Homeward Bound

I know that many are concerned about Sarah Kate so I wanted to provide an update. Her numbers are trending in the right direction… Enough so that the hope is that she will be able to go home today. Sarah received more blood yesterday, and her fevers are now low-grade. She is feeling totally lousy; but as long as she is stable, home is the best place for her to be. I draw Sarah’s labs every Monday, but it is reassuring that for the time being we will be checking them even more frequently to be certain that things are continuing in the right direction. I am confident that quiet cuddle time by the fireplace with Alice Eloise will speed the recuperation process better than anything else ever could.

I have to share a silly Sarah story that tickles me every time that I think about it. Those of you who know Sarah or who have followed her blog are privy to the fact that our girl is usually pretty sharp, as evidenced by her quirky, quick wit and whimsical storytelling. Typically nothing much gets by her, but HLH flares are not typical. In fact, Sarah probably won’t remember much at all about the events of this week after the fact. Her body is so very weak and tired, and that exhaustion affects her mind, too. So the other night while Krista was here visiting, she informed Sarah that the Royals were going to the World Series. Sarah did not respond until the next afternoon, when she giggled to herself and admitted that she had just figured out that Krista was talking about the Kansas City Royals. Instead, she had found herself hoping that the Cardinals would make it to the World Series so that her favorite “royals”, Will and Kate, would be traveling to St. Louis. I guess I should apologize to Sarah Kate for spilling this secret, but such cuteness just had to be shared.

God has seen us through this tough week… Now we are thankful for the blessing of going home.

Posted in HLH, inpatient, Reflections | 7 Comments
We Have an Answer…

Sarah Kate’s labs have confirmed that she is in an HLH (Hemophagocytic Lymphohistiocytosis) flare. She has had constant fevers since Saturday (some in excess of 105); so that, along with dropping blood counts and outrageously high inflammation markers, has left her feeling terribly sick. Sarah received blood today, and her doctors will now monitor her closely as they consider potential treatment options. They will likely start her on a medication that has helped to settle things down in the past. Given Sarah’s history of HLH flares, a bone marrow transplant would be a consideration; however, Sarah is just not strong enough for that to be a viable option. Other HLH treatments like chemotherapy and high-dose steroids are also believed to be too harsh for her, especially considering her chronic pancytopenia. Sarah’s doctors and nurses at Mercy have been incredible… Last night they transferred her to the PICU to keep a closer eye on her. We have been so very blessed by their devotion, kindness, and excellent care.

Before Sarah was transferred to the PICU, Alice Eloise’s Uncle Tim took it upon himself to bring her to the hospital to see her Mommy. It was so very sweet of Tim and absolutely wonderful medicine for Sarah.

 

 

Sarah looks darn good considering all that she has been through the past few days… But as her Mom, I can attest that those sick girl eyes speak volumes.

God provides for our every need, and you, dear friends, are among His very best blessings. Thank you for your continued love, support, and prayers. It is truly comforting to know that so many are supporting us in this fight.

Posted in HLH, inpatient, Prayers, please! | Tagged | 21 Comments
I Left my Creativity at Home, so this Title will Just Have to Do…

So October 3rd was pretty great. The week following? Hmm, not so much. The travel most enthusiastically kicked my booty. You know that saying, “nothing is impossible with God”? It’s true. Somehow I did indeed make it to Rhode Island and back. But I am pretty sure that pigs could fly more easily than I can, even when taking into account my advantage of having an airplane to help me with that endeavor.

Consequently my body has been angry all week, finally culminating with a high fever and a trip to the ER last night. I was admitted so the doctors could keep a close eye on me… And it’s a good thing, too, as my blood counts took a big hit in a matter of hours. We still don’t know what’s up. Could it be a Hemophagocytic Lymphohistiocytosis (HLH) flare? Sure. Kind of looking that way. Could it be sepsis brewing? Mhmm. A possibility but cultures have come back clear so far. Could it be Post Booty Kicking Syndrome (PBKS)? The NIH has yet to release any statistics on PBKS, but I think it is a reasonable addition to the suspect list in this particular case.

I know you’re anxiously awaiting the details of my Rhode Island trip, but for now I am just gonna have to offer an IOU. Capeesh? But in the meantime, could you please pray for me? I know that I can always count on you! Toodles!

“My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever.” – Psalm 73:26

 

Posted in emergency, inpatient, Prayers, please! | 16 Comments
It’s October 3rd.

I was 13 years old when “Mean Girls” was released in movie theaters. Since then, every year when October 3rd rolls around I find myself wishing I was in calculus class, with a hunky guy named Aaron sitting in the desk in front of me. In my daydream, Aaron would turn around to face me, asking me what day it was, to which I would eagerly reply, “It’s October 3rd”.

 This year, however, I have something much, much better to do on October 3rd.

Last Thursday I received an exciting surprise. I had been waiting to hear from a doctor’s office in Rhode Island to schedule a consultation. Well, Thursday they called to say that Dr. Chopra could see me either October 3rd or December 10th. There is a big difference between October 3rd and December 10th! So of course I snatched up the October 3rd slot!

Only one week to prepare for a trip to Rhode Island? Yikes! This may sound like plenty of time to some, but it has made for one wild week for me, and my body is not happy. To be quite clear, though, I am not complaining! Dr. Chopra specializes in my chronic pain condition, Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS). This appointment is truly an immense blessing. Dr. Chopra recently stopped taking patients, and his schedule is crammed full; but he felt my situation was urgent and graciously accepted my case.

Since I lost the use of my “good” arm in February, my parents and I have been searching so very diligently to find help as quickly as possible. The sooner this is treated, the more hope I have of regaining function of my only “good” arm. And one arm is infinitely more than zero arms! Sadly, just about all of our efforts in this regard have come up short. I am always careful not to get my hopes up. It’s a coping mechanism. If my hopes aren’t up, I can’t be let down. But still, I can’t help but be so very hopeful that Dr. Chopra is just the doctor I need to evaluate my complicated presentation and to help sort through my limited treatment options.

Dr. Rob ordered a blood transfusion for me this past Saturday so that I would be safe to travel. But even with that little boost I feel as though I am running on borrowed energy! And honestly, travel has become nearly impossible for me physically. However, God has clearly made a way for this appointment to come to be — So I know that He will somehow give me the strength to get there and back.

“For I can do everything through Christ, who gives me strength.” – Philippians 4:13

Alice Eloise will be waiting for me at home. My parents have had enough work cut out for them just arranging for the three of us to reach Rhode Island on such short notice. I am not sure we could manage getting one more person, be they human or canine, on the airplane so early tomorrow morning! But I happen to know from a friend that Dr. Chopra loves service dogs… So hopefully my Alice Eloise will tag along for my next appointment!

I would greatly appreciate prayers for safe travels, strength, and a brilliant appointment! I cannot wait to tell you all about it when I return.

5:00 is going to be here way too early tomorrow morning. So I am off to bed! Nighty-night and sweet sugar plum dreams, my lovely friends!

Posted in CRPS, Journal, Prayer Request, RSD | 13 Comments
We Are Not Invisible!

So. The bridesmaid in this photo. If you didn’t know who she was, what would you think? Elegant dress? Rockstar ponytail? She has a pretty spiffy-looking family, huh? *wink wink*

Based on this photograph, you probably would never come to the conclusion that she was living with several chronic illnesses. But of course, you know who that bridesmaid is — None other than me, Sarah Kate.

What you can’t see in this photo, however, is the central venous catheter tunneled in my chest, disguised beneath my Sabrina-Fairchild-inspired dress which was carefully designed precisely for that purpose. My unnatural-looking, permanently hyperextended arm is strategically positioned in a pose I consciously mastered in an effort to diminish the appearance of my disability as much as I could. If not for my hand-painted prosthetic contact lenses, my extreme light sensitivity would have demanded I wear a pair of unsightly dark blue sunglasses. And those earrings? They weren’t really earrings at all. I simply glued pearls to my ears, as my multiple attempts at ear piercings never healed due to a connective tissue disorder.

Most of the year preceding my big sister’s wedding was spent stranded in out-of-town hospitals and Ronald McDonald Houses because I was too unstable to return home. And a short three weeks later I was once again in the hospital fighting a fierce battle for my life, cinching an affirmative diagnosis of Hemophagocytic Lymphohistiocytosis (HLH). There were so many uncertainties regarding my health leading up to the grand celebration. Believe me, when that glorious day finally arrived, my ability to be my sister’s maid of honor was an incredible blessing from God that none of us took for granted.

What I am trying to say is that a person can be very sick, even if their appearance does not reveal that reality.

National Chronic Invisible Illness Awareness Week was observed earlier this month. Over the years my illness has become more obvious to a casual observer, but from the early days of my chronic battle I poignantly remember the challenges posed by the mere fact that my illness was largely invisible. And because of those painful memories, I feel compelled to speak up for myself, for my friends, and for the many silent sufferers of invisible illness.

My very first diagnosis in my journey was Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS), a chronic neurological pain condition. At age 13 I still looked like the same happy, peppy, sassy Sarah Kate in my darling little Abercrombie skirt; but on the inside, I was fighting to deal with this new sensation of an ever-present burning flame that threatened to bring me to tears if only I would give into it.

On a social level it was difficult for my schoolmates to grasp why I was rarely present for morning classes. I imagine some kids must have thought me a slacker, when in reality the harsh medications I required at the time came with a side effect of brutal insomnia, and my only chance at getting some rest was to catch a few winks in the morning hours when complete exhaustion would finally wipe me out entirely. My friends couldn’t realize that the all-too-often occurrence of my canceling plans due to pain frustrated me even more than it did them. Oh, and I’ll never forget my days of using a portable TENS unit as a therapeutic attempt at relieving my ankle pain. My mom shared a very, er, “helpful” suggestion of my carrying the TENS unit in a fanny pack. Just the mention of the word “fanny pack”, however, brought about some petty, angsty, teenager-typical retort, as I was convinced that this fashion faux pas was nothing less than “social suicide”. Perhaps a fanny pack may be a practical accessory for Barney-lovers and soccer moms, but it would most certainly clash with my aforementioned oh-so-fashionable Abercrombie skirt! Puh-lease, Mom. *scoffs* Imagine my surprise when I recently discovered that Victoria’s Secret is now selling fanny packs. 90s retro chic? Go figure! Maybe Mom was on to something?

The challenges I faced socially paled in comparison to the cruelty that I had to deal with in certain doctors’ offices. Soon after my RSD diagnosis I began experiencing intense and inexplicable abdominal pain. There’s an unfair stigma automatically pinned upon a young, skinny ballerina who has trouble eating. To my dismay some doctors made the unfounded and ignorant assumption that my stomach pain wasn’t real. It was a harsh sting to be accused of lying for the first time in my life when what I desperately needed instead was proper diagnostic testing and appropriate treatment for a very serious physical illness that could put my life at risk. Finally after five years of enduring such rubbish I stumbled across the word “gastroparesis”, thanks to a little thing you may have heard of called “Google”. Shouldn’t a doctor have mentioned that possibility? What’s up with that, Doc?! So I took a cross-country trip to see a gastric motility expert, underwent the specialized testing, and what d’ya know, I have markedly severe digestive tract paralysis.

The moral of this story: Just because something is invisible doesn’t mean it isn’t real.

Can you believe that about 1 person out of 10 lives with an invisible illness? It’s a fact! This is why it is important for all of us to be aware. Here is a brief run-through of what you should know…

For Family and Friends of Patients with Invisible Illness…

What Is An Invisible Illness? – This term refers to a wide spectrum of illnesses and disabilities, some rare and some not-so-rare, that are not immediately apparent. Some examples include:

  • Chronic pain — RSD/CRPS, Fibromyalgia, Myofascial Pain Syndrome, etc.
  • Ehlers-Danlos
  • Digestive Tract Paralysis – Gastroparesis, Chronic Intestinal Pseudo Obstruction, achalasia, etc.
  • Other Gastrointestinal Disorders — Chron’s, Celiac, ulcerative colitis, IBD, etc.
  • Mitochondrial disease
  • Dysautonomia
  • Postural Orthostatic Tachycardia Syndrome (POTS)
  • Migraines
  • Mastocytosis and Mast Cell Activation Disorder
  • Endometriosis 
  • Chiari
  • Sjogren’s
  • Lupus
  • Diabetes
  • Epilepsy 
  • Multiple Sclerosis
  • Heart disease
  • Chronic Fatigue Syndrome
  • Arthritis
  • Lyme Disease and other tick-borne infections
  • Autism
  • Depression
  • Sometimes even illnesses like cancer and Hemophagocytic Lymphohistiocytosis (HLH) can be invisible!

So basically, invisible illnesses are everywhere! It’s kind of a really big deal.

We May Be Smiling, But That Doesn’t Mean We Are Okay. – When living with chronic illness, after a while we actually grow accustomed to feeling sick; that doesn’t make it any easier, though. But yes, we will keep smiling. And yes, that is genuine happiness! But while we appreciate the kind sentiment at heart when someone says, “You look so good!”, at the same time, statements such as that can, in a way, feel somewhat disheartening. Now of course I realize that such a phrase is in no way intrinsically offensive; no matter how you twist it, it is indeed a compliment! But it is refreshing when someone recognizes the perseverance it takes for us to look so good on the outside when we feel so very crummy on the inside. So let’s add a little caveat to that phrase: “You look so good! I admire your determination to overcome your pain with a smile.” Now that is an encouraging compliment for someone battling chronic illness.

Please Be Patient. – Oftentimes we have trouble controlling our schedules. Understand that sometimes it can take a week’s worth of our energy to accomplish a single day’s activities! Overdoing it can really set us back, so we have to learn to channel our energy to be as productive as possible. I mean, I began writing this post for Invisible Illness Week LAST year… And I still didn’t meet the cutoff for awareness week THIS year! This is coming from the girl who cried the one time her daddy didn’t get her to dance class on time. But whatcha gonna do? I’ve had to learn to respect my body’s unacceptable time etiquette and just roll with it. And knowing how unacceptable my time etiquette may be, I thank you most kindly for accepting me anyhow!

Ask Questions! – If someone has opened up to you and told you that they have an invisible illness, go ahead and ask questions. Okay, yeah, sometimes people prefer not to talk about their struggles; but most of us truly appreciate when people take the time to show they care! Our illness is not our identity, but be prepared… You would be surprised how all-encompassing chronic illness can be. Sometimes that impact can be unbelievably harsh, seeming almost too terrible to be true. Oh look at that, the perfect segue into my next point…

BELIEVE US! – There are three simple words that every invisible illness sufferer needs to hear sometimes: “I believe you”. We often endure a lot of disbelief regarding our various conditions. I understand that the mere concept of invisible illness can seem somewhat bizarre. But nevertheless, these illnesses are very real. Sometimes the best thing you can do to support a loved one facing these challenges is to simply believe them.

Don’t Forget Us… We Are Not Invisible! – One of the most painful aspects of invisible illness is the profound isolation that can come along with it. So often friends drift out of our lives never to return. What you may not realize is that while you are able to move on with your life, your sick friend is likely still at home without that same opportunity to “move on”. This is how invisible illness can tragically translate into invisible people. But while this is indeed one of the most painful aspects of invisible illness, it has led to an undeniably beautiful blessing for me as well… Pictured below are a few of my very best friends, all of whom I have met online because our similarly challenging journeys have intertwined. Each of these young ladies has earned my greatest admiration. I dearly love them as sisters. Don’t let invisible illness keep you from knowing such loveliness. If you know of someone who is isolated or struggling, make an effort to reach out to them… Please don’t make them feel invisible. And in turn you will likely be blessed with a truly special friendship.

For Invisible Illness Patients…

You Are Not Invisible And You Are Not Alone! – Hey you! Yeah, you! I see you! And I really want to give you a hug! I realize sometimes battling an invisible illness can feel so very lonely. But I am here to tell you that there are many other people facing similar hardships. And just knowing that you don’t have to fight this battle alone can be an immense comfort. So let’s be friends, okay?

Don’t Hate… Educate! – It can be terribly hurtful when family and friends do not believe the struggles you endure. But as maddening as the situation may be, we must be careful to remember that our illnesses can indeed be difficult to understand. Sadly some people cannot believe what they cannot explain. Rather than lash out in anger, do your best to educate the skeptics. Not that you have anything to prove… They should believe you, no questions asked. But if they are willing to learn, it may spare you from more disparaging remarks in the future.

Pray For Better Days Ahead… But Until Then, Embrace Your Unique Journey. – If you have a chronic illness, it’s a pretty safe assumption that life hasn’t gone exactly as you planned. But God’s plan for your life is far more magnificent than you could even imagine. Just be yourself… Your whole, entire, lovely self. Never feel as though you need to keep your illness a secret. Your special journey is an integral part of what makes you so beautifully and uniquely you. You have been blessed with a powerful testimony… You can inspire and help others simply by sharing your journey. Open your heart to Christ so that the full potential He has in store for you can unfold.

And Finally, Never, Ever Give Up Faith And Hope. – When you feel as if your entire world could fall apart at any moment, faith in God is what can hold the pieces together. Remember the moral of the story above? “Just because something is invisible doesn’t mean it isn’t real”. This stands true for faith and hope, too. Whether fighting an illness or otherwise, I would never want to even try making it through a single day without knowing Christ! When we place our faith in Him, we can always feel a sense of hope within our hearts.

“What is faith? It is the confident assurance that what we hope for is going to happen. It is the evidence of things we cannot yet see.”

- Hebrews 11:1

Posted in Awareness, My Story, Reflections | Tagged , , , , , , , , , | 9 Comments
“Love”-ing Life

Hey you! Yeah, you! Did ya hear the absolutely sensational news? I had a new central line placed. But wait! It gets better! Sure, I was mighty pleased that the aforementioned line was placed successfully… But – here’s the best part – even though I wasn’t exactly a walking, talking machine in so many words, I was at least a wiggling, giggling machine. My point is, guys, that I, Sabrina Giselle, awoke from surgery able to MOVE! No paralysis!

So do you want to hear the whole story? On second thought, don’t answer that. Let’s just get on with it…

Although two months have since passed, the novelty of this breakthrough hasn’t lost its glimmer; I am stillsimply overjoyed that the procedure itself and the hours following were immensely better than I ever could have hoped! The deeper sedation and slow emergence were the keys to this success. Overall, I received more than ten times the amount of ketamine used in the disastrous central line placement I underwent in February, plus propofol and plenty of versed to keep me knocked out and prevent hallucinations. This is not a protocol that would typically be considered for a central line placement, but to my amazement, my doctors said that this was perfectly reasonable given that it was the only prospect we had for avoiding paralysis and preventing an aggravation of my Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS).

Everyone involved with this procedure went to incredible lengths in order to accommodate my unique needs. The week before, Dr. Bowen, a fantastic and exceptionally compassionate anesthesiologist met with my mom and me for over two hours to come up with the ideal plan and to set arrangements in place. He spoke with a nurse anesthetist, Laura, about me, and she even went home and researched my conditions. Additionally I met with my surgeon, Dr. Molik, shortly before my recent medical trip to Chicago for a consultation so that when the time came to replace my line, all that was left to do was to give her office a call and they would put me on her schedule… And it’s a good thing, too! By the time I was wheeled back to surgery, my central line that was being replaced clearly wouldn’t have held on for even one more day. You see, after I was effectively knocked out, Dr. Molik removed the dressing on my line, and to her surprise the line fell right out in her hands! She said if I had done my typical weekly dressing change at home, I would have found myself in an emergency situation.

Following the surgery I was transferred to my own quiet little room where Laura stayed by my side for at least a couple of hours as she continued to administer ketamine so that I wouldn’t wake up quickly to a shock of intense pain! I couldn’t believe it. Really, everyone took such exceptional care of me. My post-op nurse, Claire, was ever so sweet. And there was some dude there named Spencer, and due to my mentally-impaired state at the time, I honestly have no idea who he actually was, but I do know that he was very, very nice as well. And in a fit of ketamine-induced whimsy, I declared Claire Marie, Spencer Allen, and Sabrina Giselle the three musketeers! Ah, the stuff of legend, folks.

When I finally awoke, I was surprised to discover that I had an extra appendage. In the past I have always had double-lumen lines, meaning I have had two tubes exiting the site on my chest. But when it came time for Dr. Molik to place the new line, there wasn’t a double lumen catheter to be had! Consequently she had to place a triple-lumen line instead. I was entirely nonplussed, though, because, um, hello… I WAS NOT PARALYZED! I could actually move!!!

Now, surgery is never easy on me. I couldn’t have stood up and walked out of the hospital that day… Trust me, had I not been so wobbly, I would have been doing the happiest of happy dances! But no, my muscle weakness and pain wouldn’t allow such whimsicality, but instead resulted in a short hospital stay. Central line placements are a breeze for most people, so when my nurse on the floor first saw me, she questioned, “So this is a good outcome for you?” Unless you have seen me in the hypersensitive state that comes along with my typical rigid paralysis, you simply cannot comprehend what a major improvement this is in contrast to what I usually experience when I undergo a procedure. So you can take my word that I was absolutely happy dancing in my heart.

My doctors meticulously documented all that was done so that we can recreate these exact circumstances anytime I need surgery. Overall, the whole thing was practically miraculous for me… And it was pretty much confirmation that my intense pain is indeed the cause of my rigid paralysis. So how many ways can I say it? I am deliriously delighted, entirely elated, over-the-moon overjoyed! Quite simply, God is good.

Now, what’s the latest scoop regarding my cantankerous arms, you ask? Well, I wish I could tell you that I’ve been making progress, but regrettably this is so not the case… Not for a lack of trying, though. In April I had a consultation with Dr. Lubenow, an RSD specialist in Chicago. He was a kind and intelligent doctor, but since our visit we have learned that unfortunately his hospital will not be able to offer the treatment I am needing. Nevertheless I am thankful for the advice Dr. Lubenow shared.

So where to turn next? Sometimes my shortsighted human perspective can set my mind to spinning itself silly! Naturally when I default to such a thought process I come up a bit short and haven’t a clue what to do. However, at the same time I am also earnestly praying for the Lord’s guidance, a much more effective means of finding direction, as is evidenced by God’s 100% success rate for getting me out of trouble in the past. When my family and I decided to transfer my local medical care to a different hospital a few months ago, it seemed like the craziest time possible to be making such a move; but in hindsight it is so very clear to see that God had been gently nudging us in this direction for quite a while. And as a result of that gentle nudging, I now have a fantastic hematologist, Dr. Rob, who is doing all that he can to help me from many different angles.

Thanks to the suggestions offered by Dr. Lubenow in conjunction with invaluable counsel and reassurance from Dr. Rob, my family and I finally have a tentative treatment plan for my RSD. I am a bit shocked to be saying this, but as of right now it is looking like in addition to trying ketamine infusions, I will also have an intrathecal pump implanted to consistently administer a muscle relaxant called baclofen into my cerebral spinal fluid. We believe that this multifaceted approach offers the most hope for relieving my pain and restoring function to at least my left arm.

There are still a handful of particulars to be addressed before moving forward with any treatment, so I would greatly appreciate your prayers for guidance, peace… And patience! The immense pain I’ve been carrying these past few months has been a serious test of my perseverance. I feel like I’m being stretched beyond my breaking point. So I guess it is a good thing I’ve always been flexible, huh? (Er, if we are going to be technical here, I am actually hypermobile in medical lingo.)

“… And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.” 

Romans 5:2-4

While her mommy was in the hospital, Alice Eloise was off on her own fun adventure, slumber partying it up with Aunt Krista, Uncle Tim, and Cousin Lulu.

But thankfully Alice Eloise and I were reunited at home just in time to celebrate my 23rd birthday! I wasn’t feeling up to any wild parties or anything, but I enjoyed a lovely birthday nonetheless. My “needs” have changed a lot in the past few months. Until the end of February my birthday list consisted of nothing but a ton of fabric for sewing. However, an unexpected turn of events (you know, the whole “arm thing”) would have made that a rather depressing birthday gift indeed… I was quite the one-handed seamstress, but my no-handed sewing skills are lacking (read: nonexistent). These days I am in need of pajamas and candles instead! And might I add that my family more than took care of these needs on my birthday.

Over the years my mama has observed how my heart gets to pitter-pattering for surprises, though, and she has been known to worry her sweet little mind over finding just the right way to surprise me. What she forgets, however, is that I am also very easy to please. One could easily lose track of how many times I use the word “love” each day. “Oh, I just love…Christmas trees, I just love… Tea parties, I just love… Buddy the elf”, and the random love list could go on and on. While I may say the word “love” often, I can assure you that I don’t throw it around lightly. But come now, is there really such a thing as too much love? I thought not. Consequently I believe that a loving heart is a happy heart! So one needn’t spend much time with me to learn what I like… Or “love,” as the case may be. And my mama spends an awful lot of time with me, so she has been known to pull off some highly lovable surprises.

When we were little ones, my big sister Krista and I received an American Girl doll for every Christmas, a most treasured tradition that continued until I was around nine years old. If one were to look at our dolls now, it would be easy to guess which dolls belong to Krista and which ones belong to me. Krista’s dolls are notably well-kept, with hair impeccably maintained to look almost like new. My dolls, however, might have done a few too many backflips at their imaginary gymnastic meets; the best of them were doomed to a fate of frizzy, tangly hair, and the worst of them were admitted to the doll hospital for a head transplant. Each and every doll survived, though, so what’s the harm? I like to believe that this just means they were very “loved”.

Every year American Girl designs a new doll to carry the esteemed honor of being the “Girl of the Year”. Each of these special dolls has her own unique personality sketch, and would you believe it? The Girl of 2014 is a darling blond-haired doll who happens to be a dancer and a seamstress to boot! Sound like anyone we know around here? She even wears her hair in the same style that I do!

So on my 23rd birthday, I was delightfully surprised to become the proud owner of an Isabelle doll! 

Don’t you just “love” her?!

The birthday fun doesn’t end here… Everyone’s favorite Double Doodle just turned three years old on May 22nd! My goodness, I can scarcely believe that my baby is already three! Sunrise, sunset… Sunrise, sunset… Anyone else a bit misty eyed? Anyone?

The question is how did Alice Eloise go from being this silly puppy…


To this little party animal…


To this service dog in training with a glimmer of mischief twinkling in her eyes…


To this incredible, reliable service dog?!

Aren’t I blessed that Alice Eloise has grown to be such a fine young lady? And as such, she more than deserved a special day devoted to nothing but her amazing self. Alice Eloise is the sunshine of my life… I celebrate that little lovey every single day!

Between April 17th and May 29th, my family had our springtime holiday season, celebrating Easter, a wedding anniversary, Cinco de Mayo, Mother’s Day, and 4 birthdays within our immediate family alone, 10 birthdays if we are counting cousins! Especially right now it is mind-boggling for me to think about how different my life is in comparison to the life I was living a short 365 days ago.

My parent’s wedding anniversary falls on Cinco de Mayo, so naturally I initiated a family tradition of throwing an annual fiesta!

But this year there was no fiesta. There were no chimichangas. No piñatas. No Ricky Martin. No dancing on the counters. ¡Ay, ay, ay! Livin’ la vida boring. Believe me when I say it was mildly tragic.

However, there is such a thing as too much fiesta loca, you know. Mother’s Day 2013 went down in the record books as “the Mother’s Day when the frog died, Lulu was hit by a car, and we still managed to get a perfectly splendid dinner on the table”. This past Mother’s Day, however, will forever be remembered (or forgotten), as “the Mother’s Day when we didn’t do much of anything, and actually really enjoyed it that way”.

So instead of bemoaning the capabilities and enjoyments of yesteryear that have since been lost, I am appreciating the newfound “loves” that God continually brings into my life. Heaven knows that each day manages to bring its own fair share of craziness anyhow.

You know what I’m saying? Don’t worry, be happy! Hakuna Matata! But even better than that go-to “problem-free philosophy” are the wise words of Matthew 6:34.

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

Let’s just delight in the serenity of the moment and admire the captivating flower blossoms from the garden, shall we?

 On that most elegant note, I must include a special and heartfelt thank you to my daddy. When I was younger and lacking in wisdom, I typically presented him with flowers to plant for Father’s Day, not quite realizing that, in essence, the gift was a source of manual labor for the recipient. Oops. And a few years back a stroke of brilliance allowed me to mastermind a truly inspired gift, a clock adorned with those darling “Mary Poppins” penguins, along with the catchphrase “It’s a Jolly Holiday with Larry”. Original and functional.

With careful consideration I concluded that this year a stepping stone personalized with my master gardener in mind would do quite nicely. The saying “Happiness is Blooming all Around”, yet another nod to the lovely cinematic classic “Mary Poppins”, couldn’t be more appropriate. You see, my papa has planted a majestically beautiful garden just to make me happy! I have found such delight in seeing a rainbow of brightly-colored flowers come to life in my very own oasis. Even my special Charlie Brown Christmas tree that looked positively poorly not so long ago has snapped out of its gloom, and now it couldn’t be happier! Mary Who? Only Larry Poppins could build a garden so practically perfect in every way!

Like these practically perfect pink peonies, for instance! Larry Poppins does nice work, but really I must give God the credit for creating such perfect beauty.

For me, viewing my garden is as lovely and idyllic as jumping into an enchanted chalk picture. Should I be surprised, though? It is a jolly holiday with Larry, after all… No wonder that it’s Larry that we love!

I know, I know… Enough “Mary Poppins” already. Maybe I should stop while I’m ahead, but… I hope that all of my dear friends are enjoying a chim chim cher-ee kind of day! Cheerio!

 

 

Posted in Alice Eloise, Journal, Pain, paralysis, RSD, Uncategorized | Tagged , , , , , , , , , | 15 Comments
A Thankful Heart

“Sometimes we beg and plead for God to carry us through our trials, only to emerge from those difficulties and forget to thank Him.”

I extracted these words from the blog post that Sarah shared yesterday because it is such an important message … and it is all too easy to forget. But I am not guilty of this today, as I am thanking Him from the deepest place in my heart for the many blessings that He has provided this day.

I am so excited to share that Sabrina Giselle can move!!!

And the procedure went very well, too. The doctors, nurses, and anesthesiologists were all remarkable, taking every precaution to make this a success. They did keep Sarah Kate here for the night; and while she can still use lots of prayers for strength and comfort, we are most hopeful that she will be home sometime tomorrow.

I also need to thank all of you who remember Sarah Kate in your prayers and are so very kind and loving in your support. We thank God for you, also.

I am providing the link to Sarah’s post from yesterday in case you missed it because I added this one so soon after. She shares a lot of important information and the story of her most amazing friend, Jessica.

Follow this link to read her special post…

Sarah Kathryn Frey

Posted in Prayers, please! | 9 Comments