One Moment Makes It All Worth It

Lucas, Lily, and Lorelei looking sweet... for now.

Typical afternoon at my house. I finally grab my things from work, pick up Lorelei and Lucas, then buzz over to Lily's school and grab her. And before we can even pull out of the parking lot, it starts. "Mom, she's touching me!" "Momma, Lucas won't stop making farting noises." These comments from the backseat are followed by various ouch noises and grunts of displeasure all topped off with Lily screaming from her car seat, "ABC song!" So I start singing to make her happy and get a small amount of peace. I can already tell it is going to be one of THOSE afternoons.

So, we get home and everyone files out of my car like clowns arriving at the circus. They trip on one another, drop their bags, leave the car doors open, let the dogs out of the yard, until finally we all drag ourselves in the house. Nobody wants to do homework, of course, and everybody wants a snack. So, I get Lorelei, Lucas, and Lily situated with a snack and get out their school papers from the day, sign forms, initial agendas, get out homework to be done, and go through the mail. But no one seems to be happy. They are fighting and arguing and crying and throwing toys and yelling and is it just CHAOS!!!

Have you ever seen "I Dream of Genie"? All she does is wiggle that perfectly cute little nose of hers and life hits the pause button. Oh how I wished I had one of those noses at this point! Just a do-over. Just a pause. Just to catch my breath. But you moms and dads know there is no time for such luxuries. We gotta keep going! And so I do...

Crazy kids!

Calmly, I get Lorelei and Lucas seated at the table doing homework and I get Lily settled with some toys and then rush into the kitchen to try to start some dinner. Now at this point in the afternoon I am super mom. I am cooking and cleaning up and getting kids doing their work and making the smaller one happy and I am using my best sweet mommy voice to get it all done. But, unfortunately, this lasts for only a fleeting moment. It is like my children can sense that I am about to do something important. They also seem to know when I am about to relax. :)

While I am trying to start dinner, at 4:30 in the afternoon mind you because you gotta start early in my house or it will never get done, Lily comes into the kitchen and is under foot. She is following me around the kitchen crying wanting dinner and wanting me to hold her. I urge her, in my sweet mommy voice, to go play. Yeah, that ain't working. She won't leave and then demands I sing the ABC song. So, I am holding her on one hip trying to cook dinner while singing the ABC song. I mean this is just MADDNESS!! Meanwhile, Lorelei and Lucas continually stop me because they need help on their homework.

Now people who know me know that I am very noise senstitive. I can tolerate high levels of noise for a little while, but then I just lose it and need silence. This is the main reason I didn't get a degree in early childhood education and that I don't watch a lot of television. However, oddly enough, it did not prevent me from having three children. ;)

Sweet mommy voice is gone! I am yelling at them to hush and I make Lily go to the living room and lay down and I even yell at the dogs for barking. I just want everything to be quiet so I can cook dinner and get everyone fed and get homework done and baths done so I can go to sleep.

All three children are now pouting and snubbing. This continues until dinner is ready thirty minutes later. We sit down to eat and of course no one is hungry. Lorelei and Lucas do not like the chicken and pasta with vegetables while Lily throws hers in the floor. Wasn't she complaining most of the afternoon about wanting something to eat? At this point I have decided that tomorrow night's dinner will be a bowl of cereal. Lily may not want to eat, but she sure does want me to keep singing the ABC song. So I sing and cry because I am frustrated and tired.

Dinner has been force-fed down everyone's mouth, homework is done, dishes are now in the sink instead of being on the table and I consider this to be great progress. So, I herd everyone upstairs for baths. Lucas, because he is a boy, does not want to be clean and so he complains. Lily loves being clean, but only wants to stand up in the tub which she thinks is fun and which I consider dangerous. And Lorelei is taking what must be a thirty minute shower and is surely costing me an astronomical amount on my water bill. And while I am washing hair and cleaning bottoms, I am just a singing the ABC song.

They are all dry, they are all dressed, the stories are read, the teeth are relatively brushed, and now it is time for kisses good night. I take a moment to rock Lily a little before I put her in the crib, but she wants me to sing the ABC song.

My sweet mommy voice returns and I sing to her about three times and then the most wonderful thing happened. Lily started to sing the song back to me! She misses a few of the letters, but it is very clear that she is singing the ABC song to me. It is the most wonderful, happy, joyous, unexpected thing ever! I mouth the words along with her and I start to cry. This is one of those things I wondered if she would be able to do; sing a song to me. And I began to reflect on the day...

All the tears of the day seemed worth it to me now. The thirty plus times I had sung the ABC song. The tears of frustration. The chaos of the afternoon. It was all worth it. Just for one song. And as if it couldn't get any better I leaned over and kissed her good night and gave her one last "I love you."

And with perfectly clear pronunciation, Lily Pad said, "I love you."

Thank you Jesus for these moments for they remind me of your blessings in both my life and in Lily's. You are mighty to save. AMEN!

What's the Plan Now?

And the Bible study continues! This week's chapter is called "The Battle Begins." Man, oh man, is God speaking to me during this teaching series at  First Baptist of Jacksonville, NC. Pastor Jason Brinker is really bringing The Word in a real applicable way. You say you have faith? Then what does that look like?

First, let's start with who I admire. Some of us look up to celebrities or philanthropists or, God forbid, politicians. I look up to my grandmother, Bobbie Jean Headrick Bradberry. What a woman! She was not your typical preacher's wife. When she got up in the morning and her feet hit the floor, the devil woke up and said each day, "Uh oh. She's awake." "Big Nanny," as we called her, had nerves of steel and if you didn't know it, she had the mouth and gumption to tell you all about it. Widowed in her early forties, she raised three girls on her own, worked full time, and took care of the house. I always thought she was incredibly strong. She taught me to shuck corn, hull peas, make corn bread, and fry tomatoes. I loved her. She is my hero. I want to be as resilient as she was. All our heros deliver from an obstacle because they are obedient when they can't see God's plan.

So, what obstacles is God calling us to be obedient through? Obviously I am concerned about my husband getting a job, paying Lily's medical expenses, and helping Lily develop as normally as possible. It is easy to focus on my own story and immediate concerns. Sometimes I see the size of the problem and then I walk away and miss out on the promises of God. However, God is more concerned with the "upper" story of my life. "God has a "five year plan" that concerns our faith" (Brinker).

In Numbers, chapter 13 the Israelites were afraid of the obstacles in front of them. They wanted to inherit the Promised Land, but their fear continued to dominate them and so they turned away. We all do this. We all want to run away from difficulties, but we must remember we are more than conquerers! The Lord promised the Israelites Canaan and he has made promises to us too. Don't turn away yet; the best is yet to come!

God is preparing me right now for what will be required later on. "Why am I going through this difficult time?" Look back ten years from now and you may see why. Two years ago I did not know why our family had to deal with such a difficult pregnancy, but God was developing my faith then and making me stronger for now. Lily's uncertain future two years ago is helping deal with our family's uncertain future now.

Now for those Israelites. You want the Promised Land? Then you have to go through the rushing, bursting, swift Jordan River to get there and Joshua took them to the banks of the river. The Lord says, "I am not paring the Jordan River until you step out in faith and you put your feet in the water."

How can this be applied to my life? I will never see the Jordan Rivers of my life part unless I am willing to step into those waters on faith. This is faith that I be willing to step out and trust the Lord. And God has delivered me from adversity repeatedly. He does it daily. And yet when I see the next obstacle I question God's ability to conquer it. Pastor Brinker instructs that, "courageous faith is stepping out on the promises of God and speaking of what hasn't happened as if it already has." And many times he gives us victory in a way you would never imagine.

Israel's next obstacle was Jericho. "And God's big plan to bring it down involved a marching band and a prostitute" (Brinker). Sometimes following God does not make sense and this is one of those times. Joshua thinks Jericho will fall in a great battle. But God says no and instructs his people to take a walk, play some music, and trust in the help of a prostitute. And the crazy thing is that the plan works!

"Courage is not the absence of fear; it is moving forward in faith in spite of fear. Do not look at the size of the obstacle; look at the size of our God! Everything changes when we stop focusing on our smallness and focus on God's bigness. Faith is the victory and not the battle" (Brinker).

This is going to be a process for me because I struggle so much with negative thoughts, feeling overwhelmed, and fear. Just today I was in tears as I talked on the phone with my mom, June Whiten, about Lorelei and Lucas needing me to help them with homework, Lily crying for dinner, Bo not being able to help because he is working again, the mounting medical expenses, and I hadn't even started dinner yet. I get overwhelmed so easily and I have to remind myself constantly to be 1) thankful for the chaos, 2) continent in my situation, 3) humbled by God' grace, and 4) hopeful for God's promise. 

Our next wall of Jericho is getting Bo a job. Since he did not get the job in Connecticut, we have decided to use our tax return because it would be best for him to go to Tennessee for two weeks and get his A and P License, making him more employable. We will also add Lily's Occupation Therapy to her weekly medical appointments starting in April. I will just take off work whenever I need to and take the pay cuts. But on the other side of these walls there are blessings. I am actually happy we won't be moving to Connecticut. It would have met a financial, but it certainly would not have made us happy. God knew our hearts! And I know the blessings on the other side are wonderful and the Lord is using this to build my faith and trust in him.

Did Big Nanny feel this way ever? I am sure she did. She just didn't show it as easily as I do or cave under pressure the way I do. Well, at least she didn't in public. The devil is going to have someone new to be afraid of now. :)

Tape and Shoes and Rings, Oh My!

Holes worn into her right shoe from dragging her foot.

It's time for new leg braces for sweet Lily Pad!! We are so excited for her to be moving a little bit forward by having one of her calf-length AFOs reduced to ankle length. Her left leg and foot is doing so much better and finally getting a good heel strike with the foot. Her knee on the left leg is also positioned nice and straight. Now we get to work on perfecting her movements in that leg. And from the looks of her old shoes, she has really been dragging her more tensed, and weaker, right leg and foot. Just look at the hole she has worn into the outer toe area of the right shoe! Looks like an excuse to go shopping! :)

Sweet Lily Pad, full mischief!

Her right leg and foot are requiring a bit more coaxing. Our physical therapists are now using a technique called Pediatric Kineso Taping. Instead of using bulky and uncomfortable derotation straps to force proper right leg rotation, a special kind of tape is used. This tape, which is super stretchy and sticky, is more commonly used by athletes to prevent and treat injuries. I had no idea it could be used on Lily Pad. And the great thing about the tape is it stays on for 3 to 4 days at a time, stretching and moving her hip joint and tendons even while she sleeps. We have seen such a change in her right leg just in the month we have used this technique! Instead of her knee pointing almost directly at her left knee, it points straight ahead, which in turn causes a more parallel foot placement when she walks. Of course, this does not help her lack of heel strike on the right foot, but at least her leg is straight now. After the tape remains off for a day or so, her leg immediately starts to rotate in again. But this will slowly change over time as we continue using the Kineso tape.

Another new technique the physical therapist is trying is the use of electrodes on the right calf muscle to help strengthen that muscle and stimulate muscle contractions. Lily is NOT fond of this new technique! I don't think it hurts her in any way, but I do think it bugs her. But I can't say I blame her. I am pretty sure it would bug me too. So the electrodes, along with the Kineso tape, will be used in combination with the calf-length AFO to help strengthen her lower leg muscles, encourage a heel strike on the right foot, and promote flexibility in the right hip.

Ankle length AFOs 

The physical therapist is allowing us to use a borrowed set of ankle length AFOs until hers are finished. Lily Pad seems to like these new ones because the minute she gets them on she runs around the house. Silly girl! And with her new mobility comes new mischief...

It seems as though Lily Pad has become quite the typical two year old by getting into my wedding rings and then promptly practicing her new trick of throwing things away. Yep. Lily threw my wedding rings away and they were long gone before my husband and I realized it. It is mostly my fault because I have a hard time remembering that she can now get into EVERYTHING no matter how high I place something or how far out of her reach. Her problem-solving techniques are very well developed I must say and therefore no amount of precaution on my part deters her.

My mother's wedding band now has a second life.

But all is not lost! Since we obviously can't afford new wedding rings, I have now given my mother's old wedding ring a new life. It is very special and sentimental that I have both her's and my dad's wedding rings and now I get to wear hers as my own. Thank you mom!




And in response to my previous post on February 2, 2013,  my husband has yet to hear back about the job in Connecticut. But in the mean time, he has sent out ten more resumes. And so the waiting continues....

Where ya' been lately?

I guess I have been out of contact for several months. Life has been hectic. And stressful. First, my husband is retiring in April of 2013 from the United States Marine Corps after 20 honorable years of service. He has dedicated his life to serving our country and I am so grateful for the years he has spent in service. It has been thrilling at times and painful at others. In total he has been on 7 deployments and logged over 3400 hours flying as a crew chief on the CH-53 Heavy Lift Helicopter. But transitioning from military life to the civilian workplace is difficult. After now achieving the rank of Gunnery Sergeant, he will soon begin a new career at the bottom. In preparation for this, he has been using his G.I. Bill to attend college through Liberty University, which offers a considerable discount to military veterans. He is earning his Bachelor’s Degree in Business Management in hopes of improving his employability chances. I am so proud of him for starting this new path later (at the age of 38) in his life. He is so very intelligent and is a hard worker. He is truly doing all he can to prepare for his new life as a civilian employee.

As I have shared before, Lily's medical expenses have accumulated considerably over the last two years which has now resulted in the depletion of our savings account. With retirement looming in the distance and an uncertain employment future, my husband has taken a second job in hopes of building up savings to prepare. We had hoped he would get a contract job working either on Camp Lejeune or New River Air Station here in Jacksonville, North Carolina, but with the downsizing of the military and President Obama cutting military funding, steady and dependable contract jobs are no longer available. Contract workers work along side the military in training troops, designing systems, construction, and equipment maintenance. My husband was in line for a job training pilots and crew of the CH-53 Helicopter, but deep military budget cuts have eliminated this possibility. Now the contract work is only available on a year by year basis. And when you have a child with special needs who requires medical care on a weekly basis, year by year employment is not a viable option. Perhaps if he does not get a job he can turn his part-time job into a steady future. Either way, serious changes are about to take place for us.

Because my husband is a senior ranking Staff Noncommissioned Officer in the Marines, he is able to leave work whenever necessary to take Lily to her weekly appointments. This has been an incredible blessing to us as it is extremely difficult for me to take off work. Being a high school teacher, it is more trouble to be out of work than not. With lesson plans and paperwork and figuring out how to get my other two children home from school, it is just not possible for me to leave work every week for Lily's physical therapy appointments. In addition, I have a very limited number of sick days which always seem to run out quickly when you have three children. Soon, my husband and I will have to switch responsibilities. We have considered having me quit my job to take care of Lily or instead hiring a constant baby sitter. I may keep my job and just take time off whenever I need to and thereby forfeit a good bit of my income. And to be honest, none of these options are good and certainly not sustainable for long. We have no idea what we are going to do.

What has all this meant for my family and me over the last several months? We have spent most nights without my husband. The kids miss their dad and I miss talking to my husband. While my husband's workload has doubled, so has mine. I swim just as fast as I can to stay ahead around here, but I just get further behind. The dishes pile up quickly. Garbage cans stay full. Laundry never ends. Carpets are littered. Furniture is dusty. And I just let it go. I can't do it all and I don't try. I do the best I can with my limited time and energy. Unfortunately, my blog, which the Lord has placed such a passion for in the beginning, has now been placed far down on the priority list. The priorities are food on the table, kids staying bathed, homework gets done, and always church. If not for our church, First Baptist of Jacksonville, there would be little fun in our lives. What a blessing that our church is FUN!! We enjoy worshiping and serving. I get the chance to sing in the church choir. My husband works the powerpoints for all the services. Lorelei enjoys service and helping in the nursery. And Lucas and Lily love their life groups and church teachers. At church, our struggles disappear and we are simply blessed to be in the house of the Lord.

On top of his regular full-time job as a Marine, part time job working at Lowe's, Lily's weekly taxi driver, and college studies, my husband has also been diligently completing job applications and sending out resumes. He estimates he has sent out about 30 resumes, attended one job fair, publicized himself on Monster.com, and utilized the services of a military job search agent with only one company calling him about a job. One. I do believe this is a true picture of the jobless rate here in our country.

This week we will hear back from the company that has interviewed him for a job. It is in Connecticut. And we are originally from Alabama and currently live in North Carolina. I have to be honest, I do not want to head north. I am a southern girl through and through. I don't do cold and snow. We would love to move back to Alabama, or at least further south, to be near our family who all live in Dixie. But we realize we must provide for our family and that we really have little control over our future. The Lord, I am certain, already has plans for us and we will hear His plans for us in a few days. We are constantly praying for the Lord's will in everything and not our own. And even though I don't want to go to Connecticut, I am praying the Lord will change my heart if this is to be our future.

We are confident the Lord will provide for us. The Lord promises in Jeremiah 29:11, "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." 

Lily Pad Takes Independent Steps!!!

Child, who suffered 5 strokes before birth, walks!

Well, it has been a whole month since my last post and this time I have video evidence of Lily Pad walking!!! She is doing incredibly well. And she is walking without leg braces which is absolutely amazing!

We finally did get her new leg braces in, but she started walking the day before we picked them up. It was as if something clicked with her and she just took off!!! It was Tuesday, October 30th and I brought her home from daycare that afternoon. I sat her in the floor as usual and she stood up and started walking. She walked lap after lap around the house; she would not stop! She did it for about two hours that afternoon. And she fell down A LOT. But she would just stand up and continue walking again.

Even though Lily is walking without braces, she does still have a few struggles. Her legs do turn in still,  but is not overly pronounced. She has a mid-foot strike on the right foot because of tonality on the right side of the body. Then she is still slightly weak on the left side. But her problems are only slight. What a blessing!!!!!

I have talked to many parents of children with strokes and every child walked at different times. Some walked at 2 years old, some at 18 months, and some walked at 1 year old. It took Lily 24 1/2 months to finally take her first independent steps and it was worth all the time and effort and physical therapy and money to provide her with the care she needed.

I want to thank the parents on the various blogs and facebook pages I am a member of who encouraged me and told me not to give up. Your children's stories of struggle and hope gave my husband and I the determination to press forward and demand better for our child. You are an inspiration to my family!

Toddling!

Two-year-old with hemiplegia walks!

It is official. We have a toddler! But she is scared. :( Lily Pad can absolutely walk on her own. She does not need her little push walker dinosaur anymore. Our physical therapist has told us we need to hide it so she won't rely on it. Apparently, the push walker has trained Lily's muscles to lean over and falsely rely on it for confidence. So, we start building her confidence by holding on to the back of her shirt as she walks which is working out nicely. She totally thinks we are holding on to her, but she is walking under her own strength and coordination - something we thought we would never see! And it is so very adorable watching her toddle around. We are so excited to finally be entering this new era of parenthood. However, we are not looking forward to the bumps and bruises that come with having a two year old.

And speaking of two-year-olds, Lily has one more week of being one. But don't let her cuteness fool you. When she is not acting like a two-year-old she is acting like a teenager. Such an attitude! If she does not get her way, she complains and gives us her "mad face" which is just her bottom lip poked out. So cute! Not intimidating AT ALL! But she will do it on command.

And when we ask her how old she is, she immediately says, "Two!!!!" I am so thrilled to see more and more of her personality. Our family is so BLESSED to have a sweet and sometimes sassy baby girl!

Get Reactive and Proactive!

FREE AFOs for Infant Stroke Survivor!

We have good news! Lily will get a new set of leg braces for FREE! How? Because I got reactive and angry and sent a complaint letter to the owner of the company. The brace and limb company that failed to give Lily the prescribed AFOs responded almost immediately to my letter of complaint. I mailed the letter last Monday and they were calling our physical therapist and us by Tuesday. The owner was extremely apologetic for the lack of attention given to our daughter and her needs. The owner wanted to make the situation right and scheduled Lily to be refitted the very next day! Her father took her to the appointment and Lily was casted and measured thoroughly. She will get a new set of articulating braces with derotation straps. Unfortunately we have to wait for another three weeks for them to be delivered, but it will be worth it. Lily will finally get what she needs.

There are a couple of lessons I learned through this experience with the help of a dear friend who also has a child with special needs. When my friend read my last blog post, she became concerned and gave me a call. Her call was exactly what the Lord knew I needed. It can be lonely being the parent of a child with special needs. Finding someone within your own community who is dealing with similar issues is rare, but fortunately God has placed someone in my life who “gets it”.

We discussed the quality of care my daughter receives through a free government program as well as the difference between such programs and privately contracted services. Currently Lily receives physical therapy through a government early-intervention service provided within our county of residence. Because of government regulations, the physical therapist is only allowed to work with Lily a certain number of hours within a week. And Lily does not qualify for occupation therapy under this agency’s regulations because of her age. In addition, I learned through my conversation with my friend that at the age of three, the early-intervention program is “done” with Lily. She will then transition to the school setting and will attend pre-school through the same agency. However, she will only get physical therapy if Lily qualifies for speech therapy. As I have already discussed in previous posts, Lily certainly has no trouble with verbal communication, so I doubt she will qualify. So what happens to Lily after the age of three? This will be our family’s responsibility.

My friend advised me to get Lily an evaluation by a private therapy provider. The private provider will give Lily the physical therapy and occupational therapy she NEEDS and not what she qualifies for under strict government regulations. It is also important that our family begin a long-term relationship with these therapists as it is likely she will need their help for years to come. While the government services are free, which is a plus, they are extremely limited and only temporary. Lily needs something consistent, proactive, complete, and enduring.

Our family is preparing for the additional cost of private therapy as it will be a financial commitment. We do have medical insurance, but there will be co-pays of around $60. While that might not sound like a lot to some, it is an additional monthly medical expense. However, we are certain our money will be well invested.

I am extremely grateful for my friend who is guiding me through this process of being a parent to a child with special needs. I am always surprised at how much I do not know about the ins and outs of therapy, insurance, and referrals. Everything is complicated, but I do know that Lily has no greater advocate and fan than her mother!