This morning I was in my studio working on a project. Don was gone and Alex was in his room…and there was no television or radio on. Just me and the quiet…and God. We were doing some visiting and discussing, He and I. I need some guidance this morning. All of a sudden, I heard what sounded like a bird convention outside the big window. All this tweeting and squawking! It was so unusual, I got up and went over to the window to see what was taking place. *********Last year Pop gave me the neatest bird feeder. It is made so if the squirrels jump on the ledge around the seed, it collapses and they fall off. It was funny to watch for a while…but they don’t even bother anymore! Levi and I have enjoyed seeing the birds come and go. He and Pa have the job of seeing that it is kept filled.Our favorite visitor is Daddy Redbird! We know he’s the daddy because he is bright red! There are finches and sparrows that come, too. But, they are rarely there all at the same time. Usually one group will come and then leave and another will drop in for a snack! We have even begun to be able to identify the sound of the Daddy Redbird. Many times we will hear him before we see him. Just recently Levi was able to detect Mama Redbird. She’s harder to see, she just blends in. But, I can see they are almost always together! *********** Well. Back to today. In the trees were about 8 birds…all kinds! And, they were flitting and fluttering and obviously very riled up! All of them. It was something I had never seen! And, such noise….they were all telling the news! But…what was the news? Why were they acting like this? I am in my studio every day and I have never seen this before. Then I got closer to the window and looked down. There is a bare spot where the seed falls to the ground. I thought maybe there was a hurt bird there. But NO! Not that! There was something else there! Bet you guessed it…a sneaky, slithery snake going right under the feeder and disappearing into the jasmine. I have had all the snake business I want…but there he was. And, he begged to be dealt with. So, I went and got a shovel. Then I went and got Alex. Then I went and stood on the doorstep and watched…and watched…and watched. Alex helped me watch! I ventured into the front path, but not too far. I didn’t want him to come at me if I wasn’t prepared. I asked him kindly to come out into the path so that I could kill him…but, he declined. And, you can be sure I was not going in there to look for him. Alex decided we should let the snake go on with his life and that we should not put ourselves in danger. And, so, that’s what we did. But, perhaps you can answer this for me? Do birds warn each other of danger? Do you think that’s what they were doing…warning all the other birds and squirrel friends that a snake was nearby. Because, for all the world, that’s exactly what it sounded and looked like to me! I know that dogs can sense danger and are attuned to nature’s goings on, but never thought about birds having that sense. I know God designed majestic creatures throughout the earth. I suppose we will only learn in Heaven just how amazing they can be! So, I don’t know if they were trying to get the attention of other critters or not, but they sure got mine! And, then Mr. Snake got it even more! God tells us that everything in His creation is cared for by Him. He says that even a little sparrow doesn’t hop on the ground without Him knowing it.
“I know all the birds of the air; and all that moves in the fields is mine.” Psalm 50:11
And, I suppose He has a purpose in those awful snakes being around, too. But, I sure don’t like them! I went on about my business and prayed that God would send that snake on to a new home…in the deep woods…away from people. The tree stayed quiet for a while…didn’t hear anything! But after an hour or so, I heard that familiar chirp…Sounded like Daddy Redbird. And, so it was. Now this may sound silly to you…but, I prayed right then and asked God to keep that bird right there so I could get a picture of him to share with you. And, do you know I got about 10? Daddy Redbird even played peek-a-boo with me! Sorry, they’re not too clear…made through the window. You surely didn’t think I was going back out in that jasmine to get a pic, now did ya?
I have a several Pinterest boards (43 to be exact). I am a collector at heart…not a hoarder…a collector. Much nicer sounding, don’t you think? There are so many things I read and think, “One day, I’m going to want to read that again.” So, I save it. The sayings and verses I pulled from for this post are titled ‘Things I Know For Sure’ and ‘Woman of God’ and ‘The Bible Tells Me So’. I knew I would find within these boards just the right pics and words to help tell my story today!
This week, I have been battling some health issues. Nothing that a lot of you haven’t gone through, but painful and hard to deal with anyway. This is nothing I want to get graphic about in this forum, but there are times it is impossible to move or even breathe for several seconds. Then it subsides. But, I feel like I look like I’ve all of a sudden gone into a catatonic state. Which can cause folks to stare at you sorta strange like. You know if you just can not move your buggy out of their way IMMEDIATELY, they want to start a fight because you are interrupting their flow! Well!
I got some medicine which will take care of this, but I could not pick it up until Friday morning at 8:00. Friday morning at 10:00, I was responsible for teaching the art of drawing pumpkins and then painting them with Kool-Aid to around 50 children…3 classes…teaching one class at a time. So…on my feet for a good two hours. I was panicked thinking what these kids and their teachers would do if all of a sudden, I zoned out on them like a hippie from the sixtes stoned on weed. (Not that I ever was a hippie from the sixties stoned on weed, but I’ve seen some people who were and they looked s-t-r-a-n-g-e!)
I had problems all through the night before…and got little sleep. But, before I got out of bed…and in the shower….and eating a banana nut muffin….and loading my car…I prayed mightily! I boldly asked My Father to stop this process happening in my body for the time I was going to be working with the children. I didn’t ask Him to take it away completely…just give me a break for a few hours…a respite.
I had to make a stop on the way to pick up some candy for the kids and sure enough…in the store…BAM! it hit me! This one stopped me for a full 30 seconds!But, I got into my car and prayed all the way to school. Well, ‘begging’ may be a better word. And, I told God that I would give Him the glory and praise if He allowed these classes to take place without me ‘zoning out’ in front of the teachers and most importantly, the kids.
And, my friends, I am here to testify to you that from the second I left my car at school…I had not one, single pain! Not even a twinge! No need to ‘space out’ except for the fact that our room was covered in pumpkins and we just may have gotten a little ‘high’ from the smell of all the Kool-aid. We probably went through 50 packets! Some of the kids even asked if they could lick the table!!!!
We finished our project and I was able to clean up. Well everything except my hands! They, I fear, are forever stained red and orange! I tried everything to get it off…baby wipes, clorox wipes, soap, goof off, fingernail polish remover, and finally a magic eraser! The magic eraser worked the best!
What fun we had! The joy of seeing the colors on the paper and experiencing a different type of art was such a good time! I’m so blessed to be able to do this.
I gathered my bins of supplies and walked to the car. After putting my supplies in the back, I went around to my car door. BAM! There it was, back with a vengence! After I was able to move again, I got in the car, bowed my head, and thanked God!
Isn’t He amazing? Isn’t He wonderful! It thrills me to the bottom of my soul to think that the Master and Lord of the universe, who has whole worlds and heavens and oceans to keep an eye on…cared about me, a mere speck in the face of all humanity. He cared enough about what I needed Friday morning to touch me and care for me. He heard my prayer…along with the millions of people praying for oh! so much more important things than I was asking for. He heard me, as He heard them all.
“…you have not because you ask not.” James 4:2
And, that is why I felt compelled to share with you that He does listen and He does hear. And, true, He doesn’t always answer our prayers just like we want Him to. And, that’s where faith comes in…trusting that He knows what we need better than we do! That’s a hard one, isn’t it? I think He wants us to be specific when we pray, don’t you? Generalities cover so much. I think He wants to hear exactly what it is we think we need. And, perhaps, being specific helps us to put things in a better perspective in our own minds. Well, today, I was specific, and He so graciously granted my request. I thank Him, and I praise Him…and I am humbled.
I end this post by sharing one of the most comforting passages of scripture to me. A friend shared it with me years ago, when I really did feel I was being consumed. And, truth is, sometimes I still feel that way at times. I’m sure you do, too. We all have those time that it seems as if everything and everybody is ganging up on us and we are going under…FAST! Remember this promise when you feel this way. I know, for sure, it is truth!
*…(res-pit)…a delay or cessation for a time, especially of anything distressing or trying ; an interval of relief”
I had an early doctor’s appointment today. And while I was there I kept running into people who I found interesting. Nothing major…just little things I noticed today.
As I was pulling into the parking lot, there was a car in front of me…going very slowly. I also noticed that a first parking place under a shady tree was about to come available. So, I just sat and waited for the driver to pull out. As I waited, I noticed Mr. Slow Driver pull on down and pull into a parking place. Then he backed out of that space…slowly. And, pulled into another. Then he backed out of that one. Next thing I know, he is heading back toward me…and sure enough…he whipped that old Buick into that first parking place…with me sitting there waiting…with my blinker on! It struck me as funny..instead of irritating me. I just went on down to the place he pulled out of first. When he got out of his car, he must have been 90 years old. I ended up walking with him to the office. “Boy, you sure lucked up to get that nice shady spot,” I said. “Oh, Jesus was saving it for me!” he replied. I don’t think he even realized what he had done. That was his space and he was going for it! I held the door for him and the next door and then let him sign in before me. Finally, he was all set. I signed in and sat down. “Thank you, Lord, for letting me be gracious to this old man..especially since it was YOU saving the parking place for him!!!”
As I sat in the waiting room, I noticed a mother with her daughter. The daughter had a little baby. He was fussy and whining, and they were doing their best to pacify him and make him happy. But, both were getting frustrated. It wasn’t long before the Grandmother came out from seeing the doctor. That baby saw her, let out a yelp and got the biggest smile on his face. Little arms reached out to her, and she took him. Immediately the whining and crying stopped! He was where he wanted to be! Oh, it’s great to have ‘grandmother power’!
I didn’t have to wait too long. Then it was off to the lab. Blood work every 4 months…and these old veins don’t get a bit more cooperative! But, Ms. Lab Tech was so kind and happened to get my blood on the third stick…in my hand! She felt so bad. It takes so little to be kind…especially when you are causing pain!
As I waited there was a lady sitting in the room with me. Somehow, we got to talking about how everything today is computerized. Helper Lady began telling me about how she helped several elderly people who had to do things online…and they had no idea even how to open a computer! She said that she had found a way to help people while staying home to care for her mother. Isn’t that the nicest thing? It’s just the little things people do that mean so much. Have you ever thought about what those with no computer knowledge do in this day and time? As she said, when our generation dies, that should not be a problem since everyone younger than us has grown up with computers. Interesting, I thought.
Then, as I sat back in the lab waiting room, a older man from our church came in. Mr. Joe makes honey and molasses and sells it. It is divine. We talked a little about Pop…they are in the same Sunday school class. And, then he began to tell me how much better molasses is for you than even honey. It was very interesting. He is such a fine man, and I enjoyed talking to him.
He got called out and a young man came in. He was huffing and puffing. He was not happy. Tired Man was having to wait too long. He said he was tired and had worked all night. I’m glad I wasn’t the lab tech going to draw his blood or the doctor or nurse who worked with him later. This is for sure…it was a good thing he had a wad of gum in his mouth to chomp on, because he was that mad! Good for him…not for me. One of the most annoying sounds in the world to me is to hear someone smacking and popping and chomping their gum! It is rude, people. If you could only hear what it sounds like. Not that this young man cared a bit!!!
And, this is the truth, so help me! When he got up and left…a woman with a bag of knitting came in and sat down. Y’all. Y’all, if she burped one time, she burped twenty! Not like hiccups…but those kind that my boys used to do to see who could be the loudest or the grossest! And Burping Woman never even looked up from her knitting! Never!
I heard a voice in the hallway that sounded familiar. Sure enough, it was a girl that I taught at church…she and her children. She has always been just a delight and is now a drug rep . It was good to speak to her. Our paths do not cross too often anymore. Thanks for the smiles, CWH.
One more thing. As I was still in the lab area, I overheard another Doctor tell his nurse that he saw an obituary for one of his patients in the paper this morning. He told her to be sure they sent a card, and called the family. I though that was so kind.
I finally saw my Doc. He was happy, as he always is. Got some new meds and some tests set up.
I thought it was just an interesting mix of people this morning. No matter where you go, there are always people who are old and feeble, kind and helpful, rude and complaining. There are always those that look for ways to help, and those who are kind and caring in the jobs they perform. There are those who are rushed and ‘put out’ when things don’t go their way. I think we all get that way at times. I pray to become more aware of how other people perceive me. There were 3 people I ran into this morning that knew me and knew I claimed to be a follower of Jesus. Did the others I saw see that in me? What kind of impression did I leave with them this morning? I hope I was kind and patient and helpful.
And, perhaps, those who were annoying to me this morning were facing greater battles than what was evident. Who knows what they are dealing with daily? Only God…perhaps their doctors. I am not always patient and kind and helpful. There are so many times I fail. I have to ask for forgiveness and start all over again.
I will say, in my behalf…I exercised a GREAT deal of restraint with Burping Woman, and Gum Chomping Tired Man.
“Oh, these are the people in your neighborhood,
In your neighborhood,
In your neigh-bor-ho-od,
These are the people in your neighborhood,
They’re the people that you meet,
When you’re walking down the street,
They’re the people that you meet each day! (from: Sesame Street)
I have not been on FB much in the past few days…busy week! Today, however, I looked to see what friends were up to on FB, and found some things of interest on the pages I subscribe to.
First I saw that…
This brings back all kinds of memories for this Mom. I have a son who survived cancer. He is a wonderful son…handsome and talented…with a beautiful wife, Suzanne and son, Levi. He is 39 years old and a paramedic and professional photographer.
Time was, 36 years ago, that we didn’t think we would see him live to turn 4 or 5. His cancer was a ganglioneuroblastoma.
******** What is neuroblastoma? Neuroblastomas are cancers that start in early nerve cells (called neuroblasts) of the sympathetic nervous system, so they can be found anywhere along this system. A little more than 1 out of 3 neuroblastomas start in the adrenal glands. This type of cancer occurs most often in infants and young children, under the age of 2 years. It is rarely found in children older than 10 years. It has an incidence of about 650 cases in the US per year.
There is a wide range in how neuroblastomas behave. Some grow and spread quickly, while others grow slowly. Sometimes, in very young children, the cancer cells die for no reason and the tumor goes away on its own. ).
Ganglioneuroblastoma is a tumor that has both malignant and benign parts. It contains neuroblasts (immature nerve cells) that can grow and spread abnormally, similar to neuroblastoma, as well as areas of more mature tissue that are similar to ganglioneuroma.
Signs and Symptoms The effects of neuroblastoma can vary widely depending on where the disease first started and how much it has spread to other parts of the body. The first symptoms are often vague and may include irritability, fatigue, loss of appetite, and fever. But because these early warning signs can develop gradually and mimic those of other common childhood illnesses, neuroblastoma can be difficult to diagnose.
In young children, neuroblastoma often is discovered when a parent or doctor feels an unusual lump or mass somewhere in the child’s body — most often in the abdomen, though tumors also can appear in the neck, chest, and elsewhere.
The most common signs of neuroblastoma are caused by the tumor pressing on nearby tissues as it grows or by the cancer spreading to other areas. These signs vary depending on how much the cancer has grown and where it has spread.
For example, a child may have:
***a swollen stomach, abdominal pain, and decreased appetite (if the tumor is in the abdomen) ***bone pain or soreness, black eyes, bruises, and pale skin (if the cancer has spread to the bones) ***weakness, numbness, inability to move a body part, or difficulty walking (if the cancer presses on the spinal cord) ***drooping eyelid, unequal pupils, sweating, and red skin, which are signs of nerve damage in the neck known as Horner’s syndrome (if the tumor is in the neck) ***difficulty breathing (if the cancer is in the chest) *************
He was diagnosed at age 3, which is usually quite late as far as survival goes. But, for some reason, the tumor, on his adrenal gland they say he was born with, did not start growing until shortly before we found it. At removal, it was the size of a grapefruit!
One Saturday morning, I was giving a graduation luncheon for a dear friend of the family. Because it was at a nearby motel banquet hall, I dropped little Adam off to stay with my mother. I went a little early to get him settled. He had been running a few and was coughing, red eyes, the whole bit. I did not plan on taking him to the doctor. Being a nurse myself, I usually just found the right meds or got the doctor to call something in. But, my mother…God bless her soul….my mother said, “Tonja, it’s the weekend, what if he gets any worse? Maybe you should run him by and let them get him started on some meds.” Something rang true about this, and so I did. The nurse said for us to come right on over and he could see him quickly.
We did. The doctor looked in his throat and in his nose and listened to his chest. Yes, upper respiratory infection. but before he handed him back to me, he did a once over on his body and mashed all around on his body. Then he looked at me and said, “Come here and feel this, Tonja.” And, I did. I said, “I sure hope that’s his spleen.” The doctor looked at me and said, “So do I…but I don’t think it is. I want you to go straight to the hospital…right now…and check in. I will see you there in about an hour.” “I said, I am giving a luncheon in an hour for 20 people. I can’t cancel now. I can be there early afternoon.” He said get there as soon as I could. *****LIFE LESSON: Always listen to your Mother! She knows!*****
We went back to my mother’s house and she took him to my house and got his clothes and mine. I did the luncheon. Mom and I left for the hospital and I stopped by Don’s work to tell him where I was going. It was in that moment that I told him that the realization struck me that my life had totally turned itself around and would never be the same.
We were admitted and tests run. By late evening, we knew that it was most likely cancer. By early afternoon on Sunday, it was positive. We were dismissed from the hospital and went home to pack…final destination Birmingham Children’s Hospital. Don was sick from a bad stomach virus, so his sister drove the us to Birmingham. She, Adam and I in the front…Don laying down in the back. We dropped him at a motel and went to the hospital down the street.
This is the part that still gives me terrors when I remember. We walked in and were admitted and they told us to go to the 6th floor and someone would meet us. We rode up the elevator and got off. All I could see were bald headed children. Some walking with IV poles, some being pulled in wagons, some in wheelchairs, and some carried by parents. I turned around, got back on the elevator. I took it to the first floor and walked out of the hospital toward the car. There was no way I was letting my child go in there. No way I was going to put him through this. No, not going to do it. I sat in the car and just got myself together. Talked to God…He talked to me. Beth was playing with Adam in the parking lot.
As hard as the unthinkable is to deal with…and as much as you want it to not be so…there always comes that realization. This is real. This is happening. Happening now…so deal. And, that’s what I did. I took a deep breath and walked back in…up the elevator and through the doors. This time a nurse was there to greet us. She said, “I have been looking for y’all. I was afraid you’d gotten lost.” “We did,”I said. “But we managed to find our way.”
And, that’s what we did for the next 8 or nine years…Children’s Hospital of Alabama became a second home. There were also hospitals in Atlanta. Surgery upon surgery…treatment upon treatment…pain and loneliness and fear. And, always God. And always family and friends. And, Adam has been cancer free for 30 years now. You can play tic-tac-toe on his belly from the scars of all the surgery…small price to pay. From an original diagnosis of perhaps a year to live, God has granted us grace and mercy and strength and growth and peace. We did not deserve it anymore that another child riding in that hall. And, yes the time came when he rode his tricycle down the hall with the other children. No child deserves cancer. No child should ever have to live through this demon attacking their life when they are still innocent children.
But, God kept every promise. And, while we knew that a gift of healing could mean God taking him to Heaven…we boldly prayed for God to take control of Adam’s life and hold him in His arms and love him with all the love He had. And, that’s just what He did. Thanks go to the doctors, the nurses, the family, the friends, even the strangers who we never knew. But, God!
As I continued to scroll through FB, I was surprised to see this picture …
Surprised, because this is what I dealt with with my youngest son. Ian was born with a unilateral cleft lip and a bilateral cleft palate. This means that only one side of the lip was affected, but both sides of the palate were cleft.
********** Orofacial clefts are birth defects in which there is an opening in the lip and/or palate (roof of the mouth) that is caused by incomplete development during early fetal formation.
Cleft lip and cleft palate occur in about 1 or 2 of every 1,000 babies born in the United States each year, making it one of the most common major birth defects. Clefts occur more often in children of Asian, Latino, or Native American descent.
The good news is that both cleft lip and cleft palate are treatable. Most kids born with these can have surgery to repair these defects within the first 12-18 months of life.
The complex needs of a child with cleft lip and cleft palate are best met by an interdisciplinary team of professionals from various specialities who work together. This is a standard of care that begins soon after the child’s birth and continues to adulthood.
The members of the cleft lip and palate treatment team include:
geneticist pediatrician plastic surgeon ear, nose, and throat physician (otolaryngologist) oral surgeon orthodontist dentist speech-language pathologist audiologist nurse social worker psychologist team coordinator **********
I had a natural childbirth, so I was fully aware when Ian was born. The moment he was born, there was a hush over the delivery room. I asked the doctor to show me the baby. He then held him up for me to see. I was prepared to see another sweet baby boy…but not prepared for what I was faced with. I went into shock and don’t remember much of the next few minutes. But, that passed quickly enough and Don and I had to quickly come to terms with how to care for this baby boy. I knew nothing about clefts. I had not even seen an unrepaired one before, even through all of nursing school. But, I was soon to find out way more than I ever desired to know. As the info says above, the path to correction includes many different areas. And, depending on the severity, the path can be a long, drawn out road. Ian’s first surgery was when he was 3 months old, to repair his lip. At 14 months his palate was repaired.
He has had revisions, repairs to fistulas, bone grafts to the gums, major orthodontics, and the list goes on and on. He has had 12 operations with the last one being just 2 years ago.
We were blessed to be led to a wonderful program at the University of NC in Chapel Hill. They have performed all but 2 of his surgeries…and led Ian to another excellent doctor in Birmingham for his last 2 procedures. Will there be more? At this point, we are not sure. As Ian is 31 now, these decisions are in his hands.
As you know, children can be cruel…sometimes without meaning to. Don and I decided that we would be proactive about this so that Ian would be prepared when the time came that someone would mention his scar. We explained to him that his face did not finish growing before he was born, and so the doctor just had to sew it up…just like when you get a rip in your pants. Because we felt that his speech would be the most noticeable thing to draw attention to the problem, he started in speech therapy at age 18 months…right when he was learning how to form words. He had to learn how to talk without sounding nasal. And, we and his speech therapist were very firm with him on this. He had to learn the proper way to speak. And, he did beautifully! He has no hint…and never has had of nasal speech that is sometimes associated with clefts.
We prayed from the very first days that God would bless Ian with a personality that would outshine his physical appearance, and He answered us by giving him a bold, fun loving spirit. Never one to meet a stranger, he talked to everyone. He had that fighting spirit from day one. But, the day did come when some of his friends in kindergarten started asking him why he had that scar on his lip…why was it there? Ian handled it beautifully. He went to his teacher and asked her if he could tell his whole class something. She let him…and she told me later that this is what he said. “I have a scar on my lip because my face didn’t finish growing, so the doctor sewed it up. It’s just a little scar. So don’t ask me again!” And, that was that. Nothing else was ever said that we know of. His friends grew up knowing why and it has never made any difference!
Ian is VP of a graphic design and advertising agency in Birmingham. He is married and has a beautiful stepson, Jackson. To this Mother, he is as handsome as he can be…and his wife, Tina, thinks so too!
As hard as it was raising three boys…even without major medical issues…great lessons were learned. I think that every crisis we encounter is in our lives to teach us a lesson. The greatest tragedy is failing to learn. Because the boys and their brothers had major medical issues…it taught them to be kind and loving to those who looked or acted differently. We learned how to pray…specifically for what we needed. I would make a poster and put it on our refrigerator with 2 columns…WHAT WE NEED and WHAT GOD DID. As needs were met, we filled it in and it was a tangible reminder that God will do what He says He will do! He doesn’t promise to give us what we WANT…just what we NEED. When you have the evidence staring you in the face everyday, it’s hard not to know the truth of His words! We learned to search the Bible for verses that would speak to us. When Adam was facing one of his operations, we found the verse that says He will always be with us wherever we go. This concerned him and he said I just wish He would pat me on the shoulder so I would know that He’s really there. I boldly told him that God could do that. “Just wait,” I told him,” you will feel Him. He will pat you on the shoulder.” So, his last words to me as he went into surgery were, “Are you sure He is going to be there?” “I promise!” I said. And, I did some powerful praying asking God to let that little 6 year old boy feel His hand. When Adam was brought back to the room, still a little groggy, the very first words out of his mouth were, “Mama, He was there! He patted me the whole time!” How can you not believe in the presence of God when He answers prayers like this. Such a tiny thing…but my God is aware of all His children and everyone of their needs!
It became one of our favorite teaching tools through out their time at home to ask, “What lesson did you learn?” no matter if it was a problem with friends or school or illness.
Lest I give you the wrong impression…there were also tears and questions and anger and frustration. There were times we cried out that we were angry and that God was not fair! There were times I wanted to run away and hide from it all. I freely told God just how I felt. “Why did you do this to us?” And, you know…God listened and He heard me and He understood. He knew my feelings before I even told Him. He told me to unload my burdens to Him…and I did. And still do. He listens. He holds me. He comforts me. And, He gives me grace and mercy and peace.
And, I must mention in closing that there is also another special day that is near to our hearts…
National Rare Diseases Day!
And this would include my third son, Alex. He was diagnosed with Cerebellar Atrophy when he was in the eighth grade and his life was never the same. There is very little research about the disease. Most of what is known is how it affects people in the long run. It is extremely rare for it to strike a young person, usually being diagnosed in middle age. There is no treatment…only managing symptoms. Alex is in severe pain daily, has very little balance, sees double all the time and has nystagmus…which is the eye jumping continuously. It is not a disease that affects the mind in any way…only physical traits. The National Rare Disease Day is held annually on February 28, which happens to be Don’s birthday.
Just a little info:
***a disease is considered RARE if it affects less than 200,000 at any given time
***there are over 7000 Rare Diseases identified in America
***there are approximately 30 million people in the US who suffer from a rare disease…that is 1 in 10 Americans
***50% of these are children
***50% of the diseases do not have any organization for information or support for research
One Sunday night Don was asked to give his testimony in our church. He stood and gave praise to God for his healing of Adam. He told how thankful we were that God was meeting all our needs with Ian. And, he said how thankful we were that our middle son was healthy and strong. Less than 2 years later, Alex was diagnosed with this horrible disease.
We don’t understand…and that is OK. It is the path that we were asked to walk. These are the 3 boys…now men, whom God chose to become members of our family. These are the boys He wanted in our family of grandparents and aunts and uncles. These are the boys He wanted raised in the knowledge of the Lord at Southside Baptist Church, by staff and church family and friends. And, so our lives have always been a little different, but so many blessings I could never count them all. Oh, the wonderful things we know now that we may never have learned any other way.
My heart breaks for those afflicted with Childhood Cancer. I cringe whenever it is mentioned. I am so sad when I see a child going through the countless stages of treatment for cleft lip and palate. I pray that they will have strength and courage for both of these. And, my heart breaks whenever I hear someone say that they can not find much information on what is wrong with a loved one. Or they cannot find a doctor to help. For we have been there. We have taken Alex all over the US searching for doctors with some…any…information to help us. But, sadly, it’s just not there.
I urge you to pray for doctors and nurses who deal in illness and disease every day. I urge you to pray that more research is done on the diseases that sometimes do not even have a name…just a number. I ask that you teach your children that even though someone may look a little different, or talk a little different, or have a bald head, or can’t walk without falling…inside they have feelings just the same as they.
And, I should like to encourage you that if you find yourself in any of these situations or other medical crisis,,,the strength you need will be there. Just ask. There will be hard days, for sure. But look! You will be surprised to see how many people God will use to meet your needs. Keep a record. It will amaze you what God will do. I can tell you this for sure….in the midst of sorrow…there will come joy. There will come joy!
May God bless all those that suffer today. And, may I never take for granted the blessings we have. I pray that He keeps my heart tender to always be concerned about others and be willing to share and help in ways He puts in front of me. Say an extra prayer today for those children dealing with hurts and pain.
I hope maybe this post has enlightened you a little. Sorry for the length, but it is what it is. Isaiah 46:4
This morning I walked back into the building where I spent 20 years of my life…teaching little ones about the world around them and the God who made it all, teaching them to sing praises to God and delight in the movement of their bodies. I retired 5 years ago, and I think I have thought of the children and my fellow teachers almost every day since then. Today, I took my youngest grandson in for the first time.
See, this is a magical place. It is a school where the child is wrapped up in a warm blanket of love and care and direction. There are rules and consequences, as there should always be. But everything here is filtered through God’s plan for teaching and growing little ones into men and women who will one day serve Him. The director leads the rest of the teachers with an attitude of kindness and gentleness….firmness and fairness. And all the teachers follow her lead. Every child is guided to a place of understanding with kind hugs and sweet smiles from their teachers. And, to be real…sometimes this includes sitting in time out or by the fence at recess. And, perhaps even a call to parents. What else would you expect from a lively, excited group of 3, 4, and 5 year olds? And, don’t we all need to be guided back into line at times when we decide to ‘go our own way’?
There is music…which was my area way back when. Now songs and marching and dancing and games are taught by a wonderful teacher who makes me so proud. There are chapel lessons each Friday where the whole school comes together to sing and learn Bible stories.
My sweet Levi went for his first day of Preschool last week. His Mom and Dad took him. I didn’t go. Except in my heart. This was a time for them…and I knew my time would come soon. I wanted to watch that baby strut into his classroom and find his place by his name at the table. I knew there would most likely be a few tears…not from Levi, but from Suzanne! And, there were. But, Levi never looked back. We, his extended family, are so proud of the way in which he meets people and new things…life, really… head on. And, most always with a smile from ear to ear. He’s ready to explore and grow and learn. And, our hearts are overjoyed that God has seen fit for First Presbyterian Preschool to be that place. Now he does have a few things to learn about the sharing bit and pushing folks out of the way if they are standing in a place he feels is meant for him….but that will come. He’s three. He’s a little boy. He has much to learn.
(That’s him in the hat!)
I think when God said that we are to “train a child in the way he should go” He means much more than just teaching. I think it applies to where he spends his time. I think it applies to what he watches on TV and movies. I think it applies to what books are made available for him. I think it applies to what games he plays on a tablet. I think it means we are to keep him in an environment that is filled with those things that we hold dear….those things that God told us were the right ways to live. If our young children are not spending time in those places and with those people who believe the same way…it is because it is not important to us. Or that we are lazy. Because it just takes a little effort to do. As Christian parents and grandparents, this is our command from God.
I know it is much harder to control that as children grow. I raised three boys who were not always where I wanted them to be, nor doing what I wanted them to do. But, there also comes that time when they must make their own decisions, and follow their own hearts. And, they, then, must live with the consequences of those decisions.
Preschool education is all about laying a foundation… especially in teaching a child about God, His wonders, His world, His rules. Knowing that people are happy when they tell stories from the Bible teaches that the Bible is a ‘good book’. Learning thoughts from God’s Word lends a familiarity that will be remembered when they are old enough to read the Bible for themselves. Singing songs about God and Jesus and the natural world all add layer upon layer of information upon which will eventually lead a child to be comfortable enough to always want to know more. These things have a way of being ‘hidden in their hearts’ and pulled to the surface when they are needed. (Has that ever happened to you? Something traumatic or stressful happens and immediately a Bible verse or a hymn or Christian song will pop into your mind? It happens to me quite a lot. I may not can quote chapter and verse, but I know what it says!)
It behooves us, therefore, to make their foundations solid. To filter all they see and do. And, when they do stumble upon something that we don’t think is appropriate (and it WILL happen) we must have an explanation to satisfy them as to why it is not acceptable.
Well, this was not supposed to turn into a sermon. But, sometimes words and thoughts come as I am writing and I feel compelled to share. So, please forgive the ‘preachy parts.” That does not mean I don’t fully believe every word I just wrote. I do.
It is just a blessing and a wonderful, sweet gift from God that my youngest grandson gets to experience all the goodness that is overflowing in his preschool.
(And, yes, that is my favorite outfit he has that he is wearing! I bought it for him in the spring, and sweet Suzanne let him wear it today just for me!)
“We will tell the next generation the praiseworthy deeds of the
Lord, His power, and the wonders He has done…….
so the next generation would know them,
even the children yet to be born,
and they in turn would tell their children.” PSALM 78: 4-6
I am a Christian woman who has survived many years on the planet. God has blessed me with a wonderful family: husband, 3 sons, a dear DIL, and a precious grandson. I also have dear friends to keep me inspired. I am an artist of sorts and am finding my way through the great blessing of retirement. I recently retired after 20 years as a music teacher. Life is good!
My Boys
"All your sons will be taught by the Lord; and great will be their peace." Isaiah 54:13
Read their stories... Adam Alex Ian
Hello, my name is Everly. I am a blogger living in New York. This is my blog, where I post about interior design and decoration. Never miss out on new stuff.