My Hope Restored – Part 2

A year ago a blogged a beautiful story about how God renews us; how He gives us grace and restores our hope. You can read it here. A lot of times Abigail’s situation seems hopeless. Even as I write this we have given up on our doctors. The geneticist just said they could no longer help us, and our neurologist has come to a dead end we believe. We are seeking other doctors to go to, but for now no one seems to know how to help Abigail. It is frustrating, confusion and, as a parent, it makes you feel helpless because you cannot do anything for your child. But a year ago I wrote this, “But these last few months I have come to realize that if I do not think positively about Abigail’s situation, and give her the encouragement she needs than who will? God has shown me that being my daughter’s biggest cheerleader is my calling for now.”

What an encouragement for my soul today! That is why I have come to love blogging because it is like keeping journals. You can always look back to see God’s hand working in your life. So many other special needs parents who are much wiser than me have told me that I am my child’s best (and sometimes only) advocate. I have to fight for her because so often the medical field and even the school systems do not care for your child.

These last few nights that I have been putting Abigail to bed I have been whispering her worth to her. It makes me cry every time. But even if she does not get it I want my daughter to know she is smart. She is worthy. She is beautiful. I want her to know we are proud of her. I want her to keep fighting and stay determined. I want her to know she can do great things. I want her to know as much as mommy and daddy love her there is Someone who loves her even more. I want her to know that God has a plan for her, and she is capable of bringing Him glory even now.

These moments with her mean so much to me. I love being able to stay home with Abigail and have fun with her and take care of her. I am often way too protective and stuck in my ways, but I would not trade these precious days with anything. My little girl has such potential to do great things. My dreams for her may have changed, but my hope in her is higher than ever! Everyday I see her improve and grow stronger. She is understanding so much now and she has the potential to do incredible things in her future.

So even in the face of all we have against us, my hope is being renewed. I am cheering for my daughter and I want her to know she has so many other cheerleaders too! So many of you reading this blog have encouraged me in ways you won’t even know. I just wanted to say thank you for following along with us in our journey. Thank you for all your encouraging comments. Thank you for loving my little girl from near and far. Thank you for being there! And watch out because I truly believe there are some exciting new things about to happen in this little girl’s life!

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Seeds of Hope

Gardening is not my thing. I was not born with a green thumb. I have dreams of having plants in my home, but I kill everything. I always wanted a venus fly trap when I was a teenager, so I got one for my birthday one year. I fed it a lady bug and killed it. I did grow some rosemary plants this summer. They were looking great and then I knocked the pots off the windowsill promptly killing those. I do have one plant by my front door that has miraculously not died for six months. I don’t even know what it is, but it’s apparently my perfect plant. I water it when I think about it and do nothing else with it and it’s still growing so I really like it whatever it is.

While gardening is not my thing, it has always been a hopeful dream for me to become a gardener. My dad has always planted a vegetable garden every summer, and I think it’s amazing that such a tiny little seed can grow juicy red tomatoes, and the perfect okra. Plants are amazing things! They start as a tiny seed and with a little bit of water, sunlight, and care they can grow to be ancient oak trees, or food to nourish households, or flowers to add beauty to tables. I know there’s a lot that goes into growing plants that I don’t understand, but the whole process amazes me!

Last year was a season of winter in our household. We had just transitioned to a new home and a new city. We were looking for jobs, a new church, and doctors for Abigail. We were figuring out a new routine and adjusting to leaving behind old friends and finding new ones. It was very quiet and uneventful as the winter season usually is. We were ready for a new season to be upon us, and life to begin again. Jordan would often remind me that ‘this is just a season, Heather.’ Well sometimes a few months can feel very long when you are waiting for things to happen.

But as the new year approached and I began thinking of new goals and dreams I had for 2018, hope came too. Right now this hope is just in tiny little seeds. We have not seen anything mature yet, but God has blessed us with these seeds of hope and I think spring is soon coming for our family. These are some seeds of hope that are being planted in our lives right now:

1.) Jordan thinks he has found a way to begin a teaching career, something he has been wanting for a long time now. He will have to work and study really hard the next few months to accomplish his goals, but if anyone can do it he can! If all works out perfectly he could quit both his retail jobs, be home more, and he would be happier with his career. We are praying big time for the next couple of months to go well.

2.) We had a meeting about Abigail going to preschool in the Fall. I was very hesitant about it before going in, but the ladies at the meeting reassured me about all my doubts and fears, and now I am excited about her starting school. She would have double the therapy time, and be able to socialize with children her age. I just think huge improvements could happen! I’ll be a basket case when she leaves me (it will only be four days a week and half days at that), but I know it will be the best for us both.

3.) We also just met with an equipment guy today, and we are going to apply to get Abigail a stander and a wheelchair she could push herself around in.

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This is the stander will we be getting!

I am so excited to get her these pieces because it will help her so much! Our physical therapist is also considering getting her into leg braces to work on strengthening her legs. There will be a lot of changes for Abigail, but much needed changes to try to help her walk!!!

4.) Abigail has been pulling up on everything lately! Oh, she wants to stand up so bad so I know the fight is in her to gain mobility. She is a crawling machine. Her poor elbows stay carpet burned now because she pulls around so much. I invite her to follow me from room to room instead of carrying her, and she is so good about listening and coming with me. She is also becoming a better communicator, and can tell you when she is done or when she wants something. Her speech is even coming along in its own way. Just so many improvements happening almost over night!

5.) There are so many areas I want to help in and there are so many needs I see. I keep seeing little doors cracking open in front of me. I am praying the right opportunity comes along and that I can see it when it comes. Through things at church and talking to my friends and other moms at therapy my eyes are opened to things that need to happen. I am ready to do more, and I now when the time comes I will be ready to respond.

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We are both so thankful for little seeds of hope (and some warmer weather)!!

So all these little seeds are being planted, and I pray that they take root and grow into huge blessings. Waiting for a garden to grow is hard, but while you are waiting for the fruit to be produced there are so many things you have to do in between. I know we will be busy watering and nurturing these seeds to grow into beautiful blessings this year. I only pray we are good stewards of the things God is blessing us with, and that the fruit will produce new seeds that we can share with others.

I have learned so much in this season of winter that I know will help as the spring time approaches. God has taught me a lot about trials, temptations, doubts, patience, love, self-control, relationships, and so much more. I am thankful that God gives you quieter seasons of life to allow you to learn the things you need to learn before the busier seasons come. I feel prepared and ready for what the days ahead may hold. I know that I will never be done learning and I still have a lot to work on personally, but I also know that I am not alone. And when then seeds begin to take root and grow you better bet that I will be admiring my life with awe and with a very thankful heart!

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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!

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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!!!

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My Hope Restored

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My first Mother’s Day we were leaving the hospital! Abigail was two days old

It seems like a lifetime ago that we sat in our pediatrician’s office as he told us our baby’s vision was not normal. I really do not remember it too well because at the time I was not that worried about it. I knew nothing about babies, so what did it matter that our two month old daughter was not tracking or focusing? She would grow out of it (and she has). He referred us to a pediatric ophthalmologist in Atlanta, and a few weeks later we had our appointment. The first year of Abigail’s life was like this. The doctor would tell us something wrong with Abigail and then refer us to yet another doctor. Every doctor we went to was confused or puzzled by her condition. Abigail does not fit any textbook they have seen so far, so we have done a lot of testing to try to find answers.

I used to worry and dread about Abigail’s future a lot. In the beginning we were worried her brain was not functioning or developing right. We were worried she would not grow physically, or that she would be blind and disabled. A lot of these fears have been proven wrong. We have learned we have a very healthy baby with a very functioning brain and other vital organs. She is tiny for being 22 months, but she is still growing every day! And her vision is no longer a worry; it has come a long, long ways!!

In the last couple of months since becoming a full stay at home mom I have had a heart change towards Abigail’s disabilities. They are no longer hindrances and burdens. I no longer worry about them in the way I used to. Yes, do I wish my daughter would sit on her own? Every day! We could do so much more with her if she could just sit on the floor and play. Do I wish she could communicate with us better? Yes, to know what she needed or wanted to be so much easier. Do I still worry about her ever being able to walk or play with children her age? Of course, but if you could see the improvement that Abigail has made in the past few months you would share my joy that there is still hope.

That is what has changed the most in the last few months. I have hope! I have hope that my child can learn to do new things every day if she wanted to. She changes and gets stronger everyday, why could she not be rolling over and eventually sitting in the next year? I have hope that her future looks good no matter what it holds because we have such a huge support system behind us. I have hope that just maybe I can do this special needs parenting thing and be the voice in the world my daughter needs. I have hope that Abigail will continue to grow and strengthen and amaze us all with her uniqueness that God has made her with.

At times, I have struggled with finding this hope. I have cried over Abigail’s disabilities as I watch others little babies crawling, walking, and talking. But these last few months I have come to realize that if I do not think positively about Abigail’s situation, and give her the encouragement she needs then who will? I have prayed and wrestled about my feelings, and God has graciously given me grace as always when I do not deserve it. He has shown me that being my daughter’s biggest cheerleader is my calling for now. Jordan has encouraged me to keep my head up and not to give up on my hopes and dreams for Abigail. I am thankful for this small but significant heart change. It is so easy to lose our hope and our faith when obstacles surround us on every side. But God gives us the strength to keep fighting when we do not think we can. He is beside us to lead us and to help us see that there are bigger things to fight for. My daughter is one of those things, so my faith rests in God as He sees to Abigail’s daily development. May my hope always rest in Him, and not how I feel or what the world tells me.