Short Bowel and FAP

It's common for those of us without our full intestines to share the diagnosis of Short Bowel Syndrome (SBS) in addition to the original reason for our reduced length in intestines. I didn't think much of it when I scanned rare disease lists and saw SBS listed; I didn't grasp SBS as a disease or condition. I've lived with SBS so long that it had become to mean just a side effect of my surgeries. The more I read the more I began to realize SBS is not just a side effect, it is its own disease and requires its own treatments beyond supplements for vitamin and mineral deficiencies. It's a simple yet complicated result too many of us experience from our surgeries.

"Being aware, constantly, that dry chicken, steak or ribs will likely cause an intestinal blockage as well as vegetables such as green beans is only one of the checklist items I need to take care of. A daily dose of extra iron and vitamin D in addition to a daily regimen of prescription drugs must be scheduled along with adequate time for the extra restroom visits as I plan my activities. The constant pressure is like an irritating buzzing mosquito that you can't possibly get rid of and that routinely settles in for a more thorough attack; intestinal blockages, ER visits, hospitalizations, outpatient procedures, regular checkups, and the list goes on. No wonder my family accuses me of having a temper, I do have issues that cause an everlasting amount of psychological pressure. Part of this pressure is the fact my daughter also faces a daily life filled with chronic pain and health issues associated with her own short bowel." - Living with short bowel as described by my mother.

Previously I discussed my perceptions of my health issues as separate from FAP. FAP itself is the original source of my health issues as without FAP I wouldn't have these issues. Yet these issues aren't symptoms of FAP. They're symptoms of the SBS, a completely separate diagnosis. My understanding of SBS expanded from a simple result that increases difficulty absorbing nutrients and causes diarrhea that may require medication to a revelation that connected all the dots of various bits of information to create a large net capturing multiple issues and symptoms. This validated what I already knew but hadn't fully realized. In addition, I have learned new aspects of SBS that I never knew or wouldn't have connected with SBS. For example, edema of the legs and feet may occur as a result of malnourishment from SBS.

Prior to this I simply explained away bothersome symptoms as my body having a sensitivity to food. I now understand that the bloating and cramping pain I experience whenever I eat is actually the SBS. The 5 years of struggles with excessive malabsorption and inability for any medications to control stools wasn't just my body recovering from surgery. It was my SBS and a new period of intestinal adaptation that was brought on by my second round of surgeries in high school. After my first round of surgeries in grade school, I was left with an ileostomy and the SBS wasn't as apparent as it has been with my straight pull thru. With my ileostomy, I remained malnourished until I was placed on a weight gaining diet the following year and I maintained appropriate electrolyte levels and weight until my next set of surgeries in high school. I attribute the differences in my ability to maintain electrolytes to the position of my intestine. With an ileostomy, there is more folding or kinks in the intestine as it is moved to exit the abdomen. However, with a straight pull thru the intestine is stretched into straighter positions for reconnection to the rectum. My SBS has been present since my first round of surgeries but the symptoms of SBS weren't as visible or severe until the straight pull thru was performed. One nice side effect though is I will never have to limit my sodium intake!




My Central Line for TPN

My mother's description captures the daily struggles of short bowel perfectly. My mother and I have mild cases of short bowel compared to others who require more drastic measures of treatment to manage SBS symptoms and obtain nutrients. I briefly required TPN or Parenteral Nutrition for about 6 months in high school due to uncontrolled SBS that led to an ulcer at the area of reconnection. This ulcer led to a hole in my intestine. This experience provided a deep appreciation for anyone requiring ongoing artificial nutrition treatment as this was a major inconvenience, uncomfortable and at times painful ordeal. My catheter site hurt and was tender; I was unable to wear regular shirts as the fabric irritated my catheter site. However, this allowed me to the be only student in high school allowed to wear spaghetti strap shirts at school. Ha. The slightest amount of pressure on the site was painful; riding in a car was an inconvenience as the seatbelt placed too much pressure on the site. The catheter at times would pull against my stitches causing pain and at the end of 6 months, I had only one stitch remaining holding my catheter in my body. I'll just say, that created a constant level of pain I would be happy to never experience again. I required IV antibiotics for an infection obtained through the catheter. I couldn't take a shower and washing my hair over the sink or tub was painful and worrisome due to the risk of infection from any water exposure. It was tiresome for others to point, stare, and ask questions about the catheter dangling from my chest. To make light of the situation though, I came to call the catheter my jewelry.

Regardless of the level of severity one experiences, SBS deserves our attention and care to properly maintain our health the best we can. It is difficult at times but it is manageable. Sometimes all we need is time for symptoms to improve; time for our bodies to heal and adjust to a new norm.





NORD is a wonderful resource for information on more than 1,200 rare diseases. NORD offers a full report on SBS. For additional information and resources specifically for SBS visit Short Bowel Support

A Mission for Early Cancer Detection: Daniel's Story

This is a guest post by Daniel Shockley

My name is Daniel Shockley, I reside in Hawaii and retired at age 43 from the Navy in 2003 after serving 22-years on active duty. My last three years were spent while deployed to Middle East in direct support of OPERATION ENDURING and IRAQI FREEDOM. Fast forward to May 2012, I underwent my first colonoscopy that was scheduled at age 51. The procedure was performed by Dr. Fernando Ona of the GI Clinic at Spark M. Matsunaga Veterans Affairs Medical Center, Hawaii. Approximately 100 polyps were discovered throughout my colon, rectum, and anus. A large mass was found in my ascending colon causing an 80% blockage. Based on these findings I was immediately referred to Susan Donlon, Certified Genetic Counselor, Tripler Army Medical Center (TAMC), Hawaii.  It was suspected I may have a gene mutation which can be confirmed by DNA testing.  The DNA samples were gathered and sent to a molecular oncology laboratory in California.  Approximately three weeks later the results arrived and revealed the rare gene mutation, Adenomatous Polyposis Coli (APC), which is an inherited disorder best characterized by the development of a myriad of polyps in the colon. These findings confirmed the diagnosis of Attenuated Familial Adenomatous Polyposis (AFAP), which is a variant of Familial Adenomatous Polyposis (FAP) that can best be characterized by fewer colorectal polyps (commonly 10 – 100), later age of onset of polyps (mean age of polyp diagnosis, 44 years), and cancer (mean age, 56 years).



Daniel and Dr. Henry Lynch

It should be noted, Dr. Henry T. Lynch, Creighton’s Hereditary Cancer Center, Department of Preventive Medicine, is credited with the discovery of AFAP. Additionally, Dr. Lynch is one of the founding fathers of genetic research. There are currently no statistics on AFAP. However, it is estimated that <0.03% of the global population have this condition.

Upon receiving the diagnosis of AFAP, Lt. Col. Ronald Gagliano, Chief, Colon and Rectal Surgery and Director, Surgical Research, TAMC along with Susan Donlon, informed me surgery was inevitable, as there is no cure for AFAP.  It must be noted leading up to the confirmation of AFAP and prior to the colonoscopy, I considered myself to be in good health with no indications of any problems with my colon.  Furthermore, there is no known family history of colon problems. Dr. Gagliano and Susan Donlon encouraged me to read about my condition, the type of surgery required, and life after surgery. This is when my personal research journey commenced.  My focus from the onset was to embrace this condition.  My quest was to better understand this disease and what impact it will have on my life. Dr. Gagliano recommended, based on the DNA test results, that in the best practice of medicine colon surgery is needed.  I concurred and the surgery, known as a total-proctocolectomy with ileostomy, was scheduled at TAMC.

 The surgery was successfully performed at TAMC in July, 2012.  The rectum, anus, and entire colon were removed. A large mass in the ascending colon turned out to be an 8cm tumor. The pathology report revealed the mass was a tumor and was listed as high grade dysplasia.  As a result of my surgery I have an ostomy which is a prosthetic device that collects my waste. I have adapted to this lifesaving and life changing surgery. To date, I continue reaching out to numerous organizations, both local and abroad, in an effort of sharing my experience. My mindset has been, and continues to be: I tend not to think about things I am unable to control. Medical issues I am unable to control. What I can control is my attitude and after 5 decades on God's green earth my positive attitude has brought me this far, why change now! Furthermore, I can attest that worrying is not the cause of my condition. Therefore, worrying will not make it go away. Based on my personal research of this disease, I am able to better understand my condition, overcome adversity, adapt to my new lifestyle, and persevere with my life. .

 On a personal note, I consider having AFAP as a challenge rather than an obstacle.  I continue to press on with my life with business as usual approach.  As a result I have adopted four (4) words to reflect on as part of my new journey in life as an ostomate and advocate for colorectal cancer awareness focusing on the importance of early detection:

• Attitude = 100% (The English language contains 26 letters. If the letter "A" represents 1 and the letter "Z" represents 26 take the letters of ATTITUDE and add them up. ATTITUDE = 100) It is important to note that the word ATTITUDE is the only word in the English dictionary that equals 100.

  Having a positive attitude attributed to my successful recovery.  As a result my transition to this new style as an ostomate was with minimal difficulty. Furthermore, I believe attitude is permanent and mood is temporary. It is possible to have a positive attitude and be in a bad mood.  However, by maintaining a positive attitude it will have a direct impact on your mood and the outcome of your life. Do not let a bad mood affect your attitude.  I remind myself of this daily and try to remain positive while pressing on with my life.  

• Faith:  Firm Assurance Influenced Through Hope (An acronym I created on my observation of the word faith)

  My analogy of the word FAITH:  Having the ability of believing in something you are unable to see, but you know it is there. Example: You cannot see the prevailing trade winds; however, you can see what affect they have by the swaying of the palm trees.  My positive attitude had a direct impact on my FAITH which allowed me to have a significantly better chance of overcoming adversity.

• Adapt:  Attitude Determines the Ability for a Positive Transition (An acronym I created on life as an ostomate)

  My analogy of the word ADAPT:  After undergoing total-proctocolectomy with ileostomy surgery I had to adjust to this new lifestyle without a colon.  An ileostomy can be best described as a stoma.  This is a surgical opening constructed by bringing the end of the small intestine out onto the surface of the skin on the lower right abdominal area.  The intestinal waste passes through the ileostomy and is collected in a prosthetic pouching system which is adhered to the skin over the stoma.  The pouching system requires changing every 3 – 4 days.  Having an ileostomy is a transition to a life changing experience. 

  It is evident my positive attitude directly influenced my faith which directly aided with my ability to adapt to lifestyle as an ostomate. From the onset I embraced being an ostomate as a challenge rather than an obstacle or disappointment.





 Honolulu Managing Director Ceremony Proclaiming
March 2015 as Colorectal Cancer Awareness Month

• Passion:  My positive attitude along with my strong faith directly impacted my ability to adapt to this new lifestyle with an ileostomy.  As a result I have a yearning to share my story, the importance of colorectal cancer awareness, early detection and AFAP.  This in hopes it will be a source of encouragement and inspiration for the masses. Additionally, on behalf of the Fight Colorectal Cancer and Colon Cancer Alliance I have been asked to represent both organizations in Hawaii and request Hawaii Governor David Ige and Honolulu Mayor Kirk Caldwell to proclaim March 2015 National Colorectal Cancer Awareness month in Hawaii and Honolulu respectively.  



Governor Ige Proclamation of March 2015 as
 Colorectal Cancer Awareness Month

Proclamation ceremonies were conducted in the Mayor’s conference room (above), Wednesday, February 25 and in the State Capital Ceremonial Room (right), Friday, March 13, 2015. It should be noted, these are the first ceremonies of their kind for this campaign.

Together we can make a difference on sharing the importance colorectal cancer awareness and early detection.

Daniel Shockley was diagnosed with Attenuated Familial Adenomatous Polyposis (AFAP), a subtype of Familial Adenomatous Polyposis. Since diagnosis, surgery to remove a pre-cancerous tumor and create an ileostomy, Daniel has made it his mission to spread awareness about colorectal cancer and the importance of early detection. In addition to public speaking, Daniel also uses his experiences to advocate for legislation in support of colorectal cancer detection and treatment programs. All of Daniel's efforts can be followed through The FAP Gene Support Organization, based in England. 

Learn the differences between FAP and AFAP.

Stress and Chronic Illness

This Post includes Sponsored Link

Stress is a powerful energy that can help and harm us. Stress can serve to motivate us to take action and complete tasks but it also can place great pressure on our mind and body with negative consequences. Stress affects every part of our body and often triggers or exacerbates symptoms and diseases. Find a full description of the effects of stress on the body here.

With small amounts of stress, I notice the inconvenient, annoying symptoms of muscle tension, irritability, anxiety, and difficulty sleeping. However, when I have intense stress the symptoms worsen and in addition I experience increased degenerative joint pain, sadness, often have crying spells, and my SBS symptoms worsen. The combination of inadequate sleep and stress sends my SBS symptoms into hyper drive. I'm unable to tolerate foods, even liquids, and any movement becomes unbearable. Ingestion increases the amount of waste produced to be expelled at a rapid rate and movement further increases the frequency of those restroom trips. The ongoing barrage of this cycle results in pain and soreness that spreads to my entire body. Sitting and lying down are even difficult as my body struggles to slow down the SBS.
From the onset of this cycle, I know my stress is out of control and I'm walking a thin line; I need to check my stress immediately.

We all experience and manage stress differently. I'm very Type A Personality, I'm a planner and a problem solver. For me, I have to tackle the problem and find a resolution. However, once I've hit the boiling point the first thing I must do is cease ingestion and find time and space away from everything - work and activity - so that I may allow my body to begin to relax. Once I secure this, I can begin resolving the source of stress. Identifying and establishing a game plan is a must for me followed by expressing my feelings through verbal or written word and utilizing a sounding board.

There are many options available though to help manage day-to-day and chronic stress to protect our bodies and prevent reaching the boiling point. Consider the following in your own regiment for stress management:

• Stress Management Diet - food plays a vital role in our health and eating foods rich in vitamins and minerals that promote healthy brain chemicals can help lower stress hormones. Participating in cooking classes can provide an additional benefit for learning new ways to create healthy and tasty meals incorporating such ingredients. Cooking classes may even double as a stress relieving activity. Communities often have various cooking classes available, such as the one offered by Chef Alex Friedman Master Class.
• Meditations - the different types of meditations are endless. Yoga, Tai Chi, Pilates, and Qigong are great individual or group exercises that include meditation. Guided meditations are also incredibly useful and can be learned to be used on your own in any situation.
• Breathing - although breathing is used in meditation, there are different exercises for focused breathing that are very helpful.
• Sleep Well - getting adequate and restful sleep is a key factor to protecting one's physical and mental health. This can be quite challenging when we are feeling stressed or anxious.
• Activity - engaging in activities of enjoyment, socialization, relaxation, distraction, and exercise all serve to reduce anxiety and stress. Get back to a hobby or try a new one out, spend time with a loved one, pamper yourself with a massage, hot bath, skin detox, watching a sunset, music or books, and get some physical activity. 
• Support - we can't go about life on our own. We all need someone to lean on for support. Utilize that person(s), that's what friends and family are for - to help one another. Reach out and find more individuals to add to your support system.
• Take Time For You - everyone needs downtime to relax. Sometimes it's hard to make time for this, but it is important. This time allows for decompression and recharging - both needed for tackling the next task you have.

The Touch of Cancer

Colon Cancer Awareness Month always leads me to reflecting upon my own family's experiences with colon cancer. I've mentioned before that FAP has ran in my family for many generations and we have had countless numbers of members die from colon cancer. Although my father's family doesn't have FAP, my paternal grandmother died of colon cancer and a very beloved paternal aunt of mine also unexpectedly developed and survived colon cancer.

Growing up with both my grandfather and mother living with FAP allowed me to gain a lot of firsthand knowledge and understanding of ostomies, FAP symptoms, and eventually cancer. I realized that the majority of people weren't experiencing what my family was and yet it was all completely normal to me. With each generation of FAP in my family, the more we've gained in information and understanding.

My grandpa survived colon cancer and appeared to lead a healthy, stable life. He developed colon cancer in the late 1950s and had his colon removed and a reconnection. I have vague flashes of visiting him in the hospital in 1994 when he developed rectal cancer and underwent another surgery for ileostomy and radiation. I never saw him struggle with his health after that until the last year of his life. He didn't let his ileostomy stop him from what he enjoyed. We went on several fishing trips, hiking through the woods, canoeing and camping trips every year. My grandpa was one of the most cherished individuals in my life. He taught me indescribable amounts of knowledge, skills, and values; we spent countless days and sleepovers together. There was no one like my grandpa and in my eyes, he could do no wrong. He was a strong, independent man with a great love for the land and his country; he fought in World War II and was awarded a Purple Heart. He saw and experienced unimaginable horrors that he kept locked away, rarely to be spoken of again. He was a no non-sense man and yet he could laugh and play in the most fun loving ways with his grandchildren.


Me and My Grandpa

Then one day, the health of this robust man began to decline. It started with reflux after eating at times, this reflux continued to worsen and he began vomiting small amounts and then large amounts after ingestion. He was rapidly losing weight. He sought medical care at our local VA and was prescribed anti-reflux medication and was advised that his esophagus was narrowing causing the reflux and vomiting. He underwent procedures to place stent like devices at the opening of his stomach and within his esophagus to reduce the vomiting and reflux. This reduced the symptoms temporarily but never provided the necessary relief. His weight continued to decrease, his body was wasting away already. Unfortunately, thorough testing wasn't performed from the onset of his symptoms but instead 4 months later when he was admitted to the VA hospital. After he had his ileostomy, he was never told he should have routine endoscopies and therefore never had any performed again until this admission. Once he finally underwent an endoscopy, the true culprit of his symptoms was discovered - FAP had caused stomach and esophageal cancer. This discovery came too late, cancer treatment wasn't a viable option and hospice was elected. Over the course of the next 3 months, my parents and I visited him routinely to help provide care and spend as much time as we could with him. Towards the end of his life, his mental capacity was altered and he was succumbing to the vast effects of cancer. I watched him mistake tv remote controls for the telephone as he tried to answer the ringing he heard. The bedroom I grew up in taking naps and watching wrestling with my grandpa was now his deathbed. He was no longer speaking and rarely conveyed any acknowledgement of his loved ones around him. I held his hand and told him how much I loved and cherished him and although deeply saddened, it was time that he left this earth. He squeezed my hand and I knew my grandpa was still there trapped within that cancer ridden body. I knew he heard me and he gave me the greatest gift he could - a hand squeeze. He died the next day.

My mom was the only child of my grandpa's to inherit FAP and expected her experience to be much like his had been the majority of his life. My mom's journey was fairly calm until she unexpectedly received a diagnosis of colorectal cancer shortly after giving birth to me. My grandpa's health wouldn't change for the worse until 14 years later so everything up to this point was considered normal in our family. My mom expected to have the same surgery as my grandpa's first surgery, large bowel removal and reconnection. My parents were surprised with different news - a permanent ileostomy and very little information. Soon after my birth, my mom had her surgery and experienced a multitude of complications and nearly lost her life. Unlike my grandpa, whose struggles I rarely witnessed until the last year of his life, I witnessed my mom's struggles daily with her energy, ostomy, and frequent intestinal blockages. I've been fortunate to never have issue with food causing intestinal blockages. Yet my mom experiences intestinal blockages nearly monthly in spite of her best preventative efforts and would often require hospitalizations from the blockages. Fortunately, her number of hospitalizations have significantly reduced over the years. In 1998, she underwent the Whipple Procedure due to a precancerous FAP polyp in her duodenum. The surgery was successful but she had a difficult recovery with extreme pain and stomach issues that seriously impacted her ability to eat for an extended period of time.


Me and My Mom

My mom is my true inspiration and my hero. We experience the common mother-daughter relationship issues but I couldn't ask for a better mother. She has always been there for me, so very understanding and supportive. Because of her FAP experiences, she's able to fully relate to my health challenges. That's an incredible and rare gift a mother can give her child, especially when it comes to a rare disease. My mom let me know I wasn't alone in this journey when I didn't know anyone else outside of the family with FAP. Even in her own health challenges, I'm one of her first thoughts. When we were both simultaneously hospitalized, she chose the adult hospital connected to the children's hospital so that we could visit. As an adult, I've had the honor of returning some of the care she so quickly and willingly provides me. FAP has placed very difficult choices and tasks upon my mom regarding herself, her father, and her child and yet she faces each obstacle with an intense resiliency and quiet strength. I would never wish any health issues upon my mom but I can't help feeling grateful that if both of us were going to have health issues anyway, I'm glad we share them. By sharing this disease, she was able to teach me about the disease, ostomies, and the values I would need to develop the skills necessary to live with this disease. I would be lost without her. 

Like most families affected by FAP, colon cancer is sadly part of our family. I think of the numerous ancestors my family has lost to colon cancer and how it has touched each of my family members. The rarity of FAP, a colon cancer causing disease, is evident in each of our stories. We all experienced doctors who were unfamiliar with FAP and thought cancer stopped with the colon with FAP. Medical care and informed medical decisions were not properly provided to all of us. This lack of information and proper medical care significantly impacted us and our outcomes could have been drastically altered with the proper information and treatments. My grandfather and mother could have been diagnosed significantly sooner, received treatments at the early stages of cancer and not have experienced such risks to their lives and ultimately death for my grandfather.

This is yet another reason why research and awareness is essential for the treatment, cure, and survival of  individuals with rare diseases and cancers. The FAP Research Fundraiser was a huge success and we raised $640 to start a FAP Research Fund with the National Organization for Rare Disorders. You can now find all kinds of products with various designs with profits donated to NORD FAP Research Fund at Life's a Polyp Shop. I hope you'll join our efforts.

Bye Bye Baby

The finality of spoken words are the hardest to push past our lips, to break our silence. Once spoken, the glass is shattered leaving us only with the reality that we are now forced to accept. In our silence we may delay the inevitable until our psyche is more prepared.
In Alone Together and Supportive Lengths, I spoke about a heart wrenching struggle that I've been slowly processing and gradually accepting.

I finally have reached a level of acceptance to allow myself to publicly disclose that my husband and I have come to the decision not to attempt to have any children.

This has been an excruciating and devastating decision for me. Through this process I learned that the best choice is not always the choice you want. Those close to me know that I've dreamt about Ending the Family Cycle through IVF with a surrogate and planned for this for over 15 years. I never believed anything different would happen. I maintained an unrealistic optimistic hope and pure belief that I would have a child in this manner and it would happen. There were no ifs, ands, or buts about it...it was happening. I planned out every detail I possibly could throughout the years. I planned names, nursery themes, educational opportunities, birthday themes, godparents and legal guardians if needed, parenting styles, etc. I've had my heart set on a baby and the joys and struggles of raising a child. And now, I must say goodbye to my baby. My baby, whom I will never get to see on an ultrasound screen, hear a heartbeat, feel kicking my surrogate, or hold in my arms because this baby will never have existed within the womb or in the world. I must say goodbye to it all, to my dreams, my hopes, my plans. The baby items I've slowly collected and saved for the big day when I would welcome home my own baby, I must pass these items on to a living baby, not a dream world baby. I know all the reasons to have a child and the joys that come with a child. I absolutely cherish the times with the children in my life and the memories of children I taught and cared for throughout my educational career.

 We must let go of the life we have planned, so as to accept the one that is waiting for us. - Joseph Campbell

In spite of all the reasons to attempt to have a child, there are a lot of reasons not to as well. After extensive contemplation and discussion, I find the reasons not to outweighing the reasons to in our situation.

1. The primary reason I sought sterilization was to be able to prevent passing FAP on to my child. I survived unimaginable experiences during my childhood and I can't bear the thought of my child going through the same experiences. To have a child is a personal decision and I hold no judgments over anyone's decisions regarding their family planning. This was my family planning decision. I didn't want to attempt having a child unless I could prevent my child from inheriting FAP. As I recently discovered as well is even with the genetic counseling and IVF, there remains a minimal chance that FAP could be inherited. Any chance is too large of a chance for me.
2. Another reason I sought sterilization is that I personally am appalled and terrified by pregnancy and childbirth. I don't know how I came to have this view, but both honestly repulse me. I find pregnancy and childbirth unnatural and a twisted joke from the universe. Cabbage patch kids type development makes much more sense to me. I know this is a very strange view for most people to understand and I don't expect anyone to agree with me. It's just my personal view and this view works fine for me as I am also medically terrified of pregnancy and childbirth. Due to my abdominal surgeries, previous twisted intestine around organs complications, low pain tolerance, and short bowel syndrome I truly believe, without a doubt, that if I were to become pregnant I would actually die or I would be in so much pain and misery that I would wish I would die. I don't want to risk my intestine twisting around organs again or if I required a C-section and risking my intestine to be cut or nicked. I have no intention of endangering myself and risking failure of my straight pull thru.
3. My current health, although stable, still provides for plenty of sick days where I don't feel able to move. How am I to take care of a baby when I have no energy, am running to the restroom constantly, experiencing high pain, or am unable to move very much? It isn't fair to my husband to expect him to take on the majority of caregiving for our child. I know he would but my child would deserve both parents to be involved. And with my health, I never know when the stability will end and my health will decline or when I'll die. I don't want to leave my husband to be a single parent with a young child.
4. My husband now has his own health issues as well with diabetes. Although diabetes is a very manageable disease and we are taking every effort to manage it properly, I still worry about his future health. He is also 10 years old than me. I don't find it fair to my child to have two chronically ill parents and I don't want either one of us to become a single parent with a young child.
5. Financially we have two options at this time. We can either use our finances to attempt to have a child; an attempt that may not work and still result in the loss of our finances. Or we can use our finances to start our life goals. We want to move to our land, build a small farm and small business. We can advance and complete these life goals at a much faster rate without first spending our finances on the attempt to have a child. With my husband being 10 years older than me, we are both ready to advance our life goals.

I began this disclosure a few months ago and since then, my husband was unexpectedly hospitalized with diabetes and my energy has been focused on his health and navigating through the terrain of diabetes, settling hospital expenses, and arranging care. I'm not sure if I've come to a full acceptance yet or I've been too consumed with other crises. A flooding of peace washed over me after a dream I had about having a baby. I dreamt I had one more attempt to try the process for a baby, a last ditch effort my psyche gave me. But even within the dream, reality seeped through and the plan failed. We couldn't accomplish both goals of a baby and our future life goals. I awoke in the morning feeling defeated with the finality of the situation. With all options exhausted, my mind was able to begin to rest and accept that we had made the correct decision for us. I am more at peace now than I was when I first started this post. I haven't been breaking into tears at the mere mention of childlessness or fertility issues. I still feel saddened when I prolong my thoughts about our decision but ultimately I am at peace and no longer debating the issue.

To help me obtain a sense of closure and to welcome in positivity for our future, my husband and I partook in a smudging ceremony. Traditionally, my Cherokee ancestors went to water for cleansing. However, we didn't have access to water and decided to participate in a smudging in order to regain balance and harmony within my spirit. I invited the talented and heart touching K. Talley Photography to help us capture this moment in our lives so that I may have mementos.

 

We began by lighting a fire and giving our thoughts to the universe. I lit cedar and sage and let the flame quell itself leaving only billows of smoke. With this I cleansed myself with the smoke before proceeding to cleanse my husband. I repeated this with a mixture of sage and sweet grass. The scent of the plants filled the air and swirled about before quickly being swept away by the wind. Once cleansed, we laid the smudging sticks within the fire pit to mingle with the smoke from the previously lit fire. We meditated on our loss and what the future held for just the two of us together. I was overwhelmed with a sense of relief and loss leaving me in a melancholy state.

I clung to the scent of the cedar, sage, and sweet grass for the remainder of the day. With each breath, I felt wrapped in a blanket of comfort from the scents. We treated ourselves to dinner and spent a quiet evening together as my mind reeled around the events of the day. It was coming to a close. I was filled with a hushed anxiety, it will soon be all over and my mind will rest in the finality. This is my last step, to disclose. To shed the façade of maintaining the intent for a child. To bear witness to my soul and our future.

To view the full gallery please visit K Talley Photography