. It’s a miracle!!

Then later Benjamin thought it would be good to give Abigail some love and that extra kiss was just too much. Abigail went into total meltdown. She even cried when little Jackson’s foot touched her as they laid beside each other.

Children. They are scary sometimes. They are loud. They are crazy! But Abigail just needs her a friend so she can realize children really aren’t too bad. I hate she cannot play with other children. She cannot run or sit. She does not understand playtime. For her playing is just emptying out a toy basket and handing you things she finds. Abigail still does not actually play with her toys. But one day she will have to go to school with these things called children. She will spend hours in a room with them. I pray by the time she starts preschool she will be more accustomed to other children. I know we have a long ways to go to get her to realize children aren’t scary. But the more she is around them the better. So here is to conquering fears, meeting children and having more play dates!!!

**And a quick shout out to Benjamin for playing so well with Abigail, and for loving her despite all her tears! We had a great time with you last week!!

My God Story on Prayer

IMG_7841

This picture was taken on this day exactly three years ago. There isn’t anything too fancy or exciting about it. Before having Abigail my mom and I made it our annual mother/daughter time to go see Beth Moore or Priscilla Shirer at one of their conferences nearby. Side note, we are going to start that tradition again this November and I’m so excited about our little weekend together full of encouragement!! But this was our trip to Warner Robbins, GA to see Priscilla share with a local church there. We knew no one and honestly I have no idea what Priscilla even talked about that weekend.

No, this picture isn’t about the conference itself. It’s about one small moment that happened there that will stick with me forever. During one of the breaks we were just sitting in our chairs talking with each other and a lady who had been sitting a few chairs down from me came over and sat beside me. She asked where we were from and the get to know you questions. But it’s what she said next that amazed me. This lady’s name was Nina. That’s all I know. I don’t remember where she is from, but I do remember her face. She looked right at me and told me that she was going to be praying for Jordan and me. I had just told her a had gotten married in February so I was only 6 months married at this point. She said she just felt the need to come tell me that everything was going to be okay and that no matter what we faced the Lord would be with us because He had some big plans in store for us. She promised to keep Jordan and me in her prayers in the coming days and then she went back to her own seat. We never saw her or talked to her again, and the whole conversation was less than 10 minutes. But Nina did something amazing that day, she was the first to pray for our family of three.

The conference was August 22, 2014 from the doctor’s calculations Abigail was probably conceived around August 18th, but we would not find out I was pregnant until Jordan’s birthday on September 8. So, as this complete stranger was telling me something was going to happen in my life and she would be praying for Jordan and I, neither of us even knew a tiny miracle was already forming inside of me. Nina was the first to pray for my baby whether she knew it or not. She listened to the prompting of God to come talk to a total stranger and God allowed her to be the first person in my life to pray over Abigail.

IMG_7843

Our twenty week sonogram when we found out she was a girl. We instantly knew her name would be Abigail Paige, the apple of our eye.

We have had countless people praying for Abigail and for us, and we are so appreciative for every prayer, kind word and encouragement that has been poured over us. But I am thankful God still speaks to the hearts of His people. I’m thankful Nina listened and came over to pray for us. And today I hope that you and I listen for God’s still, small promptings and that when He reminds us to pray for someone we will take the time to pray. You may have no idea what the person needs or is going through, but if God puts someone on your heart it’s for a reason. I had no idea I was even pregnant then, but God knew that little baby inside me needed all the prayers she could get so three years ago He sent us Nina to pray for us! Our God is good.

IMG_7842
***This made me giggle. The two hashtags I used on Instagram when I posted this picture were ‘Mommie time’ and ‘ready to be filled.’ Maybe I did know something was coming hahaha