Paying It Forward: Session 5 Round Four

We have been BUSY since February. We have helped 15 families thus far this year. Our funds were raised from blacklight gauntlets at every location, burpee challenges, the golf outing, DBBB merchandise sales, the and the Irish Fest 5k!! I would sincerely like to thank each and every one of you who participated in these events or donated to our cause. You each hold a very special place in my heart. DBBB wouldn't exist without all of you. I am beyond excited to see how we finish the rest of the year.

I am going to post backgrounds about the families we have helped in rounds since we have helped so many. Some families have chosen to keep their story private. Please continue to pray for all of these families!

Karter Goodchild

 For those of you who don’t know me, my name is Tiffany (Everding) Goodchild and I am originally from Tripoli, IA.  After completing my graduate program at UNI, I resided in Cedar Falls working as a school psychologist in the Waterloo Schools.  During that time, I was fortunate enough to have my path cross with Mr. Ryan Matthew Downs.  He was beginning a new fitness program and knew that I had an interest/experience with kickboxing.  Long story short, I was the first female trainer for NLXF, alongside Ryan and Creed, when they began their first session.  Aside from the fact that I was in the greatest shape of my life, the best part of the program was truly the relationships I formed.  As cliché as it sounds, NLXF genuinely felt like a family.   I met my husband, Kole, in 2011, and moved to Minneapolis to be closer to him.   It was difficult to say goodbye and end the NLXF chapter of my life.  Five years later, we are married with two children.

This brings me to how our story intersects with the Do Better, Be Better foundation.  Four weeks ago, I was 39 weeks pregnant with, what I thought, was a healthy baby-our second child.  Every prenatal check-up had produced normal results, with no cause for concern.  On June 26, 2016 I felt my “mommy instincts” kicking in.  I hadn’t felt my baby move all day.  Kole and I went in to my care team to make sure things were ok.  Although I couldn’t feel them, I was having mild contractions and our baby was not responding to them.  Hence, the doctor recommended we schedule a c-section for that day.  As the spinal tap was being administered, the look on my doctor’s faced changed.  Immediately she called for an emergency c-section.  Our baby’s heart-rate had dropped to a dangerously low rate.   The doctor performed the fastest c-section of her career- start and end time 6:08 p.m.

It was a baby boy, but he was not breathing.  The NICU team was there ready and waiting, and resuscitated him within minutes.  Critical minutes where his little brain was deprived of oxygen.  Karter Koy Goodchild remained in the NICU for one week. Much later we also learned that 2-3 days prior to his birth, a very rare thing happened in utero.  One of the blood vessels from my uterus to the placenta had a “sinus bleed.”  This means that although my body was delivering oxygen and nutrients to Karter, they were going right back to my body through this bleed.  By the time he was born, he lost almost all of his blood.  In essence, his little body was being deprived and poisoned without any warning. 

In addition to this, and with him being born not breathing, he also experienced seizures the first night he was in the NICU.  All of this lead to severe brain damage.  Karter underwent the cooling/warming process, as he had serious swelling in his brain.  Despite these efforts,  the MRI and EEG indicated that Karter’s damage was too severe.  That is, the team recommended removing life support and ending his life.  They were certain Karter would not experience any quality of life.  We were devastated, but were not presented an alternative.  The only option was to cherish the minutes or hours Karter would live after his ventilator and other life-supporting interventions ceased.

To everyone’s surprise, Karter lived.  After two days in the board room of the NICU, we were sent home with our sweet baby boy and placed on hospice.  The first 5 days were agonizing.  We watched our chubby, adorable baby slowly fade.  However, Karter’s body began to change.  He began to nurse.  He began to cry.  His breathing and heartrate remained steady.  .

Two hospital stays, another MRI, and additional EEG later we now know more about Karter’s brain, the damage that exists, and potential explanations for why Karter lived (when they predicted he couldn’t).  Despite the incorrect doctors’ initial predictions that could only survive minutes-hours, the fact remains that his brain is severely damaged.  In fact, his MRI scan is the worst our neurologist has ever seen.   While his brain stem and cerebellum were spared, the vast majority of his brain cortex is irreversibly damaged.  Given this, the doctors all predict that Karter will not walk, talk, or visually understand his world.  In addition to the neurological deficits, Karter was also born with “multi-organ dysfunction.”  Virtually all of his organs were severely damaged.  All of this is overwhelmingly devastating. 

As of September 15, here is what we know about Karter’s disability and prognosis:  Karter has severe cerebral palsy.  This means he will not have any control over any of his limbs.  Spastic quadriplegia is the technical term.  This means he will not ever be able to feed himself, dress himself, roll over, sit up, crawl, walk, etc.   Additionally, they don’t think he will ever be able to communicate in a meaningful way, and most definitely will not be verbal.  Our neurologist described his overall functioning to be very “simple” compared to most . Because of the brain damage, he will also likely develop epilepsy, which manifests itself through seizures.  In fact, he underwent a video EEG yesterday (September 14) and determined at this point he is not having infantile spasms (how epilepsy presents itself in infants), but that it could develop in the next 2-3 months.  When this happens we will have to consider intervening with medicine, some of which can have severe side effects.

They describe his head as “microcephalus” because his head will never grow at the rate that is expected of children and infants his age.  He also has “cortical visual impairment” (CVI), which means that his eyes are physically and developmentally unharmed, but because of his severe neurological deficiencies he will not visually process or understand his world.   He is also at risk to lose his suck/swallow ability, and could need a feeding tube to sustain nutrition.  Because his brain is so damaged, and his organs suffered so much dysfunction, Karter’s body will not be able to fight off and respond to illness the way healthy bodies do.  This means he is more at risk to have fatal difficulties related to any illness he acquires.  In terms of life expectancy, nobody can say for sure.  However, they predict he could have months to years.  He likely will only live to be a toddler (if he survives his first flu season as an infant), but could live much longer than that depending on how his brain and body develops.  If what the doctor’s say turns out to be true, Karter’s medical and care needs will be intense.  He will never have any level of independence, and will likely require a wheel chair with special accommodations.  The older and bigger he gets, the more difficult meeting his care needs will be.   And eventually he will leave this earth much sooner than most people. 

This has drastically changed the course of life for our family.  I have chosen to stay home with Karter, which means we are financially dependent on my husband’s salary.  My role has shifted to Karter’s primary caretaker, and my schedule is filled with trips to his pediatrician, occupational therapy, physical therapy, speech therapy, and a monthly check-in with his neuro-palliative doctor.  Our almost-two-year-old daughter will have her own journey being a sibling of someone with a disability.  This will certainly alter the childhood we expected her to have.  While our initial plan was to expand our family to 3-4 children, we are unsure if we will ever be in a position to fulfill those dreams.   Should Karter live years, we will likely have to move homes to one that is wheelchair accessible, as well as purchase a vehicle than can install a lift for his chair. 

We are humbled, overwhelmed, and forever grateful for the generosity and love people have shown.  From the bottom of our hearts, thank you.  Please keep us and our #kourageouskarter in your prayers.

With Love,

Tiffany and Kole Goodchild

Stacy Burt

Stacy Burt is a husband and father to five children.  He also has two grandchildren.  He was born in Waterloo and has lived in the area throughout most of his life.  He was in the United States Marines and later worked for Bertch Cabinet Manufacturing as a driver.

In September of 1999, he had a large brain tumor removed.  As a result of the tumor, he lost all hearing in his left ear, has permanent numbness on his face and shoulder nerve damage. 

Ten years later in September of 2009, a very large malignant brain tumor was removed.  During surgery, Stacy had two strokes and numerous other issues that he continues to struggle with on a daily basis, including vocal and facial paralysis, issues with his left eye, difficulty walking, numbness on his entire left side and delayed motor skills.  He temporarily had a tracheostomy and feeding tube.   He completed 33 radiation treatments. In 2011, a metastisized tumor was removed from his spine.

In May of this year a third brain tumor was partially removed and

he has struggled with many seizures and a very serious infection.  He had pneumonia, meningitis and was septic.  He has great difficulty swallowing so has a feeding tube and until recently, a tracheostomy.  A permanent shunt was placed before leaving Iowa City.  

Recently he was found to have peritoneal mesothelioma and fluid surrounding his heart.

Stacy completed inpatient rehabilitation at Covenant and currently is working on various therapies in outpatient rehabilitation.  In early September he had pinpoint radiosurgery on the remaining brain tumor. 

Stacy tries to remain positive and plans to continue fighting, even though he has had continued setbacks.  He is definitely a fighter and hopes to be able to be with his family for many more years!

We sincerely appreciate the gift from Do Better. Be Better.  It was a lifesaver during the eight weeks that Stacy was hospitalized in Iowa City and we were very, very grateful!

Paying it Forward: Session 5 Round Three

We have been BUSY since February. We have helped 15 families thus far this year. Our funds were raised from blacklight gauntlets at every location, burpee challenges, the golf outing, DBBB merchandise sales, the and the Irish Fest 5k!! I would sincerely like to thank each and every one of you who participated in these events or donated to our cause. You each hold a very special place in my heart. DBBB wouldn't exist without all of you. I am beyond excited to see how we finish the rest of the year.

I am going to post backgrounds about the families we have helped in rounds since we have helped so many. Some families have chosen to keep their story private. Please continue to pray for all of these families!

Gabriel and Natalie Burns

On November 6, 2013, I gave birth to my first child Gabriel Lucas Burns. He was born at 7 pounds 14.3 oz and healthy. We took him home 2 days after birth and started our life as a family of 3! At about 3 weeks old, Gabriel started having difficulties eating. He would nurse for 1-5 minutes and then just scream and back arch for 15 minutes. The doctor put it off as a normal thing for a month. After a month of terrible feeding and weight gain, I finally asked about reflux and the doctor finally put him on Zantac. After a few weeks and nothing helping his feeding discomforts, I stopped giving the medication as it did nothing. I cut dairy out of my diet in the end of February and started noticing a difference! Whew! That was easy! But he started sleeping like a newborn at 3.5 months and he was not gaining any weight still.

On February 27,2014, Gabriel began puking the contents of his stomach. Anytime anything would hit his stomach, he would empty it. I took him to urgent care and they told me there was nothing wrong with him and sent us home. Later that evening, around 6 pm, I noticed a tiny red dot in his diaper, but it was enough to send this momma into crisis mode! Was my baby beginning to pee blood?!?! I took him to the emergency room after talking with ask a nurse. We got there at about 10 pm that night. They ran all sorts of tests due to the fact that he was still vomiting and very pale. The tiny red dot was just chaffing caused by the diaper (we were using cloth diapers at the time). The doctor finally came back in around 3 am and went over the results of everything with me all at once. Everything came back completely normal. Then he got to the x-Ray--Gabriel's heart was very enlarged. He sent us home that night and told us we needed to follow up with his pediatrician sometime in the next week.

At 8:00 am on February 28, I called the pediatrician's office and talked to the nurse. I argued with her for 20 minutes to get my son in. Finally she said "fine bring him in at 11:20." We got there and the doctor reviewed the X-ray image. I was sent home with Gabriel and he told me that there was nothing wrong with him but that he would admit him for dehydration and get another X-ray taken and some other tests just so he knew he was right. That day was a very busy day. They put an IV in his arm, put him on oxygen, did another X-ray, an EKG, and an echocardiogram. After all of that, the pediatric cardiologist in Waterloo -Dr. Chandra came in on his day off to repeat the echo. As soon as he walked in the room I knew there was something wrong. When he was done, he turned to me and my husband and looked at us with a concerned blank stare and said "let's go across the hall and chat." My heart dropped. Dr.Chandra then explained to us that our son was born with a Congenital Heart Defect called ALCAPA otherwise known as the Anomalous Left Coronary Artery from the Pulmonary Artery. He explained to us that Gabriel would either be taken by ambulance or life flighted to Iowa City and would require open heart surgery within the week and told us some other things to expect. They decided ambulance was the safest route as there was a major snow storm coming in. The ambulance crew arrived around 6:30 that night. They got him all packed up in the isolette and we followed behind the ambulance. It took 3 hours to get there due to the major blizzard. They stabilized Gabriel that night and we all rested.

The next day was filled with tons of information. We met with doctors and the surgeon to get more Information on what to expect. Surgery was scheduled for Monday, March 3, 2014. That was a hard day as it was my birthday. Surgery was expected to take 4-6 hours. Those 4-6 hours came and went quickly. They couldn't control the bleeding and he couldn't successfully come off bypass. They put him on a heart and lung machine called ECMO. He spent 4 days on ECMO and his heart was able to start healing. After he came off ECMO, his chest remained open for 2 more days. After they closed his chest they began working to get him off the vent. Once he was off the vent they pulled all but 1 of his lines and they moved him to the step down unit! We spent 2 weeks on 2JCP and worked on feedings. We ended up coming home with an NG tube for 4 months. When we were done with the tube, Gabriel started gaining the first weight he had gained in 5 months. He just took off.

He still has moderate mitral valve regurgitation and right pulmonary artery stenosis. Today he is a 2.5 year old little boy that has more energy than me and my husband combined. He has asthma now but it is pretty well controlled! He will have another surgery to replace/fix his mitral valve in 2 years unless it continues to get worse.

There is more to our story though! On September 9, 2015, we found out we were expecting our second child. On December 20, 2015 we had our 20 week level 2 anatomy scan with an Iowa city doctor. They could not rule out a heart defect as baby would not show its heart. We found out we were expecting our little Natalie Renee Ann Burns. We had a fetal echo with Dr. Chandra and he said he was 70% sure our daughter was going to be fine but not totally sure because she once again wouldn't show her heart very well! On January 18, 2016, Gabriel was admitted to the peds unit at covenant for 5 different respiratory infections and an ear infection. He spent 3 days in the hospital. He was released on the 21st. We had our follow up ultrasound with the Iowa city docor. Natalie finally cooperated and showed her heart! She was then officially diagnosed at 24 weeks gestation with Transposition of the Great Arteries (TGA).

On April 21, I was going to a routine OB appointment in Iowa City and was diagnosed with preeclampsia at 37 weeks. They admitted me and induced me!!! At 7:49 pm on April 22, 2016, our beautiful baby girl was born weighing 5 pounds 15.5 oz! She had to be intubated at birth because she could not hold her oxygen saturations. She went to the NICU for the overnight and the next day they transferred her upstairs to the PICU. On Sunday the 24 she was taken to the cath lab to have a balloon septostomy done to open her ASD. That was a success. Then on April 27, at 5 days old, she had surgery to fix her heart. Surgery went amazing! She was extubated on post op day 2 and struggled that whole day and ended up needing to be reintubated. She spent a few more days on the vent and finally was extubated! We started working on nursing! At an hour of being off the vent Natalie latched and had her first taste of breastmilk!!!! They moved her back to the NICU where we spent a week before coming home on my due date- May 12!!!! Today Natalie is almost 5 months old and considered a healthy baby!!!!! She has been a fighter since day one and neither child has ever ceased to amaze us!!!!

Terri Shakespeare

I felt a lump in my right breast in July, 2013. I just didn't feel right. On August 13th, I had a lumpectomy. I found out on Aug 15th that I had invasive ductile carcinoma, Breast cancer. I went through 4 chemo treatments plus 36 radiation treatments. In November 2014, I felt a lump in my armpit found out in December that the cancer had returned. On January 2015, I had a double mastectomy. I had many drains and infections after this due to my blood counts being so low from the chemo (we call red devil). This was very harsh and put me in the hospital after each treatment. I had another 36 treatments of radiation. In November 2015, I had a flap surgery done for reconstruction. I thought for sure my journey with cancer was over. Nope, not at all. Since then I've been diagnosed 2 more times. The last time was in August 2016. It was non removable. Stage 4. I'll be doing a estrogen blocker shot monthly and ibrance pill for the rest of my life.





Natasha Bryan

Natasha is a smart little girl who loves to read and draw. Last November we found out that she was diagnosed with Stage 4 Wilm's Tumor, the tumor was big and it has also spread to her lungs. That was when she had her first surgery to put in her port and to biopsy. After that many weeks of chemotherapy and hospital stays because she was losing weight, about 15 lbs total. In March, we got the good news that the tumor was small enough to remove but also her kidney, adrenal gland, and 5 inches of lymph nodes went with. After healing up, she did 2 weeks of radiation therapy, she was super excited to ring the bell. 



More chemotherapy was up next, which wrapped up in the beginning of August. Hoping for the all clear we were disappointed to hear that there is now a spot on the liver. We find out what we happens next for us on September 12th. Overall, she has been one of the strongest people I know, all days are not good days but she makes the best of them.

Paying it Forward: Session 5 Round Two

We have been BUSY since February. We have helped 15 families thus far this year. Our funds were raised from blacklight gauntlets at every location, burpee challenges, the golf outing, DBBB merchandise sales, the and the Irish Fest 5k!! I would sincerely like to thank each and every one of you who participated in these events or donated to our cause. You each hold a very special place in my heart. DBBB wouldn't exist without all of you. I am beyond excited to see how we finish the rest of the year.

I am going to post backgrounds about the families we have helped in rounds since we have helped so many. Some families have chosen to keep their story private. Please continue to pray for all of these families!

Kellie Leasure

Kellie’s story started before the birth of their youngest child, Chelsea, who is now 4 years old (Kellie and her husband, Chris, have 4 children-Chris, Annie, Elise, and Chelsea). Kellie was not feeling herself, experiencing bone pain and extreme exhaustion.  She went to the doctor on multiple occasions, but at each visit, she was told she was fine and just feeling the effects of pregnancy.  Before this time, Kellie had also felt a lump in her breast but was told it was not cancer, just scar tissue.  Several months after experiencing these symptoms, Chris and Kellie’s beautiful daughter, Chelsea was born!  Shortly after Chelsea’s birth, Kellie felt a swollen lymph node and was told to delay another mammogram (Kellie has always been adamant about getting regular mammograms) because she was breastfeeding.  Not long after, she was diagnosed with breast cancer.  Originally misdiagnosed at a lesser stage, Kellie ultimately found out she had Stage 4 breast cancer (breast cancer that has metastasized elsewhere and is not curable).  She underwent chemotherapy, radiation, and a mastectomy at the Mayo Clinic, where she is currently being treated.

Over the past year, Kellie has been through more ups and downs.  In addition to the stress of having to go to Mayo frequently for scans, test, checkups, treatments, etc., Kellie found out last fall she had a brain tumor.  Unsure if it was cancer or not, Kellie had gamma knife surgery.  The lesion was found to be a benign meningioma, Praise the Lord!   Flash forward a few months later, more testing revealed that Kellie had lesions on her kidney.  She underwent ANOTHER surgery and found out that she had primary kidney cancer (unrelated to breast cancer).  Thankfully, surgery was the “only” treatment needed.
 
As of late, Kellie has struggled (although those who know her knows she hides it well!!).  She has had debilitating pain over the past few months.  Kellie has remained positive and refrains from complaining.  She is clearly the strongest woman ever!  After more testing to try to find the source of her pain, she received news that she has tumors on her spine and femur.  The next course of action is to have radiation, surgery at Mayo on September 6 to take out the tumors and fuse parts of her vertebrae, and more radiation a month or so following surgery.  Her doctors are all teaming up and trying to treat this terrible disease as aggressively as possible!!!  **UPDATE: The surgery went great!

 Kellie has been very vocal and adamant about several things since during her journey.
1: Be your own advocate.  If you know something is not right with your body, you need to advocate for yourself.  Get 2,3, 5, 10 different opinions and keep searching for an answer.  Don’t get written off.
 2: Mammograms do not detect disease for everyone!!!  Some women have dense breast tissues, and mammograms may miss cancer in these women.  She has been pushing for the “Dense Breast Bill” which would allow women to get MRI’s/additional diagnostic testing instead of mammograms to help catch cancer early.  In Kellie’s case, doctors mentioned that she had dense breasts, but no one ever ordered additional imaging.  Had this been the case, the cancer likely would have been detected much sooner, and she likely would not have to be dealing with all that she is.
3:  Stay positive—dance in the rain!  One thing is for sure about Kellie-she’s astonishingly positive.  She chooses to find joy and light in even the darkest circumstances.  This positivity can do so much for one’s mental and physical well-being!
 4: Trust in the Lord Jesus and have Faith!!!  Without Christ, we are nothing.  He walks with us in the best of times and the worst of times.  He never leaves nor forsakes us!!  Trust that the Lord will see you though and hold your hand the entire way.  (Isaiah 41:10-“So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand.”)
 5: Believe in miracles.  Yes, God performs miracles daily, and we should believe that He can heal us, even if science tells us it’s impossible.  
Please visit Kellie's GoFundMe Page https://www.gofundme.com/SupportTheLeasures

Angela Owen

Last December I went in to my gynecologist for a routine pap smear and check up. It had been 3 years since my son was born, and was time to get it done. I went in that day feeling healthy as ever, and never expected the outcome that came from that appointment. My doctor felt something in my left breast that she didn't like, and referred me over to the breast clinic for a mammogram. What she felt was not a "lump." I don't know what she felt, because I myself could not feel it! She told me not to panic, it was probably nothing, but we should get it checked out just to be safe. Three days later, I went in at the age of 33 and had my 1st mammogram (which I never planned on having til I was 40 like they recommend). After my mammogram, I had an ultrasound, and received the most shocking news of my life. I will never forget the radiologists words as he said them. He said "This looks very much like breast cancer, and I am very concerned about it." After 2 weeks of tests, biopsies, mri's, and appointments with oncologists and breast surgeons, I was diagnosed with Grade 3 Invasive Ductal Carcinoma. I had 8.5cm of cancerous mass in my left breast, and it had spread to 1 of my lymph nodes. On December 30th, just 20 days after being diagnosed I started chemotherapy. I was terrified of what my future held that day, but I knew I was going to fight my ass off to live! I was not going to sit around and feel sorry for myself. My husband Ryan and our 2 children Kyla (6) and Cruze (4) are my whole world and I will be apart of it! I was not ready to give up on them. I started a blog to keep my family, friends, and loved ones informed of my progress. I wasn't sure if I should go public with my journey, but it was the best thing I ever did!! By simply posting my blog on facebook, I received so much love and support from many! I was relieved that I admitted to myself and to the world that I had Cancer. It helped me to talk about my feelings, and I even think it helped my friends and loved ones understand what I was going thru.

I completed chemotherapy on April 14th. I lost my hair, was very sick, but I lived each day like I did not have cancer. I went to work as much as possible, kept a positive attitude, and was open and honest with everyone about what was going on with me. Nothing good ever comes out of a negative attitude, so I was not going to let my cancer get the best of me... no way!! On May 25th I had a double mastectomy and reconstructive surgery at the University of Iowa. My results from surgery were nothing but positive!! that 8.5cm of cancerous mass was gone (all but less than 1mm of mass was left. they removed 7 of my lymph nodes and they were all negative for cancer. My chemotherapy did exactly what it was supposed to and KILLED MY CANCER!! Today, I am in the beginning stages of radiation. I have had one week of radiation so for, and no side effects yet. I will continue to do radiation for 5.5 more weeks. My last radiation treatment will be August 24th. I also still receive an infusion drug every 3 weeks called Herceptin that I will receive until the end of the year. I have been thru the worst part and I am getting so close to the finish line.

Many who know me, tell me often that they don't feel like I really have cancer. That is because I refuse for it to change how I handle each and everyday. I learned that through chemotherapy that I felt better physically and mentally if I continued to carry on with life as is. So I got up and went to work everyday, and I parented my children the same. I never wanted to worry my family so I kept life as normal as possible for my children and everyone that I love. No way am I going to let Breast Cancer take my life away from me. I am not ready yet, I love life, and I am blessed with happiness. I try to share my story through my blog not only to communicate how I am doing, but also to support others going through tragedy. I could not have gotten through this experience without my family, friends, neighbors, and supporters. The only way I know how to pay it forward is to do the same to others who need support, and that is what I intend to do. Thank you so much Do.Better.Be.Better. This organization is exactly what I want to live by after being told I have cancer. I fully understand that I am not the only one who has been through something like this, and I just want to support others.

Please visit Angela's blog http://takingonanewchallenge.blogspot.com/

Sincerely,

Angela Owen

 

Paying it Forward: Session 5 Round 1

We have been BUSY since February. We have helped 15 families thus far this year. Our funds were raised from blacklight gauntlets at every location, burpee challenges, the golf outing, DBBB merchandise sales, the and the Irish Fest 5k!! I would sincerely like to thank each and every

one of you who participated in these events or donated to our cause. You each hold a very special place in my heart. DBBB wouldn't exist without all of you. I am beyond excited to see how we finish the rest of the year.

I am going to post backgrounds about the families we have helped in rounds since we have helped so many. Some families have chosen to keep their story private. Please continue to pray for all of these families!

Jace PatRick Smith

Our 13 year old son Jace PatRick was flown to Mayo in the early morning hours of Feb. 19, 2016. While there he was placed in a medically induced coma to control his seizure. This was the first known seizure that he had. In the past we had visited with many doctors about various things but had always been told he was a healthy boy. I am sure it was the mother in me that wasn't satisfied with that answer. Finally a doctor at Iowa City diagnosed Jace with dystonia at the age of 10. The doctor also said he had seizure like activity. So we then made an appointment with Mayo to get more answers. The doctor at Mayo agreed with the dystonia but wanted to remove seizures from his records. Knowing what we know now we believe Jace was experiencing seizures the whole time.

So back to the hospital...one morning while we were at the hospital we ran into Patrick Smith and found out Jamie was also admitted to the hospital. After we chatted with both Jamie and Patrick both Chris and I talked about their strength and kindness. I remember Jamie being more worried and concerned for Jace as she was of herself. Not long after we received a check in the mail from the Do better. Be better. Foundation. We were very thankful as we knew we had a long unknown road ahead of us. We knew Jace was strong but we weren't sure what we were dealing with at the time. We knew we would have many times that our faith in God would be tested. The strength and support of our family and friends helped us keep faith. We were very hopeful for Jace's recover.

After many days and tests we found out Jace was born with a mitochondrial mutation. (This is what Jace was studying in 7th grade science). Now things were starting to make sense. Looking back he had experienced other things that even the doctors were unable to diagnose. And it all was accumulating. His body did not have the energy to handle everything that was happening. The combination of the mutation, puberty, and his seizure(s) was too much to recover from. On April 24, 2016 Jace passed away in Chris', Macy's (our daughter) and my arms surrounded by family. We have found out since Jace is one of 5 kids with this mutation. We knew he was always special! And looking at the other children we were lucky to have Jace with us for as long as we did. Three of the others with the mutation died under the age of 3. There is one living 7 year old with other severe disabilities. The doctors that performed his genetic test said that even if they would have discovered the mutation earlier they wouldn't have had any knowledge on what treatment would have worked.

This was God's plan. The plan isn't the plan We even imagined for our family but we know it could have been worse. Jace didn't suffer. Jace had a good life. It has been hard to live with our new normal but we look back at Jace's life and he was such a good example of how we are supposed to live life. Every day he was excited for life. Even the little things. He didn't complain about anything (except for some of the meals I cooked!). He cared for others more than himself. He gave everything he had to whatever he was doing. And he gave everything and never expected anything in return.

There have been so many things that have happened during this journey that has strengthened our faith and our trust in God. Two stories that I will share that makes it hard not to believe. 1. On Wednesday night before Jace went to the ER he had a dream that he was in the hospital having a lot of surgeries. Jace was a very anxious kid that did not like going to the doctors. And when we went into the ER room on Thursday he was scared. They released us because they thought he was just nervous and needed to sleep. But when Chris took him back on early Friday morning he was so calm. I asked him how he was and he gave me a thumbs up and smiled. I know he hated when I worried about him but I believe God was there to comfort and guide him. (This was the last time I spoke to him alive.). 2. The last night in the hospital before we took him off the support I told him to let me know he got to heaven safely. We got home and I sat in my driveway and there was one star in the sky right over our house that was twinkling. I had to grab Chris and Macy to confirm that it wasn't anything other than a star.

We believe that when our time on earth is over we will be reunited with Jace once again. Until then God has given us family and friends (old and new) that will help us get through the days.

We miss Jace's zest for life and the small joys that made life fun, his compassion, his caring heart, his non-stop energy. Jace had a smile that made everyone around him smile. And when you met him he left an imprint.

We are doing our best to learn more about mitochondrial mutations and diseases. And one day we hope to help another family.

Chris, Natalie and Macy Smith

Carter Bixby

On May 9, 2016 my son Carter was rear ended while driving a tractor. He was ejected from the tractor and landed in the ditch. The tractor continued to drive around him twice missing him by 15 feet both times. The ambulance rushed him to Allen Hospital where they examined him and became very concerned about a brain bleed and possible chance of losing his eye so they decided that he should be transferred to Mayo in Rochester. We arrived at Mayo and spent a week in the ICU. Carter ended up with 9 broken ribs, multiple facial fractures, a broken clavicle and scapula, a collapsed lung, a cut by his eye and a small brain bleed. We where then moved out of icu to another room for about another week. We got home back to Dike on May 20 and what a miracle we experienced. Carter's eyesight is back to 20/20, his brain bleed is gone and his lung looks great.

Beckett Smith

My son Beckett (now 8 ) was born April 15, 2008 at 31 weeks at Mercy-Des Moines due to Placenta Previa. In spite of his prematurity, we only spent 3 weeks in the NICU and were told he looked amazing! He was 5 lbs when we got home and simply considered to be a "feeder grower". We were home in Early May of that year and carried on life with our new baby! His first few months were a little rough in the fact that he very VERY seldom slept, didn't eat and cried non stop. I begged to have a CT scan or something done and in mid July--the local CT scan came back and the dr said that Beckett was "missing part of his brain" and we were referred to a Neuro in DM with an appt date in mid OCT. I called Mayo on my own and got an appt up there for the same week that we were told the initial CT scan results. Mayos CT scan revealed that he was NOT "missing part of his brain", but that he had a thin Corpus Callosum. (This is actually seen in males often and is simply why they can't "think with both sides of their brains at the sane time"). We were told not to worry. Beckett was failing to thrive (still weigh 8 lbs 11oz) at 5 months, sleeping only an hour in a 24 hr period, and crying non stop. In Oct 2008, Beckett had his first seizure. The next day he had another. We were sent to Mayo where we started cares. In the beginning of Dec, he had his g-tube placed and we spent his first Christmas in the hospital. Over the next 2 years, we had many MRIs, biopsies, surgeries and hospital stays to try and determine what was going on with our sweet guy. We saw every branch of specialty imaginable. Eventually, repeat MRIs revealed that the white matter in his brain wasn't developing normally. I sent his medical records all over the country and harassed Drs until they would speak to me-simply in search of a "diagnosis". It became clear (in an UNclear way) that we weren't going to "know" what was going on with Beckett in a timely fashion. Life turned into treating "symptoms"....managing seizures, trying to help him grow, trying to figure out why his body wasn't doing things that it should be.

Beckett has been diagnosed with a couple of different things--many of the these diagnosis's coming and going over the years. Septo-optic dysplasia, Periventricular Leukomalacia, mitochondrial myopathy, white matter brain disease, failure to thrive etc. we were told he was blind, would never walk, would never communicate, would never eat orally on his own, and many more "would nevers"....and would most likely not live past 2. We have had many many MANY hospital stays, ups and downs, and he continues to persevere. He began preschool at 3 and we continued living life treating Beckett as normally as possible. We wanted him to have friends, to learn just as his peers, and to push himself as much as possible!!!

Much of Beckett's life has been a series of trial and error. Always kind of pushing...pushing Drs to search for a more concrete and fitting diagnosis, pushing him to thrive, and pushing ourselves to live as normal as possible! Over time Beckett has continued to prove Drs wrong, forge his own path, and become the most inspirational person I could possibly imagine. While he has very poor head control, he IS able to lift his head up and that's a success!! He has a feeding tube, but LOVES mashed potatoes and Chicken and Stars. Beckett is primarily wheelchair/stroller bound but LOVES walking in his gait trainer. He may not be as "normal" as his peers but he engages with them and is adored by them. He "communicates" by "giving kisses", flicking his wrist for "yes", non-verbal "sounds", frowning (even a little glaring from time to time 😉😂), and with a smile and laugh that lights up the world!!! He has a little sister that annoys him (often), and he definitely lets us know!!Beckett has learned how to say "Go" and we hear it often!! (Usually wanting his sister to go away or to "go" in his gait trainer!!). He has far exceeded so many people's expectations of him, and become the biggest inspiration to our little family. For every "low", there is a "high" and we are SOOOOO blessed to have been chosen to share life with him. So we cherish every day, every minute and second, and continue to live our "normal" lives. For Beckett, this means wrestling with Daddy, going to basketball practice, giving kisses, and "running" with friends...all things that make him, and us, smile from ear to ear. We continue trying new things, pushing for answers, striving for greatness, and modifying life!! (last night we did tball in our stroller and Monday we start Sailing!!) There will always be rough days, but there is ALWAYS a new tomorrow!

Introducing Jamie 3.0

Insert LARGE sigh here.

There are times when I could write only that and publish a post.  A good sigh can describe a rainbow of emotions.  Today is one of those days.  Actually, the last two days would fit the bill.  

Let's backtrack a week.  From June 20-July 1, I completed the Sensory Learning Program at Dr. Fitzgerald and Associates in Cedar Rapids to help my eye shift back to center.  I will write about that more in detail later, but one of the crazy things about this program is that the sensory input you receive matches your body's natural energy level.  For me that meant turning me in to GSD on steroids.  No joke.  So, being me, I decided that I was feeling well enough to start exercising and that I was going to try to start running again or- really crazy-I was going to start the July 5 session of NLXF.  

Last Monday I woke up and went for a run (if that's what you call what I do now).  I turned right out of our driveway and straight up the hill.  Apparently, I was trying to conquer the world because I have NO idea why I thought going up a hill RIGHT AWAY was smart.  I made it two blocks before I HAD to stop.  My left leg felt like it had a 25 pound weight tied to it.  It didn't even feel like I was bending my knee or picking my foot up off the ground.   I had expected that since I dealt with the same thing after my first stroke.  However, this heaviness was on a whole other level.  And my lungs!  I have been out of shape before, but this was different.  I am pretty sure I was swallowing hot lava as I breathed, or more adequately described, gasped.  To top it all off, my mental head space was drowning in negativity.  What in the hell are you thinking?  You cannot do this.  You just had brain surgery.  Not a chance you are doing NLXF in a week.  Why do you always do this to yourself?

I got to the corner and I almost turned around for home.  I looked back and then I looked to where I wanted to go.  I stood there for a moment while I gathered my bearings, my thoughts spinning.  Finally, I said to myself, If you can make it through two strokes and a brain surgery, you can go on a 20 minute run.  Just revamp your goals. Be smart about this.  So I did and I made it.  

I went to therapy that day and the pool after.  I felt amazing.  The next morning, I went to therapy again and ended up having some pretty severe bouts of vertigo during it. I have learned that this is my body's new way of telling me that I have pushed too hard.  I was fuming mad.  Not only did it interrupt my therapy, but it deflated me.  I had finally gotten a little bit of normalcy back just to have it taken away.  

I was forced to take the rest of the week off until therapy was done.  On Saturday morning, I got up and ran again.  This time, instead of running two blocks, walking two blocks, I only walked four blocks the entire time.  I had adapted to my leg and practiced breathing techniques to calm myself.  I know it sounds crazy to have this much improvement in just one run, but adaptability has become the name of the game for me the last two and a half years.  I have become very good at listening to my body and being able to adjust accordingly.

Then came yesterday.  My improvement had left me with a false sense of confidence.   Plus, it was my four month surgeryaversary.  Let's celebrate!  I went to the lake by where we live and set a goal to run around the entire thing--NO WALKING.  I got half way around and couldn't do it anymore.  I had to stop and walk.  As I did, tears began to stream down my face and I continued to cry until I finished.  I was so frustrated with myself mentally and physically.  I was upset that I had "mentally quit"--that I didn't have the toughness to do it.  And physically, well, if I could have unzipped out of my body and found a different one, I probably would have.

I walked a total of ONE block the ENTIRE run and it ruined my spirit for the majority of the day.  I had quit.  My body sucks.  I want to be better NOW.  RIGHT NOW.

But the worst thought.......I AM TIRED OF TRYING SO DAMN HARD.   ALL. THE. TIME.  AT EVERYTHING.  

Oh, that is not a good road to go down mentally.  That thought spiraled in to the I wish's, what if's, if only's, and why's.  And do I tell anyone about it?  Nope.  I keep it in, try to bury it, and then take my frustration about my situation out on everyone around me.  I'm awesome, I know.

Halfway through the day, I pulled up Facebook to check a message and the very first thing on my news feed was this quote from Pat Summit:

"Whatever it is that you desire to do in life, have the courage and the commitment to do it, and to do it to your absolute best."

Ding, ding, ding!  And just like that I came back.  My best looks different than what it was three years ago, 1 year ago, and even two weeks ago.  My best is constantly changing.  As long as I keep making sure that I push myself to whatever my best is at that given moment, than I have won.  I know I have the courage and the commitment to do that.  My damn ego just gets in the way sometimes.  :)

Welcome to today.  I woke up at 4:55, did my eye therapy, and headed to NLXF with my wonderful husband, who gets the brunt of my "stubborn as an oxe" shining personality.  :)  I was greeted by a bunch of warm hugs and happy hellos and I instantly knew I was right at home.  Then, I realized that it was a black Monday sort of workout and I had a moment of doubt- I shouldn't be here.  But, I reminded myself to focus on my best, whatever that was today.  And I did.  I never pushed too hard and I was completely fine with that.  I gave myself grace and what a difference that made.  I completed more than I thought I could, even the entire four minutes of hell, and I sweat through my shirt..... I was in heaven.  I was blissfully happy the entire time.

I think my Facebook post says it all,

Four months ago I had brain surgery. Today, I spent my morning at Next Level Extreme Fitness. NEVER would I have expected to say that and in fact, I can hardly believe that I am. One of these days I am going to wake up from this dream and find myself waiting to head in to surgery. Until then, I am going to send thanks to God that I am able to relish in the soreness that I already feel from the gazillion squats and lunges I just did.

I think what I have really learned is that my strokes and my brain surgery are a part of me.  

They have challenged me. 

They have changed me.

They have made me.  

I'd like to introduce you to Jamie 3.0.  :)

Being a "Sick" Mom

I have never written in depth about how the last two and a half years have affected me as a parent.  Where would I even start?  I could literally write a novel just on this subject alone.  Plus, I started this blog so that our girls would know me.  So, that they would know me in case something were to ever happen to me.

Heavy, I know. But, it is the reality I live in.

Parenting is hard.  All of you who are parents understand this.  All of a sudden you are in charge of this precious little being and absolutely NOTHING can prepare you for it.  There are instantly a million decisions to be made; breast milk or formula, which pediatrician, which (insert baby item here) is safest, how to ween them from the bottle, how to sleep train, how to potty train, how to do EVERYTHING.  And, wow, is there ever mountains and mountains of articles to read or unsolicited advice to be heard!  Seriously, it can make your head spin and make you feel like you are constantly failing.

Then they grow up.  Here come even more decisions and CHALLENGES.  Where should they go to school?  Should I sign them up for (insert sport/activity here) when they are two......okay, I know it doesn't happen this early, but geez, it feels like it.  What ever happened to letting kids be kids?  Sorry, mini rant over.  How do I teach them genuine kindness, understanding, and compassion?  How do I teach them to control their emotions?  How do I teach them to be strong and independent?  The list goes on and on.

And the worry.  Oh, the worry!  About everything that could possibly be imagined.  Are they safe?  Are they getting along well at school?  Have I taught them the difference between right and wrong so that they make smart decisions?  Have I taught them to respect themselves so they aren't negatively influenced?

IT. IS. CONSTANT.  As a parent, my head NEVER turns off.  Not only that, I rarely feel like I have done a good job.  After the girls go to bed at night, I finally sit down, and the first thing I say to myself is, "well, I sucked today."  I could have been more patient, I could have said more I love you's, I could have, I could have, I could have.  I hate that feeling after everything I have been through.  I feel pressure to make sure that I parent perfectly because I understand first hand how fast the blessing to be able to can be taken away from me.  And when I lose my shit (pardon my language, but parents you have all been there), I feel guilt because, I, of all people, should be grateful and laugh at the moments when they drive me bat shit crazy.  I have changed through of all this, yes, but I am still human too.  I can only hear, Mommy!, so many times before it resembles the sound of nails on a chalkboard.

Now, take all of that and add being sick to it.  I have spent a lot of time away from my children, they have visited me in hospitals, participated in therapy, seen the bruises and scars from all of my IV's and shots (their personal favorite-the 6" scar from the middle of my head to the base of my neck), watched me wobble walk, witnessed me fumble tasks with my left hand, and looked in to my crazy eyes more times than I can count.  It is not fair for them.

Want to know what else they have been around a lot?  Hearing me say, "I can't."  We spent a ton of time together, just the five of us, outside this last weekend.  Being outside is still a bit hard for me.  First of all, my vision is incredibly limited as it is.  Like everyone else, I squint when it's bright which takes away even more of my vision.  Then, you add rock, mulch, or uneven grass or cement and I am suddenly in an extreme obstacle course with no sight!  And being near them as they swing is treacherous.  I have very limited depth perception so I have no idea how close I am to them when I am trying to push them.  I may have been knocked back just a few times.  Oh, and don't forget to add my 10 lb. weight restriction which takes away my ability to lift them.  That is not an opportune restriction to have when you are at a park with a 2 year old.

So I say, "I can't."

Mom, can you help me up?  No, I can't.  Mom, can you play catch?  No, I can't.  Mom, can you hold my bike (JJ is learning how to ride without training wheels)?  No, I can't.  I can't, I can't, I can't.  I think I said I can't to them more last weekend than I said I love you.

Big deal, right?  I have restrictions and it's okay that they know that sometimes I just can't do it.  Nope, it's not okay and I'll tell you why.

Today, I was at the park with Linden and Myah.  I asked Linden to try something and what was her response?  You guessed it..... I can't.  It stopped me in my tracks.  I taught her that.  I taught her how to say I can't.  I taught her to quit before she even tried.  High five, Jamie.

Eventually, we moved over to the merry go round.  Linden asked me to sit down so she could push me.  I almost said I can't, because I can't.  Going around in circles like that with bad vision and impaired senses.....DISASTER.  But, instead I said, "I will try."  She hesitated for a moment, like she was shocked by my answer, and then her entire face lit up with excitement.  I sat down and she pushed me.  I lasted a half of a round before I asked her to stop me.  I couldn't do it, but I tried.  It was important for me to show her that.

High five, Jamie.

Smith girls:

I do so many things wrong as a parent.  But, it also my hope that I have done some things right.  Even though the majority of this post outlines the stresses of being a parent, please don't think for a second that I don't love every second of it.  Being your mother is my greatest accomplishment in life.  You all bring a joy and beauty in to my day that I never could have expected.  I love you all dearly.

I have so many dreams and wishes for you.  And today, my most pressing wish is that you will always try.  Trust and believe in yourself enough to give everything a shot, whether you think you can or not.  Have courage and be brave.  After all, you will never know what you are capable of until you try.

You might just surprise yourself.