Our YOUCARING story

Shortly after our first wedding anniversary we did what every couple tends to do and decided to try for baby. After a long 14 months of having no success we were mentally exhausted and turned to an Infertility Specialist. We learned that I have what's called Diminished Ovarian Reserve (a known side-effect of the serious acne medication, Accutane). They explained that natural conception would be unlikely and our risk of multiple miscarriages was high. We were crushed. Through all of our prayers, our hearts led us to Adoption. We met with an attorney a month later and thus began the lengthy process. 

After a short wait we received the call that we were chosen by an expecting couple. We were beyond elated to be chosen. We met with the couple and they told us we would become parents to a little girl in just a few short months. To say we were excited would be an understatement. 

A few weeks later, our birthmother showed signs of preterm labor. And our daughter was delivered by emergency c-section at 31 weeks gestation. She spent her first few hours of life fighting, alone in a NICU room hooked up to a ventilator. 3 pounds of pure heaven. I'll never forget the first time I laid my eyes on her, I was so scared and so in love, I just wanted to climb in her little incubator and tell her, "I'll always protect you and I promise to give you the world." And just like that all the pain of infertility was quickly forgotten. 

We chose the name Finley, which means "fair warrior." Couldn't be more fitting. We learned that she had suffered Bilateral Grade-3 Brain Bleeds due to her prematurity. When we googled "Brain Bleeding" we saw that likely she would have Cerebral Palsy (CP). We were told she would be very delayed and might not ever walk. We chose to do everything in our power to make sure this wasn't the case. Early intervention is Key.  We started therapy and Infant Stimulation when she was just 3 months old. We have done tri-weekly Occupational and Physical therapies, stretching programs, eye-surgery and patching, Botox injections, some medications, restricted diets, essential oils, supplements, infant massage, day bracing, night bracing,  horse therapy, water therapy, kinesio-taping, and ballet. All while trying to let her just enjoy being a kid.

Finley's official diagnosis is Spastic Diplegia Cerebral Palsy with overall Left-Side Weakness. Spastic diplegia, historically known as Little's Disease, is a form of CP that is a chronic neuromuscular condition of hypertonia and spasticity — manifested as an especially high and constant "tightness" or "stiffness" — in the muscles of the lower extremities of the human body, usually those of the legs, hips and pelvis. Spastic diplegia accounts for about 22% of all diagnoses of cerebral palsy, and together with spastic quadriplegia and spastic triplegia make up the broad classification spastic cerebral palsy, which accounts for 70% of all cerebral palsy diagnoses.

A few weeks ago, Finley was fitted for a wheel chair. It was the sweetest little chair I've ever seen. However, it was a tough pill to swallow that this new piece of equipment would be the next season of our life. We are not complaining, we know we are so blessed, but like every parent we long for endless opportunities for our girl. She wants to be standing all the time, I know this because she tells me so. 

My heart breaks a little everytime she asks me to help her stand.

If I could give her my legs, I would. As a parent there is nothing more devastating then watching your child suffer or struggle. She has to ask me to walk, to sit on something, to get off something, and often in the mornings she struggles to sit herself up. 

A few months ago, the magic happened. 
An answer to our prayers. 

We had many many signs leading us to this SDR surgery that is done in St. Louis. It is known as a life changing surgery for kids with Spastic CP. I've even seen it referred to as "the cure" for this type of CP. Another girl said after the surgery it was like she had new legs, a lot of people are saying that actually. 

Her Pain Management Specialist told us at our last visit in Febraury that he thinks Finley would be an excellent candidate for this procedure.  Really?  An opportunity for new legs for Finley?! 

Her Spasticity is already high and can become tighter as she grows. Often people experience joints popping out of place due to their spasticity, as well as spasms and severe muscle aches, which are all extremely painful. There are medications, but a lifetime of strong painmeds and muscle relaxers filtering through her little liver isn't what we want for her. This surgery is a permanent spasticity reducer and is best performed at the young age of 3.

Fifi just turned 3.

We've been through the application process and just received our surgery date in November! We know this is the next chapter of her young life. This surgery costs $50k and traditionally insurance does not cover it. We will have to travel accross country and stay in a hotel nearby. There is greater risk of "blood clots" if you choose to fly too soon after surgery, so we are hoping to raise enough to afford renting an RV so we can keep her comfortable during the 25 hour drive. That and we will be missing work, my husband and I are both commission only so being gone almost half of a month is a very scary thing for us, it would be incredible to not have to add financial stress. 

My girlfriend, Brittany, came up with the idea to fundraise using a Dare to Dance Challenge Campaign.  (Think ALS ice bucket challenge.) We hit the ground running with it, and so far it's been so successful! It led us to raise $45k in two weeks! We've seen amazing videos, even some from the Kings, Lakers, Perez Hilton, the KTLA news crew, and the famous twins from ABC's Tje Bachelor.  We have had to pinch ourselves quite often the last few weeks that everyone is dancing for our girl!  

A donation of any size would help us greatly! In the event insurance does miraculously cover the surgery cost, we will save it for her future surgeries & procedures (she'll likely have dozens of them before she turns 15) but this is the BIG one. We also have the strong desire to start the "Finley Foundation" along with Finley's physical therapist and her clinic.  We would love the opportunity to help other fanilies with special needs children in our community.  We know, we are dreaming big! There are so many parents hoping and wanting some help providing services for their kiddos! (We will update as soon as we hear from insurance, we are going to bat, folks!) 

We long to see our daughter take her first independent steps and cannot wait to dance with her and watch her twirl around in that adorable Trevi Ave Co tutu! 

To watch our story behind the Dare to Dance Challenge : click here

To donate: click here

To read more about the SDR surgery:  click here

To watch our dance video: click here

To watch us dance with the LAFD:  click here

A Letter to Myself, Before I Became a Special Needs Parent

I think everyone would agree - the worst thing about waiting - is the not knowing. You sort of have to suspend yourself in limbo. You look forward to the day you get the answer. It's torturous holding your breath until that moment comes, isn't it? It can be anything; a job, a loan, medical results, a conversation... but ultimately you have a sense of peace knowing the specific time frame you will be waiting? Right?? Like, I just have to make it to Friday, "then I'll be ok." 

Well I've learned, with Cerebral Palsy there is no Friday.  There is no date of cure. There is no day where you wake up with resolution. There's just the day that you realize you have become content with uncertainty.  

This day hit me this past Monday, when I was in the waiting room about to check out of one of Fin's Specialist appointments. I used to drag on each appointment as long as possible, (ignoring the body language of the Dr. as he back pedaled towards the door) asking so many questions and relying on the answers to bring me comfort. I needed to hear things over and over and I would leave feeling that "if I could just make it to the next appointment, then I would be ok." I could survive the in-between. Something was different this time. I was smiling and not crying, I had no questions, and I left feeling as though it was just a regular checkup.  This doesn't mean I've lost my mojo. There's a lot of fight in me.  It's more like my brain just switched to the next level. You may have read my "wait scale" post, this is a newly discovered mode for me.

Fin was a preemie that suffered brain-bleeding and we started therapy when she was 3 months old. That's when my eagerness began and my ability to cry at the drop of a hat started.  An undiagnosed child is a cause for high emotions and will cause any parent to be extremely tense or fragile.  Though, I remember being fearful of the official title stamped over my daughter's medical records. I was scared but thought, "If we only had a diagnosis, then it would be ok, because then we could have a plan of attack." Attack.. That's how I felt about it, as though it was something I could fight off completely. Then the diagnosis came. Don't get me wrong, it brought a huge sigh of relief, but I found myself looking forward to each appointment thinking somewhere it would somehow change. The pressure I put on each one, lead to increased pressure on the next.  I say pressure, because it feels like there's an elephant on your chest and you won't get that full amount of air in your lungs until you get your answer or reach the goal. I realize now that I was sprinting - ignorantly. And this is a cross-country run. I now know why some of the other parents I met didn't seem to be "full of hope" which I perceived to mean that they weren't trying to better their children's life and they had settled. Oh, foolish me. 

I met some really inspiring parents that gave me unsolicited tips or advice, I knew they could read the fresh dose of fear written on my face.  At therapy one time I had a mom tell me, "It ain't easy, but my motto is- if your kid is smiling, then you should be too." Looking back I can't even bear the thought of my baby smiling at me knowing I was fighting back tears of what could be. I wish I could have a chat with myself from 15 months ago, pre-diagnosis.  I'd say;

Hey mama,

Life is going to get hard- but it's going to be okay.  Parenthood is going to look different for you compared to your friends.  It could always be better or worse.  Be grateful in each moment, even the ones you feel 100% alone.  There's no one to blame, and no one is blaming you.  There will be a diagnosis, odds are many other labels, titles, and words will enter your life. Get comfortable with them, but don't let them dim your light.  Watch your baby girl grow and don't worry about everyone else.  You are on a unique road, don't expect others to understand it. Some days you'll want to be treated the same, some days you'll want them to know that life is different for you and your family. This is the path of a special needs parent. Those words "special needs" don't need to scare you either, I know you never thought they would be used to describe you.  While they don't define you- you will find comfort in them. It's a journey that you will take one step at a time. You'll learn to live in the now, and in time you will discover the beauty that was created amidst this pain. You will adjust to the ups and downs and the possibility that today might be worse than yesterday, but tomorrow will be better. You won't let this rollercoaster determine how you treat others, and you will certainly teach your daughter the same.  You won't merely "survive" each moment, you will make the most of them, after all this life is what you make of it.  You will celebrate every tiny miracle each day brings, and find yourself becoming best friends with your daughters many therapists . On the days you feel defeated, you will find a moment of joy and forget the whole day was challenging.  You don't need to feel guilty for feeling tired some days, you're human. Her progress doesn't solely rely on you, she will go at her own pace. Push her, but allow her to enjoy being a child. Follow her lead & be strong for her.  Don't compare her life to others',  it calls for a completely different set of rule.   Learn to adapt quickly, learn to speak up for her. You can do this, you can be your angel's backbone when she is weak. While you can control many avenues in your life, this one isn't meant to be controlled.  Her life is beautiful. Nothing can take away the love you have for her.  Nothing! Don't beat yourself up about trying to make everything perfect or easy for her- she's a tough cookie. You will never "fix" the cerebral palsy, but you can teach her to adapt to the best of her capabilities.  You won't let CP own her.  While you try to teach your daughter the smallest of tasks, she will be teaching you about the big picture. So, hold on tight and be prepared for the most amazing chapter of your life. 

Love, 

Yourself 

That "Special" Word

A Someone recently said to me that it takes a - special person - to raise a child with special needs. I told her, "It's actually quite the opposite... these kids make you a special person."

Exactly 3 weeks ago, our Physiatrist told me that Finley was an ideal candidate for this procedure called the SDR that they do in St. Louis. I knew exactly what he was talking about, because when we first learned of Fin's diagnosis it would always pop up in my google searches. The past few weeks we have been busy gathering documents, filling out applications, and making videos for her to get this crazy surgery.  It was all consuming. The Selective Dorsal Rhizotomy is where they to go into the spine and cut the nerves that send the signals from her brain to her leg muscles, these are the nerves that tell her legs to be "spastic" or tight. That's my layman's terms of it for you, it's a big surgery. One Huffington post article called it "Life-Changing".  In essence a "cure" for my daughters disability?? My 2.5 year old might be able to walk soon??  I could not fill out the paperwork fast enough! A friend that I made through an online support group shared her daughter's very recent SDR success story with me. This was the ultimate sign of hope, it made me feel as though our life could be "normal" one day.  Words simply cannot describe the way it made me feel. 

I think of my blog every time I'm in a waiting room, which marks 3 times this week (and it's Tuesday). We just got home from the Orthopedic Surgeons office. He encouraged us to wait on the surgery. Sigh, we all know waiting is my favorite thing to do. His words struck me to the core (I'm often dramatically emotional in these specialist's offices). As soon as he removed the possibility of this surgery from my immediate future, the little impatient girl inside me wanted to cry and say "no, I want it now!" He went on to explain the hypothetical risks. He concluded with, "She's still a baby.  Look at her progress since even just a few months ago.. I don't want to give up on her abilities just yet, look at her! She's perfect." I was tearing up, I agreed with him. I respect him & his professional opinion. I've been through my share of doctor visits that I disagree with.  (Including the Neurologist that told me there was "no hope" for our then 8 month old, to walk but that he could prescribe me valum to give her daily to "relax" her.  I think, back then when I left I was laughing out of disbelief.) 

This was different. This doctor has done so much for our CP journey with Fin. He was the doctor that diagnosed her and fought to get her insurance to cover more & more therapy coverage. He cares. 

It's so easy to look to that quick fix for hope (even though Fin's quick fix would entail a very intense spine surgery in another state!) By longing for the future, I was in a sense "wishing away" the current moments I have with her. As mothers we can't help but hope for that next milestone, right? Like, oh I can't wait for the day when my baby can hold their own bottle,  it will be easier when they can crawl, it will be so much nicer when they can tell me what they want... and before we know it they are grown up! (I've obviously been reminiscing - did you see my last post?? Lol.) 

I honestly feel a little sense of mom-guilt now, I was blinded the last few weeks... Why was I putting so much pressure on this surgery? Was I getting obsessed with the idea that it could be MY "fix"? I think it's human nature, I'm not going to beat myself up about it, but I thought about it the whole way home from the Doctors office. I cried some more (note to self: get it together, good grief.)

Life as a parent is tough, and life as a special needs parent is definitely not for the faint of heart! Even on the days where I feel like I'm a big fat failure, my negative thoughts always subside and I feel grateful for the life we have and the perspective it gives us. That little saying, "A pair of shoes can change your life," couldn't be more true.. Having Finley's special shoes in our lives has brought immeasurable meaning.  

Nothing that's worth having comes easy, and I'll be darned if we don't work our butts off the next few years getting our girl up and walking! I dream about it and I know she does too. That day will come soon and when it does... you better believe there will be some gi-normously special tears! 

Special- adj. exceptionally good or precious

(I want to clarify that I fully support the SDR surgery! If Finley continues to be a candidate for it, we will pursue that option in the future.) 

There's a Wait Scale

Hi. If you've found yourself - here - reading this, Welcome!  I never wanted to write a blog, I just came to the realization that, maybe I should. I was reflecting on my life and how it was thoroughly wrapped in twists, turns, curveballs, bumps, dips (what have you). The thought hit me while I was sitting and staring at a row of uncomfortable chairs across from me, an empty magazine stand, a coffee-stained end table beside it, and the body language of the company around me said a sad story. Yep - you guessed it, I was in a waiting room and struck by deja vu. Have you experienced this? It's like waiting room muscle memory. I'm used to waiting in general, are you?  My body sort of assumes the position, so to speak. Do you feel like this? Have you ever had a moment where you sort of woke up and realized you had changed? That somewhere along the road you've adapted to living in different circumstances? It's weird, right? If you aren't nodding in agreement with me, you will get something very different out of this blog. Maybe you do know what I'm talking about, and you or your child has medical or special needs and waiting rooms are part of your normal life routine... Perhaps you are in a metaphoric waiting room & have spent time on stand by for an important phone call, or spent the longest two minutes ever staring at a pee-stick. Perhaps you've endured the wonderful two-week-wait. The list goes on: waiting for test results, call from a doctor, your pain to heal, an attorney consultation, the social worker's approval, to be chosen, to take your baby home, to adopt... You get the idea. Life-changing moments, that not everyone is going to experience in this lifetime. 

I'm referring to times that you are, quite literally, exercising patience. I don't think it's something you have, I think it's something you pursue. (Like happiness.)

You've probably heard, "Just stop thinking about it, and it will happen." Or "You just gotta keep busy." Matter of fact, I know you've heard this disguised as other phrases:

"Just relax, stress makes it worse.."

"If God brings you to it, He'll bring you through it.."

"Be Strong, Stay Positive.."

"Did I tell you about my friend so-and-so who (insert story here).."

People mean well. I must say that it also depends on your relativity of closeness with the person saying these things to you, right? Sometimes these words can ware down patience rather than be encouraging. Truth is- you don't need to hear anything deep or quotes from the Dalai Lama..  just merely knowing you are loved and that people are there for you. That's it, pretty simple. 

I have a scale I like to use while I'm in a wait. Maybe you have something similar?  Ok, if I'm able to distract myself with an entire episode of Housewives, I know it's not that bad. If I look down and it appears I've finished the whole bottle of Pinot (even though I'll accuse my husband of doing so), it's pretty bad. If I wake up in the middle of the night crying, literally having just cried real tears in my dreams- wet pillow and all- then I know I'm at rock bottom. Of course other emotions - grieving, in my case - come into play. At that point you can only describe yourself as 'hopelessly hopeful'.

Let me give you a brief background on me: 

At 28 my Father was in a tragic motorcycle accident. He was in a coma for 27 taxing days, and passed away on the 28th day. 2 months later, we received the news that I had  "diminished ovarian reserve" (which landed at the 17 month mark of us trying), it was a tough pill to swallow, learning that I could not conceive naturally. 2 months later my husband and I officially became "paper pregnant" & we were ready to adopt. 2 months after that, we were picked by an Expecting Couple to parent their unborn child. 2.5 weeks later, our daughter was born prematurely and suffered brain injuries as a result. One trying year later, she was diagnosed with Cerebral Palsy. One very colorful year after that, My mother-in-law began her 3rd Battle against Cancer. Breast, Uterine, now Brain. She did not win the last war. She passed away, 3 days ago. 

We're heartbroken & exhausted. 

I was in the waiting room with my husband's family when I realized much of my married-adult-life has been spent in cold, unwelcoming rooms. (Real & Metaphoric).  We get through things in life, and while I do have faith in Christ, I know I've developed a skill-set in dealing with tragedies. Laughing amongst the pain is one of them. Endurance while exercising patience is another... 

 

 Our daughter will undergo multiple procedures in the near future, and my husband and I will likely adopt again one day.. Whatever it is you are going through, I'll be here and I'll wait with you.

(I had to share this cheesey photo of myself... Just sitting here waiting lol).