A Letter to Our Adopted Christmas Family

I don’t know you, nor do you know me, but you have been heavy in my heart since I heard. This December, during a time that should be joyful and merry, as we celebrate the birth of Jesus, you have lost a loved one. A mother, a daughter, a sister. It was sudden, and tragic, and my heart breaks for you.

She left you precious gifts, her two young sons, Jay, and Em. Since Jay is two years old, he may grow up with vague memories of his mama, but Em, at five months, will not. They will grow up knowing their mom, through your eyes, their loving family. They may never again feel their mom’s arms wrapped around them,  at least not on Earth, but they will have you, providing endless love and support.

I have had you on my mind constantly this last week. I have seen a picture of mom, Jay, and Em, and my heart breaks for those beautiful baby boys. For their grandma who has lost her daughter, and the rest of the family as well. Christmas will never be the same for you. I hope you can find peace knowing that she is safe in Heaven, and will be watching over the family from above.

You are beginning a journey that you never expected. It will take a level of strength that you may not even realize you possess. Those boys will not forget the sacrifice that you made in raising them, and you will say it was not  a sacrifice. It is what loving families do, and you could never imagine NOT doing it. Make no mistake, it is a sacrifice, but one you will love and cherish forever. Their mama would be proud of you, and can be at peace knowing her babies are in your hands..

When I heard from my friend, when I heard what had happened, I jumped at the chance to help. We, and several of our neighbors, buy gifts for families experiencing difficulties during the holidays. We have gotten together for breakfast on Christmas morning for years, and instead of exchanging gifts, we give to others.  It is one of my favorite December activities. I love the shopping trip, picking out things for children to open on Christmas morning, hoping to bring them smiles and joy. This year is different, though, it feels more personal, it hits closer to home, I suppose because my friend actually knew your loved one, and that it comes in the wake of a devastating accident. One that could happen to any one of us, at any moment.

It is a small act, I know it’s not much, but I hope it helps a little in this difficult time. I wish I could do more. I wish I could take away the pain you are feeling. I pray you find a few moments of happiness this Christmas, whether it’s watching the children open gifts, reminiscing about the good times with the boys’ mom, or merely being in the comforting company of family.

You are in the thoughts and prayers of many this holiday season. May God bless your family with peace and love this Christmas, and always.

 

 

 

 

I Have a Secret

I have a secret. It’s something that I’m pretty sure I’ve only told one other person before. In the worst of times; at my lowest. I feel like a burden to the ones I love.

I have always been one to get the job done. If it is mine to do, I will do it, and do it well. I don’t like to let people down. I am a list-maker (even if it is only in my head). I like things organized. I like finishing what I start, and that feeling of accomplishment when it’s done. I don’t like giving up control. After I left the working world, my job was household management and care. I was no longer contributing to the bank account, so it was important to me to take care of things at home. If I wasn’t doing that, I felt worthless.

Before I was diagnosed with Crohn’s, I had signs of the illness, but I ignored them. I made up reasons in my mind for them, rationalized what they could be from.  No one could tell, but Bill. He was the one I turned to for help, to pick up the slack when I was under the weather. In my head, I was letting him down. Passing the ball. It was just the beginning of a feeling of helplessness that I despised.

During the years when my Crohn’s was active, I relied on Bill to do a majority of the care givng, and household chores, all while holding a full-time job. I was an extra child. I could do almost nothing at home, required many trips to the doctor’s office and emergency room, and even had to count on him to administer some of my medical treatments. Things I never imagined I would have to ask him to do. It was awkward, embarrassing, humiliating. He handled it like a champ. He never flinched. All in the name of love, I guess.

As a result of, and probably as well as, this feeling, I never liked to talk about my Crohn’s symptoms, side effects, test results, or any other health related issue. I did not want to live a life based around discussions of my disease. I had no control over Crohn’s itself, but I did have control over what I filled my head, and heart with. Unfortunately, it is hard to avoid those topics when your face is blowing up from steroids, but your body is withering away. When you are depending on the care of loved ones, whether you like it or not. Talking about it, just reminded me of the burden I felt I was.

In the 13 years I have been in remission, I have been blessedly healthy. An occasional virus, a broken foot, but far and few between. I still find, however, that I can’t help but return to those thoughts. I am still very sensitive to the fear of being helpless, and dependent on others, and I don’t like to think about the possibility of my Crohn’s returning. At the mere mention of illness, or when a sniffle comes around, I jump on the defensive. I am not sick. I am not defective. I am not.

Recently, I had to undergo kidney stone surgery. It turns out, they are a side effect of my Crohn’s disease. The procedure was outpatient, so I thought that I would feel fine by the next day. Unfortunately, the recovery took longer than I expected, and after a week on the couch at home, I ended up in the hospital for a night. I had to rely heavily on Bill, and It all came flooding back. I constantly apologized. He did nothing to make me think I needed to, in fact, he told me to stop, but that burden feeling returned, if only for a short time.

Bill has always been there for me. He has taken care of every task that needed to be done, and has loved me through every bit of it. He has never questioned, complained, whined, or pouted. While I was worried about what I wasn’t doing, he was worried about whether I was going to survive. Whether I would live to see another day. When you think about it that way, it puts it all into perspective. We all have to rely on our loved ones, some more than others, but in the end they will do what they need to do, because they love us.

You are not a burden. You are not. You are LOVED.

 

What I learned from my Crohn’s Disease

Part III –  Repost for Crohn’s and Colitis Awareness week. Spread the word.  Share to increase awareness. There is hope!

As I have said before, I have Crohn’s Disease. It has been in remission for 12 years, but from a year after my diagnosis in 1998 to August 2002, it was like a wildfire reeking havoc on my body.

I spent three years, from the summer of 1999 after Brennan was born, until my major surgery in 2002, fighting for my life. I didn’t realize it at the time. It snuck up on me in little increments, and before I knew it had overtaken my body. Specifically, my large intestine. I was on a severely restricted diet, and took handfuls of medication and vitamins. I was constantly in doctor’s offices, or emergency rooms. I had raging fevers, higher than you would think a person could survive. Higher than the kind that send parents into panics. I had a racing heart, even at rest, lost partial vision in my eyes, and fought a staph infection in my leg for a week in the hospital. I never had the stomach pains that many people with Crohn’s do, but I probably spent more time in the bathroom than the average person will spend in their lives. My weight went down to 88 pounds.

In the end of December 1999, after spending the holidays (which are crazy busy during NORMAL circumstances) at my grandmother’s and Bill’s grandfather’s viewings and funerals, I got what appeared to be the flu. It went on for a week or so, and didn’t seem to be getting better. As lay down for a nap one day, I said a prayer. I asked God to give me a sign. To let me know if I should go to the doctor after the New Year, or if it would go away on its own. When I woke up, I had little insect bite-like bumps all over my body. I will never forget that moment. We are a quietly religious family. I have always been a believer, but this was a pivotal moment in my life, my belief, and love of God. I spent the next two weeks in the hospital.

I remember, sometime in the second or third year of my Crohn’s, being exhausted. Tired of the constant battle. Laying on the bed, getting ready for another nap. I, again, said a prayer. I asked if I would be feeling better the next day, and begged that I would. Within a minute or two, and I kid you not, the phone rang a strange double ring. It reminded me of the way my phone at work rang when I was getting an interoffice call. When I picked it up, it was an operator recording. “I’m sorry, your request cannot be processed at this time. Please hang up and try again later.” I ran downstairs and asked Bill, who was sitting on the couch, if he had heard the phone ring. He said yes, but didn’t notice the weird ring. Another moment I will never forget. I am still quietly religious, but much more so. I believe. No one could ever tell me otherwise.

I fought having the surgery to remove my colon for a long time. I was too young to have an Ostomy bag. I was only in my early 30’s. How could I deal with that for my entire life?! I finally gave in to myself, it was my choice. I wanted to be there for my boys, and I was just too ill to be the mom I wanted to be. When the surgeon went in for my pre-op colonoscopy, he couldn’t even complete it due to the swelling. I had put the procedure off, and if it had been done sooner I’m sure they would have told me how dire the circumstances were. I’m glad I made the decision myself prior to that. I’m glad that I did it for the love of my family. In the end, it would turn out to be so much more than that.

That surgery saved my life. Literally. It was that bad. I can now eat anything I want, I take no medication for Crohn’s, and am back to a more-than-healthy weight. And I am LIVING. Living a life I wouldn’t be, if not for said surgery. I am living a life I would not be, if not for Crohn’s Disease.

I have learned to appreciate the little things that so many take for granted. The blue sky, white clouds, green trees. The contrast between them, and the beauty of it. The breeze. The birds. The smell of fresh air.

I have learned not to take my family and friends for granted, and to catch myself when I think that I am. To take care of them, as they took care of me. To love them with everything I have. To look to them for strength when I need it, and to give strength and support to them when they do.

I have traveled farther out of my comfort zone than I ever thought I would. If not for Crohn’s we would not have traveled abroad, adopted our daughter, or lived in China. Before Crohn’s my life was ruled by fear of the unknown. After Crohn’s, by the spirit of adventure, and a love of life.

I have walked on the Great Wall of China, and stood before the first emperor’s Terracotta Warriors. I have trekked through the rainforest in Langkawi, Malaysia, and floated through the mangroves. I have basked in the hope of longevity from the waterfall of the Pure Water Temple in Kyoto, Japan, and walked the Nightingale floors of Nijo’s Castle. I have explored the streets of Ho Chi Minh City, and traveled through the Mekong Delta. I have walked the beautiful beaches of Vietnam. I have zip-lined through the trees in Thailand, and fed an elephant bananas. Right into that giant mouth. I have been to the Demilitarized Zone in South Korea, and I have stood in North Korea, in the MAC (Military Armistice Commission) building.

Through my Crohn’s Disease I learned how to live. How to love. How to learn. But I’m not done. I have so much more to see, so much more to experience, so much more to love, thanks to my Crohn’s Disease.

Second Chances

Part II……  Repost in honor of Crohn’s and Colitis Awareness week. Share the  post, raise awareness.

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 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

In honor of Crohn’s and Colitis Awareness week, I am reposting some of my Crohn’s related entries from earlier this year, for those of you who may have missed them. Feel free to share, and spread awareness, near and far!

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 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 105 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 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 need 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.