Her Stubbornness

Stubbornness runs in our family. My grandparents were and still are entrepreneurs, making glass wind chimes now for over 40 years. Jordan’s grandparents are still active and going and his grandfather still works 8-5 at his job at 72 years old. The stubbornness shows itself in our parents as well. And goodness does it show up in us! We can never decide on who is more stubborn between Jordan and me because we are too stubborn to admit who is more stubborn. We are a mess! So then you have two very stubborn people make a baby, and guess what? That baby is as stubborn as both parents put together.

Stubbornness is often seen as a bad thing, and often it is. It prevents you from seeing the other side of the argument.  It keeps you from listening to wise council. It stops you from enjoying things you could otherwise enjoy. But as stubborn as Abigail is, I am very thankful for that quality in her. Sure it is annoying when you try to tell her no and she just keeps doing what she was doing while laughing in your face. Sure I would like her to actually do what I say instead of what Abigail wants to do all the time. And sure we butt heads a lot and I get very annoyed with her. But that stubbornness in her is what makes her a little miracle child.

Let me explain. So our journey all began at Abigail’s two month check up. Everything was great and we had a perfectly healthy little baby in our arms, except the doctor told us he was very concerned with her vision. We knew she had wonky eyes, but we figured all newborns had poor vision, well apparently not this bad. Here are some pictures from Abigail’s first year. You can see how she constantly looked up.

We saw two eye doctors and one neurologist at this point and none of them could explain Abigail’s vision. But by 18 months her eyes had corrected themselves with no help from anyone. Her eyes simply came down by themselves. We worked on some tracking exercises and things like that with her OT, but that’s it. Her eyes still get cross eyed and a little shaky today so that is why Abigail wears her glasses, but compared to how they looked when she was 3 months old her eyes look perfect.

Her stubbornness is vital for Abigail because without her motivation to want to move and play and be little Miss Independent she would not be improving. Yes, her therapists are amazing and I am beyond grateful for each of them. Yes, working with her at home helps. But it is Abigail who wants to pull herself around. It is Abigail who wanted to start feeding herself. We tried for almost two years to make that kid feed herself and she never would hold a scrap of food, and then one day I just laid some goldfish on her tray to feed her and she picked them up and put them in her mouth like she was a feeding expert. Until Abigail wants to do something she does not do it. I know she can get herself around and I try to make her pull herself if I just go in to the next room. But she refuses to move until she wants to.

I truly believe if Abigail has a will she has a way. If she is willing to work and move and play then she does. She has shown that these last few months. Her awareness and wanting to move around has come out of no where and now she scoots and pulls and plays like never before. I still do not know where the motivation to move came from, but I wish I knew! But when the day comes for her to be ready to stand on those wobbly little legs of her I know she will be stubborn enough to figure out what she needs to. I always tell people that for being one of the most dependent toddlers in the world, Abigail is the most independent little thing you will ever meet. I know that spells trouble for Jordan and me as she gets older, but for now I love that she is a little stubborn, independent little blonde headed ball of motivation.

 

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Finding Our Voice

Last night we went out to dinner at a local Mexican restaurant (a family favorite around here). After Abigail finished eating, she played in her highchair and talked and talked. And boy, is that girl getting loud! At one point I went to the restroom which was in the back of the restaurant. I could still hear Abigail as I walked into the restroom, and she was in the very front of the room. I told my mom the other day that Abigail does not understand what an inside voice is. I think she has discovered she can make noises and she loves to hear herself. But we like it too! They are just baby babble noises, but they are cute and happy just like Abigail.

The funny thing about Abigail is that she rarely talks while we are out and about. Most people would think she was shy, but I think it is because it is such a big world out there. There are lots of people to take in and things to process, and her little eyes and brain love to observe and take everything in. There is no time for talking when you have so much to observe. But even though she does not let her little voice ring everywhere, she still flashes that cute little Abigail smile to all who talk to her. She’s got the head tilt/smile down pat!

As she gets comfortable around you Abigail will talk more and more. So I know she feels the safest at home. But the most amazing thing was that this week in Music Class she actually talked some. It was just one quick loud babble. I’m sure no other parent even heard her, but I did. She was down on the floor wiggling around and let out a cute little noise while we were all singing. It made me so happy because it means she is getting more comfortable there even among crazy little toddlers. That’s a BIG deal!! I’m excited to see if she will keep ‘singing’ and talking more as we continue to go every week.

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Playing in Music Class.

Abigail is definitely the loudest at home. After dinner is her crazy time, and she loves to wiggle around and talk to us. I just cannot believe how loud she can be! She is truly finding her voice, and hopefully that voice will turn into sweet little words one day. I want to hear all she has to say and see what she is learning. I want to see her explore her world and watch her express her emotions (yes, even the bad ones). I want to know what she is talking about and what is going through her head. It is funny how what you say and what you talk about shows so much about your personality. I have had lots of time to observe a little girl who has no communication. I can tell you a lot about her and her little joyful personality, but I really don’t know how completely because I can only presume to know what she is thinking. There’s a 50/50 chance I am right or wrong. That’s a scary thing.

So far we don’t have any real words. There’s some ‘ma ma ma ma’s’ and some ‘da da da da’s’ mixed into the babble. Every once in awhile she will say bye at the appropriate time. That’s the cutest with her little backwards wave! But that’s it. But goodness the babble talk is exciting. She wants to talk so bad and she loves to hear herself. But while we wait for words to come we will enjoy the babble. Our speech therapist is helping us learn sign language and giving us ways to help with her speech. When they are this young with no sounds, speech therapy is a lot of simple play. I am so excited for Christmas this year and all the new toys we will get. I think she will love having new things to play with even though I’ll have to teach her how to play. But all these toys will help with her speech and that’s exciting. So here’s to learning new things every day and to trying to get this cutie to talk more and more!!

 

Miracle Glasses…Maybe

The last month we have seen some big things happening with Abigail. She can now roll from her tummy to her back and her back to her tummy with ease. She can pull herself forward with her arms and push backwards, and she’s actually getting faster everyday. She wiggles around in circles and plays with her toys. This weekend she even tried to pull herself up on the furniture. Her progress is amazing! And it has happened over night. I mean a month ago she couldn’t even roll over by herself, and now she is scooting all over the living room and into everything.

Jordan and I were talking the other day about Abigail’s progress. Do you know that in a year or two she could be walking? She could be caught up physically. Watching her progress these last few weeks has given us hope that maybe she will be able to catch up eventually. We are working on getting her some kind of equipment piece to help strengthen her legs. Her arms are so strong now and we just have to get those legs to catch up. Jordan told her she needs to stop skipping leg day.

We still have a long ways to go. She still isn’t sitting on her own. Her legs don’t do much at all so she isn’t crawling or standing or walking of course. But these things have a chance of coming along as she continues to learn what her body can do and as she continues to get stronger. She’s growing mentally too. I know even if she started walking tomorrow she still would be very far behind. Her speech is coming along. She loves to babble and ‘talk’ to us. But she still cannot communicate at all. Compared to a normal 2.5 year old we still have a long ways to go. But this journey is taking a turn for the better and it is exciting to have a front row seat to Abigail’s growth.

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So why is she progressing so fast now? Why has it taken over two years for her to just begin to want to be active and explore? Is it the glasses? Because her vision is straightening out is it helping her to focus and move better? Weirdly enough about the time we got our glasses and started patching her weaker eye is the time she started to massively improve. It could be just a coincidence but who knows? Is it because her arms have been getting stronger so now she can move? Did something just click in her brain and now she wants to discover? I have no idea. It probably is a combo of everything plus therapy. But for whatever reason she is improving and I love it!

We may never find out why Abigail is the way she is. She might be the world’s most average and normal eleven year old and we look back and tell her she was the weirdest baby. But today she is an amazing baby with a willpower and drive like non other. And I am a proud mama. Abigail encourages me to not give up daily. I’m a quitter at heart. If something is not easy or I’m not good at it I would rather just quit. But Abigail’s strength and motivation to keep trying inspire me to work harder and try things that are hard. Today I am thankful for progress. Even slow, baby steps of progress are amazing to watch! I am thankful Abigail is not a quitter, and that she wants to learn and grow too. And I am thankful for those little pink glasses that might or might not be helping her, but they are the cutest things!

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How Abigail Learns

We began occupational and physical therapy when Abigail was just 5 months old. At that point we had no idea what we were in for. We had no idea how our journey would proceed. We simply knew we had a little baby girl who the doctors were telling us was way behind in muscle tone. Abigail was our normal and still is. We had no idea a five month old shouldn’t be doing these things. Thankfully we had some great therapists who helped us learn what we should be doing with Abigail to help strengthen her little muscles.

Abigail has always been progressing forward but at the slowest rate you could ever imagine. The last time we went to see our neurologist she asked how Abigail had been doing. I was so excited to tell her about all of Abigail’s progress in the months we hadn’t seen her. But putting it in words seemed so dismal. “Well she can kinda roll over now and she is making more noises.” It just didn’t sound that impressive, but if she could just live with Abigail for a few days you can see her huge strides of improvement. But to strangers Abigail is still a two year old who can’t sit, stand, walk or talk.

So how does Abigail learn? How does she get stronger? Repetition. Repetition. Repetition. We have been doing the same things with her from the beginning it feels like. Sometimes things click right away. It only took her a couple of times to learn how to fist bump and wave bye-bye. Teaching her a new sign for sign language usually only takes a few times as well. Now she does not correlate that the eat sign means she is hungry, but if you ask her if she wants to eat she does the right sign so we are getting there. But feeding herself has taken 18 months. We have tried everything, and then one day out of the blue last week she just picked up her goldfish and ate it perfectly by herself. I am not sure why she catches on to some things instantly and other things she still does not get even though we have been working with her for months.

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Either way, we have to be intentional with Abigail. And slow. You cannot ask Abigail to do something and then walk away because she did not do it. Chances are she will do it as you turn your back. Her processing time is slow. So it takes her a minute to wave bye when you tell her to. You just have to give her a chance to listen and process what you said. I like this about Abigail because it has taught me slow down. I am a rush, rush, rush kind of person. Having Abigail has taught me to pause now and then.

Abigail is a smart cookie. I think my husband put it best. Abigail is more and less than meets the eye. Let me explain. When a stranger first looks at Abigail he or she probably thinks she is a normal child. Then I tell them that she has special needs and cannot sit, walk, talk, etc. So then Abigail becomes a special needs child who cannot do anything in their minds. But she is so much more than her disabilities. Sure she cannot sit up on her own, but if you ask her to dance, point, find her belly, or laugh she can follow your instructions perfectly. She understands what people around her are saying, and I swear she can sense people’s emotions. She definitely knows when Mama is leaving and her physical therapists has told me multiple times what an amazing little sense of humor she has. Abigail is pretty fun to get to know and everyone who has spent more than 10 minutes with her just loves her!

Abigail’s processing time may be slower than others, she may not be able to physically compete with another toddler her age, and she cannot communicate with words, but everyday she is learning and growing in her own way. At five months old Abigail barely even cared about the environment around her. She could care less about toys or food or anything really. But to see where she is today, even from where she was a year ago is amazing. She loves her toys and gets so excited when her therapists brings out her big bag of them now. She is ‘talking’ up a storm and is wiggling everywhere. Her head circumference is in the 94 percent tile (her weight is only in the 10th) and we always joke about her huge head. But maybe it is just holding all those smart brains up there. I love watching her learn and I cannot wait to teach her more!

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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.

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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.

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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!

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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.

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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!

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The Game of Life

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Our family Cribbage board

We are a card playing family, and Cribbage has always been a favorite. I grew up playing Cribbage and now when I stay over at my parents’ house for a long weekend we always try to get a game or two in. If you do not know how to play Cribbage that’s okay. This post is not about that. Basically, all you need to understand is that those pegs pictured are what you count with. You obviously want to have the most points, and have your pegs in the lead. A lot of times though you get dealt not so great hands and your poor pegs lag further and further behind everyone else’s. In Cribbage you can get so far behind the winner you get skunked. It’s a very technical term. Basically, if you lose you don’t want to lose so bad you get skunked. See, it’s really a rather fun family game! And two fun facts about this particular Cribbage board: 1.) my brother made this by hand (pegs and all) for my mom’s birthday one year, so it’s a very special board. 2.) See those words my mom wrote on the board, “Heater’s Curve.” It is supposed to be my name not Heater. This is the particular spot on the board I always began to lose, no matter how far I was in the lead. It became the family joke that when I was approaching this curve they knew I was going to start losing, so Mom nicknamed it Heather’s Curve, or at least she thought she did. Yes, my own mother misspelled my name, so now it’s affectionately called, “Heater’s Curve.”

The game of Cribbage, and many games in fact, is just like life. Sometimes you get dealt great hands that make you feel good and help you win, and sometimes you get awful hands that do not move you ahead at all. You feel like you are stuck in quicksand of life, and you will never catch up to the people ahead of you. This is often how being a special needs parent feels like. Every time your child does something good or conquers a task you realize that your friend’s baby did that six months or two years ago. As other children progress around you, you feel as if you are chugging as you hard as can and still are not able to gain any ground.

I am so excited, and so is everyone else because Abigail loves to give hugs now! It is precious and makes you feel extra loved when she wraps those little arms so tightly around your neck. She is truly the best hugger! She is beginning to eat better and better and even attempting to eat on her own in small ways. She is rolling from side to side and trying to sit up and move so much more. There are signs of progress everywhere. But right when we are gaining so much progress, I took her to the eye doctor because we have seen some small concerns with her eyes twitching, not focusing, and going cross-eyed. Well it is a good thing I took her because her muscles in her eyes are very weak. While the eye itself is as healthy as can be, the muscles are not controlling her eyes properly. So, soon Abigail will begin wearing glasses to try to strengthen those muscles. She has four months in glasses, and then if there is no progress the next step is surgery.

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When we feel like we are gaining ground with negative genetic testing and physical progress, we are hit with this reality. Our little girl may be faced with eye surgery at the end of the year. Oh, we are praying these glasses are miracle glasses!! But in our two-year journey we have seen this over and over. We gain some ground and are reassured everything will be okay and we will overcome anything, and then we are told she has very low muscle tone, it might be a genetic problem, there are still no answers, or that surgery may be the only solution. The life of a special needs parent is one big rollercoaster of emotion, filled with excitement, worry, and the unknown.

Through it all though I am thankful that life is not just one big game. We are not pawns being pushed around a board. Through it all God has a purpose for each and every person. He knows what we are going through, and He has a beautiful plan unfolding everyday. Is it frustrating? YES. Is it lonely? YES. Is it what I would choose? No. But it is still a beautiful plan, and I trust that with all my heart. In the end, I am thankful for this plan, this path of life God has set us on. It is making me a better person, a more trusting person. The last two years has changed me, and giving me a whole new perspective on life. Do I want this for my little girl? Never in a million years, but this is the life God has blessed us with and we will take each day and be thankful for the gift it is. We have so much to be thankful for, and I will not ever forget that!

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Our happy little blessing!