Loving Through the Delay

When I wrote the first post for this blog I simply wanted to share our story. A lot of our friends had no idea anything was going on with Abigail at the time. She was a few weeks from being a year old. We had zero answers and really had no idea what Abigail’s future held. We were just beginning our journey into special needs and all that entails. I felt it was time to share our simple story and let people know we still had hope! Today Abigail is a few weeks from being a three-year-old and I am two years into my blogging journey. Two years of sharing Abigail’s story and the blessing she has been to us.

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Our little cutie at 11 months old – right around the time I began this blogging journey.

A lot of people always share how joyful I am or how uplifting I am. How they always love my view of things and how hopeful I seem. I do want these posts to encourage and shine some positive light on the special needs community. Abigail’s joy is also fairly contagious and it’s hard to be pessimistic with her around. It’s easy to share the good things. It’s easy to talk about her progress and amazing willingness to learn. She really is always as happy as she seems to be in pictures. But there are hard moments in this journey too.

I titled my blog, “Loving through the Delay.” That’s my first goal is to love. Love God and love people. God has given me two very precious people to love and I love Jordan and Abigail with all I have. A lot of times they are the only two people I see all day long, and I am so thankful God has called me to be a wife and a mother. But through this developmental delay of Abigail’s it is sometimes hard to find the joy of the excitement or the good feelings. But it’s never hard to find love. So while we can’t always be happy through the delay, I can love through it. And by loving my family I hope I can learn to love unconditionally, and share this love with all we see.

This life is often lonely. It can make you crazy with jealousy if you let it. I had to quickly stop the comparison game a long time ago when Abigail’s peers passed her up. Now when I see a friend’s 5 month old already crawling it only hurts a little bit. It makes me sad to think about all Abigail is missing out on. It breaks my heart every test we have to have. Every doctor appointment makes me nervous because I never know what they will say or what other test they will order. And now we are starting the scary world of public school special needs education. Special needs is not a journey for the faint of heart.

But this journey is not without its rewards. I have met some amazing moms who have traveled this path ahead of me, and they are all amazing and wise! I have often heard these moms express that their children have made them better people. That their children have built their faith up, and helped them believe in miracles. These moms have gumption, passion, hope and a love like you won’t find anywhere else. These precious children God has blessed us with show us a whole new world many people don’t get to experience and I am privileged to be Abigail’s mom.

Abigail is still a handful. She is beginning to learn to say, “no” and to communicate her wants. This is amazing, but it also means there is a lot more whining and kickback than usual. It’s a new chapter of toddler independence we are entering and I’m not sure how to handle it sometimes. It’s tough for Abigail because she thinks she’s independent, and I try to let her be but there are just some things she cannot do – well there’s a lot of things. Like now that she thinks she’s a pro at walking, she will just start taking steps whether you’re ready or not. Well if you aren’t holding her to topples over, but she doesn’t know that she will because we have never let her topple over. So she takes off while you are getting all adjusted and you have to stop her. Then she gets mad you won’t let her walk. So how do you teach a very independent little girl that she is still very dependent without losing her independent spirit? That’s my newest dilemma.

I plan to blog more about many of these things later – about how special needs children can change your whole outlook on life, and how I can see life with such joy and potential, but tonight I just want to soak in some sweet memories these last two years of held. To see Abigail’s progress in my posts, and to read what I wrote for these last two years has been amazing. I never planned for this blog to last, and I don’t know what it’s future holds. But I am thankful for each of you, my readers. I am thankful to have a way to share a little of our story. I am thankful for my precious little girl and my amazingly, supportive husband who prof-reads most of these posts. For now I plan to keep writing posts as they come and to keep loving Abigail through this delay. Delay is normally a negative word. No one likes delays, but I am grateful for her delay. I am about to have a little three-year-old in my house, and this delay helps me soak in all my minutes with her a little longer. This delay is never what we hoped for, but it’s helping us learn to be the people God has called us to be. It’s teaching me  servant hood like nothing else could. And it’s helping me learn what love is – true, unconditional love.  There will be lots more posts to come as this little girl continues to grow and amaze us all!!!

 

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I love my little family!

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Off to the Races

Well folks we are off to the races! Our lives just got very exciting and action packed after a very long time of waiting. Of course we don’t know anything officially about Abigail’s diagnoses, but chances are looking better than ever before that we will know something soon. I can’t give a lot of detail simply because I don’t have a lot of details to give. The doctors want to run a muscle biopsy on Abigail before they give us any official diagnosis or answers. They are hoping the biopsy will reveal the answers they need to complete the puzzle of sorts, which would also be known as my daughter.

We had a whole exome study done of Abigail’s genes last year. Out of every single gene there was one that was mutated, as they call it. That one mutated gene is the gene that affects muscles, and would explain a lot of why Abigail is the way she is. However, since all her other tests have been normal they would not give us a diagnosis or put a name on anything for us. However, we completed an ultrasound and another EMG last week (it’s a test where they stick little needles in Abigail’s muscles and test how they respond to stimuli – it sounds a lot worse than it is), and the doctor said he definitely saw effects of that mutated gene. Hence why we are going for the muscle biopsy to prove what he saw was right. If the muscle biopsy agrees with all these findings we may just get a diagnosis three years later!

Of course this diagnosis won’t change anything for Abigail. Especially since it seems to be genetic there’s no fixing it. Therapy and working with her will be her best forms of medicine, and she’s already improving so much we aren’t too worried about her. Of course she will have to fight to do everything. Things won’t come naturally like they do for most children because her muscles are essential diseased. But if anyone can overcome the odds then Abigail can. I know we will have lots of information to take in and questions for the doctors when a diagnosis does come, but even if their prognosis is that Abigail won’t be able to walk I don’t think I will be able to believe them. In just two days of having leg braces, she is already standing better! I think that girl can do anything if she wanted to.

Of course we realize that this muscle biopsy won’t be easy. They will be removing a piece of Abigail’s left bicep, and we have yet to hear all the details. And we also understand that the biopsy could come back clear and we would be back to square one with Abigail just being a puzzle to figure out. But we are praying for some answers. We are praying she continues to grow strong and improve. We are praying for wisdom for our doctors. And we are praying that Abigail will fight hard, and show people that she can overcome any obstacle!

We are so proud of her and her determination! She is such a trooper through all this. Poor thing has been dragged around from doctor to doctor. She has undergone a lot of scary looking tests. She has been fitted for equipment. And there has been a few tears along the way, but mostly just a lot of smiles. I love her happy little personality and I am glad she can smile through it all. She helps us feel better about all this because we know she is strong and it takes a lot more than some scary diagnosis to get her down! So we are off to the races to fight, to get some answers, and to show a little joy in this world.

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Communication Gap

Remember that feeling you get when your baby says his or her first word? That little ‘da-da’ or ‘mama’ (or ‘ball’ if your child is anything like my husband was when he was a baby), uttered in that adorable little voice! It is so exciting!! You just want them to keep saying it. Then they pick up more and more words until they turn three or four and begin asking you about two million questions a day. Then you look at them and think, “why was I excited that you learned to talk?” Communication is so exciting for children and parents alike. You can begin to see them learn and grow as they experience the environment around them. You begin to understand what they are thinking and what they need as opposed to randomly guessing in the dark. Language is a huge developmental milestone in a child’s life!

Abigail will be two and a half in November, and she has yet to say any words. Sure she says mamama when she is tired. She can say dada and ba and I swear there is a ‘this’ in there every once in a while. She does occasionally tell people bye when she wants. But that’s it. Da, ba, ma, and maybe a ‘th’ sound. Four syllables is what I get to work with all day. These four syllables are all I have to tell me what Abigail might be wanting or needing at any particular moment.

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She may not talk, but that smile is worth a thousand words!

From day one, Abigail was the most content baby you would ever meet. She rarely cried. But now that she is developing and becoming more aware of her environment she is becoming more vocal about what she likes and what she does not like. If she does not want something she is not afraid to tell you. Her whining is at an all time high now days, and I wonder if she gets frustrated with herself because the people around her just are not understanding her. She has no real way to communicate with us. We are teaching her sign language but it is a slow process because Abigail does learn a little different from others. Right now we love the ‘all done’ sign! But we also know ‘more’ and are learning ‘please’ and ‘eat’. I hope that she begins to catch on to signing and it will benefit her.

Thankfully I am with her most days, and I am pretty good at knowing what she needs or what she wants. I know her schedule so I can tell when she will be hungry or tired. Those are when she is the most fussy. But we have gone to the doctor for a quick check up on many occasions because I thought she may have an ear infection or be sick, and she cannot tell me. Usually it is a false alarm and she is healthy, but I would hate for her to be suffering and no one even know.

Oh I cannot wait for her to talk so we can have conversations. I want to hear her voice and know what she is thinking. I want her to be able to be happy or upset and be able to express herself. You do not realize how important communication is until the ability to have it is taken away from you. I do hope that Abigail learns to communicate. We have a speech therapist that comes to our house once a week. Ms. Keisha knows that Abigail’s communication (like everything else about her) is behind. She still is not quite to a one year old’s speech patterns yet. And teaching speech to a child who has never talked is difficult. It is a lot of playing and simply communicating with them. They learn by hearing and mimicking, so you just play and talk and talk and make silly noises hoping they pick up on something. My day consists of a lot of one way talking. I am very good at talking to myself it seems. But I have a little buddy who is hopefully listening to all my chatter and learning something.

Before Abigail I would have never believed how important communication is in life. The power of the spoken word is amazing. So often we take it for granted the fact that we have so many ways to communicate with technology, word of mouth, the written word. I am so thankful that I have my husband beside me through this journey, helping me communicate my feelings and being my support system. I am thankful that today there is hope that Abigail will learn to communicate with us too. Whether through her own voice, or signing, or the help of a device. I just pray her little voice will be heard as she grows and that with it she will honor her Lord, her family, and others.

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Building a Community

What an adorable girl you have.

She is just beautiful.

What a happy girl.

Her smile is the cutest.

That hair!

These are just some comments we receive from strangers while we are out and about with Abigail. She is too cute for her own good. I tell Jordan all the time that I do not know how we made such a cutie. Her blonde hair, blue eyes, contagious smile, and now her little pink glasses make an adorable combination. You see, Abigail looks completely normal. Nobody with would think twice that she has a developmental delay. Often people are shocked, or they just do not understand, that she is not able to sit or stand on her own.

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Our beautiful girl!!

I guess most people consider special needs children to look or act a certain way. But special needs covers a wide variety of conditions from speech delays to the autism spectrum to severe cases of cerebral palsy. And that does not even cover the other thousands of syndromes and genetic disorders that are known today. People are so quick to judge the little boy in the wheelchair or the little girl with Down’s syndrome, but they do not realize that children like Abigail have some of the exact same issues.

I have to watch myself when we are out and about because I catch myself staring at families that have disabled or special needs children. Not in judgment, but simply because I can relate with them and I want to encourage them. But they take one look at Abigail and they would never guess that we were the same in any way. The other day we were in the check out line of Wal-Mart, and a mom and her two daughters got behind us. The one daughter was in a wheelchair, so I immediately wanted to talk to her and make a connection. Thankfully, she commented on how cute Abigail was and I was able to talk about how we just recently received her glasses and found my lead in to say, “Yes, we are alike!” Turns out her daughter’s and Abigail’s stories were quite similar in the beginning. Her daughter did not walk until she was four, she has no diagnoses, and they go to therapy too. It was wonderful to make that small connection, and I wish we could have kept talking, but it is hard to do that in a check out line.

I live for these connections with other special needs parents. They are people who can relate because we have all journeyed down similar paths. My passions are slowly being molded to start a special needs ministry for parents in some way. I have always wanted to be in ministry since God called me in 2010. I always figured I would be apart of a women’s ministry of some kind, but know I feel more and more led to special needs. It is where I am in life as a mother of a special needs child myself. And yes, while our children may all be experiencing their own struggles and triumphs, all special needs parents share a common bond. We are all struggling to find our way through emotions, bills, insurance companies, appointments, and still raising our kids to thrive in their environment. It is a lot, and we need each other. So my daughter may be the cutest thing in the world, and look like she has is all together but her mama needs those other parents to understand that I need them and we need each other. So today I am praying that God works in and through myself, my community, and that He can use me to bless other special needs parents in some way great or small.

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The Need for Community

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We have been living in our new home for almost five months now. I came here not knowing anyone except Jordan’s family. It was hard leaving behind my family and friends. Most days it is just Abigail and me because Jordan works such a random schedule. It gets lonely at times, and at other times I love it because I have found renewal for my weary soul in the quiet moments of life. But this past week I was reminded how important community is. Community as defined by Webster’s dictionary is, “a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals; a group of people living in the same place or having a particular characteristic in common.” God created us for fellowship and community, first with Himself and then with others. Community is where we find friendship and acceptance. It is a place to relate to one another and find encouragement. A community of like-minded people is a beautiful thing; it is a needed thing.

I had one of these times of connection and community this past week, and I will always treasure it in my heart. At the therapy center we attend each week I see the same families there week after week because we have therapy at the same time. All the parents wait in the waiting room while the children are in the back working with the therapists. Mostly parents keep to themselves and work on other things or stay on their phones the whole therapy hour. However, this past week was different. I am slowly starting to talk to some of the moms, who attend therapy with us, and last week they asked me about Abigail and I was able to share our story and hear theirs.

It was a blessing to hear these moms tell their own stories. They have been exactly where we are now, and it was encouraging to see these moms on the other side of the coin. They both have daughters with chromosomal disorders. One has a three-year old and the other has an eight-year old. Neither of their daughters will ever be able to be independent. Neither of their daughters will ever talk nor walk, at least not for long distances. They know these realities, and yet they are strong women who love their daughters fiercely. They are fighters and strong moms who even have other children to take care of besides their special needs child. They were an inspiration to this mama!

These ladies reached out to me, and helped me remember how much I needed community. And how much I am a part of this special needs community that is growing day by day. I am thankful these ladies and other special needs moms will be in my life for the foreseeable future as we continue therapy. I hope to have more conversations with them that might lead to friendship and an even deeper community. That is the thing about community – it grows and expands as you grow and expand. I have lived many chapters in my life and in each one I have specific friends and communities that I still carry in my heart. I am thankful for this new community I have being introduced to. I am thankful for others who reach out to me, and want to join me in community.