On occasion I go back and reread blog entries from my past. They always make me feel better about whatever situation I am facing at that time. I believe God is guiding me in my writing so that I can help others.... and even myself from time to time. He knows what needs to be said and more importantly what needs to be heard. I praise him for that!
Anyone who has experienced a serious medical condition before can feel my pain. There are so many decisions to make and obstacles to go thru. A few years ago my best friend's sister was shot in the head. As soon as my family heard we began praying and thanking God for her survival. She was able to come thru and now has a wonderful family with a beautiful daughter, but for a time things were really difficult. My whole thought was on her medical condition... never once did I pray for her finances or personal life to heal or continue to be blessed. Never, until my best friend had mentioned her no longer working. It is extremely easy to see a disability or malformation and pray for just that, but God knows we are more than our body shows. I will take any prayer you are willing to offer for Braylon...any! But I ask that you continue to pray for him as a whole, not just his disability.
Lately, everything I do I consider Braylon's schedule first or what needs he has. Not everyone may agree or understand why I choose to stay home with my children or make sure I'm available for ALL of B's many appointments a week. Well when the decision is between making more $$ or supporting my son in his progress, I support my son and have faith that God will take care of the rest. Trying to schedule a sleepover for my older boys, do I just forget about it because Braylon keeps me so busy already or should I find a day where I can devote my time to the sleepover. Of course I stretch myself a little thinner and plan a sleepover for my boys... God will let me know when it's time to rest. We will be victorious thru these obstacles and difficult decisions! But please continue to pray for all of us as a whole, that we may not neglect one another and continue to be faithful to the Lord. Pray that thru this we will meet more friends and inspire others. Pray that we will continue working hard towards our goals and dreams and not give any excuses. Praise him, because in Him we are made whole!!!
Tuesday, July 28, 2009
Tuesday, July 21, 2009
Littlest Heroes Photo Shoot
Checking my facebook one day, I noticed an add for a non-profit group called Littlest Heroes Project. The group offers free photography sessions and free photos for children who are disabled or critically ill. I went to their website and checked it out. Soon I filled out an application for Braylon and selected the photographer that I liked... there are photographers all over the world and in our area at least 20 worked with the Littlest Heroes Project. Finally the day came for me to take the boys for their photo shoot. Allison, with Starglo Photography, was wonderful. She allowed the boys to be themselves and in return learned a little about each of them. She took so many pics and I couldn't wait to see them. Well.... She posted a few on her blog for a sneak peak and they are BEAUTIFUL!!! Seriously!!!! I'm posting a link to Allison's blog so you can see the pics yourself and also a link to the Littlest Heroes Project. Maybe you know someone who can benefit from this non-profit as well. (Or a photography who'd like to be a part of the experience!)
http://starglophoto.com/blog/
http://littlestheroesproject.org/Littlest_Heroes_Project/Home.html
http://starglophoto.com/blog/
http://littlestheroesproject.org/Littlest_Heroes_Project/Home.html
Communication
Speech therapy began today. I completely forgot about it until I heard the door bell ring... it can get difficult keeping up with all of B's appointments! My middle son goes to speech therapy in school, so I was able to figure out the structure of these therapy appointments. What I didn't know was how the speech therapist was going to get Braylon to even start communicating. There is only one word he says and that's "DADA", little daddy's boy!?! Besides that I usually have to guess what Braylon wants.
Communication comes in all forms: different languages, body language, sign language, even "eye language". The speech therapist started with basic forms of communication. She wanted him to reach for a toy if he wanted it, instead of grabbing the toy out of her hand. She tried to do it many times, failed many times. Examples were shown to B, but time and time again he yanked the toys from her hands and put them in his mouth. We discussed his basic understanding of simple commands, like "come here", "no".... things he doesn't respond to. The conversation continued between me and the therapist, but none occurred with Braylon.
Frustration is easy to set in and hard to get rid of. I felt myself becoming frustrated, because I want B to be able to point or wave hi and bye. But HE doesn't. Life would be so much easier if instead of biting me, he could gesture for milk. If I could hear mama and know he needed me. Who actually lives in the land of IF.... no one I think, because there will always be more "IFs" to come. This journey would be very long, lonely and disappointing, if I didn't know any better. Although I don't hear the word "Mama", I see it in B's smile when we play. Braylon's way of communicating is lacking, but when I hear a high pitched scream, I know he's talking to his brothers. I'm not sure if he just doesn't understand the word "no" or ignores it, but I think that of my older boys sometimes too! Thursday we will meet again with the speech therapist and maybe more will come from the session. I'm not sure what to expect, but I do know that we will be there for that session and we will be OUR best. All you can do is all you can do and all you can do is enough.
My plans for this blog is to continue writing as long as I need to and as long as others are inspired. My dream for this blog is that Braylon one day will read it and understand how strong he is and communicate in his own words to you that we are all strong in the Lord! God bless!
p.s. Lesson learned.... none of our communication levels are up to par. I need to work on communicating more instead of expecting others to know what I want!
Communication comes in all forms: different languages, body language, sign language, even "eye language". The speech therapist started with basic forms of communication. She wanted him to reach for a toy if he wanted it, instead of grabbing the toy out of her hand. She tried to do it many times, failed many times. Examples were shown to B, but time and time again he yanked the toys from her hands and put them in his mouth. We discussed his basic understanding of simple commands, like "come here", "no".... things he doesn't respond to. The conversation continued between me and the therapist, but none occurred with Braylon.
Frustration is easy to set in and hard to get rid of. I felt myself becoming frustrated, because I want B to be able to point or wave hi and bye. But HE doesn't. Life would be so much easier if instead of biting me, he could gesture for milk. If I could hear mama and know he needed me. Who actually lives in the land of IF.... no one I think, because there will always be more "IFs" to come. This journey would be very long, lonely and disappointing, if I didn't know any better. Although I don't hear the word "Mama", I see it in B's smile when we play. Braylon's way of communicating is lacking, but when I hear a high pitched scream, I know he's talking to his brothers. I'm not sure if he just doesn't understand the word "no" or ignores it, but I think that of my older boys sometimes too! Thursday we will meet again with the speech therapist and maybe more will come from the session. I'm not sure what to expect, but I do know that we will be there for that session and we will be OUR best. All you can do is all you can do and all you can do is enough.
My plans for this blog is to continue writing as long as I need to and as long as others are inspired. My dream for this blog is that Braylon one day will read it and understand how strong he is and communicate in his own words to you that we are all strong in the Lord! God bless!
p.s. Lesson learned.... none of our communication levels are up to par. I need to work on communicating more instead of expecting others to know what I want!
Monday, July 13, 2009
Who's vision is it?
About a week ago we had Braylon's six month evaluation with the physical therapist. To begin we went over the goals we set for Braylon back in January. The goals were to be accomplished by June. Now as I look back at setting those goals, they seemed very realistic... especially considering he had no independence at the time. One goal was that he would be able to sit up for at least 2 minutes and play with a toy, another said he would be able to commando crawl. Braylon has since surpassed all of those goals and completely blew us away. As the p/t was reading the goals both of us looked at each other in amazement, because we had completely forgot how far he had come.
In a six month time period Braylon went from only rolling in one direction and depending on us for EVERYTHING to crawling, holding his bottle, playing on the floor with his brothers and sitting up in the bath. And all of this with limited to no use of his left side. Again, I must say he is a miracle working and I am so privileged to see it.
Speaking with someone about how far Braylon has come they mentioned I was trying to hold him back (said in a joking matter). My reaction to the comment was that my vision for B must not be big enough. That really struck me. My vision can never be big enough for what God has planned. When asked to set new goals for B for him to do by December, I didn't know what to say. Obviously he exceeded our expectations last time. Should I set really high goals, like he's running with his brothers in the yard or more simple ones, like he's able to walk with his walker??? Again I must trust that God's vision is much larger than mine, so let's put it out there. Braylon will be playing in the yard with his brothers for Christmas, he will be able to say some words to communicate, he will begin using his left hand.
Disappointment usually comes when we don't get what we want, when we want it. But I understand we are working on God's time and the good book says, "And the Lord answered me, and said, Write the vision, and make it plain upon tables, that he may run that readeth it. For the vision is yet for an appointed time, but at the end it shall speak, and not lie: though it tarry, wait for it; because it will surely come, it will not tarry." Habakkuk 2:2-3
So I am asking you to read and run. My vision has been stated and I am patiently waiting for God to "knock my socks off" again with what he's doing in Braylon. It's easy to forget how far He has brought us, but I continue to be thankful and keep faith in His word... for his word will not tarry and will surely come true!
In a six month time period Braylon went from only rolling in one direction and depending on us for EVERYTHING to crawling, holding his bottle, playing on the floor with his brothers and sitting up in the bath. And all of this with limited to no use of his left side. Again, I must say he is a miracle working and I am so privileged to see it.
Speaking with someone about how far Braylon has come they mentioned I was trying to hold him back (said in a joking matter). My reaction to the comment was that my vision for B must not be big enough. That really struck me. My vision can never be big enough for what God has planned. When asked to set new goals for B for him to do by December, I didn't know what to say. Obviously he exceeded our expectations last time. Should I set really high goals, like he's running with his brothers in the yard or more simple ones, like he's able to walk with his walker??? Again I must trust that God's vision is much larger than mine, so let's put it out there. Braylon will be playing in the yard with his brothers for Christmas, he will be able to say some words to communicate, he will begin using his left hand.
Disappointment usually comes when we don't get what we want, when we want it. But I understand we are working on God's time and the good book says, "And the Lord answered me, and said, Write the vision, and make it plain upon tables, that he may run that readeth it. For the vision is yet for an appointed time, but at the end it shall speak, and not lie: though it tarry, wait for it; because it will surely come, it will not tarry." Habakkuk 2:2-3
So I am asking you to read and run. My vision has been stated and I am patiently waiting for God to "knock my socks off" again with what he's doing in Braylon. It's easy to forget how far He has brought us, but I continue to be thankful and keep faith in His word... for his word will not tarry and will surely come true!
Friday, July 3, 2009
With a smile and a point.
This past weekend my husband and I traveled to a wedding .... a chance to celebrate a union and an opportunity for some "us" time. The event was beautiful and although we weren't actual family members of the bride or groom, everyone made us feel at home. Over our four day vacation we met some wonderful individuals who made us laugh, feel loved and inspired us to do more as a family. One young man by the name of Justin really impressed my husband and I. His spirit that followed him was one of joy and appreciation and I have a feeling it was taught to him by the same family that showed us so much joy.
Justin is a 26 year old man living with cerebral palsy. As I'm writing this, I'm thinking "living" isn't the right word.... he is thriving! I sat back and watched Justin laugh at someones jokes, dance down the soul train line and announce the bride with bells tied around his wrists. For the exact same reason I was at the wedding, he was to and I'm sure he enjoyed it just as much as me. Speaking with his mother, I wondered what happened to Justin. Was it a stroke like Braylon? Similar... he had a series of seizures at birth causing the cerebral palsy. Although Justin can not speak, he absolutely understands everything and in some cases may have a better understanding of the world than most. I learned thru our conversation that as a young boy Justin played football, using his 3-point stand to tackle and block at the line. Now, at the age of 26, Justin has his driver's permit. He is so excited, but I'm posititve his mother is suffering the same anxiety I will when the time comes for my boys to drive.
For an hour and a half we talked about our very special boys and the way we help mold them. It was inspiring and uplifting. My heart was encouraged and my mind set at ease knowing that my son too can accomplish his goals. The very best part of that whole conversation was when Justin looked at me with a smile on his face and pointed to his head, as if to say "I can do anything I set my mind to." A simple gesture that I took with me, not only for my son Braylon, but for myself as well.... I can do anything I set my mind to.
Justin is a 26 year old man living with cerebral palsy. As I'm writing this, I'm thinking "living" isn't the right word.... he is thriving! I sat back and watched Justin laugh at someones jokes, dance down the soul train line and announce the bride with bells tied around his wrists. For the exact same reason I was at the wedding, he was to and I'm sure he enjoyed it just as much as me. Speaking with his mother, I wondered what happened to Justin. Was it a stroke like Braylon? Similar... he had a series of seizures at birth causing the cerebral palsy. Although Justin can not speak, he absolutely understands everything and in some cases may have a better understanding of the world than most. I learned thru our conversation that as a young boy Justin played football, using his 3-point stand to tackle and block at the line. Now, at the age of 26, Justin has his driver's permit. He is so excited, but I'm posititve his mother is suffering the same anxiety I will when the time comes for my boys to drive.
For an hour and a half we talked about our very special boys and the way we help mold them. It was inspiring and uplifting. My heart was encouraged and my mind set at ease knowing that my son too can accomplish his goals. The very best part of that whole conversation was when Justin looked at me with a smile on his face and pointed to his head, as if to say "I can do anything I set my mind to." A simple gesture that I took with me, not only for my son Braylon, but for myself as well.... I can do anything I set my mind to.
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