Those of you who follow my blog or who know me personally, know the issues of our middle son, Alex. He has a degenerative brain disorder called Cerebellar Atrophy. It affects his vision, his balance, his motor skills…and causes him severe pain daily. It does not affect his mind in anyway, thank God! When I say that he is never without pain…it is not an exaggeration.
For years, ever since he was diagnosed when he was in the eighth grade, we have sought help from anywhere and everywhere. The trouble is, there’s just not a lot of information, and fewer doctors who specialize in this. We have looked the world over…literally. We have gotten the most help from the University of Michigan and they have been able to give us information, but no help in dealing with the pain.
Alex is a regular patient of the Pain Management Center here and is on quite a few medications. And, that is where we have been for about 10 years. A few months ago, his doctor told him about a new treatment that could possible give him some relief. He began looking into it and trying to get it available in Dothan. However, we told him we would go wherever it was available. The procedure is done every 4 days, so it really needs to be done as close to home as possible. Finally, it was approved for him to get the equipment here in Dothan. Then came a whole mess with insurance coverage, etc…since it is still considered by some to be experimental. Another month or so and that was finally worked out. We told them we would cover it out of pocket if insurance wouldn’t cooperate. But, finally it was all set up. And the device was implanted behind his ear last Thursday.
********The P-STIM is a miniaturized device designed to administer auriculo (ear) point stimulation treatment over several days. Stimulation is performed by electrical pulses emitted through selectively positioned needles. The advantage of using the ear is that it offers numerous points of stimulation within a small area. It provides continuous point stimulation for several days and then is removed and replaced with another.********
I share this with you to ask for your prayers. Regardless of the efficacy of the treatment, ultimately Alex’s well being is in the hands of our Heavenly Father. I truly believe God wants Alex to have a better quality of life. After all, He wants us all to have the joy that only He can give. We know the outcome of this procedure is up to Him. Our prayer is that it would give him some relief. Our prayer is that Alex could be completely healed. Our prayer is that he could live a normal life and get out into the world and not be home bound. And, we know God is able. God is able to do more than we could ever imagine. Our prayer is that He shows us grace and mercy in Alex’s life.
But, if He should choose to let things remain as they are…we will still praise Him. He is good…all the time. And, He sees farther along than we ever could. His will may be to teach us all a lesson in accepting what we cannot change and learning to look for the blessings of each day.
Pray with us, if you will, that God will give us the grace to accept His decisions…and the strength and perseverance to continue the fight.
1/26/15…..Edited to add: Today Alex went in to have the second device implanted. No news yet on if it is working, Even the doctors and reps don’t know how long it will take to see results. But, my God is big!
Yesterday, 1/14/15, I had a doctor’s appointment and Levi was going to stay with his Pa at work. I had some time to kill before I could drop him off, and I was already on that side of town, so I decided to go by and visit my Mom at the cemetery. As I pulled in…
Levi…“What is this place? I never been here before!”
Lulu….“I’m going to show you something.”
And, then I realized that Levi had probably never been to a cemetery before. Oh, my! How was I going to explain this to him? I sent up a prayer…“Please, Lord, give me the right words.” I did not want it to be a frightening thing for him…but just a fact of life.
We drove past the entrance and into the winding lane between the graves.
Levi….”Oh, I know what this place is! It’s a flower garden!”
And, looking out over the neatly manicured lawn with flowers springing up everywhere…it did look like a flower garden!
Lulu…“There are sure lots of flowers here, aren’t there?” And, I kept driving until I got close to Mom’s grave. I parked and we got out. He immediately took off running and exploring this new place.
Levi…“Look, Lulu! There’s flowers and rocks in the ground!” (He was referring to the headstones that are flat to the ground.)
Lulu…“Come with me, I want to show you something.” And, I took him over to Mom’s grave. I showed him the tree we had planted there, and the little redbirds that hang from the branches. I showed him the bench we had placed there to sit and rest.
Lulu…“This is where My Mommy rests, but she lives in Heaven.”
Levi…“Where is Heaven?”
Lulu…“I’m not really sure, but I think it is on the other side of the sky. But, I know for sure that Jesus lives there. “
Levi…“Does she have a house?”
Lulu…“The Bible says that she will have a house there. And, the best part is, God is there, too!”
As he took all this in, he noticed the mausoleum close by.
Levi…“Is that God’s house?”
Lulu…“No. That’s not His house.”
This was really a lot for a little boy to take in. So, I just sat and let him ask what he needed to know.
Lulu…“Look, here is my Mommy’s name.”
Levi…” What is her name?”
Lulu…“Her name is Eloise…but your daddy called her Granny. Some people called her Ella, or Miss Ellie, or Annie. I called Mama.”
Levi…“Is that her rock?”
Lulu…“Yes, that’s her rock. See! We put flowers right in here. See how close it is to the redbird tree.”
Levi…Look! her name has an ‘L’ in it, too!
Lulu…Yes, and look! it has an ‘E’ and an ‘I’ in it, too!
As he ran around, he picked out letters in other names on the ‘rocks’.
Levi…“Are they all your Granny’s name?”
Lulu…”No. Those are names of other people who are resting here, too.
Levi…“Did they go live with God, too?”
Lulu…“I don’t know, Levi. But, if they loved Jesus in their heart, they sure did!”
I sat down on the bench and he climbed up beside me…swinging his little legs and looking around. I knew his mind was full of questions.
Levi…“I like this flower garden. I think it is a happy place.
Lulu…“Oh, it is a very happy place! I like to come here. But, we’ve got to go now…it’s very cold.”
Levi….“Is your Mommy cold, too?”
Lulu…“Oh, No! She is in heaven…and she is singing and dancing and having a great time. She doesn’t get tired and she doesn’t get sick….and she doesn’t get cold. She’s happy all the time.”
Levi…“Can we come back next time?”
Lulu…“Of course we can!”
Wow! What an amazing exchange! I think God gave him a little understanding and me words to say.
1/15/15
This morning, before breakfast, Levi said the blessing.
Levi…“God, please look after Lulu’s Granny in heaven. I like her flower garden. I will come see her one day. I like the eggs and the bacon. I like my school. I like Jesus. Amen.”
Friends, these are the moments that you take and tuck into your heart of hearts. These are the moments that remind you that God cares about the hearts of little boys and big Lulus. These are the moments that remind us that He watches us everyday, in everything we do. And, He plans special moments for us to savor.
It has always saddened me a little that Mom never got to know John Thomas and Levi, and now Jackson. She loved her grandchildren so much and her great grands would have thrilled her! Joy takes John Thomas to visit quite often and now Levi has visited her resting place. I don’t know if she sees them or knows of them, but I sure like to think that she enjoys it when they visit her.
This little visit to The Flower Garden was a spur of the moment idea…not planned or even thought about until it happened. Well...I didn’t plan it. But, perhaps God had other ideas!
It is important that in matters of theology we don’t give more information than a child is old enough to comprehend. I gave Levi as much information as I thought would make sense to him and I answered every question he asked, but I did not try to explain to him that her body is under the ground, or that she is dead. That can be quite confusing to a young child. and that understanding will come to him at a later time. So, I followed his lead. What he needed to now…he asked. What he asked…I answered. The main thing this little visit did for Levi was show him that a cemetery is not a scary place. This sets a foundation for the times he will encounter death in years to come. To him, at this time, a cemetery is a place where there are lots of flowers…it’s a place where we talk about people we don’t see anymore…and, he had a happy time there.
” We will tell the next generation the praiseworthy deeds of the
The last car has gone from the yard and the house is too quiet! But, OH! MY! the fun that has gone on within the walls of the Creekhouse during the past few days! I think it was the best Christmas ever! (But, I say that every year). But, this one was surely among the top!
Christmas Day started bright and early with me getting the turkey in the oven. Then finishing the meal prep with Don’s help, and getting dressed and ready for the fun! First to arrive was Tara and Will and John Thomas, followed by Lori, and Tommy and Joy and Pop! We knew Tina and Ian and Jackson were on the way, but were going to go ahead and start eating! We held hands around the table and prayed together. As soon as we said “AMEN”…in they walked! So, we quickly added a postscript to our prayer and thanked God we were all together and for safety in their travels. Alex was able to be up and enjoy the family, too! Thank you, God! (Adam had to work…and Suzanne and Levi were joining us after lunch at her parents.)
After lunch, Adam and Suzanne came in and I followed the advice of several of my friends. Last week I posted a pic of our 3 little guys made on my front porch steps.
Several of you suggested I make this an annual photo of the boys and I thought that was a wonderful idea! So here is CHRISTMAS ON THE STEPS…2014
We had a big surprise for Levi, and as soon as we had snapped these boy’s pics, we took him into the garage where he had this waiting for him! He was ecstatic! We were trying to give him a chance to ride it a little before it got dark! He jumped right on and the other boys hopped in too! Off they went…down the drive, and all the way to the bridge! What made it even more special was that Adam and his work partner happened to be free and swung the ambulance by the house in time to see Levi’s big surprise! Thank you, Lord, for working that out! As it turned out, we all went outside for the big ride…and made lots of pics while there.
We gathered in the den to share some gifts. Pop blessed us all by donating gifts to Heifer International, in each of our names. This organization provides animals to those who live in deep poverty around the world. By using the animals, goats, sheep, chicks, cows, pigs, rabbits, etc., they are able to have milk and eggs for their family, and some to sell. They then can breed the animals, as well. By suppling a few families in the poorest of villages, soon they are able to help each other out and help provide for the village as a whole. This is a Christian organization and well worth supporting. Also donations were made to Clean Water and Smile Train. This is such a worthy gift and honors us greatly. Pop and Mom started doing this years ago, and it has become a blessing to our family. To know that we, who need so little, are helping many who are in such need, is humbling. Thank you Pop for having such a giving heart and for being so willing to share so others may have a better life. You lead us well!
Levi sang ‘Happy Birthday, Jesus’ for us, and we all sang some Christmas songs together.
Then the little boys dug into their gifts and had a ball! Too soon, we were all stuffed and sleepy and the celebration came to an end! It couldn’t have been any sweeter!
THE MERRIEST DECEMBER 26….2014
Because Adam could not join us on Christmas, we extended our family celebration into the next evening. Oh, what joy it was for me to have all my children and all my grandchildren and Don and I in the same room at the same time! Adam and Alex and Ian had fun just playing and sharing tech stuff. They laughed and danced and sang and I watched it all with pride and happiness!
Levi finally gave out on us and the night had to come to a close. BUT…I had told the whole group I was getting pictures of my boys and nobody was leaving until I did! So, grudgingly, I got the boys and Don and I in three quick pics! Treasure, I tell you! Treasures!
You’d think folks would be glad I made a few photos of the day, wouldn’t you! They all like to have them after they are made! And, most of the family is cooperative….but these guys? Party poopers!
Can you believe it?
Jackson got his bath and posed for a sweet Christmas picture in his Christmas PJ’s beside my tree….gladly, I might add!
And, a few minutes ago they pulled out of the driveway, heading back to Birmingham. Levi is spending the day playing with his new toys, at home with Adam and Suzanne. Alex has retreated to his apartment to recuperate, Don is watching a movie, and I…I am here…documenting it all. I love to record the happy memories we make. I want my children to be able to look back on these posts one day and remember just how sweet the times were. I want my grandchildren and grandnephew to remember how blessed they are to be in a family that loves and adores them. I want us all to remember this is not by accident. It is by the grace and mercy of our Lord. Thank you, God.
“It is God who gives us these times of joy!” Nehemiah 12:43
MANGER….a box or trough in a stable or barn from which horses or cattle eat.
A week or so ago, Joy and I went to Birmingham for a few days….to shop, yes, and just to get out of town, mostly! We have our favorite places we like to go and sort of make the rounds until we hit all the places on our list. We sort of criss-cross the whole city!. One of our favorites is a gift shop in Hoover. It’s a must on our list each time. Joy let me off at the door, went to park the car…because she is a good sister who always looks after me! The minute I walked through the door, my eyes rested on a little manger made of wood…with straw, shoved under a table full of much finer things. A little doll lay on the straw. I didn’t pick it up to check the price…I didn’t touch it at all. I didn’t even ask Joy if it would fit into her car! I went straight to the checkout desk and told the girl there that I wanted it! She said that that was the last one they had and they did not have a box, so they would have to pack it up for me. “Fine”, I told them, “I’m in no hurry.” I found several other gifts for family and friends, and then went to check out. They had folded it all together and packed it into a small package. And, it fit into the car just fine!
Then we began looking at the doll that was to represent Baby Jesus. It was not a pretty baby. It was very strange looking, actually. And, its eyes would not close…so I knew we could not sing ‘Away In A Manger’…since the’ Little Lord Jesus’ could not go to ‘sleep on the hay’. That would not do, at all. And so we added a baby doll to our list.
Now, I know nothing about baby dolls. Raising 3 boys, it was never on their lists! Even though they did have on old baby doll they played with when they were toddlers…but I don’t even know where it came from. Forgive me boys for telling your secrets) Dolls are strange. Some have the saddest looking faces…and by sad, I mean scary. I don’t know why they would even make some of the ones we saw. We looked in several places and finally found one that had a sweet face and eyes that closed. And, the best part was that it had a soft squishy body instead of a hard molded one. Never mind that it had on a pink ensemble with matching hat, booties, and bottle. Once we got rid of those things…there was no evidence of gender at all. (OH MY! I’ve probably offended someone! So sorry!)
I am a big believer in ‘hands on’ learning. You can see pictures and read books and talk about it…but when you actually feel the rough wood, and place the pieces of hay, it becomes clearer. Swaddling clothes…what does that mean to a little one? Not much…until you show him how the strips of cloth were wrapped around Jesus’ little body when he was born. I dare say, he will never hear about a manger again without thinking about what it really looks and feels like. He knows now that ‘it wasn’t soft’.
I could hardly wait for Levi to see it! I set it up right beside the tree, and put all the items on the floor around it. There was a mossy mat, and straw, and a piece of torn blanket, along with a book and the doll.
Now this piece of blanket was no where near what we would call ‘swaddling clothes’. So, I tore several long strips from an old sheet and added them to the mix. And, waited for Levi to come.
It was the sweetest thing. I showed him all the pieces and he went right to work. First he put the little mat in the bottom. (“Hang on, Baby!”)
And then he added the hay (straw).
He put it all in and then felt of it with his little hand and said, “Lulu, this is not soft.” I told him that when Baby Jesus was born, he did not have a soft bed, and that all he had was somewhere hard to lay. He thought about it for a minute and then set about finishing. First he sorted through the pile of cloths and got the biggest one. He laid the doll on it and wrapped him up tightly.
And then he laid the doll in the bed and covered it with the piece of blanket.
He took a few piece of the straw and laid them on top of the blanket. Then he looked down at him and said, “Go to sleep now, Baby.” And, as he turned to go back to play with his toys, he stopped and looked at me again and said, “It’s just not soft.”
He’s right. Our King came into this world in the lowliest of ways. He didn’t have a soft bed. He had hard wood, or maybe even stone, and the smell of animals, and the itch and sting of hay. But, he had a mother and father who loved him, and who did the best they could with what they had. His first visitors were among the bottom of society at that time. Shepherds…whose job was to tend to animals. And more visitors came later. Kings…who were wise and brought gifts that showed how important the child was to our world. The lowly and the exalted…he came for all!
My wish is for this little manger to be seen by the 3 little boys in our family every Christmas. Right there with all the presents and the ribbons and lights. A reminder that the first gift was…and will always be…the best gift! This has always been the focus of our family and it will continue into the next generation.
“I WISH YOU THE VERY MERRIEST CHRISTMAS ! MAY IT BE FILLED WITH LOTS OF FUN AND LAUGHTER AND GOOD FOOD. AND MAY THE MEMORIES YOU MAKE LAST A LIFETIME !”
(Please forgive the blurriness of these pics…it was very hard to get him from an angle to see what he was doing. And, he was into fixing it just right…not in posing for pictures! Which is exactly the way it should be!)
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
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.
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.