The Game of Life

IMG_7225

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.

IMG_7232

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!

IMG_7161

Our happy little blessing!

My Little Tortoise

I love recording memories during this time. Especially when Abigail is changing almost overnight! I have photo albums, an app, journals, and baby books (and this blog of course) that I use to record this time in our lives. It might seem like overkill, and I know if a second child comes along all that might not be possible to keep up with. Hopefully my poor second child will not be forgotten and left out of baby memories, at least I am going to try to do my best when the time comes. It is wonderful to go back and look at what was happening a year or two ago, and see where we are today. This time two years ago I was about 38 weeks pregnant, and ready to meet our little girl. How time flies!!

But as I sat filling out Abigail’s baby book last night in preparation for her second birthday, I came across blanks everywhere in the ‘Firsts’ section of the book. When was the first time your baby sat up? When was the first time your baby crawled? When did your baby take their first steps? When did your baby first hold their sippy cup? All blank. But, oddly it brought a smile to my face. I just wanted to ditch the baby book and create a whole new baby book unique for Abigail. The questions would read more like, ‘What brings a smile to your face when you see Abigail? What is she good at? What are some of Abigail’s skills?’

Abigail has the ability to do so much more now than she ever could! In just the last few weeks our little girl has learned so many new things. She is responding to commands. She can now lift her leg, blow kisses, clap, and lift her head when you ask her. It is exciting to be able to communicate with Abigail and know she is understanding what you are saying. She is also blowing tummy time out of the water! This baby used to hate, and I mean cry when ever you even attempted to place her on her tummy, tummy time. She could tolerate about three minutes and then she was done. She would lay her head down in defeat because she just did not have the strength to do it any longer. Today, she laughs and smiles and plays while on her tummy, and she never complains or lays her head down even after 10 or 15 minutes!!! Her physical therapist is even trying to teach her how to army crawl in hopes of giving her some mobility soon! It gives me hope for her future.

I believe Abigail will be able to talk, roll around and sit some day. It might be tomorrow or it might be 4 years from now but she shows she has the potential to do these things. Her trunk and arms are getting stronger each and every day. She is getting louder as she babbles to us. In the car I feel like sometimes I need earplugs with her constant squealing. She is rolling from side to side and flipping over from her back to her stomach and visa versa when she decides she wants to. I know we have the potential to have a roller soon and that excites me!!! My baby could be independently mobile!! Honestly, I would just love for her to be able to sit on her own. Then she could play so much easier and we could do so much more with her. We just have to get Abigail some abs!

IMG_6309

It is a s-l-o-w process. We have been working on tummy time since day 1. We have been working on prop sitting for almost 18 months. And we have been working on talking and babbling for about a year now. It has been a long two years of waiting to see what exactly this little girl is capable of, and it is amazing to know we still do not know. She has so much potential in her tiny little body. But that is what keeps me going – the potential for change, for improvement, for independence. To imagine Abigail one day being able to communicate with us or being able to move herself around brings tears to my eyes. I know this day might still be a long ways coming. I mean she has been able to prop sit for over a year now and not once shown any desire to even attempt to sit on her own. Did I mention she is also a little stubborn and independent? If anyone asks, she got it from her daddy. Unless Abigail wants to do something, she will not do it. Trying to get that child into her positions to exercise her is a trip. For a baby who seems to have no muscle tone, she is STRONG, and she will fight you with all she has to not be put into a certain position. But this is also good because at least she has muscles to fight with!

Abigail reminds me of the tortoise in the “Tortoise and the Hare” story. All the other toddlers her age are running laps around her right now, literally. But Abigail is not concerned with them. She is marching steadily on in her very, very slow speed. Still gaining ground everyday, but you wonder if she will ever get to the finish line. Right now it does not look like it most days. But I just think of the end of the story. It is the tortoise that wins the race. I do not say that to say that all the hares will lose, but maybe the tortoise had something going for him. He enjoyed every leg of the journey. He was not rushed or hindered by anyone else. He did not try to keep up with his neighbor. He was on his own journey, loving every minute of it and honestly he probably did not think he would even win himself. Maybe, as always, my little tortoise will teach me something yet. This life is not about how fast you get to the end. We will all get there one way or the other. But life is the journey. Am I enjoying each day? Am I living each day to the fullest? Am I doing my best in everything God has called me to? Abigail may be my little tortoise, but maybe that tortoise will be a winner yet!!!

IMG_6365