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|Newsletters: The Days Are Long, But the Years Are Short!|
The Days Are Long, But the Years Are Short!
Stephanie Harlow, 2001 LifelineLetter Award Winner
During the awards ceremony at the 16th Annual Oley Consumer/Clinician Conference, the 2001 LifelineLetter Award Winner, Stephanie Harlow shared some of the particular challenges and triumphs of her household. Stephanie and four of her sons are on HEN, and one of the boys is on HPN.
No matter how difficult getting through any one day can be, it is important to remember how precious each day is. I have the choice to have an optimistic perspective, or not. My children, like yours, are learning how to respond to the challenges they face by how I respond to my own challenges. We each have unique opportunities to teach the eating world how to interact with us. We all have the ability to put together a support system, a safety net to hold us up through the hard times. Throughout these tough times, I try to keep in mind that the days may be long, but the years are short.
After many trying years leading up to our diagnosis, we were faced within just a few months with me coming off TPN and going on tube feeds, Kody going on TPN and three other boys becoming tube fed. The psychological impact of seeing four of my boys being tube-fed was difficult to adjust to.
One of the most important things I have learned about being a parent of several tube-fed and one TPN dependent child, is that my kids use me as a mirror. In other words, their perception of themselves, of their health and especially their self-image, is based on what they see reflected in MY eyes! If I look at them with pity, sorrow, project the impression that I am overwhelmed and feel our lives are awful, well, they feel pitiful, full of sorrow, overwhelmed and that their lives are awful.
We strive to project a matter-of-fact attitude about the whole thing. Yes, we have tubes and are fed by formula but that’s okay, we feel great, so let’s get on with it. It helps for my children to see an adult dealing with it from a social aspect too. I do not ever deny that this is an unfortunate thing that has happened to us, but we can handle it — together — and we will be just fine.
Getting the Routine Down
For the enteral-fed in our household, the first year or so was punctuated by learning the individual needs of each person. Everyone had different motility needs, different amounts and different rates. Some could tolerate bolus feeds better than pump feeds. There was a lot of vomiting in those days. Some days it was hard to keep up with WHO was vomiting WHAT, and WHEN and HOW much.
It was quite a management feat just to stay on top of all the different supply needs for the household, much less keep on top of who was getting how much of what. We also had on-going food trials from time to time trying to determine who could tolerate which food protein. Every time any food was introduced we all would have delayed symptoms which would disappear with the removal of the food and re-appear with introduction of a new food. I had an anaphylactic reaction to the formula one evening, which put me perilously on the TPN fence again, but a switch to Elecare (a brand-new formula at that time) and resumption of steroids, along with switching to a G-J tube kept me on tube feeds.
Overcoming the Social Hurdles
We also had to grapple with the social aspects of our non-eating state. I think we were able to manage all of this so well, because we are our own support system. In our house, tube-feeding is the norm. Everyone gets “g-tube milk” as one of the younger boy’s named it years ago.
We’ve had to work hard at having a few accommodations put in place at the schools, but finally, after years of struggle, after learning the American Disabilities Act and the Individuals with Disabilities Education Act, we have managed to get an individualized plan in place for each of the boy’s unique needs. They play sports, go to parties and have birthdays like everybody else.
Our mealtimes are a bit different than most of the world. Our kitchen no longer has a table, but has a couch so three kids and IV poles with feeding bags can sit together. There are two bar stools at the island for the two eaters in the house. Our counter tops sport charging stations for those of us that use feeding pumps and my pantry is filled only with formula, TPN, tube supplies, and feeding bags. We have to plan a little differently to leave the house.
Our tube-feeding requirements are now a part of our daily life. I am grateful for the extra time I have not spent planning meals, shopping in grocery stores, cooking over a stove, cleaning up afterward. The most important aspect for us, however, is how much better we feel. After the years of problems, just to finally know what was wrong with me and my boys was a tremendous relief.
Managing the Medical Needs
We have had to figure out what our needs are from our physicians, our TPN supplier and our enteral supplier, as well as our insurance case manager. Once we determined those needs, it was our responsibility to adequately communicate those needs. Occasionally, a little coercing is needed to pull everyone back in line. The Harlow family is definitely a team effort and when any one member of that team isn’t pulling their weight, it puts an extra load on everyone else.
The medical management of something this complex is very dynamic, constantly changing and requires the ability of everyone to “think on their feet” and be pro-active. We have chosen the individuals on our “team” based on their ability to be a supportive participant. This took some work, some adjustments and unfortunately, several replacements. We now have had a team in place that works very well together. We try to keep everyone in communication with everyone else at all times, another very important aspect in complex situations such as ours. Thank God for Email.
All of these things were a matter of making adjustments, identifying the problem and working at it until a solution was found. We approached every challenge this way, took each one individually and gradually solved the problems one by one. We are constantly doing this because as the boys grow and change, adjustments are necessary.
In addition to all the things Keith and I do in the house to manage our unique way of life and manage our family in this world, we learned early on to surround ourselves with supportive friends and family and a medical support system that works for us. That was difficult in the beginning. There was a lot of pity, a lot of questions and people just did not know how to act around us.
Our closest circle of support includes those people who were with us during the most difficult times and can understand our perspective now…that our tube-feeding and TPN give us our life back, they do not take it away. We have found that surrounding ourselves with people who are up-beat, optimistic and can appreciate the simple joys of life are win-win relationships.
Other than my husband, a few close friends and family members, I find strength and support from organizations like the Oley Foundation and unwavering support from our internet support group filled with the collective experiences and wisdom of parents and patients who have been on TPN in some cases nearly 20 years. It is very reassuring to know if I’m having one of those down-days, or had a frustrating medical encounter, I know there are going to be friends who not only understand what I’m talking about, but understand the consequences and the big picture. I would very much like to take the opportunity to thank them, to point out that this type of support is crucial. They should be recognized and applauded for their support for one another.
Though this lifestyle is extremely difficult at times, I have learned to be grateful for what these challenges have brought to our lives. I am grateful to live in a time where my disease can be accurately diagnosed, and technology can replace food with an amino-acid based formula for myself and three of the boys. For Kody and on two separate occasions for myself, the advances made in the availability and administration of TPN therapy has kept us alive.
I stop often and watch Kody riding his bike, zipping around the cul-de-sac we live on and try to just soak it all in. How wonderful it is when he is feeling good, and just living and being happy. How wonderful it is when I am feeling good, when all the boys are feeling good. I get a level of joy from simple things that most people in our society who do not have these challenges will not appreciate until the autumn of their lives.
Taking Care of Myself
This is not to say, however, that I don’t have an occasional poor-me pity party. Another important thing I have learned is that I have to allow myself some occasional down time. After a significant Kody-crisis, I have learned to give myself a day or so to just cry and be upset — usually beginning with a sappy movie or some sad story that I just completely over-react to. I recognize that as just what it is: an opportunity to vent/project my own frustrations, fears and sorrow, and I allow that to happen. You can’t keep it all bottled up inside. A little venting from time to time can prevent big explosions farther down the line. Families like yours and mine who can expect intermittent traumatic medical crises cannot afford to be pressure-cookers. You don’t want to have to deal with letting off all that steam in a middle of a crisis which in and of itself is enough to drive anybody over the edge. Take care of yourself, keep a handle on your own needs and psychological well being so that when you have to face the crisis that will come, you will be able to get through it, then quickly recover after it’s over and get back to enjoying life. Remember, the days may be long, but the years are short.
Never has that rang more true than the last two weeks in June in the Harlow household. Attending Kody’s kindergarten graduation followed the next day by my oldest son’s high school graduation, brought everything quickly back into perspective for us. Friday night, just five days ago, it all came together, quite literally, at the very last minute. Kody had been discharged from the hospital with a fresh central line with very little time to spare, but we managed to make it to our oldest son’s high school graduation ceremony. Cameras were charged and ready, tissues were close at hand. The previous couple of weeks beginning with my very inconvenient laceration and resultant repair, formula and tube problems; the difficulties with two separate school education plans; a traumatic change in nursing and pharmacy companies; Kody’s broken back and the new finding of osteopenia; the senior pranks (involving a 6 foot shaving cream snowman); Kody’s septic episode, resultant line removal and roller-coaster hospitalization, were all behind us. All that mattered is that we were together, we got through it all okay and successfully graduated our first-born child.
I am a firm believer in the tenacity of the human spirit. Within every one of us is the ability to persevere, no matter what the obstacle. I think it is simply a matter of personal choice, and at some point during our initial years on parenteral and enteral therapy, we chose optimism. For the Harlow family, we are going to take each new day and find some joy, some happy defining moment and hold on to it.
I believe each of us has a specific purpose on this earth. We each have different strengths and weakness, we each have a very unique individual spirit. I have a personal goal to continue to do all I can to help find a cure for the disease that keeps my family on tube feeds. I believe by working together with others we can support and empower each other toward a common goal. Each family in our network of eosinophilic disease sufferers and each family of the Oley Foundation is at a different place in their journey, but we each have something to contribute and together we can help hold each other up. By continuing to network, we will reach our goal faster, we will find a voice and we will be heard. In fact, we are already making a difference.
For our family, we choose to live our lives with an optimistic perspective. I try to keep in mind that my children’s attitudes are a reflection of what they see in me. I want them to have full and happy lives, confident in who they are and confident of their place in our world. I am blessed beyond measure with the support from my internet TPN and Eosinophilic families, organizations like the Oley Foundation, a fairly large and ever-growing supportive team of health care professionals, and a community including friends, family, and a few very special teachers who have been open and willing to learn about our alternative lifestyle. We are all learning together how to make a place at the table for everyone. The days are long but the years are short. Make the most of each day that you have, no matter what, and you can look back with peace, happiness and satisfaction.