A Year in….

It’s been a little over a year living in Florida. We have met a few people, and they have brightened our days. Bill’s stuttering and tics have reduced significantly, but his anxiety has increased. I would still consider it an improvement. We all know that there is no recovering from early onset dementia, but finding ways to lessen the most distressing symptoms feels like a step in the right direction.

He is currently in Michigan helping his mom and dad who are having some health issues. It feels right, as he has the time, and he is at a stage where he can still help. We have no idea how long that will last so we will take advantage while we can.

I’m going to be honest, I am tipsy. I don’t drink much, usually no more than two, and I hardly drink at all anymore, but for some reason I blog best when I am feeling relaxed, and subsequently more honest. I don’t hide behind the “I’m okay” persona when I’ve had a drink or two. Raw honesty at its finest.

Most of the time I am okay, but sometimes life gets to me. Why is it me who gets Crohn’s, a daughter with mental illness, a son with Aspergers, and a husband with dementia?! Why do they get those things?! They don’t deserve them. They are good people. How does God determine who gets these things and who doesn’t?!

At the same time, we’ve lived in Shanghai and traveled Asia. My husband and I have traveled to Europe, South America, and Africa as well. We have been blessed. Is that the trade off?! Is life just a trade off of blessings and hardship?! Or are the hardships blessings as well?

We have recently started attending a nondenominational church. It is strictly bible based. It has been a blessing for our daughter, who had some bad experiences at a Catholic school in the past, and was feeling disenchanted with being a Catholic. She has started attending youth group and church every week, and journaling in her bible . She has made a complete turn around, and we are so very proud of her. Faith is so important in life. Having something, someone, to believe in, can make all the difference.

Before I started writing this, my daughter told me… “Don’t worry, mom, I’ll keep an eye on you,” just as I have kept an eye on her when she has been going through a difficult time, and sometimes that is enough. Knowing that you have taught your kids to consider others and that they have the compassion to look beyond themselves.

In the end, it’s a win. Our kids have grown into caring, considerate, intelligent, and loving adults. We have been blessed with a happy and (mostly) healthy family. We have faith and a love for Jesus. We are together, sometimes at a distance, but always in heart.

We are as God has always intended. We are at his mercy. It is all in his plan.

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Second Chances

The first thoughts that crossed my mind, while I was recovering in the hospital, were very basic. How do I dress now? Can I wear the same clothes, or will I have to wear overalls, or baggy dresses, for the rest of my life? Will the bag show if I wear jeans? Will I ever wear a bathing suit again? Will people know by looking at me? Am I going to have a perpetual bump on my front, right side? How do I take care of this new “appliance?” All of these things were a little scary for a 33 year old woman. It felt like these were things I shouldn’t have to worry about at my age; like I was robbed of some of my younger years.

Once I returned home, however, I discovered all of the positive results of the surgery. I required no more medication to control my disease. It was finally in remission. I didn’t have to know the location of each public restroom before entering a store or restaurant. The innumerable foods that I hadn’t been able to eat for four years were ecstatically served to me by my mother who was such a blessing and a help during those years.  I could easily hide the Ostomy bag. I didn’t have to dress differently, and if I didn’t choose to tell someone, they had no idea that I was any different then them. Finally, my kids. I could be there for my kids. I could help at school, take them to the park,  and play with them, without having to do it while lying on the couch.

Over time, I realized how strong this experience had made me. If someone had asked me if I could go back in time and change things; if I had never had Crohn’s at all, would I do it?  The answer was “NO!” Crohn’s made me who I am today. If not for this disease, I would not love life, the little things and big, in the way that I do now. I would not notice God’s beauty in so many everyday ways, and appreciate them on a daily basis. I would not have stepped out of my box to do things that I was not comfortable with, but I did……..things I never thought I would be able to do.

The Unexpected

When our first child was about two years old, I realized that my health had been slowly deteriorating. I was often out of breathe, with little action to cause it, tired, and I was having digestive issues. I made an appointment to see my doctor, not really expecting anything serious. I had no idea that this would be a pivotal point in my life moving forward.

In May of 1998, I was diagnosed with Crohn’s Disease. This can affect any part of the digestive tract, and although it can go into remission, it is a lifetime disease. My Crohn’s was basically limited to my large intestine. It became inflamed like a tire, both inside and out. It required medications to reduce the swelling, iron for anemia, due to the bleeding it caused, and a restricted diet. The diagnosis was very upsetting at first, but I soon felt that it was manageable, and went back to life as it was, with a few more pills and a few less tasty foods to eat. I was months away from getting pregnant with our second son.

The following summer, after our son was born, I started having increased symptoms from the Crohn’s. These things creep up on you. You feel like you have it under control. Change the diet a little more, change up the medication. Tell yourself that things will get better. Only they don’t.

On January 2, 2000, while most of the world was taking a sigh of relief that their world didn’t fall apart as many predicted, mine did, as did my husband’s. Or at least it began to. I went to the doctor after feeling like I had been suffering from a flu bug for a week or so, and ended up hospitalized for 2 weeks. It would be the first of a number of stays. After the pregnancy, running around with two young children, the stress of two relatives passing away around Christmas, and my denial of the symptoms, I was so dehydrated, and my blood pressure was so low, they didn’t know how I was even standing up.

In the year to come, I would have 106 degree fevers, tachycardia (racing heart), extreme weakness, handfuls of pills, a severely restricted diet, and I would go down to 88 pounds. The boys were now 4 years and 6 months. My husband had to travel quite a bit for work, and my mom would come help me. When she couldn’t be there, you would find me feeding the baby while I was wrapped in a blanket due to chills. I lived hour to hour.  Morning nap, afternoon nap, bedtime. Those were my goals to make it to throughout the day.

In the summer of 2000, I was once again hospitalized. This time for a staph infection I developed after hitting my leg on the car. For most, this would be a two day stay. For me, it was seven, including my birthday. My immune system was just too compromised from the Crohn’s.

There would be no relief for two more years. In 2001, I developed cataracts from the steroids I had to take for the inflammation, and at the age of 32, I would require cataract surgery. In April 2002, I lost vision in my eyes due to swelling of the optic nerve. This would require a hospitalization as well. Though I did eventually regain most of my sight, I still have blind spots, and have to be checked every few years.

Finally, in the summer of 2002, when all medications had been tried and none were working, I  realized that I had to take more drastic measures. I could not be there for my boys as I wanted to be. I couldn’t help at the school, or take them to the park. This disease was taking me away from my kids. I couldn’t live with that. I chose surgery. My large intestine was completely removed. When they removed it, my heart rate immediately went back to normal, and I mean at that very moment in surgery. They said it was almost perforated in so many areas that if I hadn’t been on a strong antibiotic for so long, I would have had a massive blood infection. I had no idea how close I was to dying.

I will live with an Ostomy bag, for the rest of my life. It was one of the best decisions I ever made. I have never regretted it. Not for a single second.