Thankful

I cannot believe it has already been a year since last Thanksgiving. And what a year it has been...

This year, we said goodbye to my grandmother, a beautiful woman and integral part of our family. Her passing is something I am still working through, as I miss her every day. 

We also said goodbye to my sister and nephew as they moved back to Colorado.  They have been a huge part of our world since the boys were in Kindergarten, even living next door for the past few years. Those who know us, know that Mike and I love our nephew like our own. Watching that moving truck drive away brought a feeling of loss that cut so deep.

And then there were the events of last Thanksgiving, when life was just, well, turned upside down. As we drove to the ER with a very sick daughter Thanksgiving morning, we had no way of knowing that everything had changed for Natalie and our family in an instant. We had no idea that the next 6+ months would be a roller coaster, complete with countless doctor visits, lab tests, procedures, hospitalizations, and illness. Worse yet, we could not have predicted how much we would see our daughter fade away, and how hard we would be praying, wondering if we would ever really get her back. We watched her transform from a vibrant, spontaneous, fearless, and carefree extrovert into a fearful, quiet, overcautious, anxious, and very ill introvert. I felt as if I lost my child - she was there, but it was not her. It was as if she shell of her former self. And no one knew how to help her. Doctor after doctor, test after test, remedy after remedy - and no results. No change, no real hope provided by any of them - things just kept getting progressively worse. We heard everything from brain tumor, to leukemia, to autoimmune disorder to it’s all in her head, an anxiety issue. We heard doctor after doctor tell us that there was no condition with her combination of symptoms. We were unaware that we, as parents, would have to fight on her behalf to get her the care she needed, and defend her to those who would dismiss her condition as “in her head” or “over-dramatized”, due to ignorance. We would have never guessed that we would be the ones to “diagnose” her, bringing our findings to the doctors. We had no way of knowing that it would be a long process, taking almost a full year to get her to the place that could provide us with a formal diagnosis, treatment plan, and education about not only her, but genetic issues within our family. We had no idea how much we were going to realize all we take for granted every day as we began to celebrate all the little milestones that Natalie met on the road back to recovering her old self. 

We also had no clue how much we would learn through this, and how much we would actually gain from this whole experience and all that this last year entailed. When you are faced with challenges, you have a choice to make. Do you embrace the role of victim, view your circumstances as unjust and just give up or wallow? OR, do you meet the challenges “head on” with boldness, seeing them as an opportunity to learn and grow - knowing that God is with you in all things.

I cannot say that I never crumbled or had my victim moments. I had my meltdowns, my night spent sobbing on the bathroom floor when everything was crashing in. I was quite sure that night would end with me in a straight jacket, but thankfully, I made it out without restraints. But even though there were times of desperation, we knew that God was with us, and we just needed to take things step by step and “keep swimming”. 

So many amazing things came out of this year. I am thankful for the countless things I have learned and the growth I have seen in my whole family.  

Among many other things, I learned....

... that I take a lot for granted. I don’t appreciate the small miracles and blessings I have in my life each day. I am blessed to be able to get out of bed, go to work, have my kids go to school,  run to the store on a whim, go see a movie, and be able to take my family out as I please to do things. None of these are a given nor are they a right - they are blessings that can disappear at any time. 

...that there is something beautiful about not being able to say “yes” to making plans to do things and just having time together. I have a new found appreciation for being home with my family and spending time away from the busyness. It’s important for  our family to connect. I want to make sure our lives are balanced, with plenty of downtime together. I coined the phrase “I have ideas, not plans” during this whole ordeal because we really didn’t know what circumstances each day would bring. It was one of the most frustrating things for me to deal with - it was also one of the most freeing once I embraced it.

...that I need to correct some of what I have taught my kids about the almighty word, “NO”.  When I get a response of “Why?” to my parental “No”, I have tried to say “because I said so” as infrequently as possible, but it does slip out from time to time. I am even more convicted that I don’t want my kids to ever accept “because I said so” as a response. I also want them to know  that while “no means no” in most cases, there are exceptions. Throughout this last year, all we heard were forms of  “No” from doctors and insurance companies. Had we just accepted this, we would never be where we are today - Natalie would never have come so far. There is a time to accept “no” and then there is a time to challenge it. Teaching this to my kids is going to be a challenge because the black and white is now grey, but I am committed to it. “Because I said so” is never going to teach them anything. I want them to ask why. I want them to fight for understanding. I want them to stand up for themselves or others when it is appropriate. Even if the answer is still “no” in the end, I want them to know they did their part to stand up for what is right.

...that I need to remember that just because someone looks okay, doesn’t mean they are. People are walking around with physical or emotional conditions every day and may not show any outward signs. It is not my place to judge the significance of their situation. My job is to love and encourage them - the end.

...that being helpless is both the worst and best place to be. Helpless is how I felt in ALL circumstances for much of this year because that is what I was - helpless. I hated it. There was nothing I could do to save my grandmother, keep my nephew here, or fix my daughter’s health. Nothing except...rely on God. At the end of the day, that is all we had and really all we needed. Realizing that in the midst of everything turned the feelings of helplessness into peace within the storm, and allowed us to see God working in everything. When I look back on this year, God guided each and every step of the way. We ended up with the best doctors for Natalie, had amazing support, and found answers that many families wait years to uncover. I got to have wonderful times with my grandmother, including our last couple of hours together that were somehow perfectly carved out the day before she died. Mike and I got to see the power of “we” as we partnered through the chaos. God was ever present. Had I not been so helpless, I wonder would I have really noticed?

....that joy can be found in every journey. If there is one thing my family is good at, it is finding joy and laughter even in the midst of trials. As Miley Cyrus sings, life is what you make it. We choose to bring the fun to the “funk” of whatever comes our way and refuse to just wallow in the circumstance. I am thankful for every day we have had, pleasant and painful, this year. As a family, and individuals, we are all better for having taken this journey together.

La La La Los Angeles - Update on Nat

Well, our trip to LA to see the specialist at Children’ Hospital finally happened! It seems like it took forever to get here, but it was so worth the wait. 

Because we couldn’t have the trip be all about the hospital, we managed to get in a few fun things to. We took Natalie to the American Girl Store (her first time ever) and I am pretty sure angels were singing when we walked in the door. I am not sure who was more excited - Mike or Natalie. Needless to say, it was a good time. 

We also visited the happiest place on earth. Natalie has always loved Disneyland, rides, and anything fun! Because of her struggles with nausea and fatigue this year, she did not want to go this time. She was nervous about rides, way opposed to riding on any kind of shuttle, and just anxious about the whole experience. We had to convince her to go which is just kind of crazy to me. The doctor we went to see had already started a part of the treatment which we knew was working so we were pretty confident that she wouldn’t have an issue, but she was still apprehensive and understandably so. The day started out super shaky and we had to work hard to get her to go on her first ride. After that, her engine started to rev up and pretty soon she was good to go. We even made up a song to go with our rides that day, “I throw my hands up in the air each time, I don’t give into fear, I want to celebrate and live my life, my nausea won’t win” to the tune of good ol’ Dynamite by Taio Cruz. We couldn’t go on everything - had to avoid spinning rides and anything super loud (as her ears are still really sensitive) but we had a blast and even ended up getting her on CA Screamin’! This was a huge victory for her that took place at the very end of the day. Mike and I figured if it didn’t go well, it was okay because a full afternoon of fun had already been had. She was nervous, but did not give in to her fear. And....she LOVED it! We even went a second time. She announced loud and proud that if she could ride on CA Screamin’, she could do anything:). I am pretty sure I squirted tears at the sound of that.

On to the appointment... It was FANTASTIC! It was so nice to be somewhere where the doctors weren’t perplexed, skeptical, or condescending. It is hard for people to understand her condition and, at times, we have felt people (including doctors) thought we were being dramatic or overstating things. We have also had some who insinuated that Natalie was manipulating us, or that it was all an issue related to anxiety which we knew was not the case. We know our kid and have watched this all unfold since last Thanksgiving. It has been very hard to have to defend her as we sought care. 

That said, it was great to have the doctor, social worker, and genetic counselor understand what this experience is like and confirm all that we have seen and expressed to doctors. The doctor validated all that we have been experiencing and have observed with Natalie and confirmed her diagnosis of Cyclic Vomiting Syndrome from a genetic, diagnostic, and physical examination perspective. He said that it is something she has always had and her blood sugar issues and other previous odd illnesses/reactions to things were all symptoms of the larger root cause. Cyclic Vomiting Syndrome is related to a dysfunction in the mitochondria within the cells and is an inborn thing. He said that various things can trigger it and that the serious strep infection she had in November did just that. And then..it became much worse. 

Because it is genetic, she will have issues for the rest of her life and he said that her puberty years will be challenging because of the huge toll they take on your body from an energy perspective. Once she turns 16 or 17, things will level out and then we wait and see if things stay the same or transition into typical migraines or some other variation of the illness. 

The good news is that the treatment plan is super doable and primarily involves taking COQ10 (an enzyme that her body is deficient in), significant vitamin doses,specific diet content/frequency, good sleep, and one other possible medication depending on the results of some labs. With this, she should be able to be pretty much her old self most of the time. We will need to be very responsive to any fevers or illness, and we still have an ER trek in the event she starts vomiting so she needs to stay healthy!

Natalie is mostly excited that the doctor (and social worker) understood her body and what she goes through inside, had a plan, and said she could play soccer again (with some restrictions:).

Thanks to those of you who have stood by us on this journey, who love my kid(s), and who have been praying. The support has been amazing. We love you!

If you want to learn more about Cyclic Vomiting Syndrome...

General Info

http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/

http://www.cvsaonline.org/

http://www.cvsa.org.uk/fleisherguide.html

Angel of Mine

We all have seasons of our lives that our challenging. The last five months have definitely been that. I am not sure when it all will pass, but I do remain thankful for the many blessings I have and have had. One of those blessings is my grandmother who is my most favorite person in the world. Her health issues are progessing rapidly and we are all working through all of the emotions that come with that. I was thinking about her today and sat down to write this song/poem. I actually wrote it to a melody, but if you know me at all, you know I am not the best singer. So on paper it shall be...I love you grandma. This is for you.

We all talk of angels
Guiding from above
Watching over all of us
Bringing God’s comfort, joy and love


Well, I know an angel
Right here on this earth
She’s blessed me every day of life
Since my very birth


She’s an angel watching over
Comfort for my soul
She’s light in the darkness
Her love, it makes me whole

She has always been there
In every single way
Sharing all her wisdom
Ensuring things will be okay

She showed me what it means to care
She taught me how to love
Always there to listen
And point me to God above

She’s a voice of reason in the storms
And strength when I am weak
She’s love abounding freely
A friend to all she meets

She’s filled my life with joy
Inspired me as I’ve grown
Given herself to all around her
She’s the best I’ve ever known


I know one day she’ll be gone
And my heart will fill with pain

But joy will come in the morning

Because one thing will never change

She’ll be an angel watching over me

She’ll be comfort for my soul

She’ll be my light in the darkness

Her love will make me whole

On the Floor...

On the floor…is exactly where I found myself about two weeks ago. The bathroom floor, that is. And there sure wasn’t any dancing or new “J-lo-ration” like Jennifer Lopez sings. It was no party. I am proud to admit that I was a hot mess.


As many people know we have had five months of straight health issues for my daughter, the root cause of which still has yet to be determined. That child has been nauseous and fatigued for five months, has seen a gaggle of doctors and has been poked and prodded. Yet, we still have no answers. All things considered, I think her daddy and I have done quite well.

I am not going to lie. It is a roller coaster of emotions as we enter each day not knowing how she will feel, whether she will be able to go to school, what “plans” we will have to forego, and with uncertainty as to what we will uncover about her “condition”. Balancing life – our jobs, our household, our son’s needs, other commitments, and this health issue has been a huge challenge and often overwhelming. This is one of; if not the hardest, parenting time I have endured. My daughter asks me to help her, yet I am helpless and limited in what I can do for her. I feel scared, but she looks to her dad and I to show her what it means to trust, even when it is so very hard. I have no real answers and she has SO many questions. Behaviorally, she is all over the place and understandably so. Feeling like garbage is draining and frustrating for anyone, but especially a child. For us as parents, it adds another element to this challenging situation. We have no idea when or how this journey will end so we take it day by day and month by month. As positive and prayerful as we attempt to be, it is still so very draining and this mom spends a lot of time putting on the brave and happy face so that my daughter can remain strong and hopeful.

So there I was about two weeks ago, already feeling overwhelmed with all things Natalie, when I got some very devastating unrelated news. While I am not at liberty to share the specifics publicly at this point, I will say that receiving the news was like a punch to the stomach and a fracture to the heart at the deepest level. The news was and still is very difficult for our entire family. Sharing it with my son and watching him (he who never cries) sob for 45 minutes, while I was still struggling significantly with the news myself, about killed me. And then came more drama and I just lost it. Apparently, I have a limit and boy, did I find it. It was like a dam broke. The flood gates opened…

I headed into the bathroom, closed the door and had a full blown meltdown all on the bathroom floor. It was like an event. Let me tell there was nothing pretty about it. People make reference to the “ugly cry” – yeah, I had that mastered. For at least 45 minutes, I sobbed and dry-heaved, almost hyperventilating multiple times. It was pretty awesome and went on and on and on. I could not stop and, you know, I really didn’t have to. I was by myself just unleashing all that was within.

As painful as it was, it was so very freeing and cleansing. Everything poured out and then poured out some more. All of my fears, frustrations, anger, and sadness were released. I was a disaster and yet there was something quite beautiful about that. It was just me, my bathroom, and my God having a session – a very intense session, a much needed time of surrender. There was no distraction, no external noise. There was no struggle for control or need to put on a brave face for my daughter. I just let go...

And, when I was done, (and in need of much rehydration), I honestly felt so much better. Nothing had changed. Everything was still a mess, but a mess with a renewed perspective. In fact, there are a lot of lessons and reminders one can glean from time on the bathroom floor. Here are a few of mine:

- I have a great big God who says, “I’ve got this” AND “I’ve got you, too”.

- Sometimes you just have to be patient and participate in the journey.

- Every day is a blessing, even the difficult ones.

- Sometimes you may disappoint people and that is okay.

- I cannot handle it all and am not meant to.

- Sometimes being strong means giving into your weakness.

- Truly loving others means seeing past any issues and conflicts and into their hearts.

- And…I should really clean my bathroom floor more often.

There is something to be said about lying on the bathroom floor in a pool of your tears. I can’t think of a more humble, surrendered position to be in. And while I wouldn’t want it to be part of my daily routine, I am thankful for that time I had on the floor. I think some time “on the floor” every now and then, as needed, could be in order. Perhaps, I should write a new version of J-Lo’s “On the Floor” as a tribute to bathroom floor meltdowns and post it to “You-Tube”...

A Day to Treasure

Being on an ocean beach, is amazing - the sounds, the smells,  the sights, the feeling...I love everything about it. You might say it is my "happy place" but really it is so much more than that. It is a place of peace and refuge for me, my calm no matter what internal storm is brewing. It is a source of release, reflection and meditation. It is divine and healing. This has never been so evident

as last week.

Since Thanksgiving, our world has centered on my daughter, Natalie and her inexplicable health issues. Our days (and sometimes nights) have been consumed with managing or assessing her symptoms, consulting with doctors, taking her for tests, tests, and more tests, researching possibilities, periodically sleeping at the hospital, praying and waiting - lots and lots of waiting, wondering, and hoping for answers.

From Endocrine to Neurology to Metabolic Specialists to GI, we have been making the rounds. We still have no real answers. Every negative test result is met with mixed feelings. You don't want something to be wrong with your child, but when you already know something is, you just want to know what that IT is.

Last Monday, I would say that I finally hit my breaking point. Honestly, I can't even describe the feeling. And as we finished a particularly long and sobering doctor's appt on Tuesday, I was just done. Upon leaving, Mike asked me how I felt. My response, "I just need to see the ocean". It honestly wasn't a want. I needed to go. I needed to feel the sand on my feet, and see the crashing waves. I needed the fresh, cleansing sea air. I needed to see that mighty, never-ending ocean that embodies the awe-inspiring, amazing, and intricate nature of God's design. I needed to be reminded that no matter what we find, it is all in His hands.

So we went. All five of us, Mike, Kyle, Natalie, Elliot (the dog) and myself. And it was AMAZING! A day we will not soon forget. Words cannot express what that did for all of us. When I got to the water, I cried. It sounds ridiculous, but I did and it felt fantastic. I just let go. I let go of all that I had been trying to hold in and hold on to. It was so freeing.

Natalie squealed with delight and played with an abandon that I have not seen for 3 1/2 months. The joy in her eyes and the bounce in her step were so awesome to watch.

She had even snuck her bathing suit on under her clothes so she could "swim". I didn't even care. It was so good to see my daughter again, fearless, fun loving, and free! I had not seen this side of my child in so long.

The day was so simple. A drive to the coast, a quick lunch, a mere two hours at the beach, and then the ride home…but it didn't matter. It was so needed - not just for me - but for all of us, much more than we had realized. It allowed us to escape and connect. It was priceless, a time to be treasured with our family.

As I type this, we still do not have the answers or know where this journey will end. We are awaiting the results of her second round of metabolic tests today.
If they are negative or inconclusive, we will be
moving on to an endoscopy and a consult with a Pediatric Oncologist/ Hematologist. I do not know God's plan for all of this, but I feel blessed to be

Natalie’s mom through all of it. And when I start to spin, I think of last week on the beach, my peace is restored. I know it will all be okay.