Wandering: The Space Between

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!

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!

Drink and Donate

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!

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!

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!