Batson journey 6 cont.

Well I am definitely starting to miss my home! This air mattress is not very comfortable:( we seem to eat fast food and junk 24-7. I am so ready for home cooked veggies, fruits, and soups. Yesterday hayden had a good day. He slept a lot. He is still on tons of pain meds. He had very few seizures during the day yesterday. I was praying this meant we were seeing instant results. Unfortunately, they are starting back. I woke up to 3 nighttime seizures. They started feeding him pedialite yesterday. He is getting one ounce per ever 3 hours. The pain meds are to continue until Saturday. I must say i woke up to his eyes being open this am. I have missed his pretty eyes and baby coos so much. I am so proud of our angel. He is such a fighter. He has to be exhausted but he never complains. I feel that GOD places his hand on hayden 24-7 while at Batson. We are praying he gets a break soon. Hospitals are exhausting and we've pretty much been here since last Monday. Thank you again to all of our visitors yesterday. Hayden loves each of you.

Batson trip 6/surgery

Hey friends! Brent and I have had so many messages, calls and text messages today. We appreciate it so much! Your encouragement is what helps us! I promise you even If we can't find time to respond- its because we are busy! I am typing from an iPhone so just a quick and simple update :). Hayden went into surgery at 10. Surgery lasted two hours! What a blessing that his surgery nurse was Lindsay Nichols from Greenville. Wow a huge relief! I was so scared to hand Hayden over to a stranger. Luckily I felt confident to hand him over to her. Hayden is in a good bit of pain. He is having some "wicked" and increased seizures. We have already used the diastat. Unfortunately, they are still full force, wicked, and scary. Thank you to my friends josh, Lisa, and Whitney for helping get us through those 2 hours of surgery! Thanks to laura arnold, calvin and abby for stopping by. Thanks to my college roommate for the surprise pizza! Thanks to the oakes family for the big bunny ( using as my pillow) and donating the movies and wagon to batson :) Most importantly thanks for everyone's prayers. Hayden will have a painful few weeks. We are prepared for the fight. We are going to try to rest tonight. (air mattress style ). Mom is here to help us tomorrow. Mrs Angie will come later this week. We are incredibly blessed.

Batson journey 5: brief update

Brent and I can not begin to thank everyone for your prayers this week. We are in the hospital for swallowing struggles... Yes, I knew it was coming. Many of my friends probably remember Hayden struggling with feeds from day one. In ten months, I've tried every type of bottle and consistency for Hayden. I have tried to make feedings enjoyable and fun. Hayden loves to eat :) Hayden is on 6 seizure medicines now. These are not enjoyable. We struggle, cough, and choke two times a day.


Hayden had a suck and swallow test Monday. A small amount of aspiration occurred in the lungs during the thin barium. We will continue to feed Hayden by mouth as long as we can give him a thick consistency( pediasure, yogurt, and baby food) we have to prepare for a new "game plan" that will allow him to not aspirate his medicines.


As each of you know, Hayden has 20 to 50 seizures a day. The reason we are in the hospital is due to choking and spitting up medicines. I have hope that once we have a proper way to know that he is getting all of his medicines that his seizures might decrease. After all, if he is spitting out some medicine and aspirating some, whose to say he's really getting enough.

A few specific prayer request as we continue on this journey:
1. They will have to place an Iv in Hayden before surgery. It is a huge struggle. It usually takes an hour plus to find a vein :( please pray for a vein on the first time.

2. Please pray for strength and hope. Brent and I want to do what is best for Hayden. Unfortunately, what is best sometimes isn't what we wish for.


3. Please pray for the doctors and nurses that are involved in his case.

4. Please pray that the aspiration does not cause pneumonia and a decrease in seizures after surgery.


Lastly, it looks like Easter will be spent in the hospital. We already told the bunny his room number :) please pray for All the families that will not be home for the holiday. I will update you all briefly later in the week.I am typing on the iPhone so please ignore any typos.


We are placing Hayden's journey in Gods hands. He is Gods child. God has a glorious plan for him.

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 20^th. 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.

 I BELIEVE IN MIRACLES. I BELIEVE THAT GOD ANSWERS PRAYERS. I PRAYED FOR A SMILE ON MY BIRTHDAY. WHAT DID GOD GIVE ME? A SMILE LOOK CLOSELY TO SEE :)

God works in mysterous ways. I HOPE that you believe the facts above.

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

YOUR LIFE SHOULD BE FILLED WITH LOVE. 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.

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.

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: http://ashleyhopeallen.blogspot.com/   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!

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: http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html  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.