Investigation and Education

Am I the only one out there who has a brain that will not ever shut off?

Anxiety, much?

I feel like there is this incessant import of “what if’s” popping in and out regarding one situation or another. Detective mode runs on a continuous mode searching out answers for cures for my son. This results in constant research and the ongoing pursuit of education. Holistic, sure. Alternative medicines, let me learn more. Whatever avenue we can ride down that will help/work. Let me hold it and feel it out. Ponder it and then again.

The responsibility of being in charge of another humans life is extreme. You get it.

I am my biggest critic. I hold the bag of imponderable control. I must make sure that if it can be done, I have done it, or will do it or have thought it through, or so on and so on. If it can be pursued, that is has been charged full throttle. If there is a cough around, a hand that hasn’t been sanitized, a med that was given a bit late, it is on me to comandante the problem at hand. If there are different specialists out there, therapists, apps, books, whatever, I feel my gut sink as I struggle, questioning the best thing to do. It is my job, right? Lives do count on my choices and decisions.

Heavy is the head that wears the Mom crown.

I just want to be able to say, I gave everything to make it the best life for him. Does this mean I am a tyrant over my own home? Does this make me a worse mother, or a better one for never settling. How do you find that peaceful divide where thriving and settling meet?

There is no doctorate that I can earn from this work. There is not really any kind of validation that would even fit the description of what it is I am doing.

One thing is for sure. I am not going to relinquish the crazy. I do not care what people think. You should do for your child as you see best, just as I am with mine. And I think that is where it all comes out in the wash.

Facebook Connections

I asked recently on my Facebook page what stories or issues you may be interested in. I am still digging, but thought in the meantime, an easy share would be to hand down some people/pages that I follow for encouragement etc. These are on Facebook. Some have their own websites.

Finding Coopers Voice

CB Coppola

Life Redesigned

Ellen Stumbo

The Special Parent

Mommies of Miracles

If you are looking for other resources and sites to find articles written about and by different complex issues, I like to follow these guys.

Speak Now For Kids

The Mighty

Tubie Friends

Conquering CHD

Complex Child Magazine

Kerringtons Heart

Special Books by Special Kids

Parenting Special Needs Magazine

Instagram has a wonderful page devoted to siblings of special needs children. I have even sent pictures in of my family. I always look forward to seeing the next post by them each day.

Special_Needs_Siblings

If there are sites you like to follow, please list them in the comments so others can check them out as well.

Hard

This month has been a pill.

So much heartache, so much of so much.

Maybe I have been crying more due to the emotions that I feel openly toward our world, societal issues, the pandemic and isolation. Maybe I have been crying more because of how hard it is to nurture my heart as I fight my own personal battles. Can’t say for sure…just know I maybe have been crying more. Ever do that?

Reflecting.

It has been a year, since I lost 2 special people in my life to death. Selfishly I wish to check in on them up there in Heaven. Give a wave, blow a kiss. Let them see my tears, not to make them sad, but so they know their value here was deep and unforgettable. Understanding mortality is a pill of it’s own kind as well.

I know the saying, tears do not fall forever. The emptiness left from that soul gone, I think just might though. How do you combat all the heavy being thrown around? How do you organize it to keep sane?

I guess we all feel like this on some level. You can not hide under a rock to avoid dealing with our world and all its chaos right now. You can’t not mourn those you miss. And some days you are just plain ugly when it seems as though no one out there understands or frankly gives a boo. I am that ugly today. Just wrestling it all.

I miss my departed loved ones. I miss when our biggest societal issue was the debate on eating organic, and the week’s latest movie release. Maybe I have been crying a little more these days because the mourning is not just for the passing of the people, but also the passing of pre-pandemic life.

Either way, it is hard to swallow some days. That pill.

Inventory

I have my head continually pointed to Heaven more than ever before these days.

Life lately, has made me take personal inventory. Stop to evaluate all my blessings. Pricked my heart to appreciation at greater depths.

When, why and how did we become so dense as to measure joy in vanity among the world’s values? Does it hold relevance at all? Why do we see ourselves as the ultimate saviors when we can’t even love one another without bias?

Not here.

I breathe the sweet summer KY air deep into my lungs and am thankful I am healthy. I realize there are those who are not.

I sit in my backyard watching my son splash in his pool, and remember the days I thought this would not exist. Doctors said he would never thrive, much less, live.

I hear the laughter from my home and see the smile on each face, and identify, that yes, this is what I prayed for. A husband who loves me, a kind daughter, a smart son and a living miracle…Wow.

I am of myself unworthy.

The reward is not of my own doing.

To the One that is the creator of it all, we are valued. We are adored. He is still listening to our needs and cries. If it were not so, how could I have mentioned any of the above?

I implore you to dismiss the cynicism you may have developed toward Him. We as humans are the ones who make everything a mess….as He is there waiting for us to ask for His intervention.

There is never enough thanks I can give for all He has given me.

Take a minute today and reflect on all your life holds dear. He created it.

I hope that after doing so, you find your head pointed to the Heavens as well.

Raising My “Little Girl”

My “little girl” is nearly 20 years old now.

If you know anything about me, then you know about my little girl, Breanna. You would know that she is the one that made me a mommy. When all the world was prepping for Y2K and the end of days leading up to the year 2000, I was debating what to call the child that grew in my womb.

His Beloved.

The opposite of good is evil. Easily understood.

But, we mush it all up and confuse things, making a mess.

We see color and somehow assign it to one side or another. But why?.

How can the depth of blue sky compare it’s beauty with the majestic green tree tops? Why would this even be a thing?

The creator of it all left an instruction book for us if you didn’t know. He says, for the ignorant, there is grace. And for the hurt, you are beloved.

He assigned us each a heart that was designed to explode with His values to a sad and dying world. His love is unconditional. It transcends all barriers. We are to mimic this, right? We gave a certain rule the name “golden” because it held such value. How come we forgot?

For too long man has held his pride higher than the cries and needs of his fellow. It is evident that we have not evolved. This breaks my heart. I can not imagine how much it breaks Gods.

So, I will stand by you, my hurting friends in the black community. Hurt should not hold a place here. There are so many uncontrollable hurts we deal with daily. Prejudice and injustice are controllable choices. Those that can add no value to anyone, at anytime.

If a child can understand love and not define it by assigning it to a specific thing such as race, then how foolish are we as functioning adults to not do the same?

I am thankful for all of the diversity in our country. I am thankful for your strength and beauty, black America. From one who is constantly preaching that others walk a mile because they don’t understand…I respect your anger.

I urge America to seek GOOD. I will pray to dismantle EVIL. And evil is the ugly out there, that argues their side instead of just seeing the hurt and offering empathy.

Dear children, let us not love with words or speech but with actions and in truth. - 1 John 3:18

Peeking Outside

It has begun. The reopening of our nation.

I am hopeful for you guys. Fearful on other levels.

Be considerate no matter how you decide to act upon this time of release.

Be mindful that there are still those who can not get out.

Be thankful your name wasn’t listed on the NY Times death page.

Do unto others ya’ll…

I will be peeking out from behind closed doors. More likely on the back porch. Catch ya out there someday ;)

The Search for Self-Care...

Painting.

Children do it. It is a fun activity.

I have found painting is my self care as of late. Like running, it gives a type of adrenaline while you push toward your goal, or completed project. It allows my brush to express what I am unable to. It challenges me, but in a good way. I believe I like it.

Personally, self care has never been a thing I am good at. It is much easier for me to preach it than to walk it. With self care, you choose what helps you release and relax. And, I love the smell and mess of it all. That paint. How metaphoric.

What is it that you do?

Ambivalent

Have you ever taken the Myers-Briggs test? I did years ago. As I found extra couch time in my day, it began to peak my interest again. If you do not know much regarding what it entails, I urge you to go to google.

The results and information researched about my specific character build, provide explanation as to why I am the way I am. I am an empath. That is why today, my heart is full as a summer tick, having absorbed weeks upon weeks of emotions from every angle. Political fighting on Facebook. Arguments within my own home. Sympathy that goes out to families when I read about more and more death surrounding this virus, violence, etc. Oh if I had a magic wand.

But I don’t. Such is the reason I find it all to be so rough. My nature wants to cheer others on and be wildly optimistic, while honestly, that is the polar opposite of how things are. I search the heavens daily looking for divine wisdom. The downside to my character result is the incessant thinking. Churn, churn.

So ambivalent is the title of the day. Webster’s dictionary tells me that it means having, or showing simultaneous and contradictory attitudes or feelings toward something.

All the while, the tick just grows fatter.

The New Norm...

Each week for some time now I have addressed this stupid virus and the impact it has caused. I am so sick of giving it any more grace, yet escape from it is not viable. I suppose it is time to just accept the fact that this my friends, is indeed, our new way of life. Everyone better figure out how to sew or discover another method to hunt down masks for their household. If you really have to see a face or attend a meeting or group, then you have had to or will need to, educate yourself on how to use Zoom, FaceTime, Teams, etc. Parents have been instructed to be diligent at requiring their children to do NTI work and not use this time as an extended Spring Break. On the same note, we must avoid gaining 3 zillion pounds while commanded to stay put. So on and so on. Such easy and minor tasks. HA! So many “News”.

I do not understand how it all go to be so awful in this day and age we live in. It is as though society had to unplug and plug it back in with itself to find out if it works. How do you embrace these challenges when we are told not to embrace anything?! I want to kick it and throw it. I want it to be over. We live in isolation half the flipping year with flu season anyway. Add more to it and there won’t be enough mental health care out there. Even my older kids, who actually do understand what is going on, have started to peak into their own type of crazy. I long for the day I can breathe deep into the spring air within close range of a friend (unmasked) and not have fear well up inside my heart. Can it please return already?!?!?!

Y’all?

Speak Now For Kids

Speak Now for Kids is an online child advocacy network designed to help raise awareness of the unique challenges children and families face in our changing health care system. They encourage child health champions to learn about issues affecting children's health care, submit personal stories, read and share stories as well as information, and take action in support of public policies that benefit kids and families.

Recently, I wrote an article sighting some of my views from the NICU, Medicaid and life. Check it out…

Mom’s Book: This Special Path Is Not Easy

We settled into our chairs at a local coffee shop, sipping coffee as we met for the first time. I had read Heather Amos’ book, “I’m Not OK,” and had a broader appreciation and insight into the painful and lonely reality many parents face when their children have special needs.

I had questions for this young author. How did you decide to write a book? How do you manage the frustration of trying to care for yourself? Your spouse? Your other children?

Why did she write a book? “Really, I just got mad,” she said.

Her mother suggested that she find a way to explain what she and many parents experienced.

MOTHERHOOD: BEING WHO YOU CAN

By Heather Amos

Motherhood. I was a single Mom for 5 years. I was a young mom having my first child at the age of 19. Currently I wear the badge of stepmother as well. I suppose I have covered lots of Mom roles over the course of years.

Being a mother is absolutely not definable. Is that even a word? It is a medley of poems linked together in no particular order, all the while sounding lovely. It is bearing the life of another and always putting that life before yours.

It is not enchanting, this role, but it is magnificent.

Happy (is it?) Birthday...

Last week my middle child turned 16. As many of you parents that have a child with a birthday during this joyous pandemic, you are feeling what I feel. There is a pit in your stomach when you witness the disappointment in the eyes of that boy or girl. The celebration is melancholy at best with video wishes and personal messaging. It just is not the same. Some would say it sure will make us appreciate the way things used to be. In a lot of ways, I agree. The only thing my son wanted was to get his drivers permit. In our state, that part of the DMV is closed, and for who knows how long. The sneaky blessing underneath it all, I believe, is that this generation of kids has to really learn gratitude. Gratitude in my opinion, goes a little a deeper than appreciation. In reality, it has become misplaced along with all the expectations and envy we have of others. So this made me proud when I saw the sincere thanks my son held in his smile for what he did receive, permit not included.

We decided to teach him how to play Rook, Texas Hold Em, Blackjack and In-Between. My daughter unearthed the old Wii system and we all played “Just Dance” together in the living room. Movies, take-out. It healed some of the wounds I had opened from this stupid COVID outbreak. The ones where we divide to our own corners and don’t speak. Gratitude bloomed within my heart as well through this. And I am honestly fond of these memories.

We all just have to make the best of this, guys. As long as we are on the healthy end of it, there is need for joy. I break into when I read about loved ones passing away via Facetime, and funerals abandoned. Who ever thought we would arrive in this era?

So Happy Birthday to you March and April friends. It is one for the books. Maybe next year we can all look back and sigh in relief that it is over, But until then….. gratitude.

What day is it?

I am sure that most of you feel the same sentiment. What day is it? What month? Was March 300 days long or what? Do my regular clothes still fit? Is it safe to go outside without a mask? So many questions. What is ridiculous and what isn’t kind of all runs together. The whole world has been thrown into this invisible anxiety pit.

In the good state of Kentucky, we have really been blessed with good leadership. Everyday at five my family sits down to watch Andy (the governor for those who aren’t locals) at five o’clock, to receive updates on COVID19. Honestly, for us, it is really to get encouragement. He leads everyone in the daily exercise of saying out loud “We will get through this, we will get through this together”. (My little boy even chants it throughout the day.) Regardless of your political affiliation, which he has also set aside for the time being, Andy Beshear is like the mother hen, nurturing therapist for all of his patients, which are his people all over the bluegrass. It has been refreshing to have this comfort each day during such a volatile and scary time. The message is still loud though, in reverence to the sickness that surrounds us. We must keep on keeping on. This heavy fog has us encapsulated and is not going to lift anytime soon. While the wait may feel like forever, in order to stay safe, you have to abide. We all must remain still. The concept seems foreign to our society. Now it is mandatory.

So while you sit in your home, which I do hope you are staying in, wishing for normality to return, I implore you to refrain from any negativity that starts to weasel its way into your already anxious mind. When living in an uncontrollable situation, the best thing we can all do it to embrace it. Control what we can. Surrender that which we can’t. Hold our loved ones. Pray for the world.

I totally am with you on the 30 pound weight gain. I totally feel you on eating, much more. I totally feel you on all those questions we threw out earlier. Created from all of this is at least that bond, regardless of our regular living circumstances. So during this wait, I guess the most useful tool we have right now comes from good ole Andy.

Remember, we will get through this, we will get through this together.

Silver linings

Such a dismal stand-still we are in during this time of life.

There has been much beauty though that has blossomed through the thorns.

Democrat and Republican, Atheist and Protestant, young and old alike have joined union and realized we are all part of the bigger picture of humanity. We are one race fighting to survive. There it is, that silver lining, as we are surrounded in this storm.

I will try and plead with you as well, to continue to practice the golden rule. We all long for the day we can immerse victorious from this virus. We can do it only if we remain in unity.

Storms don’t last forever, friends.

Why?

Many of you have taken it upon yourselves to self quarantine, social distance and abide by the rules your state has implemented for your safety. But, as we can see from the media, there are others that do not take this seriously.

I wonder how serious it would be if one of these folks grandmother got sent to ICU after having contact with one of them that was a carrier. I wonder how serious it would be if their neighbor with cancer couldn’t get their treatments and their health started to fade due to the compromise of them and inability to receive what they vitally need to live...and they had to watch. I wonder how serious it would be if their best friend went into respiratory failure and died. Serious. Why is it so hard to put yourself in someone else’s shoes? Why is it so hard to not be selfish while others are pleading? Why? Why? Why?!!!

Would my sons life be vulnerable? You bet. Would I then fall apart? You bet. What about all of those who have already faced this fate…does it matter at all? It should. You are never promised security or health. You have to be vigilant in seeing the fragility of life and how to best care for yourself and others. How much more can we do or say to enforce this information into your hearts and brains?!

I would hope that these fates never happen to anyone, but they ultimately will. I would hope that this pandemic would be over already and normality could resume, but that is not up to me. Until then, I will keep on screaming along with the others in this community. I will call you out and make you known. I will plead, I will beg.

What if it were you?

Coronavirus

As we are all hunkered down in our homes with mass amounts of toiler paper and microwave dinners stowed away, I hope you are doing more than just being afraid. I hope that you are feeling more than just frustration. I hope that you are allowing this time to be present in ways you were not able to be before.

If you are still immersed in the public and healthcare, I hope that you are leaning on one another for support and not trying to take on everything by yourself. If you are stocking the shelves and ready to scream with all the hysteria, I hope that you see people are only seeking peace and safety. Maybe these perspectives can aid you while you do the really hard tasks that others do not have to. I see your hard. I appreciate your sacrifice and patience.

In the medically fragile and special needs community, much of this stuff is our norm. We look at the world in their hand sanitizer panic and snicker because we washed our hands before it was cool. We know that what you do not understand, you fear. Maybe that is why many of us are not immersed in the outside madness. Maybe that is why we take the same old precautions. Maybe we understand on a deeper level, mortality, than most.

I pray for our world. You should too. Check on your neighbors and friends. Pass the extra dollar to someone. Recognize you are not the only one needing bread and milk. Wash up. Teach your kids. Immerse yourself in learning. Send encouragement. These are small acts that can make a big impact.

Hang in there.