And She Writes too

Hebrews 11:1 “Now faith is being sure of what we hope for and certain of what we do not see.”

This Bible verse was placed on my daughter’s door; the door to her ICU room when she was just six weeks old. This verse is what reminded everyone that walked through those doors that faith was the only thing that mattered.

When you have a newborn baby that has just been diagnosed with a life threatening liver disease, you wonder how you are going to get through it. When your six week old daughter stops breathing and has to be resuscitated, you wonder if she is going to make it. When you have doctors tell you that it is out of their hands, you wonder who to turn to now. The only answer is faith.

When people learn of my daughter’s struggle; they often ask how I can stay calm knowing that every day my daughter’s life hangs in the balance. They ask me why I am not angry at God. They ask me how I stay calm in the face of uncertainty. The only answer is faith.

How people without faith get through life’s struggles is something I can’t even fathom. People without faith don’t have God in their lives. People without faith don’t understand prayer. People without faith would certainly question how I manage.

I look back at the nine and half year since my daughter’s birth and at times I do wonder how I managed to get through those times. There was so many times that I could have questioned God, been angry at God but that would not have changed anything.. Being angry would not have changed the fact that my daughter still had a liver disease. My faith in God is my foundation, the one true constant in my life.

My daughter’s future is unknown and her disease gets progressively worse I find myself relying on my faith even more. I know that no matter what, as long as I have faith in God, I can get through anything. I have hope that through my faith in God, my daughter’s life will be saved. With faith everything and anything is possible. I can’t cure my daughter, I can’t save my daughter but I can have hope with faith.

For 9 1/2 years I have witnessed a miracle. For 9 1/2 years, I prayed for a miracle. For 9 1/2 years, my miracle wakes up in the room next to mine. My daughter, Ashley, isn't supposed to be here according to her doctors, she wasn't supposed to make it past her first birthday. Each time my daughter wakes up is a miracle.

It was late July 1998 when Ashley was born. She was born with the umbilical cord tied around her neck a couple of times, her lips were blue. As the doctor tried to unravel the cord, the nurses were trying to feel for a pulse. Finally, the cord was cut and Ashley let out a little whimper. She was immediately taken to Pediatric Intensive Care and put on a ventilator. My pregnancy with Ashley was high risk, but I had no idea how high that risk was until she was born.

At two days old, it was discovered that Ashley had a precancerous cyst on her common bile duct near her liver called a choledochal cyst. A choledochal cyst on a newborn is rare and if not removed would become cancer. Hearing the word "cancer" scared us and we feared for Ashley's future. Ashley spent her first two weeks of life going through a series of tests. She would have labs drawn two to three times a day, an ultrasound every week, a biliary scan every few days and she was on 5 different medications. During this time, I remember feeling like I was living outside myself and someone else was living this nightmare. I also remember thinking, it would be worse; she could have cancer and we would be saying goodbye to our daughter before we could she could say hi. Little did I know that our nightmare was yet just beginning.

It was hard focusing on Ashley’s health and dealing with our then two year old son. At this time my husband was traveling 320 days out of the year so I was literally handling all of Ashley's medical care and still taking care of our son by myself. There were times that I literally slept walked through the day. Looking back, it's pretty remarkable that I managed all that I did and still gave my son a normal life.

When Ashley was home and not in the hospital we thoroughly enjoyed her, she was such a beautiful baby. She looked nothing like me; I have blonde hair and brown eyes and Ashley had reddish-brown hair and dark blue eyes but there was no doubt that she was her father's daughter. Despite having needles in her arm and taking really horrible flavored medications Ashley was always good baby.

When Ashley was six weeks old, we made plans to take her home to Alabama to have her baptized in our family church. We were very excited to show Ashley off to family and have her baptized on her daddy's 34th birthday. However, before we could travel out of town we had to get approval from her doctors. We took Ashley to visit with her doctor and we were immediately told that Ashley needed surgery now and it couldn't wait. We were stunned, all I could say was, "wait we can't, she hasn't been baptized." The doctor gave us one day to get affairs in order and to arrange someone to care for Ashley’s big brother, Brad.

It was important to me to have Ashley baptized and I became very upset that she would not be baptized before her surgery. Ashley's pediatrician called me during one of my more emotional moments, when she asked me what was wrong, I was calm as I told her that Ashley needed surgery but frantic when I told her that Ashley wasn't baptized. She told me not worry that Ashley was a child of God and she would go to heaven even if she was not baptized. I knew she was right but I still wanted her baptized.

On September 18, 2008, Ashley was baptized over our coffee table in our family room at 10:30 p.m. by a Lutheran pastor. Ashley's pediatrician had found a Lutheran minister who would be willing to baptize Ashley at our home no matter what time of night. Our pediatrician did not know we were Lutheran but yet she found a Lutheran minister. The next day, Ashley had surgery.

Ashley's surgery was supposed take a few hours but eight hours later and Ashley was still in surgery. Handing my daughter over to a nurse was the hardest thing I ever had to do. I remember watching the nurse walk down the hall with my daughter in her arms, wondering if I was ever going to see her again. The last thing, I did was give Ashley a kiss on the forehead, and as she was taken from me, I sang, "please don't take my sunshine away." As the doors to the operating room shut behind my daughter and her nurse, I prayed for a miracle.

The hours waiting for Ashley to come out of surgery were the most difficult in my life. Those hours seemed to take days to pass. Those hours allowed me to think, to think things I shouldn't; things like what if she dies, is my baby dead, what if she can't be fixed, what if I can't help her. Sure I prayed, I cried, but I couldn’t stop thinking that something horrible happened.

Finally, almost 8 hours after Ashley was taken to surgery, her surgeon walked into the surgery waiting room. All of the other surgeons spoke to their parents in the waiting room; we were escorted into a private room. I remember grabbing my husband’s hand and squeezing it; he squeezed back. As we sat down across from the surgeon, we learned the cyst was removed and was not cancer but that Ashley had a liver disease. Her liver disease was called biliary atresia. Bilary what? The surgeon went on to explain that her disease would require her to need a liver transplant before her first birthday or she would not survive. We were in the private room for 30 minutes talking to the surgeon but all I heard was liver disease, liver transplant, no cure, no cause and would not live. This could not be happening.

After our talk with the surgeon, my husband and I didn’t say a word to each other; my husband was in tears and I was too stunned to talk much less cry. As my husband called my mom with the news, I just slid down the wall in the hospital hallway, put my face in my hands and cried.

Ashley came out of surgery well, but she was placed on ICU and on a ventilator. The horror of seeing our tiny six week old baby girl with wires, tubes and monitors keeping her alive was not something I wanted to remember much less experience. Ashley was swollen; she was very yellow; she didn’t look anything like the beautiful baby I handed to the nurse hours ago. It was at that time that I realized how sick Ashley really was. It was also at that time that I prayed, “God, you gave me this beautiful baby to love and care for over 10 months ago and I am not going to let you have her back.” “God, she is my child now and I will raise her to be a child of God but you cannot take her from me now.”

Ashley spent several months in and out of the hospital her first year of life, she had to be resuscitated several times. Twice we had doctors tell us that they would do everything possible to save our daughter’s life. More than once I had to tell Ashley’s big brother that Ashley may not come home from the hospital. No parent should ever have to go through what went through with Ashley during her first year of life.

The reason I believe in miracles is because I live with one. The doctors cannot explain why Ashley is still here but I can; she is a miracle from God. During Ashley’s first year there were many miracles witnessed. However, even now 9 ½ years later we are still experiencing miracles. Ashley still has her originally liver; she hasn’t been transplanted yet. The doctors said she would make it past her first birthday but she did; she has had several birthdays since and that’s a miracle!

I know that we will continue to experience miracles surrounding Ashley. We hope to experience the miracle of liver transplantation. We hope to experience the miracle of a cure. Miracles do happen, if you don’t believe, just look at my daughter.

Every year at the start of the New Year, I take a moment to reflect on the past. Each year I ask myself a few questions. Do I have any regrets? Would I change anything? And how can I make things different for the New Year? My answers have always been the same. There are no regrets, there is nothing I would change, and the next year will be no different. It wasn't until my dad passed away in late December 2006 that my annual questions took on a different meaning.

The year following my dad's death, I found myself wanting to please him even more. I wanted him to look down on me from heaven saying, "That's my girl, good job." But in that year I made many mistakes that I am positive disappointed my dad. Those mistakes and the love I have for my dad made me answer those New Year questions differently.

Do I have any regrets? There are many regrets starting with not being true to myself and others. Would I change anything? Change is hard and changing the past is impossible but I can learn from it and not make excuses for it. How can I make things different for the New Year? Making things different takes honesty, perseverance and strength. This year I started my year saying the Serenity Prayer and I will end the year with the same prayer.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

Reciting the Serenity Prayer daily should help me have a better year than the last. Maybe next year, I won't be asking myself those annual questions but maybe I will be content that the prior year went just as it should have. Happy New Year!

Planning a boy's birthday party can be both fun and challenging. When planning a boy's party keep in mind the likes and dislikes of that child. Creating a themed birthday party can be memorable not only for the birthday boy but for his guests too. Themed birthday parties can be done at any age.

First birthday parties are usually centered on family. However, you can still create a theme for this milestone birthday. First birthday's can reflect the child's first year of life. Make a framed picture collage of the child's first year of life. Provide an autograph book for guest to sign as they arrive for the party. The autograph book can be used not only for guest to sign but they can also leave messages for the birthday boy. Taking pictures of each guest with the birthday boy can be added to the autograph book.

When planning a birthday for boys turning 2 to 5 years of age can be as easy as creating a themed birthday party around the latest fad for that age group. Some ideas for parties for this age group are Rescue Vehicle Party with a cake and Piñata to match. A clown party with face painting and games like Pin the Red Nose on the clown.

Once your child is in elementary school, parties tend to include many friends. These birthday parties can be simple such as skate parties, miniature golf parties to the most complex parties such as Karaoke parties, slumber parties, to Scavenger Hunts. There are several party themes that can be used for this age group. Some themes include a Pirate party, Movie Night party, Camp Out party, Dinosaur Dig party, etc.

Middle school and high school boys love parties that involve sports or some kind of challenge. These parties can have themes such as a Survivor party, Poker Party, Football party. A big hit is an Extreme Sport party where you create an obstacle course that challenges the athleticism of the birthday boy and his guest. You can also create a Scavenger Hunt birthday party for this age group. Have the guest and birthday boy go door to door in the neighborhood in search of certain items on a list. This can be done in teams and the team with the most items checked off wins the Scavenger Hunt and a prize.

Whatever party you plan for your birthday boy be sure to include him in the planning process. Give him a choice on what themes are acceptable and affordable. Theme parties are a great way to involve everyone in the party and they provide a memorable experience for everyone.

The baby of the family, the outcast, the black sheep, and the family embarrassment created a wedge between us and her. For over twenty years she decided that drugs and alcohol were more important than her family. For twenty years, we tried to remain a family in spite of and because of her.

When asked, I tell people that I have two sisters and no brothers, only to remember later that I really have three sisters. I don't intentionally leave off my youngest sister's name when talking about my family; it's just that she has removed herself so far away from our family that I forget she exists.

I choose not to talk about my little sister because I am embarrassed, not because she embarrasses me but because somehow I have failed as an older sister. As an older sister, I should have protected her from the horrors of drugs and alcohol.

Forgetting that I have a little sister is not easy, it breaks my heart. It's difficult on my mom and it was difficult on my dad. My dad died and my little sister was too high on drugs to attend his funeral. Being angry at my little sister is easy and painful.

We tried rehab, we tried intervention, we tried tough love, we tried showering her with love; nothing worked. She continues to push us away while she pushes cocaine up her nose. Being raised in a close-knit, family-oriented environment, you would think she would run to us when she had problems instead of the drugs.

As a Christian, I have opened my heart to still care for my little sister as she is but I find it difficult to love her. Her life, the life she has chosen to live, is so far from the life I live and the life I dream for her. It's hard watching her fall in the depths of despair so I choose to look away.

However, just because I chose to look away doesn't mean that I don't pray for her. Praying for her gives me a sense of comfort. Praying for her gives me hope that maybe someday my little sister will blend with our family again. Praying for my sister means that there is hope that someday I may have my little sister back.

The power the drugs and alcohol have over my little sister is so unfair. How can we compete with something that makes her feel the way the drugs make her feel, whatever feeling that might be? My little sister should not be a stranger to me; she should be my best friend.

Today's teens seem to be under more stress than the teens of a decade ago. Teens like adults need to learn how to manage their stress through relaxation. By teaching teens to relax under stressful situations, teaches them valuable stress management skills. There are many factors contributing to the stress of our teenagers today.

Teenagers who are stressed often are anxious, withdrawn and angry. Stress in teenagers can lead to drug use and illicit behavior. It is important that parents teach teenagers how to manage their stress. There are several techniques that teens can use to relieve and manage their stress.

Teenagers who exercise regularly are better equipped to handle stress. Exercising can be an important outlet for frustration. Exercising usually helps release bent up tension caused by frustration and anger.

Eating regularly and eating healthy is also important part of releasing the stress in your body. Do not allow your teenager to skip meals, skipping meals causes hunger which can lead to anger and short-tempers not to mention illness which in turn creates unwanted stress.

Refraining from drugs, tobacco and alcohol use not only keeps the body healthy but it prevents stress caused by these destructive habits. Teens who are doing drugs and alcohol are usually keeping it from family, keeping secrets can cause stress.
Taking a break from the stressful situation will also help teens cope. If the stress is caused by social environments it might be helpful to find a peer group that will combat stress together while in social settings. Having a network of friends to communicate stressful feeling can result in positive behavior.

Teens can cope with stress by listening to music, taking a walk, talking to a friend and talking to family. It is a good idea for teens to keep journals. Writing in your Journal daily can help you deal with the stresses of the day.

The most important thing a teen can do to help combat stress is to be positive, surround themselves with people who will help each other cope. Parents should help the teen by listening to them, by being aware of their feelings and their environment. Also, getting involved in your teens school and sports programs will not only help your teen with stress but it will create a close relationship with your teen.

By following these techniques and others, your teen will be able to manage stress better, be healthier and happier. Teens need to know that stress is normal but they also need to know that they can trust you to help them manage the stress.

There is nothing better than being a baseball mom. When you are a baseball mom the song "Take me out to the ball game" takes on a whole new meaning. There is nothing like sitting in the stands watching your little 5 year old hit the baseball for the first time. Seeing the excitement in your little man's face as he slides into home plate, you can't help but fall in love with Little League Baseball.

I knew I'd be a baseball mom when my son was just 8 months old and was pitching a baseball to his dad like he knew exactly what he was doing. My son's facial expression as he threw that baseball over handed was a "pitcher" perfect baseball face. It was at that moment that I knew my son was born to play baseball.

Realizing that being a baseball mom was in my future was a little disappointing since I really didn't like baseball. I knew nothing about baseball what equipment was needed to pay the game. I didn't have a favorite baseball team, I didn't even know the names of any of the professional baseball teams. Baseball games were boring to me and don't get me on the Skoal dipping baseball players - yuck!

When my son turned 5 in the summer of 2001, I took him down to the Little League field and signed him up for baseball. The next day I went to the local sporting goods store and bought him his first real baseball bat, baseball glove, and his first pair of baseball pants. A week later my son went to his first ever baseball practice. Watching twelve 5 year olds play baseball is more like watching twelve 5 years olds dig in the dirt on the field. They did more bug chasing then baseball catching.

Now my son is almost 12 years old, he not only plays Little League baseball but he plays AAU ball too. We are at the baseball field 10 months out of the year and two to four times a week but I wouldn't trade it for anything in the world. Watching my son grow with the sport has been such a rewarding experience for me. He truly loves the game which makes me love it even more.

Having spent 7 years on the baseball field, I now know the fundamentals of the game and my favorite professional baseball team is the Boston Red Sox - GO SOX! I am the loudest mom in the baseball stands. I love my son's teammates like they are all my boys too. My son's Little League and AAU teams are like family to me. Now I look forward to double header baseball games and baseball tournaments. I am a baseball mom and I am proud of it.

Isn't it time to say I am sorry
To make the pain go away
Isn't time to say I am not perfect
That I make mistakes along the way

Isn't it time to say I am sorry
Because of the things you do and say
Isn't it time to say I love you
And mean it in every way

Isn't it time to say I am sorry
Because you made me cry today
Isn't it time to make me feel loved
And to say that I was sent from God above

Isn't it time to say I am sorry
And I am proud you're my wife
Isn't it time to say Thank You
you are my reason and my life.

Isn't time to say I am sorry
For expecting too much of me
Isn't it time for you to say
That you are the best you can be!

Isn't it time to say I am sorry
Because I know you're not perfect
And I love you anyway.

Any type of stress in a marriage is difficult, whether it's financial, emotional, sexual, or medical. Throw a chronic illness into a marriage, the stress can be unbearable. Dealing with a chronic illness can create the additional stresses as mentioned before. It's how you deal with the stress that can make or break a marriage.

Nine and half years ago my husband and I were blessed with a beautiful baby girl. Her birth and life has turned out to be a test in our marriage due to her chronic liver disease. From the day she was born we were thrown into a whirl-wind of tests, medical terminology, lack of sleep, doctors, fear but most of all stress. Our stress is not just related to her health but because of her health we have financial stress, emotional stress and yes, sexual stress. For nine and half years, my husband and I have worked hard to keep our marriage together and our children happy.

Dealing with the financial stress related to having a child with a chronic illness is actually more difficult then dealing with the chronic illness itself. Being a one income family with medical bills piling up keeps us literally one paycheck away from being homeless. To deal with the financial stress, my husband has swallowed his pride to allow us to begin fundraising to help cover excessive medical bills now and in the future. As much as I needed to stay home with my daughter, I finally realized that I needed to go back to work part-time. And we finally had to admit to ourselves that our financial security will never be as secure as it was before our daughter's birth. However, loosing our financial security is worth it if we can save our daughter's life.

The emotional aspect surrounding a marriage with a chronic illness can directly affect the sexual aspect of marriage. If you are emotionally detached from the marriage because of the stress in dealing with a chronic illness then the sexual stress rears its ugly head (no pun intended). My husband and I have had to mark out time on the calendar just for us. We take advantage of nights out to become romantically involved again. Even if we can't get out of the house, we lock ourselves in our bedroom, have a glass of wine and well, you know the rest. Spending alone time together is very important in creating a well balanced marriage, not to mention family. Also, as my husband says, "Sex can be a stress reliever."

Dealing with the stress a chronic illness can create in a marriage does not have to end a marriage. It's how you handle; channel that stress that can make the marriage grow stronger. You can learn from that stress, learn about the strength in your marriage and be a better stronger couple because of it. The key to any relationship with stress or without stress is communication. The most important thing you can do for each other is share your feelings, share your fears, your anxiety, and yes, your stress too. However, remember to listen. Listening is a major factor to successful communication. You have to be there for one another 100% of the time. A successful marriage is not 50/50; it's 100% of each other all the time.

Being married is easy, staying married takes work. Staying married with the additional stress surrounding a chronic illness takes determination, perseverance, and strength. A chronic illness is only one stress in a relationship. It's having faith in your marriage and your love for each other that will help you manage the stress.

Organ donation, just two words to most people but to me those two words mean that there is hope! As a child my family talked about organ donation, giving of oneself so that others could live. We never thought that one of us would need a new organ or become an organ donor. Talking about organ donation was a subject discussed at the dinner table as easily as saying our prayers before every meal. It was no surprise to anyone that at age 16, when I received my driver's license, that organ donor would be placed on my new license. Not only did I have organ donor on my driver's license but I also checked the box to donate $1 to our local organ procurement organization. Never in a million years would I have guessed that my life would change because someone I loved needed to live with the help of organ donation.

When one dreams of having children, you dream of that perfect little baby with ten fingers, ten toes, a beating heart and that beautiful baby skin. No one ever dreams of having a child with a serious medical condition. No one ever dreams of having a yellow baby. No one ever dreams of a life spent in and out of hospitals just to keep your baby alive. No one ever dreams of watching their baby grow into a walking, talking toddler wondering if they will make it to kindergarten. No one ever dreams of their school age child being teased because she has a scar across her belly or because she has hairy arms due to the medications she takes. No one ever dreams of having a child only to fear that every day may be their child's last. No one ever dreams that their baby would need a liver transplant.

Organ donation to me means that I can dream of my daughter's future without fear or at least with hope. Organ donation means that my son will always have his sister to love and will not fear attending her funeral. Organ donation means that I can watch my daughter enjoy life without hospitals in it. Organ donation means that my husband and I will be forever grateful to someone we don't know but will live on in our daughter. Organ donation means that my daughter can live a normal life and dream of having babies of her own.

How has organ donation changed my life? Organ donation has changed the way I dream, how I hope and how I pray. The words organ donation are not just two little words, organ donation are words to live by, organ donation are words of LIFE