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Wednesday, March 28, 2012

Many of you know that my favorite word is HOPE. We have so much HOPE for Hayden. In June, I had a lot of hope. I had hopes of Disney World, swimming, buying tricycles, and dirt piles in my back yard. I had hopes of Hayden having extra siblings within 2 years of his life. All of these hopes were part of our “perfect” dream world. At this point, I guess I probably took the little things in life for granted. I have always been a girl that “Dreams Big.” The word HOPE changed in my vocabulary when Hayden was 5 weeks old. I was sick of seeing him jerk with the “hiccups.” Everybody thought that I was exaggerating. Lauren, he is just fine. Sadly, I was not convinced. I decided to Google jerking babies on the internet to watch you tube videos. I immediately called everyone to tell them that I had diagnosed Hayden with a seizure disorder. What do you think I got again? Calm down Lauren. Once again, I was not convinced so we showed some friends a video. They informed us that the video we took was definitely a seizure. Off to Batson we went! Sure enough it was seizures. We were checking in the hospital. At this moment, I still had a lot of hope. I still believed that my life was perfect. The nurses helped me gain more hope. They kept informing me that seizures are so common. Often kids outgrow them within a year of life. Okay, that’s going to be us. The seizures are just a minor setback to my perfect little world.
                On day three of our visit everything was still testing normal. They said let us do an MRI of the brain to make sure everything is clear before we send you home. HMM that’s the day the word HOPE changed in our vocabulary. Hayden had bilateral white matter damage. Really, Will he ever walk? Usually not. Will he ever talk? Probably not. Will he live a normal life? Doubtful. I lost all hope. Our life was over. My brother and his girlfriend gave me a bracelet that day. It was a simple hope bracelet. It was purple and hot pink and looked like a rubber band. Every time I lost hope the bracelet would help me gain it back. I had a few people in the months of waiting on a diagnosis ask me, what is that bracelet? I would explain that it is my comfort zone. It reminded me that I can still have hope for Hayden.
                My dreams did change on July 20th. My goals changed also. Luckily, the one thing that changed the most is the real meaning of Hope. Hope now means that I believe in Hayden. Hope means that I am appreciative of the small things in life.  Hope is a miracle. Hope is hearing the words mommy and daddy. Hope means we will play baseball one day together. I cannot guarantee that this will happen on Earth. I can guarantee that it will happen in heaven. Hope makes me realize that life is a precious gift. Hope makes me realize that I don’t have to take one day at a time. As Dr. Gillespie told me, I can take a half day at a time or even an hour at a time.  Hope also makes me cherish each smile and each coo. Hope also reminds me that you cannot take life for granted. You must live each day to its fullest. You must cherish every memory. You must give all your faith to God. You must trust in God. You must remember that God will never give you more than you can handle. I HOPE that each of my friends will remember that life is a precious gift from God. I have HOPE that Hayden will change many lives. I firmly believe that he will make people appreciate the simple things in life. I have HOPE that Hayden will impact lives around the country. Thank you, Hayden Brent for making me a better person today. Thank you, Hayden for allowing your daddy to be an awesome person too. Thank you for being our precious gift from God.  Thank you, God for trusting us with your special and uniquely made Earth Angel.  I might have “Dreamed Big” in June, but I “DREAM LARGER” now! I believe in miracles and I hope you do tooJ
·         I am looking forward to ordering some Hope 4 Hayden bracelets to give to all of our friends and family in the near future.
I have HOPE that we will ALL see Hayden walk and run!
 I have HOPE that God will give us more amazing days with this awesome blessing.
 I have HOPE that God will not allow Hayden to be in pain or suffer.
I have HOPE that Hayden is changing lives both young and old. Thank you to an amazing group of girls for thinking of Hayden. Thank you girls for giving me the idea. Sorry I had to steal it:)
 I have HOPE that I will continue to see little miracles and blessings. Look at this amazingly beautiful hand.
 I have HOPE that Hayden is supported by many.
I have HOPE that if you take the small things in life for granted that you will learn to appreciate the little blessings that we often overlook everyday. I have HOPE that many parents will raise their kids to love unconditionally like the mother of these two girls. A recent conversation with them:
Chloe what are you? My GanGan's Heart
Chloe what is AMO? My GanGan's Angel
Chloe what is Lilly? My GanGan's Sunshine
Chloe what is Mary? My GanGan's Star
Okay this is the one that gets me the most: Chloe what is Hayden? My EARTH ANGEL.

Children are never to early to learn respect, life lessons, and prayers.

This is coming from the same child that prays for Hayden everytime she sees a penny. I have HOPE that I can be half the mom that Lisa is to these girls. I have HOPE that these girls will always love Hayden (their Earth Angel) Unconditionally!

 I have HOPE that God will give me strength when I get discouraged.
God works in mysterous ways. I HOPE that you believe the facts above.

Monday, March 26, 2012

How many of you have gone under the tunnel in Mobile? What have you done? Most everyone would say that they’ve tried to hold their breath from one end to the other. As you begin to see the light, you get extra tired! I felt like we stayed under the tunnel all week last week. I felt like we could not come up for air. Man what an exhausting week it was! The saddest part was that we were on vacation. I thought vacations were supposed to be relaxing!
 We planned to leave for Florida on Tuesday. Tuesday morning, Hayden had a dozen plus seizures. I was hoping that this would mean he would sleep the whole way there. Instead he seized every 15 minutes to an hour for the entire day. He was worn out. Hayden’s muscles were jumping. Hayden’s cry became whimpers. Our angel was clearly in pain. We finally arrived to the condo. I sent out a prayer request as Hayden needed a break.  The seizures continue throughout the night. It was time to do something. The following morning we gave him the DIASTAT. This is the emergency drug that helps stop the seizures. We only use them when a seizure goes over five minutes. The drug usually makes him sleepy. Wednesday, it did the reverse on Hayden as he continued to be in a large amount of pain. Thank goodness my mom and grandmother were there to help me! What a relief! They always seem to be around through the good and bad times. I am so thankful for them.
Finally on Thursday, he was feeling better. He was getting good naps and sleeping peacefully. The seizures were continuing. Luckily, we were down to 20 a day. This sounds like a lot but compared to 50 it’s like Heaven. Hayden went to the beach. He touched the sand. He even played in the ocean.  We were thankful for the few good minutes that we were given. Hayden decided that he was ready to ENJOY vacation! He went shopping. He went to restaurants. He hung out on the beach. He even took sunset beach pictures. He was loving life to the fullest. (I think that he got sick of the picture taking as mommy tries to capture every memory.) We truly were able to enjoy the rest of our vacation.
Hayden loves the Water!
 Styling in my sunglasses and swimsuit from Miss Holly:)
 I'm such a sweet angel:)
 Shopping with Nana at the outlet:)

                The newest problem that we ask you to pray about is swallowing. After Tuesday, Hayden struggled to take his medicine. He had to chase his medicine with milk. He was spitting some of it out as he began to choke. Bottom line it was terrible! Thursday, he had a perfect day until medicine time. He choked, coughed, and spit up. After all of this was over, he had a wicked seizure. A wicked seizure is what I call the scary and fast moving seizures. These seizures age me about 20 plus years. I truly believe the seizure occurred because of the medicine struggle. The medicine struggle continued to get worse until Sunday. He has done great since Sunday.  I think he feared going to the hospital. I had talked to our Palliative Care team / Speech Therapist and we are preparing for an evaluation. We need to be extra careful as aspiration will cause pneumonia. We discussed having surgery for a tube that could be used for medicines only. We were planning to go to Batson on Wednesday. I believe that we are going to give him one extra week to continue to improve on his own. My heart fears surgery as most people fear walking through a ring of fire. I feel that adding medical equipment to our home is just one step down. So today not only am I going to ask you to pray for Hayden’s swallowing improvement. I am going to ask you to also pray for Brent and I as we know that sometimes the right decision are the hardest to make. I pray that I gain the strength and courage to take this leap when the time comes to do surgery. I cannot tell you if it will be next week, next month, or even 5 months from now. The one thing that I can tell you is that Hayden is beginning to get weaker in taking his medicines. We are begging that our glorious God will lead us to make the decisions that will give Hayden the best quality of life.
I would also like to thank you for your prayers Tuesday. I firmly believe that prayers are the reason he gained strength by Thursday. I firmly believe that is why we were able to enjoy our vacation as a family. My mom and grandmother love Hayden unconditionally. We were so blessed to take pictures together. We sang together every night. He loves when we sing “You are My Sunshine.” Hayden took his Nana to Janie and Jack so that he could get some new clothes. Hayden placed his handprints, footprints, and a piece of his hair in the condo. We will cherish these things all summer. We enjoyed our vacation as a family! He was perfect on the ride home. He wanted to make sure that Nana and Maw maw would come back with him soon! More pictures to come soon J

You were born with the love of God within your heart. When you live in the love of God, you will naturally live and grow in that same model. When you emulate God’s love, those around you respond to your care and thoughtfulness. When God’s love is perfected in you, the confidence you have in Christ and your Christian walk will naturally flow to others. There is nothing more important than the love you share with others.
I have a few friends that are struggling with similar battles at this moment. I hope that this daily devotion can give you a bit of encouragement and strength. I hate seeing friends struggle with similar battles. One thing that I’ve learned through this journey is that God gives special children and challenges to some extra strong women. I only have 3 ladies to talk to that have walked through the adenylosuccinate lysas deficiency life. The one thing all these women have is the POWER OF STRENGTH. The two that have already lost their children give me the encouragement to know that everything is going to be OKAY. They do not “sugar coat” anything. They are completely honestly.  For the one that is still walking my journey, she takes time out of her difficult day to check on Hayden. She answers all my questions. Wow what a relief these 3 ladies have given me.

Monday, March 19, 2012

Avoiding Sad Times and Celebrating God's Blessing

Wow! Thank goodness the weekend is over! We had a lot to do this weekend. I usually look forward to busy things. Sadly, I am starting to dread them. It’s just one of those things that you will never understand unless you are placed in our shoes. Everybody surrounding you has things in common; everybody around you is chasing kids and having fun. You sense the whispers and thoughts running through heads as they notice you looking at them when they start talking.  It’s overly exhausting.  I try to keep an upbeat attitude. I try to stay happy. I try my hardest to be the best mother in the world. Unfortunately, when somebody puts me in a “mood” I get down. When I get down it is hard to get up. Sadly, I was placed in a “mood” this weekend. I was angry and mad all weekend. I need a break occasionally. I need a break from reality just like the “normal” moms and dads do! That’s why I am fixing to get a much needed break to the beach with my mom, grandma, and Hayden!
Luckily, I ran across my friend Jolene’s blog. It was about sadness. WOW JOLENE, I feel like you wrote this blog for ME.  This link is to her blog:   you see Jolene is from Canada and she is my rock. She knows more about ASLD then most Doctors. ASLD affected two of her children. She did an awesome job raising these children. Being told her children would never live past infancy was a total CRUSH to her as it is us. I believe her attitude is what allowed them to live to age 4 and 6. Jolene sends me messages weekly checking on Hayden. She feels tears in her eyes as she reads my blog because she feels that it is her story all over. She truly hates that I am walking in her shoes.  Jolene has given me a lot of advice in the past. I truly believe that her advice is why I have such a positive attitude. I cannot allow myself to get in a slump because Hayden can sense my sadness. I am not going to be sad because I am blessed with a beautiful day and a beautiful child. I have no time to be sad. I have a job to do. My job is to keep on being the best mother in the world to my special child. I often have thoughts going through my head. I often wish Brent and I could go on dates. I wish I could go to the movies without my phone on loud. I wish I could be a normal 26 year old. Then as I read Jolene’s blog I realize that I can throw all of those wishes out of the window. I have way more to do in life than silly things like that.  I get to be the care taker, mom, and best friend of an Earth Angel. I get a little piece of Heaven while here on Earth. God picked US to take care of his angel whether it is for a year, 5 years, or ten. He CHOSE us! Why would I have any room to be sad? I can’t be sad! I must celebrate and thank God for choosing us. I must hide the tears and have a blast! I will have plenty of time to be sad in the future. Luckily, I cannot be said while Hayden is on Earth with me. I have to get busy giving him thousands of opportunities. I can guarantee you Hayden has done more in his 10 months of life then most children do in a childhood. I am officially going to do as Jolene says and avoid sadness.  I agree that if I am sad, I am going to be angry.
                I do not want people to believe that Poor Lauren is always sad. My sadness is also because of Hayden. I am sad because he is sick. I am sad because I am watching my child get worse. I am sad that I cannot do the “normal” things with Hayden. My mom tells me often that Hayden doesn’t want me to be sad. She reminds me that Hayden loves me. I might sound confident but Hayden LOVES HIS MOMMY! He loves my chest! He loves to look into my soul! Hayden makes me Happy! Hayden makes me smile! Hayden is my EVERYTHING! So why am I going to use him as a source of sadness? Nothing about Hayden makes me sad.  I love him just the way he is! God never gives you more than you can handle. God knows that Brent and I can handle this. I do not HATE anyone but I have a new enemy. The enemy is called sadness. I am going to keep Mr. Sadness out of my life. I hear so often that I am so strong. Well what am I supposed be weak? Nah! I have a life to celebrate!

Monday, March 12, 2012

Despite tough times, we are blessed!

A dear friend sent me the following quote this morning, “A worried mother does better research than the FBI.” This morning I was trying to figure out what to blog about this week. I believe that blogging helps me get through weak moments. I am glad that technology gives me the opportunity to connect with family’s worldwide dealing with similar problems. Recently, I have had a few questions asked to me about Hayden. Have you thought about surgery? Have you thought about switching medicines? What about a specific diet? Does Hayden have Epilepsy? I love and respect people trying to help us come up with ways to help our sweet angel. I appreciate it more than you will ever know. Sadly, I believe I have researched every one of these questions. Sadly, Hayden’s condition is not curable. Sadly, none of these things are going to help. Hayden does have epilepsy. The seizures are just one of the many side effects from adenylosuccinate lyase deficiency. The problem with Hayden’s disease that people do not understand is the word BREAKING DOWN. The white matter is the connecting point in our bodies. As the white matter disappears, it becomes slightly more difficult to connect. The white matter operates everything in your body. Without white matter, you cannot walk, talk, and the list goes on. Unfortunately, there is not a cure to stop the breaking down. We will continue to see each of the problems increase as he gets older. We had an MRI in July. The results showed bilateral white matter damage. We did another one in October. Sadly, the results showed more white matter damage. This proves that his breaking down process is in full force. Have you noticed that Hayden’s hands are always balled up? Have you noticed that his beautiful mouth is always opened? These things are due to hypotomia. Sadly, his muscles are just so weak. Today, I would appreciate everyone to pray for his sweet muscles to gain strength. I feel like I spend my life researching on the computer sadly the outcome is always the same. We can continue to pray that one day we will be able to stop the breaking down process.  I spoke to our neurologist today. We are going to try the ketogenic diet in the near future. Please continue to pray for less seizure activity.

Today, I also received an article about “6 things to know about a special needs mom.” I feel like it summed my life up perfectly!
Please read the article if you have not already:  If you are friends with any special needs moms, I am sure you have read the article already.
The following is how I feel/summarize  each of these six facts.
1.       I AM TIRED. Yes, I am exhausted. I have rings around my eyes. I might always have a smile on my face even when I don’t feel like smiling. A normal mom is exhausted. A special needs mom is past exhausted. The reason that I am so tired is SEIZURES. Hayden normally begins to have seizures at 3 a.m.  I always hear them as soon as they begin. UGHHHH, can we not catch a break? Can we not sleep for more than 3 hours without being awake from PAIN? I know if I am exhausted, he is too! Then once we get our day started, we have so many little things to add to our daily routine. Let’s start by fixing the 7 medicines for our 9 a.m. feeding.  Let’s dilute pills by watering them down. Let’s cut his sleeping pill in half. Then let’s prepare for our feedings. We must place a little formula, Miralax, pediasure, and cereal altogether to get a consistency that he can swallow. WOW- all of this before 8 A.M. This definitely explains why I only wash my hair every other day. This explains why I am always in a t-shirt. Not to add, we have to go to the pharmacy at least 3 times a week. Therapy is usually 2 times a week. We also have to constantly weigh him at doctor’s offices.  We travel often to Jackson for appointments. WHEW on top of all of this, we must continue on with normal routines of work and house chores.  Last week, someone called to tell me that something looked wrong in a picture I put on Facebook. Ha-ha, sadly the zero make up, rings under my eyes, 10 lbs. heavier are all just things that I have had to accept due to stress and lack of sleep. I went to the Doctor for what I suspected to be a cavity today. Guess what? It was NOT a cavity. It was stress and lack of sleep has caused me to start grinding my teeth. I am so thankful for my mom calling me weekly to give me a break. They just know when I need a “Breather” Whether it is a shopping trip, helping me clean, or watching Hayden while Brent and I want to do something, they are always there! WOOO God knew what he was doing when he made us live close to our parents. We’d be lost if we lived in a city with zero help!
2.       I AM JEALOUS. I agree with this one only to a certain extent. I would never wish our pain on anybody. I would never wish our tears on anyone. I love children. I would hate to see children hurting like ours does. I am HURT when I see kids smiling, crawling, or holding their heads up. My child is so perfect. Why can he not do this? Yesterday, Brent and I went to the Warehouse in Cleveland. An adorable little boy came in with his mommy just a smiling. I would guess he was around 4 months old. He was not in his carrier. He was on his mommy’s hip. He was holding his head up and waving his arm. It CRUSHED my soul. I looked at Brent and said we are not going to be able to go out to eat with Hayden much longer. We are at the point of car seat transitions. Sadly, he will need a wheelchair soon. He will not be as easy for me to take in stores as most places are not very accommodating. So I would like to say I am CRUSHED and HURT not JEALOUS. I place a smile on my face remember the blessing that Hayden is. I remember earlier reading a blog about Special Needs Parents and Birthday Parties. This is one of the most difficult things that we have to do as we get to see 30 plus kids running around as we hold our angel. Once again this is not JEALOUSY; it is just what WE DREAMED AND WISHED FOR BEING CRUSHED.  As Andrew said the other day, Hayden WILL walk Lauren. Until that moment, Brent and I have some great friends that will be coming to our home to cook with us and love on Hayden even if we cannot go in public as often. I am so thankful that God gave Hayden some “Aunt’s and Uncle’s” that will always be there to hug us, support us, be lazy with us, and come visit us at home when we can’t get him out as much. Thank you God for amazing friends.  On the other hand, I feel that the “normal parents” should be JEALOUS of our bond that we have with our child. Not many parents experience an angel on Earth. We doJ  I am so thankful that an angel lives in my home. He would rather lie on my chest than crawl. I am so THANKFUL for my angel!
3.       I feel alone. WOW, this is the truth. Who can relate? Very few people in my hometown. Thank goodness for technology. My new best friends are strangers I’ve never met. My friends will listen but they don’t understand. Until recently, a dear friend was affected with terminal news for her child. Wow it is so nice to have her to talk to. It is so nice that I can help her through each day. Sadly, I’d rather be alone. I wish she didn’t have to experience our heartache. Do you ever see me cry? Never! I cry in the bath tub, bed, or car. It stinks to be so alone. Nobody can relate to 20 seizures day expect my Facebook friends that are dealing with the same thing. While being around my friends with kids, they talk about daycare, about songs, about buying toys for their child, about getting on to their kids. WOW luckily all these parents and grandparents have something to talk about! They can all relate! HMMMM, then there is me, who can I relate too? Just my Facebook Friends--- infact, if you believe I spend a lot of time on Facebook this is why. I enjoy being on Facebook because I CAN relate.  Thank you Lord for TECHNOLOGY!
4.        I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... I have learned to not judge or hate people. I have learned to be the better person. Unfortunately, if you say these words in front of me, it’s going to be A BIG DEAL! Please respect the families that are hurting daily. In fact, if you feel that you need to use these words, you are doing nothing more than hurting families that consider these people their loved ones.  One day, you might consider these special people apart of your family too. I know often people say it as a figure of speech. Well guess what? You are doing nothing more than making fun of someone who can’t help it.
5.       I am human. When God blessed me with Hayden, he blessed me with a caring attitude. I hurt for people that are hurting. I want to help everyone in need. I have gained such a love for life. I will continue to take care of my child every day. I will continue to dress him like a doll. I will continue to make each day a special memory. Often, people forget about the moms of the special needs child. Wow what would it be like to go on a dinner date weekly? A pedicure monthly? Hmmm just a shopping spree for an hour. I am human. I am only 26 years old. I still want to have a life. I still have dreams of going on a “2nd honeymoon” for my ten year wedding anniversary. Thanks to my mom, I get these breaks from reality often. I use these breaks from REALITY as a BREATHER and DE-STRESSOR.
6.       I want to talk about my son/It's hard to talk about son. I believe she saved the best for last. I LOVE that so many of my friends/family asks about Hayden every day. I love that so many people care about his small progressions. Sadly, so many people that I wish would ask about Hayden don’t. People claim the reasoning is they don’t know what to say. Hmm, what do you say to a mom of a special needs child?? The same things that you would say to “healthy” child’s mom. Why is this so hard? Just the simple things mean the most! Wow, I am so proud of him. Wow, Lauren he looks great. Lauren, he has the most beautiful lips in the world. These are just a few of the things friends have told me lately about Hayden. THEY MEAN THE WORLD TO ME. I am not excepting the fact of people don’t know what to say. If anyone doesnt know what to say it should be Brent and I. Luckily we’ve got the best support group in the world. We get the most encouraging letters, cards, calls, and text messages in the world. Sometimes, we might not want to talk about him because he might have had a bad day. Luckily, people should be able to see by the look on our face if we’ve had a bad day or not. We might just need to hear the little bit of encouragement. We went to the Yacht Club last Friday. We needed the encouragement that we got. The man stated it in just five simple words. I AM PROUD OF YALL! Wow, way to make me feel like I am doing a good job! Thank you Mr. Hooker, it meant a lot to hear on an emotional day. I am so proud of my child. I am so proud of his progress. I am so thankful to be his mother. I am so thankful for the people that care about him and check on him regularly. Hayden is my normal.  Hayden is my blessing. Hayden is my life! I thank God for Hayden each day! I am proud of him just like people are proud of their “healthy” children.
I am so glad that God chose Brent and me to be the parents to Hayden. Raising a special needs child has its challenges but also huge blessings. We are rewarded with love and happiness daily. We are rewarded with happy tears often. The little coos are worth a million dollars. He looks into our soul with his big blue eyes. We are a family of three. We do not need people to feel sorry for us. We have found a since of “normal” in our life. We love our life! Yes, we often feel the six statements from the article above. We often feel sad. We often feel crushed. Luckily, the love that we have for our angel outweighs all of the sadness. My life is difficult but I receive more blessings in a week than many people do in a life time. That is true for all mothers to special needs angels.  God is good all the time no matter what!

God is love. Those who live in love live in God, and God lives in them. This is how love is made perfect in us. 1 John 4:16 -17a.  You were born with the love of God within your heart. When you live in the love of God, you will naturally live and grow in that same model. When you emulate God’s love, those around you respond to your care and thoughtfulness. When God’s love is perfected in you, the confidence you have in Christ and your Christian walk will naturally flow to others. There is nothing more important than the love you share with others.

Wednesday, March 7, 2012

Happy Birthday Month 9!

Hayden’s nine month celebration was something spectacular! Guess what he got to do??? He went to the beach! Hayden has been to the beach four times in his wonderful nine months. We started our birthday celebration by dinner with friends. As you read in my previous blog, we celebrated rare disease day and nine months at Lilo’s. We had to wait on our dear friends Kelli and Clayton to get there. It is slightly unusual for them to be late. Guess why they were late?? They had to get Hayden a balloon and a bunny for his birthday! Hayden loved the bunny so much! He even punched the bunny until it fell to the groundJ Hayden also received a weighted puppy and blanket on his birthday. Brent’s cousin Mandy found them online. I must say that he seems to be really calm when playing with his puppy. He named his puppy Nichols. For all of my friends with disabled children, this is a great thing to try! Please message me for the website for the weighted blankets and puppies.
His "Aunt Kelli" and "Uncle Clayton" love to spoil their favorite little man!

 Happy Birthday Dinner with some of his favorite "Aunts"
 Nona and Papa sang Happy Birthday and gave him some really neat beach clothes!
 Meet Hayden's new buddy Nichols. Nichols is about 5 to 8 lbs.. This puppy is helping control his seizures. He also recieved the weighted blanket. They are used to help control seizures just like the weighted vest adults use!
Finally, March 1, 2012 has arrived! We are so BLESSED with another month to celebrate our largest Blessing! Hayden is our pride, our joy, and a true miracle! People probably think that I am silly for celebrating each month of life. ( WARNING: IF YOU THINK I AM SILLY WITH THESE LITTLE PARTIES, YOU WILL THINK I AM CRAZY ON JUNE 1ST. I AM HOPING THAT HIS FIRST BIRTHDAY IS THE SUNNIES T AND BRIGHTEST DAY OF OUR LIVES)  In my eyes, I am so proud of each month that God gives me with Hayden. We woke Hayden up early and started his surprise vacation! We stopped in Jackson to visit with our friends at the radiothon. I must admit it was a wonderful feeling visiting the hospital without a doctors appointment. Hayden got to listen to his story on the radiothon and visit with some of his favorite friends. He was so glad to get hugs and kisses instead of pokes and needles. Thank you God for an amazing visit to Batson without any needles or tears.

Thank you to everyone who participated in the radiothon.  The hospital raised over 380,000 dollars. It was a very successful year. Hayden was so honored that so many people did donations in his honor. We had people call us and say that the people would say "Wow" This child has had a lot of donations in his honor today. Thank you so much for this! Also, Luxe gave a donation from 15 percent of there sales that day to Batson in Honor of Hayden. Thank you very much!

 Hayden loves Courtney and Amanda. These two girls make it all happen at Batson. Amanda is in charge of all donations. She appreciates all the things that the Delta are doing for the hospital. They love playing with the kids, entertaining the toys, and loving the kids. God is good for placing these girls in our lives. Courtney is the child life specialist on the third floor. She was so sweet and encouraging in July when we received the worst possible news. She saw at us our weakest moments. She definitely gave us some faithful encouragement!
 We even ran into Katy and Shannon. We love Katy. She is our speech therapist. In October, she did a swallow test, we just knew that he would fail! He passed! She has helped us learn how to feed him! We are so blessed to have met her. Shannon is one of our awesome Pallative Care Team nurses! She is there for us 24-7! We are so blessed to know her!

Next stop, Destin! We were kind of nervous about traveling eight hours with Hayden. I guess Hayden was so excited that he chose to sleep the whole way! He was perfect! He started crying about five minutes before we got to the condo! It was a gorgeous day in Destin! We decided to take full advantage of being together as a family! The weather was cool. We were not going to be sitting on the beach all day. Instead, we were able to relax and spend time as a family.  Hayden received lots of love and laughter! Thank you God for my perfect little family!
Look how much Hair I grew??? I really think it grew on our weekend get away!
Silly Daddy! He suprised mommy with a good laugh by taking this picture!

 Hayden love his 12th floor view! He was so glad to be "home." The car ride was BORING!

Water is one of Hayden's favorite things. Since it was cold, we spent a lot of time swimming in the jacuzzi!
 Relaxing thats what vacation is all about. (Notice, Nichols the Puppy is on top of him, giving him a sense of security!)
 Did we have pretty weather? Not really but we loved our family time!
 We relaxed a little more..... Now tell me how you think Hayden's nine month birthday went??? I would say SUCCESSFUL!

The last day of our vacation was beautiful! Hayden really hated to leave. He was begging his daddy for one more day! Sadly, daddy had to go back to work. We will do a longer vacation in the summer. We must admit it was the best weekend get away! We truly had the largest time! We took long naps. We cooked yummy meals. We relaxed. We most importantly we got to leave our worries in Mississippi. We got to enjoy Hayden’s coos and smiles. Thank you God for my perfect little family!

The day we were leaving was beautiful minus the fact it was 46 degrees!
 Daddy love!

Okay, now mommy gets a turn:)

Monday, March 5, 2012

On February 29th, the world celebrated Rare Disease Day. The goal was to get 7,000 members to join their Facebook group by this date. We live in a world with so much technology. We live in a world with so many cures. We also live in a world that has so many diseases that are going unnoticed. There is over 7, 000 rare disease that have no cure. They are given zero attention. A lot of these diseases do not have a name. I remember when Hayden got diagnosed. I was so frustrated. How can we be diagnosed with a disease that has no cure? ASLD does not even have a doctor that studies it in the world. I never thought that I would wish CANCER on my child, but in this case I would have. ATLEAST you can fight for your health. ATLEAST you can go to any hospital in the world and find a doctor that specializes in cancer or cardiology. As Brent and I listened to the radiothon, I cried a lot. I was thankful that Hayden didn’t have to undergo all of the surgeries that so many of these children were going through. I was also angry. I was also frustrated. I was extremely mad. These cancer stories and heart stories were so awesome. These children were given hope and able to receive a miracle. They were able to play sports again. Then my story would play, we have nothing to say other than live life to its fullest. Hayden is given no cure, no hopes for improvements, no specialist all because of the word RARE. Rare disease day is our only step of hope. We are not blessed with the ability to have surgeries or treatments to help us receive our miracle. I must say THANK YOU TO AN AWESOME COMMUNITY. Rare disease day was definitely in full force in the Mississippi Delta. I was truly overwhelmed by the amount of pictures that were placed on my Facebook wall in honor of Hayden. Schools were wearing jeans. Teachers were wearing jeans. Business offices were wearing jeans. Babies that were Hayden’s age were wearing jeans. Many people went over and beyond. Not only did they get to wear jeans, they were also told why they were wearing them. They were raising awareness for all of the rare diseases that are going unnoticed. They were making signs of encouragement for Hayden. They were giving us hope. We hope and pray that rare disease day gets larger and larger each year. We hope that one day a child will not have to suffer without fighting. It is a terrible feeling to sit back and do NOTHING. We were told that our child is terminal. We have NOTHING to do to help improve our situation. Now do you understand why I said I would have wished cancer on him? Please do not get me wrong, I would have been devastated in hearing that our child had cancer or a heart issue also. The point being is I wish we could undergo a surgery, a treatment, or see a specialist doctor. All of these things would make me feel like I did all that I possibly could have to help Hayden.  At least then we could have had hope and a chance. As Brent and I listened to true miracle stories of cancer and cardiology, we looked at each other and said How lucky those parents and children are! Rare disease day was amazing all over the USA. The Global Genes project and funds is even putting together a book to send to congress and the President. I have HOPE that all of those “I have hope in my Genes” photos will touch many lives. I have HOPE that we will continue to raise awareness for these rare diseases. One day at a time, I hope each of the 7,000 diseases receive awareness. I hope that each of these receive a cure. I hope that each of these receive research in the future. I can say one thing for sure; THE MISSISSIPPI DELTA has hope for raising awareness. Each person that participated in raising awareness for rare diseases has a special spot in our family’s heart. I was overwhelmed by the abundance of love that our community showed.  I would be willing to bet that we were participating more than most people in the UNITED STATES. Below is some of the MANY photos that gave our family Hope!
  Even dogs support Hayden!
 Anna in Kentucky supports Hayden and Rare!
 Arkansas families support Hayden!
 Jackson families support Hayden!
 Close friends support Hayden!
 Memphis supports Hayden!
 Children wear Jeans for Genes!
 More children support Hayden, from Arkansas!
 Belzoni, Ms supports Hayden!
 Starkville, Ms Supports Hayden!
 Rolling Fork and SIA support Hayden!

 Colorodo supports Hayden!

 Suzi Paige supports Hayden! They also sent proceeds from people who bought jeans to Blair Batson in Hayden's honor! Thank you!
 Cleveland, MS supports Hayden!
 Alabama supports Hayden!

 MSU supports Hayden!
 Mitzi supports Hayden!
 Mc Supports Hayden!
 Cousins support Hayden!
 Sunflower County Libraries support Hayden!
 Arkansas supports Hayden!
Double support for Hayden, Jeans, Batson car tag, and a little bit of Love!

 ChiChi loves his jeans everyday but wore them for his BAYBEE today.
 Armstrong Elementary supports Hayden!

 A Rare Gene day program for Hayden at my old school. Armstrong Elementary supports Hayden!
 Lilo's date with close friends to show Hayden love and kick off his birthday celebration.

Oh mommy, no pictures please!

 Baylor in Tenn. supports Hayden
 Alabama and high school friends support Hayden.
Brown's Pharmacy Supports Hayden! (These girls and David are amazing) They make my life so much easier. They are the reason giving Hayden medication is not stressful. Anyone that needs a pharmacist family that cares should try Brown's Pharmacy. Thank you girls!
 Spoiled Rotten supports Hayden and gives you ten dollars off your purchase for supporting him!
Indianola supports Batson.
 Great friends support Hayden.
 Mommy and Daddy support Hayden!
 Nana and Papa support Hayden and buy him beach clothes:)
 Louisiana ( I believe) pipeline supports Hayden!
 Hayden's Great Grandparents support Hayden.

These are just a FEW of many photos that were sent to our family on Rare Disease Day. I had a lot of pictures sent to my cellphone throughout the day. Seven states are shown above participating in Rare Gene Day in Honor of our Child. 2 local clothing stores are shown giving incentives in honor of our child. Children Hayden's age are wearing jeans in honor of our child. Schools are having programs in honor of our child. People are making encouraging posters in honor of our child. All of these things give us HOPE, COURAGE, and STRength. I am often asked how are you so strong? With a community and friends like each of you, I have nothing but HOPE! We are encouraged by cards and messages daily. We are completely BLESSED with the best community to love Hayden. Thank you so much to everyone who supported Rare Disease Day in Honor of Hayden.