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ashton’s story

WRITTEN BY HIS MOM

It’s been a while since we have updated everyone on Ashton. We feel that it is time to share more details and request continued prayers for our amazing son. It’s been a few years since we have actually sat down to write something about him. We’ve sent e-mails out here and there but have not updated his story for some time. Many have sent e-mails or asked how he is doing and while I try to respond to each of them we want all to know that our “no news” has been “good news”!! As always, feel free to share our story. It is because of all of you, the people that you have told about Ashton and the trillions of prayers going up that he is doing so well and we are enjoying every day with him.

I can remember every detail of the amazing day that our son was born. March 22nd, 2005. Just thinking about that day still puts butterflies in my stomach as I wanted nothing more than to be a mother. He was everything I ever wanted plus more. He had chunky cheeks and was too cute. We were in heaven with our new baby and our family couldn’t have been more excited to welcome him.

He was a fussy baby. He nursed constantly, cried frequently, barely slept and just did not seem comfortable. He had a few small veins around his right eye but the doctor assured us it was nothing. One side of his face would frequently turn bright red with a clear line down the center. We were told that this too was not an issue. For multiple reasons, when he was around 4 months of age we switched pediatricians. On our first visit, the new pediatrician told me that the veins around his face could be a sign of a tumor in his brain and that we would have to keep an eye on his development. I truly let it go in one ear and out the other. We brought all of our concerns to our previous pediatrician and were told it was fine. I was not going to worry about a “possibility”. In my eyes, he was perfect! Around 5 months of age, for various reasons we once again switched pediatricians.

On September 29th, everything was typical but I had an uneasy feeling. I teared up as I rocked Ashton to sleep thinking that something just was not right with him even though he was acting his usual self. I wrote a note to his babysitter to give her with a framed picture of him that we had just got taken the week before. That morning I thought to myself that I really needed to memorize the sitter’s number just in case I needed to get ahold of her quickly. September 30th is the day that changed our lives forever. We woke up like any typical day. Ashton was fussy as usual. I got ready, got him ready and drove him to his babysitter. He had just turned 6 months old and as we did every day, we listened to hymns on the way to his sitter. I dropped him off and headed to work just a short distance away. Around 10 am, I was in the small building of the school waiting for the classes to get back. I remember talking to one of the teachers about the new car she was going to be getting when the speaker came on. It was the secretary saying that I needed to call the babysitter right away. Apparently because I worked in various places in the building they could not find me right away. I knew in my heart that something was wrong. I started running to the main building when I realized that for some reason I had thrown my phone in my bag (which I had never done before). I called and the babysitter said that something was wrong with him and she felt he needed to go to the ER. He was pale and vomiting. My friend drove me to the hospital and I frantically tried to call everyone but could not get ahold of anyone. Finally, I got ahold of my mother in law and my mom. I arrived at the hospital before Ashton and when he finally got there, he looked awful. He was as white as a ghost and could barely hold his head up. They took him back into a room. He did nothing but turn his head to throw up. I was concerned but not overly as they said he probably had a virus. However, I was surprised that a baby could look this sick, this quickly from a virus. They were going to send us home. I wanted something else done. I was trying to think if there was anything that could have caused this. I told them that I had bumped his head on a wall earlier in the week but he barely even cried. They decided to do a CT scan.

About 30 minutes or so later, someone came to us to sign papers for him to be flown to Johns Hopkins. WHAT??? We were going home and now they are sending him to Hopkins and this is how we find out. Finally, a nurse or doctor said that the CT showed that he had a brain hemorrhage from him hitting his head. REALLY, DID I POSSIBLY CAUSE THIS? I was mortified. Rich stayed with Ashton and my parents drove me to Hopkins. I cried the whole way down thinking that I may have possibly harmed my child. The helicopter was landing as we arrived. The first thing I asked the flight nurse/doctor while they were in the hallway with him is, “was this really from him hitting his head?” They assured me that it was not and that he clearly had vein malformations that had caused a brain hemorrhage/stroke.

The next week was a nightmare. Ashton barely did anything but stare and lay there. We were told that he may be in the hospital for up to 6 months. We were trying to figure out how we could take a leave of absence from work because we were NOT leaving him. I got a few hours of sleep at night in a special room for mothers of children in the PICU and Rich slept in chairs in the waiting room. Not sure that I should call it sleep but we were pretty much forced to at least try.

September 30th was a Friday and not much could be done over the weekend. An awesome Interventional Neuroradiologist finally came to us and gave us an explanation of what he thought was going on. He thought he had some type of vein malformation that could easily be fixed. They were going to do an Angiogram to find out for sure. They told us that the angiogram would take about an hour and a half and they would let us know what they found.

We were with Ashton until he “fell asleep” before the Angiogram. We kissed his cheeks and walked into the waiting room for what we thought would be less than 2 hours. Rich was a mess. I kept saying everything is fine. I truly try not to worry until I need to. Unfortunately, Rich’s feelings were right. 2 hours passed… 3 hours passed…. I am not sure exactly how long he was back there but I will NEVER forget the look on the Neuroradiologists face and the words he spoke when we asked him how it went. He told us that he didn’t know what it was but it was all over his brain and they couldn’t fix it. I remember saying I was going to pass out, my heart was racing, and I could not feel my body. What was wrong with my baby???

We got to the PICU as they were pushing Ashton back into the room and a surgeon was there because the blood flow was not returning back to Ashton’s leg after going through an artery in his leg to his brain. So much of this week was a blur. I remember rocking him, singing to him, giving him his favorite toys, lots of visitors and numerous people gathering around him to pray. I also remember the blankness on his face, the fact that he barely responded, the vomiting, and the constant worry. We wanted answers and we wanted our family there to hear what was going on. Finally, a couple days later we got to meet with the doctors. They determined that yes; Ashton did have a vein malformation as expected but that it was very involved. They said he had 4 to 5 very large Arterial-Venous Malformations. When I asked if they had ever seen anything like this, the specialist said that he had heard of 1 other case in India. Really, we are at one of the best hospital in the world and my son has something that you have not seen. The severity/complexity of his issues still boggles my mind and we are getting used the answers of “I don’t know” when we asks questions.

So on Friday September 30, 2005 Ashton at 6 months of age had a stroke. Yes, a 6 month old baby suffered a stroke. It was caused by and AVM (Arterial Venous Malformation). I am now an AVM expert, but it is 1 word I wish I never learned. We all have arteries and the blood flows quickly through the arteries. Arteries lead to capillaries which slow the blood flow down before it reaches the veins. Ashton does not have the capillaries and the area where the capillaries are supposed to be is malformed, hence Arterial-Venous Malformation or AVM. Ashton does not have 1, but 4-5. Unfortunately, AVMs are more common than we originally thought but he has numerous and his are very involved and large. It was determined that they are not able to fix or operate on them because they are so diffuse and deep within the brain. Having an AVM causes other problems and puts him at risk for a stroke but they felt that attempting to fix them could cause more problems.

After being in the hospital for 6 nights, they wanted to send us home because there was nothing they could do for him. We did not want to go home. What were we going to do with this sick child? They let us stay one more night but said we had to go home because he could pick something up to make him sicker in the hospital. They also told us that it could take up to 6 months for the blood to dissolve and that we really would not know the damage that the stroke had caused for some time. This was the first miracle, our 6 month visit turned into a 6 day visit. I took a leave of absence from work and Rich took off for another week or so. I was terrified to be alone with Ashton.

We had so many doctor appointments and visits. I really just remember worrying about a lot of things because we were told that he is still at risk for another hemorrhage . Ashton slowly started to improve and become a happier baby but slowly problems started arising. He had lots of episodes which we now know were probably seizures. He was not developing normally and was sick a lot. He had 2 helicopter flights to Hopkins, countless ambulance rides, and a few overnight stays. He was a sick child but he was a blessing and we were learning to live with and take care of a child who had AVMs. My child has AVMs but I was not going to let the AVMs have my child.

We went on as best as we could caring for Ashton and giving him what he needed. He got physical therapy, occupational therapy, and speech therapy. We saw the Neurologist, Vascular specialist, Neuropthomologist, Cardiologist, and Pediatrician regularly. We also sent his scans for a second opinion and while he felt he could attempt to fix one AVM at a time there were risks. Risks other doctors and we felt weren’t worth taking. We did hit another low point right before Ashton turned 3. Ashton’s heart was growing very quickly because of all the blood flow coming from his AVMs. The Cardiologist said his heart needed to stop growing. His heart was the size of most male adults and if it continued that way, the doctors would have to intervene. That terrified us. Why would we want to try and fix or touch an AVM when it could cause even more problems?

We called everyone asking for prayers. Our Pastor, Pastor Bob said that we needed to be specific and we needed to ask for his heart to shrink. So that is what we did, we sent out tons of e-mails. Rich stayed up nights at a time sending out prayer requests to churches all over. Ashton’s heart needed to stop growing. A few weeks later, we got a call that the doctors wanted to try to put him on a heart medication that had recently been observed to shrink hemangiomas which are another type of vascular malformation. They felt it was worth a try to put him on a low dose and see what happened. We were followed about every 4 months by the cardiologist and before every appointment we sent out our update/prayer request asking for Ashton’s heart to shrink and it did. As Ashton grew bigger, his heart shrunk. Our prayers, your prayers were answered. He continues to take his heart medicine 3 times a day and his heart is normal size for someone his age. God is GOOD!! That is miracle number 2!

He also takes seizure medicine twice a day. We did not know that he was having seizures until he had his first grand mal seizure in February of 2008. He was not acting right that morning during a physical therapy session at our house so I called an ambulance. Thank God he was at the hospital when he had his 1st grand mal seizure because it is an awful thing to see. He was then placed on Trileptal. He has had a few episodes of possible seizures and another Grand Mal seizure in the summer of 2010 at home while he was sleeping. This is miracle number 3. We were told that evening that he had another stroke/brain hemorrhage. Two Radiologists and 2 neurologists (one being his that was very familiar with his brain scans) read his CT and told us he had another stroke. We sat by his bed, stared at him, prayed, and cried. A custodian walked by me and said, “God has him, he is fine” and kept walking. The next morning, Ashton woke up smiling and flirting with all the nurses. Ashton’s neurologist came to see him and told us that another team reviewed Ashton’s scan from the night before. He did NOT have a stroke. We believe that the doctors saw another bleed but that God saw it differently.

Ashton has lots of motor problems. He has vision difficulties and the pressure in his eyes has increased. He gets sick frequently and is often sick for a week or two at a time. He has tremors which causes him to have difficulty doing a lot of things independently. He has special inserts that come above his ankle that he wears to help with his posture and walking. He has these things, but these things do NOT have him. He is a strong, happy, loving child that never complains.

One thing that we did do was pray and ask others to pray. The doctors say that they can’t fix my child, but God can. God is in control and God has shown us over and over again that his plans are the way. I’ll never forget an e-mail from a man named Troy who was a church member of a friend. I believe I still have that e-mail. He basically said that God thinks very highly of Rich and me and that he has chosen us to see the rewards that having a needy child brings. It was a very nice e-mail although it would take me a while to truly understand what he meant. I hope that through me, you can feel some of the joy that I have felt being Ashton’s mom.

He is a blessing. Every day with him is a blessing. We are fully aware that he could have died as an infant, but he didn’t. God choose to keep him around. God choose for us to be his parents. God has chosen him to be a blessing in the lives of so many. From what others say, it doesn’t take long to see and learn what a true miracle he really is.

He was in the hospital on his 3rd birthday and when he woke up the next day which happened to be Easter morning, he was singing, “I love the Lord”. There were about 3 doctors around him and he just started singing. He loves to sing and has sung in church numerous times and each time, he gives the congregation chills. They have watched this child grow in the eyes of God.

Another time he persistently asked who was in front of us on a local highway. After about 2 minutes, he asked who the person was lying on the road and asked if we just hit him. At that moment, 2 teens hopped the median and ran out in front of us. If Ashton had not hounded us, I truly believe that we may have hit those children. Ashton is our angel but that night, Ashton was an angel to those boys.

One night, he called me into his room and said, “Someone is calling my name.” I told him I did not hear anyone. A few minutes later, he called me in again to say, “It’s Jesus, Jesus is calling my name”. I gulped and told him to listen carefully because it is very special when Jesus talks to you. I immediately returned to my room and prayed that he not say anything about a white light. A few minutes later, Ashton called me in his room again and exclaimed, “Mommy, Jesus told me I am going to be a dad, a train conductor, and Santa, when I grow up.” I was thrilled, it meant that Jesus had plans for him, plans for a future.

He sang his favorite song, “How Great Though Art” very loudly and proudly……. at a Catholic funeral. I almost asked him to stop but soon found out that his singing was a blessing. He prays all the time and anywhere and often makes others join him. He is a fighter and he is a miracle.

I certainly won’t claim that our life is easy or that I didn’t wish my child was normal. He has gotten stared at, made fun of, and even followed so people could get a look at the veins on his face. It breaks my heart that this little boy that has been through so much gets stared at sometimes made fun of by other children and even adults. However, he never lets it get him down and responds with, “this is how God made me”. In my eyes there is a big difference of being curious and mean. I prayed and prayed that he would live to see his 1st birthday and he is 7!! Each year, each day, each hour with him is a blessing and we are blessed to be his parents. He did not walk until almost 2 years of age. The joy that we felt is immeasurable. Looking at this child who suffered so much take his first steps is a feeling I could not describe. I dream of watching him ride a bike and graduating. I dream of the bright future filled with joy and happiness. I don’t care what he does as long as he is safe, happy, and healthy.

We have not sent out many e-mails lately because he has been so healthy. He has only been to the Emergency room 1 time in almost 2 years! I am so blessed to even be typing that as we have spent sometimes 4 or 5 nights a month in an ER. He has been healthy and that has allowed us to focus on other things. We don’t like to “ask” for things but I am starting to realize that we don’t have to wait till he is an adult for things that he wants to happen and that these things are for him and the smiles on his face lately are priceless. Ashton says he wants to be a pastor, a dad, and work in a train garden. This year, I asked if he could work at Christopher’s train garden. A train garden in memory of a boy that died a few years ago. His mother was thrilled to have Ashton help her and Ashton was in his glory. He got his own train garden sweatshirt and handed out candy canes and stickers when he was not too busy posing for all the photos with people who came and saw him. I tear up thinking about each person that walked through that door to see him working and fulfilling a dream. We have been blessed beyond words for the support and love from our family and friends, the amazing doctors and their staff that have grown to know and love Ashton, and the countless teachers/helpers/therapists that work every day to make a better life for Ashton’s future. We have been blessed. We have been blessed by Ashton, by you all, and by GOD and for this we are grateful.

Please feel free to share! Continue to pray for our Ashton. Pray that he is healed, pray for the pressure in his eyes, continue to pray for his heart and pray that God takes his AVMs away. We pray for these things every night and we would like God to hear your prayers too. He is a miracle. We truly feel that he is going to be healed and that all that know him and know of him will rejoice with us for Gods healing touch.