Self Care for Parents of Children with Chronic Illness

Self Care for Parents of Children with Chronic Illness

by Shelida Johnson,APC

 

In 2018, I received a phone call from my son’s genetic team that changed my families’ life, as we know it.

I remember a voice on the other end confirming speculation around my son’s diagnosis of MPS IV.

All the information I read online began to flood my brain. It was a devastating moment to learn that your child’s prognosis was not only life-long but also progressive.

As time went on and doctor’s appointments were scheduled (physical therapy, occupational therapy, speech therapy, infusions, pulmonology, orthopedics, and many more), I watched as my resilient and outspoken son adjusted to a life slightly different from other children his age. His siblings continue to try to understand his diagnosis and frequent visits to the doctor.

 

I realized that my Mondays were not going back to normal. We would spend every Monday in an infusion clinic, where my son will receive the enzymes that his body currently lacks. More reports began to flood in, concerning his body and how this MPS IV manifests in patients. This was not only difficult to hear, but also difficult to explain to my child at 6, 7, and 8 years of age.

Now I must admit, in the beginning, I was stuck in feelings of guilt, sadness and worry surrounding my son’s progression in life. However, I began to find some solace in attending educational seminars, receiving support phone calls, hospital staff, that have been amazing with my son, and simply in seeing his resilience through it all.

I’m now in a stage of acceptance, but I move back and forth from acceptance, to bargaining and guilt (much like the stages of grief). However, I am hopeful whenever I see my son’s ability to laugh, play and express joy through it all.

For parents, I realize that these are beyond tough times, with mixed feelings.

We may sometimes feel guilty for even expressing these feelings, because we are not the one’s actually going through the pain (as our children are), but I’m here to say it is okay to feel what you feel.

This experience is traumatic, and it weighs heavy on our heart. We must take care of ourselves, so that we are able to take care of our little ones. In doing so, this is my request for you.

  1. Identify your support system and utilize them as needed. Do not be afraid to ask for help, because this is a heavy load to carry on your own.
  2. Self-Care! Remember to take time out for yourself. This may be a long evening bath after your little one is down for the evening, time out with friends (if a babysitter is available), or simply reading a book or journaling your feelings.
  3. Educate yourself! Remember, you are your child’s number 1 advocate, so continue to educate yourself surrounding their diagnosis.
  4.  Attend a support group. If needed, take the time to attend a support group so that you have access to people who understand what you’re dealing with, talk freely about difficult feelings without judgement, and feel supported by a group of your peers.
Learn More About Shelida HERE!

I strive for continued growth, so that I am providing you with sound and ethical care throughout your counseling journey. To maintain this level of care, I receive continued supervision .For nearly seven (7) years, I have served both children and adults during significant transitions. My background includes grief counseling, PTSD, depression, and anxiety.

 

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Quick and Dirty

Quick and Dirty

by Jennifer Hama, LPC, CPCS

The brain’s way to keep you alive is to make quick
and dirty decisions.

How the Brain Works

The brain has developed quick bypasses in an attempt to keep you alive so that we can spread our genetic code. This often works to our advantage. Think about the times you have accidentally touched the stove and pulled back quickly only to realize it wasn’t on. Or that time
you jumped back from the long, slinky hose as if it were about to bite you. The brain errs on the side of speed, making quick decisions before you even realize you made a decision to move.

The Brain Isn’t as Smart as we Are

The quick and dirty method keeps us alive long enough to realize the inaccuracy of our threat assessment. A cold stove can’t hurt us but moving our hand quickly allows us to avoid possible threat of burns. The hose can’t bite, but had it been a snake, we could have prevented
a heavy dose of pain. We want the brain to err on the side of speed but it doesn’t think like we do. We have the ability to then tell ourselves it was only a hose and to take some deep breaths to reverse the effects of the sympathetic nervous system that had been quickly activated. We can tell our brain that the threat is no longer there.

So What do we Do?

  • First we need to recognize that our brain’s ability to make quick and dirty decisions is a wonderfully protective mechanism.
  • Second, we need to recognize that this ability can be inaccurate.
  • Third, we need to examine the quick conclusions we jump to in situations.

Because
they arrive quickly, it is easy to assume the threat was real or accurate. We need to challenge quick assumptions and thoroughly think about the accuracy of the situation.

For example: Say you quickly feel disrespected in a situation with a loved one, the brain may err on the side of speed and defer to anger (the fight response) quickly. It is easy to say because you quickly got angry that in fact your loved one is a threat. This may or may not be accurate. Once safely out of the situation, it is important to thoroughly review or process the situation. Were you actually unsafe? Was your loved one intentionally trying to disrespect you? Is there a pattern of this for your loved one? A pattern of this for you? After you have challenged your assumptions, then decide if the threat response was accurate or inaccurate.

 

Jennifer Hama, LPC, CPCS I have a core belief that a sense of humor is essential to living a fulfilling life. And I like to recognize mine. Regularly. I hate laundry and psychobabble, but I love uncensored real talk. It’s necessary for you to know this. Also, I have a white board that I go everywhere with. While it’s entertaining to watch me roll it around the office while trying not to trip, it’s also a powerful therapy tool, helping you visualize your struggles and brainstorm solutions. I don’t do “therapy speak, ” I shoot straight, and believe in giving you practical tools to help you change your life.oes here

Learn more about Jennifer and CBT, Here

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One could argue whether or not the management ever had designs on winning in the first place, or whether they opted for a guaranteed fan draw by drafting a team filled with brawlers. Either way, one thing is clear, the Vancouver Canucks rarely, if ever, lost a fight. That dirty water then needs to be disposed of, either on the surface contaminates the soil and can have a negative effect on ecosystems or into deep wells drilled into bedrock it often leaks out into aquifers and effects the quality of surrounding water sources This must be taken into account, given that our rivers may be seriously impacted by the release of dirty saline water into their headwaters. Such pollution would destroy salmon and the economies and ecosystems which depend on them. cialispascherfr24.com Feeling is it will return more than it won come back.

Newlywed Smarts: Finances and Insurance, Explained

Newlywed Smarts: Finances and Insurance, Explained

by Brittany Fisher of financiallywell.info

So you just got married — congratulations!

You’ve declared your love for each other and celebrated. Now comes the hard part: combining finances (or not!) and setting out on this life journey together. These are decisions you’ll have to make together — no one can force you and your partner to do anything, especially because this is your life and your partnership. But here are a few suggestions for how to navigate the upcoming financial discussions you’ll be having:

  1. Talk About Combining Finances This is the first step of any financial discussion after (or, better yet, before) marriage. Determine whether or not you want to combine bank accounts, list each other as users on your credit cards, and refinance vehicles (if applicable) to have each other’s names on the title. Some folks, however, decide to keep their finances separate. Around 30 percent of couples say they don’t know how much their partners earn — and they’re happy to keep it that way. Just make sure you are both in agreement here.
  2.  Insurance Situations Regardless of whether you combine bank accounts, you should discuss combining auto and home insurance policies. Often, a multi-person or multi-car policy is more cost-effective than going alone, especially if you both have good driving records and no points on your licenses. You should also consider setting each other as beneficiaries on your life insurance policies.
  3. Buy a Home Together Buying a home is a great way to combine assets and increase your credit score, and with two people working toward making payments, it could be an achievable goal. When purchasing a home, you need to consider how much you are willing to put toward the down payment. Depending on what kind of loan you get, the percentage of the full mortgage you put down could be anywhere from 3.5 percent to 20 percent. If you put less than 20 percent down, you will need to get mortgage insurance, so be prepared to pay that fee.
  4. Get power of Attorney for Each Other Power of attorney can make it easier to deal with each other’s financial situations if necessary. The law affords spouses some built-in privileges when it comes to health care and insurance, but if one of you ends up not being able to take care of your own finances, power of attorney makes that situation less of a headache.
  5. Consider Filing a Will Having a will on file isn’t necessarily a fun thing to think about. After all, it can be sobering to consider your own mortality. But if the unthinkable happens and one of you passes away, you’re going to be thankful for having a will on file. For instance, any property the deceased person owns is given to the surviving spouse automatically — but what if you want your house to go to any children you have? What happens if both partners are unable to care for the home?

 

And finally, take a deep breath

These topics often seem stressful, as you’re making decisions that will impact the rest of your life (and your partner’s life!). Don’t forget to practice anxiety-reducing techniques or have a soothing cup of tea with your partner as you enjoy the first few months of wedded bliss. 

If you want to talk to someone about these situations, or are having a hard time in general, get in touch with the folks at Petrichor Counseling. We can help you navigate these new beginnings and heal constructively.

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Boundaries: The Real Reason You’re Not Good with Them

Boundaries: The Real Reason You’re Not Good with Them

by Jennifer Hama, LPC, CPCS

Lots of people struggle with boundaries, you’re not alone, and most struggle for the very same reason.

 

You’re going about it backwards

Often, we start by drawing boundaries around the behaviors that we don’t want to see or behaviors we want to see (ie “Don’t talk to me like that again”). Now, this isn’t necessarily a bad way to start. But, most people don’t have a problem saying that, most people have a problem with what to do when it happens again.

Start with how you plan to enforce the boundary if it happens again.

boundaries

Will you end the phone call?

Will you leave the location?

Will you end the relationship?

All of these are okay options, if you will actually follow through. If you set a boundary and a consequence you don’t plan on enforcing, you end up damaging the relationship.

Yep, that’s hard to hear because they are the ones not following the boundary…but then again…neither are you. And you are responsible for your behavior, not theirs.

Next, decide with if you will communicate this boundary and consequence ahead of time.

You don’t have to. You can choose to wait until the next time it happens or you can choose to have a conversation prior. This can depend  on a variety of factors. Think about the follow questions. How might the other person will respond? Is this a pattern of behavior or is this a one time thing? Is it likely you will see this person again? Use the answers to these questions to help guide you.

boundariesThen, develop a list of specific behaviors that cross the boundary

Instead of saying “Don’t talk to me like that again.” What was it specifically? Was it tone? Was it volume? Was it certain words?

Be specific. Disrespect can mean a lot of things to a lot of people, be specific in what you identify as disrespectful.

Last, move forward with your plan.

You’ve got all the missing pieces now. Move forward with your plan and practice to make your boundaries more effective.

You won’t get it right the first time and that’s ok. Think of it like an experiment: what worked, what didn’t. Learn what works best for you and change accordingly.

 

 

Jennifer Hama, LPC, CPCS I have a core belief that a sense of humor is essential to living a fulfilling life. And I like to recognize mine. Regularly. I hate laundry and psychobabble, but I love uncensored real talk. It’s necessary for you to know this. Also, I have a white board that I go everywhere with. While it’s entertaining to watch me roll it around the office while trying not to trip, it’s also a powerful therapy tool, helping you visualize your struggles and brainstorm solutions. I don’t do “therapy speak, ” I shoot straight, and believe in giving you practical tools to help you change your life

Learn more about Jennifer and CBT, Here

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This is Grief

This is Grief

by Danielle Edwards, MSW, LCSW

I watched a recent episode of “This is Us” where one of the characters, Randall, finds out that his birth mother did not die of an overdose shortly after his birth as he has always believed. He finds out that she survived the overdose and died just 5 short years ago. This news, of course, opened up old wounds and poured salt into them. As a newborn Randall was adopted into a white family who loves him. Although his adopted family is great, he still struggles with grief, attachment, anxiety and identity issues. If you’ve ever watched the show then you already know it is too much to unpack here. However, I was so excited to watch this part of his journey. 

In an effort to process the wide-ranging emotions of his new found connection to his mother, Randall decides to wade in the same waters that he had just recently learned his mother used to wade in when she needed to work out her pain. It was so beautiful and touching. I was all for it until his mother “appeared” in the water with him. I’ll be honest my first thoughts were, “This is too much. This doesn’t fit with this show. This is corny. Why did they need to go the supernatural route?” Before I could get the words fully off my tongue I connected with the supernaturalness of it all and began to weep. I wept because I connected with my own lived grief experience and remembered how my loss left me desperate for connection 

even if it came in the supernatural. This is grief. 

Dictionary.com describes grief as, “keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret.” Grief is more than the period of mourning after a loss. Grief waxes and wanes. It can be unsuspecting and sneak up on you when you least expect it. It can make you replay and rethink decisions wondering if there is anything you could have done to change the outcome.

Lastly, grief isn’t just about dying. Any loss can be grieved.

Maybe you or a loved one has been recently diagnosed with a terminal or chronic illness that will change the way you’ve always done things. A loved one’s addiction. Job loss. Retirement. Divorce. These experiences and others can all elicit a grief response. This is normal. 

Sometimes you feel like you need permission to grieve because you feel like “enough” time has passed. Maybe you think that you shouldn’t feel this way about whatever you’ve lost. Maybe you feel guilty or responsible for your loss. Whatever it is I want to listen and help you process it, work through it, heal, get unstuck, etc…

This is therapy.  

 

 

I am a clinical social worker who has worked for 6 years in the medical field helping individuals and families navigate the impact of chronic illness on themselves as well as the family system. This work has allowed me to help people work through depression, anxiety, grief, trauma, burnout and crisis. I also have experience working with grieving children, domestic violence survivors and accountability courts. I believe that my diverse experiences will prove beneficial to our therapeutic relationship.

Learn more about Danielle and how she can help you today, here!

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Fed Up & Fired Up

Fed Up & Fired Up

by Nyambura Kihato, M.Ed, MA, LPC, CCTP

I was at a restaurant waiting for my friends to show up for our dinner date when I met a delightful woman at the bar who struck up a conversation with me. I asked her whether she was also waiting for someone, and she told me, no, she was out alone celebrating her 58th birthday. After wishing her a happy birthday and exchanging pleasantries, she talked about the freedom she feels now that she is in her late fifties, and how she wished she had experienced this “life giving, don’t-give-a-damn freedom” earlier in life. She went on to tell me how it took being in her fifties, with her children grown and her husband dead, for her to feel okay about spending time alone, treating herself to dinners and movies, taking walks alone, sleeping alone. She was forced into learning to appreciate solitude, rather than choosing it willingly. We had a lovely conversation about the value of enjoying one’s own company at any age.

It got me thinking about enjoying solitude.

I appreciate how in some ways, we as a society are becoming more open-minded and accepting of solitude: meditation, silent retreats, and journaling are now commonplace solitary activities.

Travel groups advertise trips for the solo traveler. Young folks are delaying marriage or choosing to remain single. You no longer have to be a monastic or widow/widower to justify your solitude. I love that instead of the heavy, judgmental term “spinster”, we now use the more fun and free “bachelorette” to describe single women, or, my favorite: “singleton” (shout out to Bridget Jones).

Yet in other ways, we are still wary of solitude and being single; even the words “unmarried” and “childless” have negative connotations (especially for women), implying that something is missing or you are somehow incomplete if you are single or have no kids. Certainly loneliness is painful and can be emotionally and physically devastating. As humans, we are wired for social connections with others, and we benefit when we nurture our relationships. Extreme loneliness can contribute to chronic illnesses, depression, despair, alienation, even suicide, which is the ultimate loneliness.

But being alone does not necessarily mean being lonely. It takes practice, but we can learn to enjoy our own company without constantly needing to be with others (or with our electronic devices).

Enjoying your own company

But what if being alone is unbearable? I’m reminded of the joke:

My mind is like a bad neighborhood – I never go there alone.

If you are unable to tolerate physical or emotional solitude, need constant distractions, and tend to fill your life with so many events, dates, friends, work, screen time, etc. that you are left feeling drained and empty, then it may be useful to ask yourself whether you are using these things as defenses to avoid some underlying problem. Sometimes we may need a life coach or therapist to help us explore the inner motives for our outer behavior, and the negative self-talk or anxiety that makes us fill our headspace and lives with too many activities, people, and things.

With practice, we can relearn the enjoyment of solitude. We were good at it as kids. We may remember this from our own childhood or from watching a child play alone for hours, delighting in every moment, unconcerned or unaware of the gaze of others.

So don’t wait until friends and loved ones are gone or are unavailable.

Go alone to that movie you’ve been dying to watch, treat yourself to a solo dinner at a nice restaurant (with the phone turned off! – phones are not dinner companions), sit at the mall and people watch, take yourself to an art show, museum, or play, or just stay home with the sole purpose of having fun hanging out with yourself. Knock yourself out.

Nyambura Kihato, M.Ed, MA, LPC, CCTP I earned my Bachelor of Education in German Language and Literature from Kenyatta University in Kenya. I studied German further at the Goethe-Institut Nairobi, and in Luebeck, Germany. I went to graduate school at the University of Hull, UK, where I obtained a Master of Education in Counseling and Child Development and Learning. I taught for several years in Kenya before coming to the United States to study at the California School of Professional Psychology, San Diego, graduating with an M.A. in Counseling Psychology. I am a Licensed Professional Counselor (LPC) in the state of Georgia, trained in EMDR (Eye Movement Desensitization and Reprocessing), and am a Certified Clinical Trauma Professional (CCTP). I currently serve on the board of the Jung Society of Atlanta and am training to become a Jungian analyst.

Learn more about Nyambura and how she can help you today, here!

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