Posts tagged ‘vulnerable’

January 8, 2019

I’d Tell You, But Then I’d Have To…

I’d tell you, but then I’d have to…quit talking because you’d have tuned me out anyway! And you thought I’d have to kill you. No, you’re safe. This year, I really want to map out some expectations for the healing process. I feel like that’s a missing piece of the puzzle for many of us.

But that map will not start today. Why? Because life has handed me other priorities. I know you’re familiar. In random waves of difficulty, life can interfere with the best of intentions sapping your energy for anything other than the essential.
meds
The virus I had on Christmas lasted a good 14 days. Two days later, my medically fragile granddaughter came to stay with me while her parents travel out of state. She is sick. Her cough sounds like she has the same virus I had.

In the average baby this would not be of great concern, but this 8-month-old has spent 50 of the past 128 days in CVICU (Cardiovascular Intensive Care Unit). The last cold she got put her in the hospital so oxygen dependent that when the oxygen supply accidentally became disconnected, she coded. That’s short for they called a code blue meaning she required immediate resuscitation.

Em has a paralyzed vocal cord and has not even attempted a bottle since August. She hasn’t successfully eaten more than half an ounce from a bottle since she was 6-weeks-old. She isn’t comfortable with swallowing. That means the only way she has figured out to get rid of the drainage down her throat is to throw up.

Again, not that big a deal…except she often starts coughing during a feed and then throws up to clear her throat. (During a feed – that’s how you start to talk when you spend lots of time in a hospital.) We fill her tummy through a button attached to a gastrostomy tube (G-tube). Three times a day, we add medications to her food. If she doesn’t get enough diuretics, her lungs fill with fluid so keeping the meds down is essential.
gtube
This is my main priority – keeping meds in her. Second is monitoring her pulse ox. I’ve had to keep her on oxygen the past few days. That means lots of logistical maneuvering and plastic tubing snaking through the kitchen into the living room, dining room, and bedroom. I move the oxygen concentrator in the morning and evening, but I don’t want to have to move it all day long.

Now, you’re probably either thinking, “bless your heart, I can’t even imagine” or “yeah, that sounds awful, but you’ll get through it and everything will be better”. Either way, I’m sure you’re ready to tune out unless I get to the point.

pumpWait…I haven’t even told you how long it takes to measure out 1.6, 1.875, and 5.625 mls of 9 different medications. I haven’t explained that her thyroid medication comes in 2 different pills. Depending on the day, I have to choose a 25mcg pill or cut a 75mcg pill in half, crush the pill, add water, place the resulting mixture in a slip tip (yes, that’s really what it’s called) syringe and inject it into the button. I haven’t mentioned any of the almost daily issues with equipment – a tube that slips off the feeding syringe and soaks me during a feed; the feed pump we use at night reading NO FLOW OUT even though there’s no obstruction and I can prime out liquid; an auxiliary port on a tube that gets caught, comes open and dumps meds and milk in the crib; the pulse ox sensor that has too much ambient light to work, etc. I haven’t told you that Em has panic attacks during which she starts gulping air. That means she needs constant burping through the burp tube, but she also needs to be held close to calm down. Those can’t be done by one person at the same time. Oh, and Em can’t sit up on her own yet. She has Down Syndrome and has spent so much time in the hospital she is way behind. Because she weighs 17 lbs, that adds another level of difficulty. Yeah, I know blah, blah, blah.

But that is the point. To feel like you understand what my days really look like, I need to tell you even more details. When I do, 98% of people stop listening. I can visibly see it happen. Some people want me to buck up. Others just don’t want to think about it. Others wish I’d say something interesting for a change. Many stop me by saying something they mean to be comforting, but often reflects that they haven’t absorbed what I said.

I am lucky. For me, the relentlessness of caring for a child who can go from okay to critical in 24 hours is a temporary situation. For my son and daughter-in-law, it is every day on top of jobs and caring for a two-year-old. When Em’s in the hospital, one of them has to stay there with her.

Not only do they have the stress of the routine, they have to make some really tough decisions. Em has pulmonary hypertension. There are 12 cardiologists who consult on her case and they fall into two different camps on treatment. Half of them would have her living in the hospital right now. How do you decide whether to bring her home or keep her hospitalized when the experts can’t reach a consensus?

And to all of you who want to say, you’ll get through this and everything will be okay – yes, we’ll get through it and it will be okay, but we do not know whether her health will improve. It may not. Getting our minds around the fact that this may be our new normal is more than any of us have been able to do. It just feels too sad. And that’s when it’s not feeling too overwhelming.

When you’re up from 2am to 3am with the average baby it’s tiring, but you’re buoyed by memories of holding your baby close or hearing her laugh. When you’re up from 2am to 3am with a medically fragile baby who is sick, you worry that you didn’t spend enough time holding her because you were too busy performing the tasks that keep her alive. That is a lonely, emotionally exhausting 2am.

I think we all just want to know we’re not alone with this. We want to feel a sense of support and connectedness in this situation life has dealt us. There’s simply no way to feel that if we don’t feel seen and understood. I don’t say that just for me or my family. We are just an example. It applies to all of us. It is the real gift we want from each other.

As humans, we may be geared to need connection, but somehow at this moment in time we seem to be lacking the will to stay tuned in when things are hard to hear. That means those who most need support are least likely to get it. I don’t know if that’s why we have so many people who feel the need to escape through drug and alcohol use, but I think it may be related.

Speaking from your heart is a vulnerable experience. Listening with your heart sometimes feels even more so. When you really see people, it changes your perception and not just of others, but of yourself. Keeping your heart open requires strong boundaries and oceans of courage. This is the real work of a full life. And many of us miss out.

Em and I saw a beautiful example of connection this week. I flipped on the Ellen show during a feed. Dax Shephard was on and it was his birthday. During a segment called, “Ask Dr. Dax,” his wife Kristen Bell asked from the audience what he would recommend giving someone special like a spouse for their birthday. He answered, “I would say please, please, please give that person love and support for 11 years, give them two beautiful baby girls…and you’re good.” Kristen’s eyes filled with tears, as did his. It was a beautiful thing to see.

Not everyone has a spouse, partner, parent, or child with whom such a connection is available. Today, you may have the privilege of being the only person who can offer active listening to someone you encounter. You may be the one person who can hold the space for someone to heal. It may not be instinctive or easy. It may interrupt your busy life. You may not feel appreciated in the moment. In spite of this, should you choose to listen, you give a valuable gift when you find the courage to stay tuned in.

If you have made it this far, thank you for listening.

https://pedsurg.ucsf.edu/conditions–procedures/gastrostomy-tubes.aspx

https://www.mayoclinic.org/diseases-conditions/down-syndrome/symptoms-causes/syc-20355977

https://www.cdc.gov/ncbddd/heartdefects/coarctationofaorta.html

https://www.mayoclinic.org/diseases-conditions/atrioventricular-canal-defect/symptoms-causes/syc-20361492

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4070778/

https://www.psychologytoday.com/us/blog/emotional-nourishment/201612/why-we-need-each-other

https://armchairexpertpod.com/

https://www.youtube.com/watch?v=2cF-PXWt_bQ

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

June 16, 2013

How can I make my family support my eating plan?

Let’s state the obvious right off the bat. You can’t change other people. If your family isn’t generally supportive or does not function well, many of its members may never come around. While it would feel good to have their support or to feel like you are a top priority, the fact may be that you are not the highest priority for any given family member.

Ouch, that’s harsh.

Is it? I know, it feels awful when your desire and need for support are met with resistance, cruelty or, perhaps even worse, are ignored. This can leave you feeling as though you do not matter or hold an important place in the world. It can leave you feeling angry that you are experiencing hurt or neglect from those who you believe should be protecting and nurturing you. Nonetheless, if these are the facts, these are the facts. It is important to tell ourselves the truth. It is important to allow ourselves to consciously recognize what we already know.

Why? It is only from a place of truth that we can learn to rely on our inner strength, stop blaming others, discover that we can value ourselves even if we haven’t been valued, find a way to give up the fear and anger that keep us from feeling empathy and compassion for those who behave badly toward us, and most importantly recognize that we have a choice to live however we want to live.
Yes, I know you may not feel strong enough. You’ll get there.
You may not feel capable of taking on a difficult task all on your own. You’ll get there.
You may want to eat in an unhealthy manner to fill an emotional hole. This one takes awhile, but you’ll get there.
You may feel compelled to gulp down comfort food that makes you unhealthy and not know how to overcome this compulsion. Don’t worry, you’ll get there.

You may feel it’s not fair that you have to make tough choices when everyone else at the table is raving about the delicious cake. Maybe this one particular thing isn’t fair, but everyone has different challenges in life. You can be certain that the people eating cake also have experiences that aren’t fair even though they get to eat cake.

Even if your family is not supportive, it’s okay. You can find a community that is. In fact, we support you. We want you to be healthy and thrive.

Now that we got that out of the way, we know that some families want to be helpful so let’s go back to the question at hand – How can I make my family be supportive of my eating plan?

With a willing participant, you can facilitate the process by being clear, consistent, patient, and gentle in communicating your limitations. For instance, if your grandmother seems to understand, but then offers you gumbo you know was made with a roux and you are gluten-free, what are your options?
1)You can choose to hurt your health rather than possibly hurt her feelings by having to tell her one more time that you cannot eat her delicious gumbo. This choice will be tempting if you feel like you matter less than other people or must earn love by sacrificing yourself. It will also be tempting when you’re afraid of disappointing someone you care about.
2)You can act exasperated because she seems more ignorant than you thought and isn’t meeting your expectation. You may have a high expectation because your grandmother has been smart and wonderful all your life. Perhaps a bit of patience will help you realize that she’s aging and can’t remember as quickly now as she could before – especially if she’s tired or out of her routine. It may be time for you to see her as the real human she is rather than the superhero you have created. Yes, this is tough, sad, and scary because it is hard to watch those we love begin to decline, but facing the reality as it happens will allow you to maximize your connection during the remaining moments you have together.
3)You can act angry or irritated as though she’s deliberately trying to sabotage you. This choice may feel natural if you have another family member who manipulates as a matter of habit. Because you are poised to expect and/or avoid manipulation, the slightest possibility of sabotage can trigger your anger defense. Until you have reinforced your boundaries and have healed from the hurt or humiliation you have endured at the hand of the manipulator, you may need a momentary timeout to gain perspective. That’s okay, take the timeout. Even when you can’t verbalize why in advance, remove yourself. Once you’ve regained your perspective, you can come back and explain. Sometimes the path to healing isn’t perfect and isn’t pretty. It’s still important and making a deliberate choice that disrupts your old-standing habits is always a step in the right direction. If you are inadvertently impolite, apologize. If someone grumbles, let them grumble.
4)You can complain to the rest of the family that if grandma cared about you, she’d take the time to research, record, and remember what you can’t eat. This can be a divisive and negative way of attempting to get the support you need – “Come on team, rally around me-the-maligned”. It can also be a way to avoid taking responsibility for yourself. Once everyone chooses sides and turmoil ensues, you can blame grandma and her allies if you fail to make a positive choice. After all, look at all the opposing forces – who could possibly make a positive choice in this environment? What you may not realize is that you give up your personal power each and every time you allow a group to limit you or blame someone else for a choice you have made. You may also fail to see that you have an active hand in creating chaos and contributing to your own misery.
5)You can throw a fit, yell, scream, and create so much drama that you think it will guarantee she won’t forget next time. You will create the reality you desire – no one will forget, but what they won’t forget is that you behaved badly. They may still feed you gluten.
6)You can politely refuse by saying something like, “Wow, that smells wonderful and I remember how good it tastes. I sure wish I could have some, but I can’t.” If grandma then asks why not, you can follow with, “It’s that darned roux made with flour. My system just can’t tolerate it.  I appreciate the offer though. Thanks for always trying to include me.”

Ahhh, finally a response that allows you to both protect your health and your grandmother’s feelings. Achieving this sort of balance over and over again is the best way to solicit support over the long haul.

Any time you can facilitate simple, clear communication, you will create interactions that offer more time, space, and energy for you to educate and share your passion for being healthy. Following a consistent eating plan makes it less confusing for your family and helps them to adapt and accommodate you. In your home, you can have as elaborate a structure as you’d like. In addition to gluten, I avoid corn, potatoes, and shrimp. Avoiding shrimp and gluten are critical to my health because I cannot tolerate the slightest amounts of these foods. I can tolerate small bits of corn and products with potato flour. When I communicate my needs to a hostess, I do not mention corn or potatoes as a problem because I feel it is best to keep things simple.

Why would I make the choice to only communicate critical limitations? My intent is not for extended family to memorize the intricacies of my dietary plan. My intent is to be healthy, thrive, and have positive interactions with my family. I can eat some cheese dip and chips once every 6 months while we watch basketball or football without sacrifice.

To be clear, I’m not suggesting that you “fudge” to accommodate your family, but simply that you can soften the way you impart information. Sometimes when something is very important to us, we communicate our restrictions as rigid rules without even recognizing what we’re doing. We lay out the restrictions we’d follow if we were meeting our ideal behaviors every moment rather than communicating the points that are essential and must be followed religiously for us to be healthy. When we make the rules too broad, or based on our ideals rather than reality, we run the risk that before family dinner is over we’ll have bent one of those rules. This causes confusion and often results in the rest of the family taking our real restrictions less seriously.

I am also suggesting that when we communicate with those whose support we desire, we take the time to set clear intentions for that communication. With those intentions in mind, you’ll often find there’s plenty of wiggle room to relax how you communicate without having to compromise your health plan. For instance, if my intent for a conversation is to make my mom comfortable while I firmly assert that I cannot eat her conventional pie crust any longer, I will inherently make a softer presentation than if I enter the conversation with the goal of telling my mom that things have to change because I can’t have the traditional lemon meringue pie for my birthday any more unless she makes me a special crust. Yes, there may be a subtle difference in words, but there is a world of difference in attitude.To help you remember this, it may be helpful to actually wiggle your shoulders before you begin to speak. Remember – when there’s room to wiggle, there’s room for any pressure to dissipate.

If you feel overwhelmed by the changes you’re making or feel as though your family will not take you seriously, enlist outside support. Solicit better behavior by inviting another gluten-free friend to attend a function with you. Most families behave better when there are outside parties around to observe, plus you won’t be the only one refusing a dinner roll. Just make sure you don’t create an us against them atmosphere. Another option when you’re feeling unprepared for family pressure is to skip a few gatherings until you’re in a better position to handle them. You can also have a friend on call for encouragement by phone.

Again, make sure your intentions are benevolent and clear so that a phone call does not become a complain and blame session. In other words, when you call your support friend, a statement like – “I feel like the odd man out every time I refuse the stuffing and rolls and cake. I’m so afraid someone is going to make fun of me or talk about me when I’m out of the room.” is constructive and gives your friend a chance to reassure you in a very specific way because you have clearly stated how you feel. This kind of statement will get a much different result than saying, “I can’t believe my sister! Do you know what she did to me? She put a roll on my plate after I passed the bread basket to her. I’ve told her about a hundred times I can’t have rolls. I swear she just wants to embarrass me in front of everyone.” Now your support friend is in a precarious position.

If she jumps on the vilify-your-sister bandwagon, your friend may add fuel to the fire encouraging you to become more enraged. If he attempts to calm you down by minimizing what she did, he runs the risk of you feeling betrayed. If he simply says, “I’m sorry you had to experience that”, it helps but doesn’t address the specific fear you are masking with angry, blaming statements. While this makes you feel less vulnerable in the moment, it will ultimately leave you feeling less supported.

Please pause for a moment here to recognize that in any interaction each of us can make the choice to be honest, open, vulnerable and invite the possibility of maximum support; or we can choose to avoid our feelings, and the vulnerability that comes with exposing them, and garner partial or ill-fitting support at best.

Which I suppose brings us back to the original question. The best way to get our family to be supportive of our eating plan is to set good boundaries and clear intentions then to make it a priority to be as open, honest, vulnerable and courageous as we can in any given moment.

Do not expect perfection. There is no such thing when people are involved. Solicit support when you need it. Receive support when it is given. Be patient. Be kind to all including yourself. This is a process. Tell us how you’re doing.