When I decided to have children I knew my mom had had seizures and I had one brother who had seizures. But no one else in our family at the time had been diagnosed with them. Both those two the docs thought they were brought on by accidents is what I had been told. So when we had my eldest daughter, Amber I never thought she would be born with anything wrong. But she was. I had in incompetent doctor that delivered her but did not know or realize this for awhile to come. She was born premature. But I was told she was full term. Later I would learn she was not the baby I had been pregnant with when first told I was pregnant. I had miscarried that one and the doc knew it when he did my ultrasound and things did not add up. He lied the ultrasound results to me. Never changed my due date. So when she was born and was 6 lbs 4 ozes. I thought she was full term. I noticed her breathing did not seem right to me thou. I kept saying to nurses and doctors why is she breathing so strange. They told me it was normal and there was nothing wrong with her. So I took her home. The first 6 months she cried like crazy. Doc said colic. I believed him. Then 6 months came it did not stop. Then a year came it did not stop. I would hold her for hours screaming and crying. That is when the doctor for some reason decided to come clean. He told me everything. Told me my daughter was born with immature lungs. But he acted like it was no big deal. I was pregnant with my 2nd child and no one else would take our insurance at the time. So he delivered our second baby who turned out healthy. But soon as he was born we found new insurance and a new doctor.
By this time I knew something wasn't right with my daughter. But no one would listen to me or my hubby. She would go into these fits. I knew in my heart of hearts that it was something more than temper tantrums. But no one would listen. Even my own family was saying she is just spoiled and throwing bad temper tantrums. At two she could say maybe 5 words. I had started getting her help at 1 because she showed signs of being delayed. She walked at 18 months. In time they would diagnose her with selective mutism. She was 4 1/2 before we could even come close to potty training her. But even then she still wore diapers because when she had those fits she would soil herself. By 4 yrs. old. She would start coming out of the fits and cry and hold her head and stomach and say it hurts. Then more times then I can remember she would vomit. Doctors still insisted it was nothing but a real bad temper and stubbornness.
At 3 she started a special preschool program for kids with learning delays and mental disorders. At this point we also started to notice her have spells where she seemed to space out. Still no one would believe me. By the time she was four I knew what I was seeing but no doctor, no family member would listen.
When she was 7 yrs. old I got the phone call I was dreading, from school. Something was wrong with my daughter. She was having what appeared to be grand mal seizures one after another. They said they could call an ambulance or we could pick her up. We picked her up immediately and rushed her to the ER. There they stopped the seizures and finally her seizures were documented.
Her family doctor set her up an appointment with a neurologist. They hospitalized our daughter for 5 days and hooked her up to an EEG, EKG, and all sorts of stuff. They had a video camera watching her 24/7 and I did not leave her side. They did an MRI also. She was scared. But strong. When the five days were up they sent her home. 24 hours later at the neurologists office we got the news/the results. Our daughter just at night was having on average 24 seizures. During the day she was having anywhere from 12-20 seizures. They told us that we should prepare that she may die any day. That it was bad. But that they were going to try to stop them. They put her on meds. But warned us her life expectancy at the most was 13. That even if she somehow lived after that she most likely would be in a wheelchair. that the seizures were causing her body to deteriorate. It was one of the reasons she caught everything that came around and struggle to fight it off. We were warned to try to keep her a way from sick people as much as possible. They told us not to tell her. But after discussing it with my hubby and my mom we agree it was not fair to keep our daughter in the dark about what was going on with her. She may of not learned much when it came to book learning. The seizures helped prevent that. Every time she learned something all she had to do is have a seizure and she forgot it. But she understood a lot more about common every day living stuff. We told her the simple truth. She was sick and the docs were going to do their best to make her better. But that she may not ever get better here. That she may have to die and go be with God someday to get better. She handle it well. Much better than I think most adults would. She told us she will fight this and she will win.
Amber had a long road a head of her. But she proved to be a fighter. Years of testing of all sorts. Getting blood tests every 3 months sometimes more for years but she remained strong and determined. She seemed to learn some things. But very little. When she was 10 we were informed she could not hold information long enough to ever learn how to read. They said they would do their best to continue trying and hope there was a miracle going to happen. They said for math they will teach her how to use a calculator and hope she gets it.
Through the years they tried different meds. but nothing worked. At one point when she was 14 they thought we finally got the answer. Over the years the seizures had gotten worse. She no longer just had 2 types of seizures. She had 5- 6 different types. By 12 it had taken a tole on her nervous system. She had tremors so bad in her hands that writing was almost impossible. Yes, I said 14 yrs. old above. She did beat those odds and lived past 13 years old. She also was not in a wheelchair. She did have a heart murmur now. She did get sick often and it usually meant a hospital visit or stay. At one point she even had a scare with the scarlet fever rash do to being ill. We almost lost her a few times but she did not give up.
One time when she was nine reality really hit us. We were outside and suddenly Amber was nowhere to be found. We found her in the alley in the back of our house. She was walking around in a daze. When I said her name she looked at me like, "are you talking to me" I asked her, " Do you know who I am, Do you know who u are, do you know where u are? For all those questions she got a look of confusion on her face and answered no. She then asked me her name. I told her. Then took her inside to rest. Hours later thank goodness she remember all the answers to those questions. If your asking why we didn't call an ambulance or anything. Docs had warned us that she could in time permanently not know us. Also that when she first comes out of them she may at some point start forgetting things and people temporarily. They told us she could even have one and just never wake up again. She could die or go into a coma. But if we called an ambulance or doc every time she had one we would be taking her there several times a day and night. Doc even said no need to. One time a short time later she had one. I laid her down in her bed and I cried. I was watching my baby girl lose herself and her life and I could do nothing. So far my faith in God had gotten me through. I did not know for sure where Amber stood on her belief in God or if she even understood who he was at that point. But on that day I knew. She reached up and rubbed her hand on my cheek and said, "Mommy why are you crying". I said, "Because I don't like seeing you sick or in pain". I said, " I don't want to lose you". She said to me, "Mommy don't worry if I go to be with God he will make me better and you will see me again someday and when you do I won't be sick anymore".
As I said above at 14 they thought they had the answer and that her seizures had stopped. She went in for another yearly EEG. The results broke my heart she was now having 48 seizures at night and they said at least 20 or more during the day. She had not had a grand mal in a while. There is a type of seizure that is hard to tell if a person is having a seizure or just spacing out. Sometimes they happen so quick you don't even notice them. At this point we started making phone calls. We called John Hopkins because we heard of a diet that was working to stop and cut back on people seizures with epilepsy. They took a look at her medical records and said she was not a candidate for the treatment. That most likely she would still have seizures and it would kill her. So we tried other meds.
Buy this point docs told us she will not live beyond 18 with her health as it was. The seizures were taking their tole. Her nervous system was effected. Her tremors were getting worse. She had developed stomach problems. The only plus we had was she sometimes got sick right before the seizures started so she knew and knows when she is going to get one when that happens. That way she could at least lay or sit down before it hit. There was a few times through the years she had one while standing and fell because of a seizure.
Then at 16 they tried a medicine they had tried before but this time they put her on that one medicine alone. Told us if she is on any meds for her mental disorders to wean her off them. That they may be making the seizures worse. See she also had anxiety and panic attacks, agoraphobia and OCD. Later as an adult she would finally get diagnosed with autism. We did as the docs ordered us. They put her on Depakote but this time it was Depakote ER. A time release drug. Since then her seizures slowly all but disappeared. She only has them every now and then. They tried weaning her off Depakote ER to make sure she had not aged out of having them. But the seizures came back big time in less then 48 hours of being off the meds. They quickly discovered she could not even have a less dose and not seize.
Amber will be 21 in August. She graduated High School. But never learned how to read. She tries but her brain cannot get the concept of letter sounds and all that. She uses a calculator for most math . But has learned how to count money. She battles a mental disorder that causes her to over due somethings. When she was told she was under weight and had to gain she over did it and as a 5'2" foot women reached 175 lbs. Then she was told she had to get healthy and lose the weight. She in just a few months has going down to 117 lbs and it is a fighting battle to get her to eat. She doesn't understand. She will always have to have us or someone else looking after her needs. She has the mind of a 7/8 year old child. But she is alive. She has learned to live with her limitations. She has taught our family so much.
Every day I listen to people wanting material items. Taking for granted simple things. They do not see what blessings they have right in front of them. Their health. The fact that God gave them life and they are still here. Family, such a precious gift. Something that can be here today and so easily gone tomorrow. She amongst a few babies I lost while pregnant have taught me that we should never take any moment or chance to be with our loved ones for granted. For it may be the very last chance we have a moment to be with them. Even with her life as it was and is she is grateful she is here and gets to live it. She once said to me, " I could of been one of the babies that died inside of you". But God left me live". As much as she does not get or not know most book learning. Sometimes she surprises me at how much other wisdom she holds. At 16 she sat me down and has done at least twice since and told me this. "Mom is I ever get to the point I am on life support let me go". " If they ever want to cut into my brain, let me go". she says. She says when and if the time comes that God calls her home before me, she will be there waiting for us her parents, and siblings in heaven. Everyday we have with her is a gift. It's borrowed time. The docs call our daughter a miracle. They truly believe she is living on borrowed time that God alone has granted her.
For many they take those simple abilities to be able to read and write for granted. Amber would give so much to be able to do those simple things. So many people take the opportunity to achieve a good education for granted. Our daughter will never be able to do such a thing. She would give anything to be able to. But yet she knows she is blessed just to be alive.
Sometimes I watch her and I can't believe it's been almost 21 years since the day she came into this world. I can't believe all she has been through and still remains strong and determined to beat not just those little battles but the war. She has an amazing heart underneath it all. I know someday she may leave this world before me. When she does I won't say goodbye. I will tell her the same as I did with the babies that I lost when pregnant. I will say to her, "This is not good bye, this is I'll see you later.
But right now I and my family will stay positive and strong and keep the faith. God brought her into this world for a reason. He did all of us. If nothing more than to shows others how blessed they are to be able to have and do the simple things like read, write, and hold onto memories. We live in a world where constantly everyone around us is screaming bigger, faster, shiner is better. She has shown me the best moments in life are when you slow down and enjoy the moments and times with your loved ones.
You don't have to spend life trying to be the best or fastest at anything to make your life mean something. For me when I do leave this world I just want my kids and future grandchildren to remember me as that person who loved to spend time with them.
