Brother's Keeper

A Time to Give Thanks

2011-12-28T04:57:00.002-05:00

Although it has been quite a while since I posted for Ryan, I feel like I owe it to him to begin keeping up with his blog. There are many people concerned about his well-being and who need an avenue to check on him. For my delinquency of that, I apologize.

Life sometimes brings us rushing reminders of what is truly important in our lives, and of course Ryan is of upmost. He is now 15; fiery red hair, beautiful green eyes, and a personality that lights up my life. Although he still continues to struggle physically, he does so with a strength and calm that can only come from God.

Ryan continues to have chronic hiccups and seizures. He still does not speak with our language, nor can he stand to his feet and walk like us. Instead, Ryan communicates through his spirit that you must become acquainted with to understand. Rather than walking on two legs, Ryan has been carried by the Grace of my dear Savior to heights that you and I will likely never experience.

I continue to be humbled by heing Ryan's mother. I, daily, am awe-struck at his resilience and strength. I am ever learning from his testimony. Please continue to pray for God's manifestation in Ryan's life and that I may not ever get in the way of the Lord's will for Ryan.

Kicked Out of Hospice

2010-02-27T09:39:00.004-05:00

Have you ever heard of someone getting bettter and being discharged from Hospice ? I have! Little Ryan is just the one. Overall he is doing well despite the hiccups. He still just smiles!!!

COME ON SPRING!

Ryan is a Tough Lil' Guy

2009-11-14T18:08:00.002-05:00

Ryan is doing very well today. Last week, all of the kids... Sallie Ann, Devin, and Luke, all had H1 Ni flu virus. Of course Jake and I were terribly concerned about them all. More than anything we feared that maybe Ryan would become infected. I asked the saints to please pray a hedge about him. Evidently, God was moved and provided Ryan with the protection he needed to avoid the germ. Thank the Lord!!

I also want to let all of you know how grateful I am for the prayers that were lifted for little Ryan last month when he was so very ill. You know, Christ is such an amazing friend. No matter how hard the winds blow, or how high the waves rise, He never leaves me alone.

How hopeless it feels when something that you love is suffering beyond anything you can physically do. But when hopelessness sets in, God's grace is sufficient. I know that He not only helped me, but He helped Ryan too. He certainly should have never pulled through such a bad pneumonia...

He and God have got their own relationship: God uses Ryan to bring Him glory because Ryan has been counted worthy to suffer for the cause of Christ. What a blessing. When I have trouble understanding why God allows certain things to go on, I reflect on something my dear pastor said recently, "God's intentions are ALWAYS good towards his children."

What a powerful statement, and true. Christ knew I needed that little nugget of truth to pull out when things are rocky.

Improvement!

2009-09-16T13:26:00.002-04:00

Just passing on a message from Ryan's momma since she isn't able to post updates at the moment. Got this text from her this morning:

This is Stacy. The doctor says Ryan is improving. He will be on antibiotics one more day, then it's up to his body to get over the pneumonia. Thanks for the prayers and visits. Thank the Lord for another miracle.

Continue to keep Ryan and family in your prayers. It is much appreciated! I will update more if I hear anything else and until Stacy is back on top of it again. Thanks for dropping by!

Please Pray

2009-09-15T20:39:00.004-04:00

Just to update everyone, Ryan is in Pediatric ICU with pneumonia. He has it in both lungs and they are trying to get it broke up so that he will be able to breathe again.

His sister posted this on her blog yesterday, but her blog is private, so for those of you who don't have access, here is what she said:

I thought I would inform you guys on little Ryan!!! He really needs your prayers , He's struggling to breathe, his heart rate is up, and his blood pressure is dropping some. This morning he woke up and he was swollen. The nurse gave him lasiks to see if she could bring some of the swelling down. He is hanging in there. I got him some music playing behind his bed. Momma really is in need of some prayer, It kills her to watch him suffer and she can't do anything about it. She is worried, stressed, and tired. Pray for her and Ryan!!! Remember our family in prayer!!
Sallie Ann

I was up at the hospital for a few minutes today and they said he was doing a little better. The oxygen that he was on today was at 60% (from my understanding) and yesterday it was up at 80%, so he's breathing more on his own. I felt so bad for him though because he was still having such a hard time and his momma is really worn out. They've been up there since Friday or Saturday, I think, so they're all pretty tired. Just remember the family in prayer and especially Brother. He's really suffering and it's heartbreaking to watch and I can't even imagine being in his momma's shoes. I asked her if there was anything she wanted me to post on here for her and she said to just ask ya'll to please pray and they would sure appreciate that.

A Beautiful Day

2009-08-24T14:43:00.002-04:00

Ryan says to tell everyone Hello, and to let you guys know how great it was to see you in service on Saturday. What a wonderful revival we have had!! I sure hope that youth camp in Tennessee is half as good as this past week.

Ryan feels well today although he has had the hiccups since Sunday morning. Please continue to pray for him, because rough days do seem to be the "norm" lately. He still just smiles on, radiating God's love from within.

If you are reading this and you can ... please pray for Ryan's Hospice nurse and her family. She has just lost her dear father to cancer and only God can soothe the hurt. She is a wonderful lady who is very special to Ryan and to the rest of us.

I hope all is well. Looking forward to hearing from you......

Happ B-Day Ryan XOXOXO mr.beat up

2009-08-01T20:27:00.006-04:00

happy b-day ryan hope your day was worderful even though you didn't feel good I want you to know that I love you and always will and you like skip the sad part man. you have realy done alot for this family your just realy realy special to but you just think that your a teen ager and you can just try to beat me up.
love you love always luke

From Mormie.....

2009-08-01T19:04:00.002-04:00

Hey big boy! I can't believe you're 13! You are a wonderful gift from God, I have been blessed to know you and help take care of you when I'm there. When I think of you I always think of an angel, because that's what you are to me a beautiful redheaded angel! I absolutely love it when you smile, but then again who doesn't? I love you to pieces and hope you've had the best birthday ever!!

Love Mormie

From His Sissy:

2009-08-01T18:46:00.002-04:00

Happy Birthday my sweet sweet Boy!! I want you to know that you are one of my most favorite people, living thirteen years is a big deal for such a special boy.I know that in life your supposed to live for the moment but today we are celebrating the past,*present*, and future.You are the sweetest thing that has ever been on this earth and you will always be my little God given angel. I want you to know that ill never regret taking care of you or staying home from doing something else because you are sick or cant make the trip. God give you to this family and to me for a very special purpose and that purpose is to show me love and has taught me a compassion that only comes from caring for someone special. You will always hold a spot in my heart. For all those times Ive scrooched up there next to you in your bed when your sick or I'm sad or just to love on you. I want to say thank you lord for the peace that i feel when I'm next to you all the time and especially those times.Remember Sissy loves you.
Sallie Ann Raines

2009-08-01T13:55:00.001-04:00

Hey Brother!!! Happy Birthday! : ) I LOVE YOU SOOO MUCH!!!! <3

The Big 13!!!

2009-08-01T13:42:00.002-04:00

Ryan,
WOW! You are an amazing 13 years old. I am sooooo proud of what a strong, beautiful young man you are. I thank God each and every year....month...week...day...moment that you are here with me. I know that today wasn't the best as far as how you felt, but just celebrating your thirteenth birthday has been awesome. So many of your friends were here just to let you know that you are an inspiration to them all. ESPECIALLY ME..... I wish you could know how you have impacted me deep within my very soul. You are my precious angel. HAPPY BIRTHDAY!!!
Love, Mommie

Bright Daze

2009-05-15T21:03:00.002-04:00

Ryan has been a hoot since yesterday. He has everybody in the house magnetized to him. He has smiled and talked (in his little way) and laughed in ways we haven't seen in a while. What a welcome experience!! Thank you Lord!!!

Anyways, Ryan sends his love to everyone as he hopes to be in services on Sunday morning. I hope all is well with all of 'yuns.

Oh, P.S. If you haven't got your seeds in the ground, you'd better get on that quick like & in a hurry!!

As of Late...

2009-05-08T18:23:00.005-04:00

Today has been a better day for my little buddy. Since last Friday, Ryan has had much difficulty breathing. So much so, that the home-care supplier had to deliver another machine for increased oxygen. Last weekend was when things started to decline for Ryan, and the very worst day was Monday (the day of the oxygen delivery.)

His sweet Hospice nurse came out on Monday and subsequently called Brother's doctor. Dr. M prescribed several medications. Over the last several days, Ryan has felt better. He is no longer needing the extra oxygen, but is still dependent on respiratory assistance quite a bit throughout the day and especially at night.

It is during times like this, that as his Moma, I worry very much. I know that I shouldn't: for God is certainly in control. You see, when you love something so much that it actually feels as if it is a part of your very being, nothing seems to soothe your fears. It is difficult for me to fathom that even my Dear Lord himself loves Ryan far more than I. My heart and soul are convinced of God's boundless love, but my human mind sometimes becomes an obstacle; which the Lord so graciously helps me to overcome.

Ryan is not hindered by the silliness of fear or doubt. He is safe and secure in the love of his Lord, regardless of what place his soul dwells. I hurt so much inside over his physical afflictions; yet they do not alter Ryan's spirit. He continues to smile, never complaining. He continues to fight, never waivering.

Warmer Days

2009-04-25T14:46:00.002-04:00

Today is Saturday and it is beautiful indeed. The sun is shining and everything outside is bursting open with life. It is time to get outside and enjoy what God has so richly blessed us with. "Nature" is what many dub the world outdoors. Let's consider, just for a moment, nature.

Nature can be perceived in varying ways. But nature, to me, is the course of things which God has placed in motion that has neither been disturbed or altered. Therefore, nature can be any process of life that has originated from creation, which man has yet to corrupt or destroy.

The human mind has a nature. It was created and intended for the purpose of communion with our Heavenly Lord. But, due to the fall of our fleshly father, Adam, even that natural process has been tainted. It is that thing which I cannot shake from my thoughts.

I have encountered this aspect of nature in its purest and undefiled state: as new, white snow lies atop of the tallest mountains. Ryan has the human mind as it was intended to be; full of love for God and for others which has not been disturbed by worldly opinions or desires. His perception of all that is around him, both physical and spiritual, is without fear, malice, or jealousy. That is natural. He is as God designed him and in that, he is a monument in my eyes.

If only we could love each other openly, without fear of rejection or opinions. If only we could love God and have sweet communion with him, without worrying so much with our daily affairs. Then, just maybe, we could experience the essence of nature.

Just as human beings, with all of their supposed knowledge, have tried to harness the power of the mighty wind, rushing rivers, and even the mind itself, God has had other plans. To fulfill his purpose, we should all be more like Ryan. We should love naturally, worship naturally, and try to allow God's nature to flow through us freely.

Neuro Appointment and Greens

2009-04-08T20:33:00.003-04:00

Ryan says to say, "Howdy" and that he feels GREAT today. We went to Asheville today to see Dr. H (Ryan's neurologist). Like Sunday, Ryan was acting silly and looking all over the place. He's had a haircut this week, which makes him even cuter. So besides looking cute and being very alert, Ryan was somewhat engaged in the conversation around him which certaily pleased his doc. (and of course, Me.)

Dr. H said that, to him, Ryan looked better today than he has in a long time. Thank the Lord. This is the same doctor that often has to give us bad news. I know he was happy to see Brother doing well, because I overheard him talking to a new person in the hallway about Ryan. He referred to Ryan as "one of my favorite patients". HEE, HEE!! He's my favorite too.

Next on the agenda is a developmental evaluation to try and expedite a new wheelchair order, which he desperately needs. Then, we are off again to Asheville for upcoming dental surgery. He's a pretty busy guy, right? Well, what do you expect, he's popular.

Are you guys gonna plant a garden? Boy, we are (Lord Willin'). Already we have peas, spinach, kale, collard greens, onions, lettuce, and potatoes in the ground. All but the taters are "gittin' with it". (Taters are slow, like me.) Friday we hope to plant corn, green beans, cucumbers, and squash. Tomorrow, I hope to start some bell pepper and tomato seeds inside. Sallie has an herb garden that she has started from seed this year. Cool right?

Dirt is awesome!! Everything that sustains this whole planet is dependent on dirt. AND WORMS ARE THE BOMB. Don't fish with'em. Throw 'em in the garden. They make everything grow like stink-weed. And SEEDS!!! Who would've ever thunk that a tiny seed could have enough sense to know whether or not its a corn, or a bean, or an apple tree? God is truly awesome. If nothing else can convince you of the intelligence and power of God, come and watch my garden go from dirt, worms, and little seeds to pounds of fresh food that is wholesome and wonderful.

Recipe for health: Dirt, seeds, and worms.

Add sunlight and water.

In just a bit... Meal after meal: fit for a king. (We are kings you know. The
Bible says we are a "royal
priesthood." So, we should eat
like it.)

Bye, I love 'yuns all.

"BAD BLOGGER" Ha! Ha!

2009-04-06T17:42:00.004-04:00

Man, it has been a while since I've sat down to blog. I know ya'll are mad because there hasn't been an update about Ryan. Please forgive me.

Anyways, Ryan is fairing pretty well. We did go to Youth Camp, and had a GOOD TIME. Almost everybody got to see Brother. I know, he's a cutie. We left a little early because Ryan had a few seizures, and we thought it would be for the best. It was terrific just seeing everyone.

Thank the Lord for all who were saved!!!

Ryan and the rest of the gang went to services yesterday morning. He was truly in rare form. He just talked (in his own little way) and smiled. He definitely is aware of the presence of God, and he let's it show!!

Ryan has some appointments this week, so we will be travelling with him some. Please pray that God keeps him safe form germies and that he continues to LIGHT UP EVERYBODY'S DAYS!!

I sure hope all is well with you guys. And for those of you who reached out so graciously to our family this week..... HERE'S A BIG HUG FROM ALL OF US!! I hope God pours out triple-double-score blessings back on you all.

Looking Forward...

2009-03-10T20:44:00.002-04:00

It is all I can do to keep from packing for the Youth Meeting next weekend. Ryan has had a bit of an infection, but has been on antibiotic therapy. Therefore, he will be "tanked up" and ready to go!! He has had sunshine on him a couple of times this week, and has a sweet healthy glow. Boy, he's cute!! We are sure praying for many of you and ask that you continue to do the same for us. Sorry for the brevity of the posting, but things are CRAZY here between preparing for the garden, youth camp, bible school, etc... Oh, did I mention home-schooling? WHEW!!! Ryan sends his love and big hugs...

HICCUP UPDATE!!

2009-02-25T19:13:00.002-05:00

Ryan says to tell everyone, "Hello!" He is feeling well and has been for the last several days. His hiccups are intermittent, which sure beats the alternative. I must say that if hiccups make a child grow (old-wive's tale), then he will be big as a moose in just a few days. Hee hee.

My crew is certainly looking forward to Youth Camp in Tennessee next month. My prayers are that Ryan will be well enough to go. Even if he can't be at every service, he could at least stay there on the grounds so everyone can come by and kiss him. Pray that way, would you? He needs to be surrounded by all the love he can get.

Sometimes, our other children will come with members of our home congregation when my husband or I can't bring them. But, Ryan was able to be there last year and that meant I got to go too. I hope it goes that way this year as well. Often, we are unable to do things as a unit (you know, all 6 of us at once) because Brother's not able to be "up" for long periods of time. But there, I can take all his equipment and he can lie down whenever he needs to. He loves it, and the rest of us do too...

Church is busy! God is certainly doing a MIGHTY work in our home congregation. Many have given their hearts and lives to our Lord Jesus Christ. And I am soooooo thankful. There is nothing like the birth of a new creature in Christ and the joy it brings to the Mother. I am so blessed to be a part of such a wonderful family. I love each one.

If you are reading this, you are being exposed to the miraculous power of a wonderful, merciful God. The amazing things that he has wrought in the life of Ryan are enough to convince the greatest skeptic of the certainty of my Creator. I love him and I owe my everything to him.

Lord, thank you for allowing Ryan to have several good days. Forgive me when I don't understand. I know you have the best of plans for him. I guess sometimes I tend to forget that he has belonged to you all along. I can see your majesty in his eyes and your kindness in his smile.

Photogenic!!

2009-02-16T11:06:00.005-05:00

I would like to apologize for taking so long in posting. A combination of computer glitches, scheduling, and mass hysteria all played a part in this delay. LOL!!

Ryan had about a week there when he was feeling very well. He had no hiccups, fever, sweats, etc. It was amazing. Unfortunately the relief was short lived. All of those crazy symptoms are here again. Yet, he smiles through it all. He's tough as a "pine-knot" as my Granny would say.

Last week, Ryan underwent some tests to rule-out possible causes for many of these symptoms. The main concern was that there may be a tumor in his adrenal gland: which would explain much of his situation as of late. Firstly, there had to be a urinalysis to detect specific components to indicate this tumor. Those were found in his urine and hence he was sent for a CAT scan. Thank God, his CAT scan came back normal.

His physicians believe that these symptoms are indicative of an overall neurological decline, not a condition or illness that requires medications or specific treatment. So, we are back to square #1, relieved that he is not facing some crazy surgery, but hopeless that there is nothing we can do but enjoy every moment with him.

Did you see his pictures? The day that he was scheduled for the scan, Sis.F was scheduled to come and do some pictures in our home with the family. I called her and told her that we could do it another day. NO WAY! She came, in spite of half of us being in pajamas, the house upside down, and all of us waiting on the doctor's office to call.

She was as cool as a cucumber and did a beautiful job getting some great pictures. (But, I have to admit that I have some good-lookin' kids)It is just like God to send a sweet spirit into the house (Sis. F) to take our minds off the test and back on happier tokens. Thanks Friend!!

Ryan was not shaken in the least. Drama does not affect him at all. You can see in his pictures that he was happy as a lark. His face shows me that his soul is not troubled over any of this world's worries: his physical condition included.

That's my little buddy... Ain't he cute??? When you think of his little face, you smile too.

Comments

2009-02-15T13:50:00.003-05:00

This is Ryan's Bloggy Friend again....had to make a few changes in the blog settings and wanted to let ya'll know....

Comments to this blog are greatly appreciated. Unfortunately some people can ruin a good thing and because of this, comment moderation has been turned ON for all older posts, as well as the word verification step, to make it harder for spammers to leave comments.

I apologize for the extra step this creates for the good people out there who are leaving thoughtful comments, please do not let this prevent you from commenting as it is a wonderful encouragement to Sis. S when you leave comment love for her and Ryan.

Thanks!!!

At a Loss for Words...

2009-02-01T19:39:00.004-05:00

"Prayer begins where human capacity ends."
Norman Vincent Peale

Often, when life happens; we are left unknowing what words will express how we feel.

A Heavy Heart Filled with Praise

2009-01-28T20:20:00.002-05:00

It is with the heaviest heart that I endeavor to pen these words. I understand that it is appointed unto each of us a time to leave this physical world. In that departure, we must bid farewell to our dearest companions who dwell with us here, in our present estate. This is so that we may find glorious companionship with our Lord and Savior Jesus Christ; there in that Heavenly home with others who have made the crossing before.

For many, time spent here is filled with personal ambitions: wealth, fame, and worldly gain. Others spend their brief quest here aimlessly: led about by emotions, fleeting decisions, and fanciful notions. Both of these life courses come with pleasure and pain, happiness and sorrow, but also the grandest of all opportunities: redemption through the shed blood of Calvary. Some will choose to embrace this free gift which costs them everything. Others will reject it; holding fast to their everything which is truly worth nothing.

Besides the ambitious and the aimless, there are many types of others who are issued their souls form the very portals of Glory. Each of these having access to the same venue with which to glorify their Master, or not. Of these varying types, I have been intimately acquainted with a particular, and I must call it rare. These are few and far between. These are innocent and free of any personal desires. They have but one goal: to be a living testimony of the magnificent love and power of our Lord. Such is "Little Ryan".

Ryan has been as pure and innocent throughout his life as he was the day his soul entered within my womb. From that point, he has had but one purpose: to bring honor to his Creator. Ryan's presence has brought forth joy, pride, and a love that cannot accurately be described with mere words. Yet, it has also brought about a penetrating tenderness that can only be conceived through suffering.

As I have mothered him, I have witnessed my spiritual vulnerability and reliance upon God manifested through his physical limitations. Throughout his years, he has had wonderful, high times when he was healthy and free of pain. Yet, low times have dipped into an unseen abyss where he has endured countless surgeries, infections, and disorders. And for what? To show the awe-inspiring healing and resiliency that comes from true, undefiled love for God.

Ryan, You are Mommie's inspiration and my hero. My love for you goes beyond space, time, and even life. If you leave this world before me and enter into life anew, my love will always be with you.

About Brother...

2009-01-20T20:46:00.002-05:00

YEAHHH!! We successfully moved Ryan into the den and fixed it up with all his special things. Of course, we set up camp in there with him as well. He is such a sweetheart. He has hiccupped for hours now, yet he just managed to give me the biggest Smile!( Boy, we could all learn from his perseverance and temperance. )

Yesterday and today have been a bit taxing on all of us. Brother's Hospice nurse and social worker came out to have a family meeting with us to prepare us all for what may be upcoming in the near future. (The Lord is the only one who truly knows.) Ryan listened to his radio in the bedroom during that meeting- for we do not want to ever say anything that may upset him or cause him any discomfort. That meeting was emotionally exhausting for every member involved.

It was nice that my children were so forthright with their answers and their feelings about Ryan. My kids have an outstanding relationship with both Ryan's nurse and his social worker. In fact, Ms. Jennifer (the nurse) has taken my children on outings, had them over for fun afternoons, and we were even privileged to be part of her wedding. That care and concern for them and for Brother have proven to be very beneficial all the way around. Adam, the social worker, has spent hours with my kids every month just being their friend and a shoulder to lean upon.

I wish I could say that Ryan was feeling good today, but unfortunately that is not the case. He has ran a fever, had hiccups, and multiple seizures. But, he's still smiling. I love him and his strength. Please continue to hold him up in prayer. The greatest thing that we can do for him is seek the will of the Lord for his life.

I want to thank all of you who have prayed and demonstrated support for our amazing little fellow. If you can, keep it up. Feel free to share information about yourself: blogs, phone numbers, addresses, etc. We would love to get to know you all!!

Pictures From Church (Jan 18)

2009-01-18T21:21:00.001-05:00

This is Ryan's Bloggy Friend with a few pictures from church tonight. It was wonderful to have Brother and his whole family there at church with us today. At the end of the Sunday night service, Ryan's whole family brought him to the altar and his church family gathered around to have special prayer for the family and Ryan as they go through this time.

Ryan, I just gotta tell ya, you have got a such a sweet spirit. It's awesome.

I'm so glad you were there today, I know your family enjoyed being there with you and it certainly made my day to see you sitting back there in your chair with that big smile on your face.

I love you, big guy, and your church family loves you so much. Hang in there buddy, your mom is very right. You ARE a winner either way!

From Ryan

2009-01-18T15:32:00.003-05:00

Hey everybody! I have had a blast the last few days being with you. It is my favorite thing when every one is laughing and having a good time.

Being at church this morning was sure a special blessing. I love music that praises my Lord. I was singing right along in my heart.

Preach it, Bro. Ken... If everyone could feel the love of God the way I do, the altar would always be full!!

I just wanted to tell all of you who are praying for me, "Thank you."

Jesus is always with me reminding me that I have a very special job to do for his kingdom, and that he will help me- no matter what!! I love him, and all of you. Have a smile-full day!!

Love, Brother Ryan

A Time of Uncertainty

2009-01-18T15:05:00.003-05:00

So Wednesday has came and gone, and we are all still trying to work through our feelings.

Ryan did very well the whole day, and continues to be fine. For those who are curious or have been praying, Ryan's EEG came with some sobering results. Although he looked to be sleeping, the EEG showed a great deal of seizure activity. The symptoms that Ryan has been experiencing are due to problems with deteriorating brain function. His doctor also told us that he really did not feel optimistic about Ryan's overall neurological condition, and that his main objective at this point in time is to keep him comfortable.

So, now our main objective as a family is to have as much fun as we can with this sweet boy. Our house will undergo a transformation over the next few days to bring Ryan and all his needed equipment into the main room of the house. Daddy and I will camp out there with him at night.

We were blessed to have special friends over on Friday night and to spend the day with other friends on Saturday. Thanks for being there for Ryan and for us.
Everyday we will try to make memories. If you are interested in having some good times and special memories with this awesome little dude, JUST CALL OR BLOG!!

We're starting off today by being at services with our dearest friends: our church family. Everybody have a wonderful day. To God be the glory!! " Ryan is a winner either way. If he stays or if he goes, He's a winner either way!" Only our Heavenly Father knows what's in store for all of us, including Baby Ryan. Let's just trust in his infinite wisdom to do what is the best for Ryan.

P.S. Please pray for my other children during this time. They adore Ryan and will need extra strength to understand all that is going on around them.
Thank You... Mommie (Brother's Keeper)

Pray

2009-01-17T07:58:00.002-05:00

Please continue to remember Brother in prayer.

A Good Day

2009-01-11T22:22:00.000-05:00

Today has been a good day for Ryan. He has spent most of his day with "Daddy," since I have been busy with church the greatest part of the afternoon.

Wednesday, Ryan is scheduled to see his neurologist. At this visit, he will have an EEG (electroencephalogram). This is a painless procedure that, through the use of some special wires attached to his sweet head and chest, his brain activity can be examined for its quality and normalcy. This test is necessary to determine whether all of these symptoms he is experiencing lately (chronic hiccups, eratic temperature fluctuations, etc.) are due to his central nervous system. I hope the results are positive: but either way, God is in control. Ryan and I trust Him.

Ryan says to tell everybody "Hi," and that he misses seeing you.

Thank You, Lord

2009-01-11T20:29:00.000-05:00

I hope you guys don't think I'm trying to pull at your sympathy or anything when I speak about Ryan, because that's not my desire at all.

But the devil tries to perplex me with this situation, you know, he tries to dig at me and tries to tell me that if God really loved me, He wouldn't allow Ryan to go through the things he goes through. And I would be a liar if I tried to tell you that the devil didn't do that. But I just want the devil to know that I thank the Lord anyway. And I know that God's got Ryan in His hands. I just have to learn to trust in the Lord and know that there's nothing really that I can do anyway.

I just want the Lord to know that sometimes even when my head's hanging down, that I love Him anyway and I thank Him anyway.

I wish I could put it into words what it's like to love someone so much that your gut just hurts, and then have to stand to the side and just watch. It's very hard, but I'm sure it's harder for Ryan than it is for me. But, I have to rest and know that God truly loves Ryan more than I ever could.

I just want to tell the Lord, "Thank you." I was told Ryan wouldn't even live, not even a year, and this year, he'll be thirteen. But even if he had only lived a year and a day, that would be more than what anyone expected.

I don't want God to ever think that I'm complaining about taking care of Ryan because it's been the most wonderful experience. And I'll say it until I leave this world, that watching him and seeing him in the state he's in and in a way that is helpless, it truly does show me my condition without my Father.

Lord, I just love you tonight and I'm sorry if I get upset and I'm sorry if I ask questions.

And I ask you guys to forgive me if I seem like I'm downtrodden sometimes, I still have joy in my heart and I still love God with everything in me.

A Note From Ryan

2009-01-01T22:57:00.002-05:00

Hello Everybody!!

I am "Brother" Ryan. I am almost a teenager and the brother of 4. I have 2 sisters: Lacy and Sallie, and 2 brothers: Luke and Devin. I am totally the favorite, even though I'm not the "baby."

I think it would be awesome if you guys would talk with me on this blog, because right now, I'm a little "under the weather." My mom takes great care of me though, and she's going to keep you updated on how I'm doing. She can also pass along any messages, so I can't wait to hear from you soon!!

Ryan's Condition

2008-06-11T22:49:00.001-04:00

I hope you have a few minutes to read this. I have tried to compile some information for you about Ryan’s condition. For more detailed information on all of these terms, please see the links in the sidebar (Medical Terminology).

Ryan was born with Hydrocephalus, Dandy-Walker Malformation and Schizencephaly. These are all medical terms for the defects of his brain. Please understand that these occurred very early in Ryan’s development (8-14 weeks conception).

Because of the formation of his brain, other conditions developed. These include epilepsy (seizures), Gastro Esophageal Reflux (severe-acid reflux), dysphasia (inability to swallow correctly), hypotonia (poor muscle tone), and scoliosis (curvature of the spine).

Obvious disorders such as profound mental retardation and severe motor-delays have been present from his very development.

Due to medications taken and complications from the above disorders, Ryan has also encountered problems with his teeth and gums and most seriously, his lungs. Over years of
aspiration (moisture entering the lungs), Ryan now suffers from Asthma and COPD (chronic obstructive pulmonary disease).

Ryan has also developed Lennox-Gastaut Syndrome. This basically means that Ryan is being treated for every type of seizure there is. He is given medications of every sort to control these seizures as well as his VNS (stimulator in his chest).

I just wanted you to see some of what Ryan has fought against for so many years. He is such a fighter. God has truly performed hundreds of miracles in the fact that Ryan has survived such tremendous odds against him -- daily.

Please pray for him.

A Purpose

2008-06-10T23:26:00.000-04:00

This blog is here to share how God has taken care of Brother, to keep everyone updated on his life, to request prayers on his behalf, and to encourage, uplift, and inspire.

Some history for those who aren't familiar with Ryan's life:

Ryan was born on August 1, 1996. A beautiful baby boy, he was eight pounds and nine ounces with flaming red hair. But beneath this healthy exterior, he had major birth defects that were irreversible. Since his birth, God has brought him through more than twenty major brain surgeries, serious chemical imbalances, and countless seizures that he contends with daily.

Ryan has a rare condition called Dandy-Walker Syndrome. This disorder causes the patient's brain to be deformed from its generation in the womb. Complicating this, Ryan has a portion on the left side of his brain that never developed (Schizencephaly). Further, he has another condition called Hydrocephalus, where the brain and spinal courd do not circulate the body's spinal fluid correctly, causing pressure on the brain, and if left untreated - death.

From day one, Ryan had drainage tubes placed inside his brain to control the spinal fluid, medication to control seizures, and countless other treatments for a poor respiratory system. He cannot walk or talk. He does not eat by mouth because he is unable to swallow properly. He requires assistance at night just to breathe. Doctors have said from the beginning that Ryan would be vegetative and predicted a lifespan of no more than 9 months.

That all sounds really sad, right? Well, hold on to your seats because here's the "flip-side." Ryan is not vegetative. Instead, his little personality and wit bubble over when he smiles. Through the power of the Almighty, he has accomplished more in his almost thirteen years than most do in a lifetime. They are as follows:

Author: He has written a chapter in the lives of everyone who takes the opportunity of getting to know him.
Actor: He has played a heart-wrenching role that causes us to thank God daily for things often taken for granted.
Sculptor: He has molded his brothers and older sister into people with unusual compassion and understanding for others who are "different."
Architect: He has framed a faith within me that would not have existed without him.
Escape Artist: Ryan has defied death numerous times.

Awhile back, Ryan was placed in Hospice care. This is a service for people who are at the end of their lives. It is designed to allow the patients to stay at home, in comfort, so they can spend their last days with the ones they love.

Ryan had symptoms that indicated that his nervous system was shutting down. Hospice was called in and we all tried to prepare for what we thought was going to be the end of a very courageous and blessed life. But just like my God, it was discovered that Ryan was having an adverse reaction to a treatment for his seizure disorder. With some very mild alterations to Ryan's care, the terminal symptoms that placed him in Hospice care disappeared.

Thanks be unto our Lord, Jesus Christ for all he has done for Ryan and our family. I can't wait to see what God is going to do next with this miraculous young man.