Lily Pad's Place

Dear Stroke...

2013-05-12T19:44:00.001-07:00

I wanted to take a moment and thank you. I know this is not the response you usually get, especially from a mom whose child you have so greatly affected. But you see, we now have a different view of life because of you.

Even though I thank you for changing our life outlook, I still hate you. My hate began the day you reeked havoc on little Lily Pad's brain, running rampant in her head, exploding and consuming her thoughts, motor skills, and language capacity. I am sure you thought yourself quite successful at blocking her CSF fluid with a myriad of blood clots and enlarging her brain ventricles. What a big pat on the back you must have given yourself as the doctors told us she would never live or, if she did, she would not have much quality of life.

Perhaps you chuckled at her two shunt surgeries as she endured having her head shaved each time, her scalp opened up, and a tube placed inside her brain. And that curve ball of a shunt infection? That was quite the cheap shot on your part. My hate truly reached a high point then as I watched her lay motionless in a bed for two weeks with a tube running out of her head. That tube deposited her brain fluid into a bag at her bedside. Did you know that, Stroke? I truly thought she would die then. I've never seen her that close to death and it was awful. So awful I had a mental breakdown in the waiting room.

In the months that followed, my hate grew as I watched her struggle to hold her head up, push herself up with her arms, and roll over. And it took Lily until she was 14 months old to crawl. TO CRAWL! At an age when most children are climbing on the furniture, my child could just barely maneuver. And that battle was not easily won either. Her father and I had listen to her scream and cry and fight with the physical therapists and us. But she beat you then and her fight was not over!

And while we celebrated Lily Pad's second birthday with cake and balloons and friends, my hate boiled. She still could not walk on her second birthday. But everyday we got up and we helped her fight you with developmental therapy and AFOs and physical therapy and kinesio tape and stretches and workouts. It took five therapy sessions a week for nine months, but she won and you lost. What was considered a victory for Stroke would soon become a triumph for Lily Pad when she walked just one short month after that birthday party.

Do you remember all that brain matter you consumed? It has grown back and flourished and rewired itself, healed itself, and dissolved your blood clots. All the destruction has been undone. Her ventricles are normal and her shunt works great. She walks. She talks. She dances. She runs. She loves. She won.

I realize I started saying thank you Stroke and much of my letter to you has been rather negative, but of all the things you have done to us, the most influential impact is how we see life. Because of you I KNOW that my God performs miracles. Each day Lily Pad wakes up is a blessing and I cherish each moment I have with her. The milestones that most moms get to celebrate with their children are extra valuable to us because ours are hard-fought and hard-won, after months of therapy and determination.

Sure, you still affect us. Lily Pad could start having seizures at any time with no warning. She may always be limited in her motor skills. She may be learning disabled. And, God forbid, she may have more of you, Stroke, in her future. We are promised nothing, but this lack of certainty has only made us more humble and appreciative of the little victories.

And we are not worried about the obstacles we still face or the ones we have yet to encounter because as history has proven, Stroke, you will NOT be victorious. Lily Pad will beat you every time and we will NOT give up!

One Moment Makes It All Worth It

2013-03-17T19:47:00.003-07:00

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?

2013-02-26T19:24:00.003-08:00

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. :)

Wandering: The Space Between

2013-02-19T11:53:00.001-08:00

Since January, my church has been studying The Story, by Randy Frazee. It is the entire Bible as told in one long narrative. Not intended to replace the Bible, it is intended to supplement the knowledge you already have and experience it in a new way. Right now we have made it to chapter 6 where the Israelites have been brought out of Egypt and are now wandering the desert as they travel to the Promised Land. A trip that should have only taken them about 11 days ends up taking them 40 years. Why? Complaining. What is to follow here are my reflections on this week's reading, sermon, and how this applies to my life.

I tend to focus on where I am going and how long it will take me to get there. Case in point: When I put into my GPS the address of my destination, it tells me an estimated time of arrival. Of course, I don't see it that way. I see it as the time to beat :). So instead of enjoying the journey, I only focus on how much time it may or may not take me to beat the estimate given to me by my GPS. I never take a different, longer path and I never stop, if I can help it, to view the sights along the way. And as humans, we often prefer the direct route because it saves time. But if you know God, he rarely takes the direct, most obvious route anywhere. To him, it is the journey that matters and not necessarily the destination.

"Wandering" is defined as living in the space between where I started and where I want to be. In fact, we spend the majority of our lives in this "wandering" phase. The Israelites were living it as they wandered the wilderness, following God, and wondering when they would ever get to their destination, Canaan. It does feel like I will never get to the other side of my wilderness. When will my husband get a job we can rely on? When will Lily finally be able to walk normally? When will we get to a point that our schedule is not so crowded? When will we be financially stable and afford the medical costs? And we feel like we can't relax until we get to our destination. Unfortunately, it takes a long time and I, just like the Israelities, have spent most of my journey complaining.

As a result of their complaining, the Israelities were punished because their complaining showed a lack of faith in God and in his word. Even though he had performed great miracles for the people, they still grumbled about the provisions God blessed them with. The food was not good enough. Moses spent too much time on the mountain. Water was not plentiful enough. On and on they made their dissatisfaction known to God. Moses spoke on their behalf, often asking God to be merciful toward the "stiff-necked people". God was merciful, but there was always punishment.

I know this is how I sound to God. My complaints are numerous and range from rising health care costs to having my husband be gone frequently to work. Dare I say, I even complain about Lily's progress, that it is not fast enough or significant enough. How foolish I have been! He didn't even have to save Lily's life and yet he has done this and so much more. He has removed almost every single negative effect from her medical conditions. I, too, have been a stiff-necked person. And my punishment? The Lord does not need to punish me because I punish myself by seeing little joy in my life and only focusing on the struggle ahead and behind. What a waste of my time!

God is more concerned with who we are becoming than where we are going. When you are whining and complaining you have taken your eyes off God and you don't trust him. Numbers 11:1; 4-6 and Philippians 2:14-16 contains references to this. Do not allow your life to be tainted by a complaining spirit. Do you not know who your God is? He is always with you and he HATES whining. As I am sitting in church listening to this sermon, there is no doubt that this message is for me. I am getting the Lord's message loud and clear.

People who complain lose the ability to see the hand of God and the blessings in their lives. Negativity and a complaining spirit ruins everything. I have a "friend" who I used to love hanging out with, but her life was complicated and her complaining escalated. As a result, I stopped hanging out with her, returning her text messages, or posting on her facebook wall. Her negativity drove me away and now I never see her. Complaining is a spiritual issue that robs you of happiness, which is why, lately, I have seen little happiness in my own life. Even more rare are encouraging words from friends, whom I have driven away with my own negativity.

Here are some hard truths about complaining: 1. Complaining brings a curse on your life. Exodus 16:2-3 explains that the Israelities brought about their own curse because of grumbling. 2. Complaining magnifies the wrong, minimizes the good, and causes you to miss what is most important. In Numbers 11:18-20, God is giving his people perspective. You don't like the food I am providing for you and you would rather have meat? Fine. You shall have meat until it is coming out of your nose and ears. What a strong statement the Lord is making here. Just like the Israelities, we all need perspective, including myself. 3. Complaining is the opposite of worship because is minimizes God. Daily, moment by moment, God is pouring out his blessings on our lives and we rarely see them or thank him. We should worship him with everything we do because he has poured out immeasurable and undeserved blessings on our lives. 4. Complaining is worship of self and a sign of pride; this is idolatry. In Numbers 14:11, God is expressing how his feelings are hurt because his people still do not have faith in his promises. So often we don't turst him, despite all the blessings he has poured out on us.

The big idea is all of this is that a complainer feels that everything that God asks of them is too much and everthing God has done for them is not enough. Is this truly how I feel about God? NO! I am humbled daily by all that he has done for me. I do not deserve the life I currently have because I have been wretched and undeserving in the eyes of the Lord. Why would he choose to save my little girl Lily from the horrible effects of her strokes and hydrocephalus and, even more importantly, why don't I thank him more often for it? Why should I complain about our financial "struggles"? I have food on the table, clothes on my back, love for my family, awesome friends, and a loving husband. Bo has two jobs now and yet I complain about the one he doesn't have, yet. Truly I have been ungrateful. It is time my attitude changes. Why should I expect life to get easier? It was never promised to me in the first place and it is certainly much more blessed because of God.

So how do I live the wandering phase of my life well? By having a thankful spirit!

Tape and Shoes and Rings, Oh My!

2013-02-13T17:43:00.000-08:00

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?

2013-02-03T19:02:00.002-08:00

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!!!

2012-11-13T17:01:00.001-08:00

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!

2012-10-14T09:11:00.000-07:00

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!

Drink and Donate

2012-10-09T16:18:00.002-07:00

Drink Tabs can be recycled to fund Ronald McDonald House Charities

While Lily was hospitalized shortly after birth, my husband and I stayed a the Ronald McDonald house until she was able to come home with us. Certainly I would have much rather preferred recovering from the C-section at my home, but the Ronald McDonald house of Durham, North Carolina was a wonderful alternative. Bo and I were so blessed to have a place to stay that was incredibly cheap, close to the hospital, and assisted with meals. As a way to try and give back to the Ronald McDonald House of Durham, we collect drink tabs for recycling. The recycling money goes directly to support Ronald McDonald Charities. The following video was made for the students at Richlands High School in North Carolina to encourage them to also donate drink tabs. The video is being played on the school's weekly student-produced news program. Enjoy and donate to Ronald McDonald House Charities!

Get Reactive and Proactive!

2012-09-18T08:26:00.000-07:00

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!

It Ain't Right!

2012-09-09T19:06:00.003-07:00

The prescribed AFOs were not given and these ain't right!

It has been a loooong time since my last blog post and I greatly apologize. From the last time I posted up until about a week ago we have waited for Lily’s AFOs. And she has not walked, has had no desire to walk, until about a week ago. J But the minute we put the AFOs on her, she stood up and attempted walking. What a change in her we have seen! She seems to be getting the hang of this walking thing, but our experience with the brace and limb company have tested my patience and Christian attitude.

I am MAD because my AFOs just ain't right!

My husband and I recently used a local brace and limb company for Lily’s AFOs. The company came highly recommended by our physical therapist. She not only specifically requested we use a specific orthotist, but also prepared us for a custom fitting appointment in which our daughter would have to be casted and measured for her lower leg braces.

When we arrived at the office, the orthotist welcomed us and began to measure Lily’s foot. As he measured, we talked about the prescription physical therapist had sent over. I became concerned because he did not mention the “hinged AFO” phrase or the de-rotation straps my husband and I had discussed with the physical therapist. I immediately tried to call our PT to get clarification. While I waited for the physical therapist to call me back, I was bothered that the orthotist did not make a cast of Lily’s legs and feet nor did he measure her leg length as the PT had said. In fact, the whole office visit took about 5 minutes. The orthotist gave us little details about how the AFOs would look or function. I wondered how he could give our daughter Lily custom fit and function AFOs with only a foot measurement. However, I did not question him as I considered him the professional. In the meantime, the PT called the orthotist directly and discussed with him that Lily’s braces were to have hinges, be custom fit for her, and include de-rotation adaptation.

Three weeks after Lily’s fitting, her AFOs were finally ready. When I reviewed them, they did not have hinges, de-rotation strap capabilities, and were not custom fit for her. The AFOs were much too long for her feet, missing a top Velcro strap, and ill-fitting around her ankles. My husband was told by the orthotist that the strap was left off so that the unhinged AFO would allow for a motion similar to what the hinged version would have provided. Upset, I called our PT and requested she review the AFOs the next day.

Upon assessment, the PT and myself felt that the orthotist had done a very poor job of meeting the needs of our daughter Lily. Instead of what was written on the prescription and discussed with the PT, Lily received “stock” AFOs that could have been ordered online by my husband and I. While I am certain the orthotist is a consummate professional, he failed to give our family the time and effort because of the age of our child, our inexperience, and the underestimated intelligence of our physical therapist to know the difference between custom-fit AFOs and “stock” AFOs.

Unfortunately, we are forced to use the AFOs because our insurance will not pay for another set of AFOs so soon after the delivery of the current ones. Overall, our experience with this orthotist and company has been unsatisfactory. This is disappointing as I am certain Lily will continue to need AFOs and we will eventually have to get the current ones replaced with ones that follow the therapists orders and prescription.

This situation is upsetting mostly because I feel like we had the wool pulled over our eyes. And the AFOs we have received are ok for the job, but they lack the capabilities the prescribed ones could have provided. Because our insurance won’t pay for a replacement so soon and because of how expensive they are, Lily will have to use these for now and she seems to be adapting well. Unfortunately we cannot fix her in-toeing problem right now because her AFOs do not have the de-rotation strap capability. Instead, we will have to use a special tape used by athletes and have to wait until the weather cools down a great deal as the tape is sticky and painful in the late summer heat.

Who would have thought that a company whose purpose is to help the disabled would take advantage of such a tiny patient needing their help? Today’s lesson parents: If your gut says it ain’t right, IT AIN’T RIGHT!

A New Hope: Hinged AFOs

2012-07-22T14:48:00.002-07:00

I know it has been awhile since our last post, but it is summer time and we have been on vacation! Myself and my kids Lorelei, Lucas, and Lily went to Birmingham, Alabama to visit family. We had a wonderful time celebrating my mother’s birthday and my sister’s birthday on July 4^th and 5^th. The kids took a trip to Desoto Caverns, Zimora Park swimming pool, The Summit shopping center, and Vulcan State Park with their grandparents. We all came back tired, suntanned, supplied for school, and filled with the love of family!

After two weeks off, Lily had lots of physical therapy to make up. So we have been doing two to three therapy sessions a week since the second week of July. The PT has been working on her heal-toe technique with the left foot and stretching her interior leg muscles to improve her hip turn-out. The muscles on the top her legs are not strong or coordinated enough to lift her toes. As a result, she drags her left foot and toes. To compensate for this weakness, she lifts her legs at the hips by rotating them inward. This improper rotation and lifting is hindering her ability to walk correctly.

Butterfly kisses from Daddy.

After three months of working on these issues and providing opportunities for her to walk and stand, we have seen no improvement in her strength and coordination. Lily has plateaued in her motor skills development before, but never for such an extended period of time. So, this week the PT and I decided it was time for Lily to get hinged leg braces and hip derotation straps. I am so ready for Lily to walk, and ideally I would like to see her do this on her own without any assistive devices, but I am willing to do what it takes to get her walking.

While she seems to have stopped improving in motor skills, her language skills continue to spring forward. I know I have said this several times before, but she really does repeat everything we say! Her newest words are cracker, cup, brother, sister, banana, and all gone. And she even does hand motions with her words and pretends to brush her teeth, rock a baby doll, and answer a telephone. Lily has completely caught up with her age group in areas of cognition and language development. What a wonderful blessing!!

As I was telling friends and family about Lily Pad’s upcoming braces and straps, I had an individual say to me, “So does this mean you are giving up on Lily being able to walk?” Absolutely not!!! The braces and straps are designed to build Lily’s walking muscles, not as replacements for the skill. This person’s question shows me that change and situation is all about perspective. If you perceive something as negative, it will be. But I see Lily’s new devices as an opportunity to give her the confidence to take her first steps. God is providing us with the resources to help Lily and he is blessing me with a positive outlook and a new hope.

The Eye: Gateway to the Brain

2012-06-28T08:16:00.001-07:00

Last week I took Lily Pad to the eye doctor to check on a persistent problem she has had since birth. As a result of the strokes, Lily’s eyes lack muscle control. Both eyes turn in and out periodically when she is tired or when she is looking at objects from the point of view of an odd angle. In addition, her eyes turn in and out when they focus for an extended period of time however the problem is more prevalent on her left hemiplegia side. To correct the problem, the doctor prescribed a patch for the right eye in order to strengthen the muscles on the left. But patching the eye of an infant is not easy or extremely successful.

Lily learned very quickly how to remove the patch. So, we switched to adhesive patches, but these eventually caused irritation to the skin around the eye. Finally, we found the perfect combination! By patching her eye during mealtimes, we were able to redirect her focus on eating rather than the annoyance of wearing the patch. Using this technique we were able to fit in the hours of needed patch time.

And Lily’s eyes have made huge improvements due mostly to her physical therapy. As the physical therapist focuses on the left side, Lily’s eyes slowly begin to improve. The more strength and coordination she gains on the left side, the more strength and coordination she gains with the left eye. I was not expecting these results, but this does make quite a bit of sense. As she uses her hemiplegia side, she slowly builds hand/eye coordination, which in turn benefits the eye muscles.

Lily’s eye doctor has been seeing her every three months since her birth to monitor the progress or regression of the eye muscles. The eyes, I have learned, are the gateway to the brain. If there is a problem within the brain, the first area to be affected will be the eye. Also, the doctor is able to see if there has been any damage to the optic nerve because of pressure or bleeding. Lily’s optometrist has not observed any damage, which is excellent news! It indicates that the shunt is working properly and that the strokes have not decreased the size and function of the optic nerve.

The eye doctor is so impressed by Lily’s eye function that we are now released from patches and three-month optometrist’s visits. We are now on the every six-month plan!!! Yay! Not only does this reduce our doctor’s visits, but it also shows how far sweetest Lily Pad has come and the bounty of God's blessing in her life.

Walking Up that Hill: A Baby with Hemiplegia and Hydrocephalus after In-utero Stroke Tackles Walking

2012-06-19T15:36:00.000-07:00

20 Months Old June 19, 2012

Today, Lily turns 20 months old! And she is doing so many wonderful things! She can say many new words such as "that's daddy," "all gone," "good girl," and "cup." She truly is a miracle and her ability to finally communicate with us and tell us what she wants is refreshing. We continue to work with her on her language development and especially her fine and gross motor skills. Walking is still a challenge, but she is oh so close...

I can stand with my push walker!

Instead of fighting us when we encourage her to walk, Lily is now taking off on her own! She grabs her dinosaur-shaped push walker and does laps around the kitchen and living room. She is able to pull herself to a standing position and take off. And some of the issues she was having before now seem to be resolving themselves. For example, Lily's left foot, which is on her hemiplegia side, turned in quite a bit when we began walking exercises. The Physical Therapist was quite concerned and the Developmental Therapist recommended a brace for the left foot. The PT did not want to add a brace because the brace limits the ankle's ability to flex and extend. And since our goal was to get her walking, the PT said the brace may cause more problems by limiting her range of motion in the that foot and ankle. But as Lily continues to use the push walker, her left foot has slowly turned straight. It no longer turns in when she walks. I did bring this to the attention of the PT and they said that often times the foot will turn in on the hemiplegia side in an effort to compensate for the weakness. Now, as her left side becomes stronger, she will not over compensate by turning her foot inward.

Nothing can stop me now!

How wonderfully amazing is the brain of child! When no pathway exists, the brain creates new ones, repairs damage, and changes to overcome obstacles. Sometimes I am reminded of how much work we still have to do.

Doing laps in the house.

Another concern we have is Lily's size. She is incredibly small for her age. At her 18 month check-up, she only weighed 20 pounds. Her weight is not even registering on the standard growth chart; it is below it, off of the growth curves. In fact, Lily had lost weight since her 15 month appointment! As well, her height is only on the 10th percentile curve. Her head size is stable at the 20th percentile curve. These numbers were quite concerning for our pediatrician and he asked if she ate well. Lily Pad eats everything in sight! She loves to eat so this is not her problem. I did talk to other parents of children with stroke, hydrocephalus, and hemiplegia who all confirmed that their children were tiny as well. One parent reminded me that, unlike a normal child's brain, our children's brains have suffered a good bit of damage where tissue was destroyed, blood flow compromised, and CSF restricted. Not only will these present developmental and cognitive delays, but also delays regarding glands in the brain. The pituitary gland, located in the brain, is responsible for growth and therefore may not function as well because of damage.

Also, it takes Lily and other hemiplegic children twice the effort to do normal motor functions as it would take a child with no muscular or sensory problems. Lily will burn twice the calories reaching for a toy, pulling to a standing position, cruising the furniture, walking while holding hands, and crawling on the floor. It will also take her twice as long to accomplish these tasks which in turn burns more calories. It is no wonder she eats often and a lot. She burns the calories as quickly as she can consume them.

I am a happy baby!

One afternoon I was watching Lily play. She was playing with her baby swing, pulling up on it and trying to connect the buckles in the seat. She lifted her left foot and put it on the ground while the right knee reminded on the ground. Lily tried to push up with her left foot and knee to a standing position. Sweetest little Lily Pad tried so hard to push up with her left side and could not do it. She struggled with it for a few minutes before finally giving up and switched to her right foot. It very much hurt my heart to see her struggle and to see how weak that side is. We still have lots of work to do, but Lily is trying to use her hemiplegia side and that is a huge improvement!

Lily Pad's Place: Research & News

2012-06-18T06:38:00.001-07:00

Lily Pad's Place: Research & News

Pediatric Stroke Awareness Montage 2012

2012-06-08T19:49:00.000-07:00

Children's Hemiplegia and Stroke: Faces of Hope

My baby daughter Lily had a stroke in utero. She has partial hemiplegia on the left side, hydrocephalus, and a shunt because of her stroke. She is a living miracle of God's grace! Educate your self and others on childhood stroke and read Lily's story of hope.

Sweetest baby Lily, nicknamed "Lily Pad"

Nothing Else to Lose

2012-05-21T19:23:00.000-07:00

Me, just one week before Lily's arrival.

Prenatal Diagnosis of Fetal Stroke

The next step in our journey involved a trip to Wilmington, North Carolina to see a specialist where we would get a more detailed sonogram and blood testing. I had a bad feeling about this place from the moment I stepped in the door. First, they do not allow children in their office AT ALL. Then, there was soft, soothing music being played in the waiting room which was dimly lit and smelled of lavender and disinfectant. The two women already in the waiting room were obviously pregnant with multiples. I have never seen such huge baby bumps! Once you are called back, you get your own private nurse and your own private waiting room. And every room was equipped with a box of tissues as if crying fits would ensue at any moment. It was just creepy.

After seeing the sonogram technician we were whisked into our waiting room. And we could hear NOTHING! No footsteps down the hall, no quiet chatting in the next room, no flushing toilet, no overly soothing music, nada. It was unsettling because we were anxious to hear about Lily Pad.

Finally, our nurse took us to a conference room in the very rear of the building. This should have given us a clue as to what we were about to hear, but it never registered with us until months later. We were joined by a Genetics Counselor and Obstetrician, both whom we barely knew, and one of those boxes of sandpaper Kleenexes was unceremoniously placed in front of us. Another clue unregistered. What came out of their mouths next would haunt us for months to come.

They told us that Lily had several bleeds, strokes, in her brain and the sonogram revealed her brain ventricles were filled with blood. They did not know why this had happened or how to help her. In addition, to the bleeding, Lily was also missing part of her brain, she had a cleft palate, and had a heart malformation. It was theorized she had Dandy Walker Syndrome. In short, Lily would not live. On the slim chance she did live, she would probably be a vegetable. They suggested we have an abortion. Unfortunately, this would not be the last time abortion would be recommended to us. The doctors told us they could send us to another specialist to see if they could help us, but the Wilmington doctors could offer us no other assistance. They recommended The Children's Hospital of Philadelphia, Houston Children's Hospital, and Duke University.

My husband and I literally felt we had been hit by a Mack truck. I absolutely could not believe what I was hearing. This is the kind of thing you watch on Discovery Health or some other medical show. Things like this did not happen to our family! What emotions were we experiencing at the time? Anger, frustration, disbelief, grief, sorrow, fear, desperation, depression, hopelessness.

Abortion: when faced with this option it actually seemed a feasible possibility given Lily's prognosis. Perhaps the greatest test of my Christianity came at this moment. Would God want me to carry a child to term only to watch it die anyway? Would God want Lily to suffer? Would God want me to suffer? Surely the Lord would condone such a heinous act as abortion when unavoidable suffering was involved? It seemed like the "right" thing to do and I was tempted.

Sweet Lily Pad is just a few weeks old.

But God loves us from the womb. We are fearfully and wonderfully made. And life begins the moment sperm and egg are joined. I knew this, have always known it and so I said no to abortion. Whatever suffering was ahead of our family, I had to let go and trust that it was indeed part of God's plan for Lily.

So, we asked to be referred to Duke University to see if their doctors could help us. But before leaving they sent us home with literature about the abortion option and a book to read to Lorelei and Lucas in the event Lily died. This was a completely sobering moment and it nauseated us to the core. We were then whisked out the back door of the medical office for fear our tears would upset those in the front waiting room. This is the only time I have ever been asked to leave by the back door of a doctor's office.

Bo and I said nothing the entire hour trip back to Jacksonville. Our friends and neighbors were waiting for us when we got home and we broke the news to them. They prayed for us and for Lily. After the prayer, Bo and I threw away the literature given to us by the doctors because we did not want to focus on man's prognosis for Lily, but God's. Even though it seemed absolutely hopeless, we held on to our faith and God's promises to give us a hope and a future. After all, we had nothing else to lose...

Divine Appointment

2012-04-22T18:12:00.001-07:00

"The first time I saw your face..."

It started as Hydrocephalus

In the "Our Story" section of the blog, I sort of glazed over a lot of details about our prenatal visits and I would like to give an account of our experiences mainly because so many parents get such dire prognoses that it is hard to find hope in the middle of such bad news. Many doctors have poor bedside manners and others take the time to explain difficult medical technology. I just want others who are going through this to know they are not alone in their experiences so, I will be chronicling a few of the appointments and experiences.

It is by divine appointment that we found out about Lily's condition. I went to the doctor for a normal check-up at around 28 weeks of pregnancy and as I waited to see the doctor my friend (who is also the sonogram technician at my doctor's office) stopped in the waiting room to see how I was doing. She asked if I had had my 3D sonogram yet and I told her no, that I thought it would be scheduled for much later on in the pregnancy. She then checked her appointment calendar and discovered that she could do the 3D right then! So, I called my husband and he rushed over to the doctor's office with our two other children.

Sweetest baby feet!

We all crowded around the monitor as my friend scanned pictures of Lily and pointed out her features. We watched her suck her thumb and grab her feet. Lorelei and Lucas were extremely excited to see their baby sister! I did notice that during scans of the head that my friend took sometime to measure dark spots in the head area, but she never let on that anything was out of the ordinary. In talking to her later, she said she saw the enlarged ventricles, but tried her absolute best not to become alarmed or attempt to scare us. She was holding out hope that what she saw and measured was a mistake. What incredible courage she had to treat the situation with dignity and professionalism! She calmly printed pictures of the concerning areas and escorted us to the exam room so we could meet with the doctor. The whole time she remained positive and did not cry, although she later expressed her desire to come into the room with us and hold my hand.

In the exam room, our doctor explained that something concerning showed up on the scans and that he felt we should go see a specialist to get more information on the images. He readily admitted that he did not have enough knowledge about enlarged ventricles to make a diagnosis, prognosis, and treatment plan. He encouraged us not to worry and that we would find more answers at the specialist's office.

Both of these medical professionals explained the situation with courtesy and concern, making sure not to worry us. I felt they truly cared about our situation and encouraged us to call them if we had anymore questions. My friend told me everything would be fine and that worrying would not be good for me or the baby. She said many times poor image quality was often to blame for misdiagnosis. They both said they would be praying for good news and a continued healthy pregnancy.

What is even more amazing to me about the whole experience is the divine intervention of it all. If not for His intervention, we might never have known anything was wrong and been unable to help her and prepare for her arrival. Lily certainly would have had cerebral palsy if she had been delivered vaginally and if she had not been taken to the NICU shortly after birth she might have died. The Lord purposefully placed me in that doctor's office on the day my friend was working. He skillfully arranged for her to conveniently walk past the waiting room, notice me, and sit down for a short conversation. He slyly cleared her normally packed schedule to allow for the sonogram. And He predestined my husband to be home from work on that very day. The Lord had this planned for my life and knew what my husband and I would need to accept his will - a good friend and an excellent physician with Christ-centered, compassionate hearts. What others see as coincidence, we see as divine appointment.

It Takes a Village

2012-03-27T19:35:00.000-07:00

Splish splash in the tub!

Physical Therapy for a Child with Disabilites

This week, Lily has started wearing "Big Girl Shoes". And while her progress is slow, it is still so very exciting! There are so many things she can do now and her personality is blossoming. She has quite a temper and doesn't mind letting you know when she is unhappy. Not only will she tell you "no", but she will also tell you to "stop". And her favorite people to boss around are her physical therapists.

Twice a week Lily has physical therapy. Her therapist works with her at the day care facility she attends and in our home. This can be quite a scheduling mess as my husband and I try to fit in the activities of our other two children, church, work, doctor appointments, community responsibilities, and time for ourselves. But our physical therapist is wonderful about working with us and accommodating our extremely hectic schedule. And with this many visits, it is easy to see how Lily is able to easily recognize the face and voice of her therapist. Sometimes Lily reacts to her with excitement and playfulness, while other times she reacts with anger and frustration. Unfortunately, the physical therapist is used to these reactions from all her patients because she is tasked with the responsibility of forcing the children to do what is not natural or comfortable for them. And Lily is no different. Because of muscle weakness, Lily has an extremely hard time using her lower body and left hand. She is easily tired and frustrated, often crying out in anger and pain. But her physical therapist continues to push Lily and us. She encourages us to continue to fight the weakness and the exhaustion and the frustration. Lily not only needs her loving family in her corner, cheering her on, but she also needs the therapist, challenging her abilities. The physical therapist has shown me the intricate, tender art of tough-love for the special needs child.

Lily playing with her Daddy!

In addition to a physical therapist, Miss Lily Pad also requires a developmental therapist. While the physical therapist works on Lily's muscular movement, strength, and endurance, the developmental therapist works on Lily's developmental milestones such as verbal skills, fine motor skills, language recognition, and cognitive learning. The developmental therapist visits us once a week. Again, this is in addition to the physical therapist and other doctor appointments Lily requires. This, of course, adds to our busy weekly agenda, but the developmental therapist is excellent about working with our family and remaining flexible in scheduling. And Lily recognizes the face and voice of this therapist as well, however Lily does a lot less crying during these therapy sessions. During this time, we get to focus on the therapeutic benefits of creative play. My husband, myself, Lily, the therapist, and sometimes our other two children get in the floor together and just play, laugh, and be silly while teaching Lily Pad. The developmental therapist has taught me that a special needs child needs LOTS of silliness and play.

In any given week, Lily may have from one to three doctor appointments. There are weeks when we have none, which is nice because it used to be a weekly event. She is currently being seen by an optometrist, a pediatrician, a neurologist, a dentist, and a physical therapy evaluator. Recently, we have dropped the hematologist from the cast because Lily has not had another stroke. All of these physicians work in concert to provide Lily with the attention and care she requires. And it is comforting to have loving, knowledgeable, and understanding doctors looking out for Lily. These physicians have taught me how individual professionals can harmonize with others to bring total care for the special needs child.

During the day, Lily attends a daycare that advocates for the special needs child. Lily is still in the infant room at her daycare because she cannot walk and because of her other physical needs. And the daycare providers have never pressured me into advancing Lily to an older class for which she was not yet prepared. They have been more than accommodating in allowing the physical therapist and other supporting staff to visit Lily at the daycare. The caretakers in Lily's class have also undergone training by the physical therapist in handling, teaching, supporting, and challenging Lily. In addition, they have helped to alleviate some of the financial burden that comes with raising a special needs child by never charging us a higher fee for her specialized care and even giving us fee forgiveness when Lily was hospitalized and recovering from her shunt surgeries. This group even raised money to help our family. They love Lily and spoil her and treat her the way I would treat her. These caretakers have taught me about mercy and kindness, both which are greatly needed by the special needs child.

I guess what I am mainly reflecting on this evening is how one child can bring together an array of individuals from various backgrounds, education levels, and talents. Each individual has a detailed role in Lily's development while also playing an integral role in the team effort approach to her care. Raising a special needs child not only requires loving parents but it also requires a village of professionals to nurture the growth of our sweet Lily Pad.

Tell me you love me

2012-02-12T19:01:00.000-08:00

Lily is now doing something new. She is talking her lips off!!! She is absolutely loving the talking thing. She says "mama", "dada", "stop", "go", and "dog". We are so super excited about this wonderful new boost in her language development. And I am slowly learning something new about infant development; babies do not naturally develop in a consistent incline.

In fact, their development is often staggered and out of order. For example, over the past three months we have seen Lily make huge strides in her gross and fine motor skills. Suddenly, she is able to crawl over obstacles, up the stairs, pull up on the furniture, and take a few steps with help. However, we have seen very little language development. And I have been extremely concerned about her inability to communicate with us. The therapists and doctors have told us not to be concerned, that she would eventually catch up.

So, in true over-achiever fashion, I have been talking Lily's ear off! I am constantly pointing and naming things, faces, pictures, actions,
animals, you name it! Perhaps she has not done much talking up until now because her mom has been talking for her. Whatever the reason for this sudden boost, I am thankful.

On the other side of this coin is big sister Lorelei who has recently discovered the wonderful world of the telephone call. She will make a bag of popcorn and then spend hours on the phone with her other third grade friends, friends she had just seen a few hours ago at school! I remember when Lorelei was a baby and it seems they grow up too fast. In the blink of an eye they are nine years old, talking on the phone with their girlfriends. Or, they are sixteen, heading out in the family car by themselves for the first time. And someday, some unfortunate day, they will be grown and gone. How I dread those days!

And one day Lily Pad will call her friends on the phone and tell me "no" and ask for a cell phone. Although I do not wish for her to grow up, I do pray for the day she will be able to tell me she loves me.

Appreciate the Mess

2012-01-31T19:16:00.000-08:00

Big sister dressed me up as a princess!

Even though Lily's situation started out very serious and negative, she is a blossoming 15 and a half month old today! She has finally learned to crawl which was accomplished with great effort and many hours with her physical therapist. I was quite worried that she might not ever be able to use her muscles in a coordinated way because of the neurological damage.

When we started the process of teaching her how to crawl we noticed she had a lot of muscle weakness on the left side of her body and that her torso muscles in general were weak. So, various exercises were given to us as homework. My husband and I used every available moment helping Lily build strength. Ah, how I fondly remember doing choo-choo trains around the living room floor. We even got the older siblings in on the act. Time was also spent tackling obstacles which were painful physically for her and emotionally for us.

Just like with any type of physical training, there is some amount of muscle stress and pain involved. Lily would cry quite a bit during these sessions and so did I. It is very frustrating having to force your child to approach tasks that hurt her, but also strengthen her. And there were many times that I just wanted to quite, but quiting is not an option for us.

To keep going I often reminded myself of 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.'" Even though I could not understand it at the time, I knew that from this pain would come great rejoicing because this was part of the plan. Sweetest Lily has things to do here for the Lord and her story is meant to encourage others. The best way for her to be a true witness of the healing power of prayer is for her to do everything the doctors said she would not.

When my other two children were small, I complained about the messes they made and the things they would get into and how they never would stay still. And I often hear others complain about the perils of parenthood in the same manner. "My house is never clean because of my kids," or "Where did that kid go now? I am always chasing after him," are common gripes. I have changed my view of parenting complaints. Instead I think to myself, "What a wonderful blessing to chase after Lily Pad down the hall!" and "Look what Lily Pad has dragged out now! Isn't it wonderful?" I GET to "complain" about the mess she makes and the fact she plays with the door stoppers and is pulling at the curtains and attempting to climb up the stairs. These small messes are what I appreciate now because they were never promised to me.

This was FOR me.

2012-01-26T19:09:00.000-08:00

Coping daily with Infant Stoke...

Over the past few weeks, our pastor has been preaching a new series called I Want to Change. So, last week he illustrated how it feels to be bogged down in your "baggage", how certain circumstances can weigh you down, by calling forward to the stage a rather tall, muscular young man. The pastor then jumped onto the man's back. At first we started laughing at his attempt to dramatize his message. But then the figurative weight of what he was literally doing shook my heart.

As soon as Lily's devastating diagnosis was given to me, a large boulder was placed on my chest and I felt as though crushed under its weight. I have never experienced such a feeling in my whole life. And not only did the tonnage of the news pull me down, it also hovered in the air, choked the life out of my lungs, clouded the thoughts in my mind, and incapacitated me with fear. It is hard to describe, but suddenly I was a small child crouched in a corner and ominously closing in on me was a ferocious beast, one bent on ripping me apart. This is how the news of the diagnosis settled into my life. And I it took away my ability to function. It was a daily struggle to put one foot in front of the other. I shut down. And this was not depression in that I felt hopeless about life. This was different. This choked and suffocated and blinded and hurt.

When the pastor jumped on that man's back, I immediately felt the suffocation I had felt during those dark days shortly after Lily's diagnosis was delivered. I began crying. It was a horrible memory for me to relive, but it was necessary because the Lord showed me that this whole situation was not about me and how I felt. This was about Him. He did not do this to me, but for me, to change me and to change others. God specifically planned for this to happen to Lily so she could be a testament to His glory, prove that man does not know everything, and provide encouragement to His people.

Periodically, I experience the blinding hurt of those days. But it's ok. It's over now and God has His testimony and His glory. And the best part is that it is not over. He has more work to do and I know Lily is going to help Him!

Poem about Perspective

2012-01-26T10:51:00.000-08:00

WELCOME TO HOLLAND

Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Lily Pad's Place: Research

2012-01-18T19:21:00.000-08:00

Lily Pad's Place: Research: I have been doing much research on Neonatal Stroke, causes, and prognosis. From the scholarly articles and studies I have read, the followi...

Is there something wrong with me???

2012-01-14T18:13:00.000-08:00

So, I must be honest here. When I found out we were expecting baby #3 I wasn't exactly thrilled. Shortly before I found out I was pregnant, life had become predictable, safe, and routine, all things I adore. Lorelei and Lucas were old enough that they didn’t need me to feed them and soothe them every minute of the day. Diaper duty was done and baby food was over. The idea of starting over with a new baby truly frightened me. For many years I had struggled with anxiety and child-rearing brought out my worst fears. Fears of sleep deprivation, potentially fussy baby, and lack of predictable routine crept into my mind and choked out the happiness I shared with my husband and two children. But so far I had learned to cope and manage my anxiety and life being utterly “normal” helped. This new pregnancy, though, certainly began testing my coping skills from the very beginning. I dreaded starting over, disrupting my life, tangling my plans, and up-heaving my household. Tears of worry flooded my eyes and anxiety strangled my heart. I was an old dog of thirty-five and I did not want to learn any new tricks.

Over the next several days I spent a great deal of time hashing out my worries with my friends, my family, and my husband. Talking about my fears helped me cope and I soon realized that the fearfulness I felt in my heart was shared by my girlfriends who had faced a similar situation. The third “surprise” baby is common in a military town where large families of three or more children were commonplace. Mothers with multiple children often commented how two-kid moms, rare in our town, had it so "easy".

Unfortunately my anxiety and fear did not go away. It attacked my heart and mind, completely consuming my thoughts and emotions. And, to be honest, it scared me greatly. What kind of woman is frightened of her unborn child? Is this not the mark of a bad mother? Guilt plagued me because I literally could not get happy about having baby three. I was certain something must be wrong with me. Did other women feel this way? Is this normal? What do I do about this? My husband continued to encourage me daily, assuring me that all would be fine; it was just another special blessing God had given to us. He and I were good parents. Lorelei and Lucas turned out great and they were wonderful babies and Bo was confident Baby Three would be the same. Still the anxiety and fear stayed with me throughout my pregnancy. I slept little and smiled even less.

The guilt at not feeling happiness in my new pregnancy was demoralizing and it only fueled the vicious cycle of anxiety. Still, prayer and thanksgiving became part of my daily lexicon. Daily devotions were often used to calm my restless spirit and my emotions. Spending quite time in the presence of God allowed me to focus on the blessings in my life instead of the future worries I harbored; worries about circumstances I could not control or predict. How foolish we can be when we consider all that God has given us! People spend time worrying instead of living in the comfort and security of God’s embrace and loving will for our lives.