[WARNING: This is gonna be long. There's just no other way to tell our story!]
November 2015 |
I am Gwen, wife to Scott, mom to Cal (age 21), Claire (forever age 17) & Lola (forever age 13). We also have two whippets named Cash & Henry. Cash just so happens to be Lola's bestie! Search #CashandLola on Instagram for pics of these two (My handle is @gwennieh over there). We live in Kansas, U.S.A. Most people are curious about the girls, and I hope this post will help answer some of your questions.
Obviously since we had Cal first & he is typical, we were unaware that there was any genetic risks associated with having more children. We had a normal sonogram with Claire when I was 19 weeks pregnant. Everything was right on track, and they didn't schedule any further sonograms. She was born at term, and she weighed 6 lb. 12 oz. The first comment I made was, "You forget how tiny their little heads are!" Doctors were rushed into the delivery room to examine our baby girl, whose Apgar scores were 9 and 10. At one point, our OB-GYN said, "There are some problems with Claire..." and in true Gwen fashion, I said, "Well, we'll fix them!" He said, "I'm not sure you can..."
October 15, 2001 ~ Claire Elise |
Our world spiraled out
of control for the next few months as we searched for answers. After many
misdiagnoses, much drama, and fear/worry out the yin-yang, we finally got some
real answers about what was going on. Claire was diagnosed with MSG
(Microcephaly with Simplified Gyral Patterns) by Dr. William Dobyns. He said
she also had spastic quadriplegia cerebral palsy, epilepsy, and CVI (Cortical
Visual Impairment). He basically told us he felt that her condition was likely
genetic with a 25% chance for recurrence. He said he would help us find the
gene(s) responsible so we could go on & have "healthy babies." He
drew blood from Scott, Claire & me, and he told us that we'd need to start
her on medicines to control her high tone/spasticity, reflux, and seizures. He
said it would be a guessing game until we found the right combination, but that
if we did EVERYTHING he said, Claire would likely not live to be one year old.
He said she had FTT (Failure to Thrive), and her body was wasting away. He
urged us to sign a DNR (Do Not Resuscitate) so when she fell ill (likely with
pneumonia, which she would eventually die from), we wouldn't be too emotionally
involved to let her go.
We decided these were shitty odds (our daughter maybe only living to be 1 year old), so we basically did the exact polar opposite of what the doctor suggested, as we didn't want the same end result. We took Claire home, didn't start her on ANY meds (as we'd seen her have seizures just from being given Tylenol and Benadryl -- we knew her little system was *very* sensitive), and we started down a natural medicine path. Time passed, and with each cold or illness, we feared it was the beginning of the end. Each time, my pediatrician reassured me, "Gwen, it's JUST a cold! She'll be fine!" And each time she was. We got through the first year, and we started having more hope. Claire had proved time and again that she wanted to be here.
4 years later, after Dr. Dobyns still had not located any genes responsible for Claire's microcephaly, we decided to have another baby. I know this is confusing to many of you. But no genes had been found. It easily could have been an isolated incidence. In fact, one geneticist told us that we had a 75% chance OR GREATER that all would be fine. We knew that we would be given the child that would perfectly complete our family regardless. I was so careful the whole pregnancy. I didn't dye my hair or paint my nails. I never missed a prenatal vitamin. I ate an organic diet. I didn't run. I didn't bounce. I did everything "right." We just knew all would be OK.
We did serial sonograms through our entire pregnancy with Lola, starting at 6 weeks, and continuing every 4 weeks. Everything was perfectly on track the entire time until 22 weeks gestation. At that visit, Lola's head and body measurements were lagging approximately 2 weeks. The doctor assured us this was still within "normal limits" and told us that we would need to wait 4 weeks to find out if Lola was also affected. That was the longest month of our lives. Upon our return at 26 weeks gestation, we discovered that Lola's head was now 5 weeks behind. Microcephaly was confirmed. We were devastated initially. How on earth could we someday bury TWO children? It was a rough 24 hours. If we knew one thing for sure, it was this -- We already knew how to care for Claire, she brought us infinite joy, and we had learned things from her that we could never have learned had she been born without a disability. We never wanted to go back to the people we were before she arrived. We feared that we took Cal's babyhood/childhood for granted. We could do this. It would be challenging, but there was some reason we were meant to parent TWO profoundly affected children.
Lola was born a month premature weighing 5 lb. 10 oz. Her birth was fast, dramatic, and perfect -- the exact polar opposite of Claire's birth almost 5 years prior. No one mentioned the words "microcephaly" or "special needs" or "cerebral palsy." They all just spoke with love about our beautiful daughter. No neurologists or geneticists were permitted in the room. All of our testing 5 years prior gave us virtually NO answers. Why subject Lola to all that if there was nothing we could do to help her besides the usual therapies and surrounding her with love? We took her home & loved her just as we loved Cal & Claire.
September 25, 2006 ~ Lola & Cal |
The two little girls
who were never supposed to reach age 1 turned 12 and 17 in 2018. They
are the strongest individuals I've ever known.
The gene(s)
responsible for the girls' microcephaly STILL haven't been found, 14+ years
later. (Hence the reason we could not do amniocentesis during Lola's pregnancy,
not that we'd have done anything different even if we knew...) We recently have
toyed with doing Whole Exome Sequencing, but we're not sure our goal for doing
this. Since their microcephaly is autosomal recessive, both the mother and
father have to carry this very rare gene. Somehow, both Scott & I do. Even
if Cal were a carrier, he'd have to marry another carrier in order to pass this
on, according to geneticists. Is it worth our time, TONS of money, and
subjecting the girls to a very stressful blood draw in order to MAYBE get
answers (but possibly get none)? So far, we aren't sure the possible benefits
will outweigh the risks...
Since their births, both girls have been relatively healthy. Both were also given a dwarfism diagnosis, and they remain VERY tiny despite perfect nutrition. Claire is approximately 36" tall and weighs 27 pounds. Lola is approximately 30" tall and weighs 14 pounds. Claire had a g-tube placed at age 3.5 years after she became chronically dehydrated due to her inability to take bottles very well plus getting Rotavirus. This has literally been a lifesaver and a godsend for her. We occasionally use an NG tube with Lola when she is sick, as she is too fragile to go under anesthesia at all. We were told we'd likely lose her during any type of surgery. Lola eats very well by mouth. She drinks bottles and alternates her feedings every 2-3 hours with organic, fresh fruits and veggies which we food process to a smoother consistency for her to eat. She drinks a goat's milk formula which is the ONLY formula her sensitive body can tolerate. Claire is fed a blenderized organic, raw, fresh diet through her g-tube during the day and is given goat's milk formula during the night.
September 30, 2015 |
We use many natural
supplements, essential oils, homeopathics, vitamins, and minerals with both
girls, and they are thriving. They receive regular chiropractic care and have
used craniosacral therapy as well as hydrotherapy and hippotherapy in the past.
They receive services at home to optimize their lives -- PT, OT,
Speech/Technology, Vision Therapy & a teacher, as well! We are hoping that
these therapies will help further the girls' development (which remains around
a newborn level) and also help with their increased tone/cerebral palsy, as
that seems to be one of their main issues. Claire has severe scoliosis, and
Lola has severe kyphosis. Both girls are not candidates for surgery for their
backs or their dislocated hips, due to their extreme sensitivity to anesthesia
and their lack of body fat. However, we have an AMAZING team of therapists who
bring out the best in our girls & who love them like their own. We are so
blessed to be seeing tiny gains with both of them!
People ask all the time about Lola's tiny rubber chicken. Due to both girls' tone, they have trouble holding things in their hands. Their thumbs are tucked inside their fists, and they don't oppose their fingers properly. On a whim, we put this 3" rubber chicken into Lola's hand recently, & she held him all damn day! Our girl doesn't want a baby doll or a teddy bear or a stuffed giraffe. She wants to cuddle a dwarf rubber chicken every day. Somehow, that doesn't surprise me! We call him Bok or sometimes Feta because her palms stink like feta cheese, and consequently, so does her chicken. HA!
December 3, 2015 ~ #boknation #fetaforever |
Lastly, please do not
feel sorry for our family. Many tell me how sad they are for the girls and us.
We want you to know that we are happy, and we love our lives! Our three
children have changed us by being exactly who they are. Is it hard sometimes?
Absolutely. Do I have down days/weeks? Damn right I do. But these sad times never last
for long. I have way too much to be happy about. Every single day with our
girls is a gift. I just pray that we're given lots more TIME with both of them.
I want to make more memories & take lots of pictures & capture all this
love and joy to last me for the rest of my life because my kids & my family
are what strengthens ME.
Thank you for taking the time to learn more about our family. I cannot tell you what your support means to Scott & me. Hugs from all The Hartley Hooligans to you!
Halloween 2017 |
*OCTOBER 2016 UPDATE: We began further genetic testing during the summer of 2016 with hopes that with the increase in technology and the advances in science, we might be able to get answers regarding the girls' condition. We sent bloodwork from all five of us to Christopher A. Walsh Laboratory in Boston to take part in a research study on developmental disorders of the brain. We also visited Children's Mercy Hospital's Genetics Department in Kansas City, Missouri for a clinical evaluation and to begin the process of Whole Exome Sequencing (WES). We were recently notified by Children's Mercy that our daughters now have an official diagnosis! Both girls have a Neuro-Metabolic Disorder known as Asparagine Synthetase Deficiency (affecting the ASNS gene). Both Scott & I are carriers for this gene, and it is autosomal recessive, as expected. This means that we have a 25% chance of this occurring with each pregnancy. It is not more likely to affect our girls, and the fact that our son is neurotypical and the girls are not is simply chance. We are in the process of testing Cal's blood to see if he is a carrier, as he has a 2/3 chance of that occurring. Likely this will not be an issue for him in his life, as this genetic defect is extremely rare. I posted more about our findings in THIS POST, and I hope to update more about this diagnosis very soon. We are so very grateful to Dr. Amudhavalli, Laura & the entire Genetics Staff at CMH for their time and efforts to help us finally get answers, after 15+ years of having none. We also want to thank Jennifer and everyone at Walsh Labs for their continued research on our girls' condition. We could not have asked for a better team to work with across the board.
*DECEMBER 17, 2018 UPDATE:
July 25, 2001 ~ December 17, 2018
April 28, 2006 ~ October 12, 2019
Early this morning, with a full moon shining in our PICU window, our sweet Lola ascended into the Heavens to be reunited with her big sister, Claire. Her body was overcome by back-to-back viruses as well as other medical complications that she was not able to overcome. She fought with everything in her to stay. She is quite literally the strongest human being we have ever known. She could have left so many times over the course of her 13.5 years, and every single time, she chose to stay. We are completely devastated. She was an absolute warrior till her last breath and final heartbeat. We are going to miss her so incredibly much.
*DECEMBER 17, 2018 UPDATE:
Claire Elise Hartley
July 25, 2001 ~ December 17, 2018
We are absolutely devastated to have lost our sweet Claire. Her body systems shut down, possibly due to a catastrophic virus. Abby Dawn Maclaskey, our local EMS and police worked lovingly and thoroughly to try to save her life. Despite their attempts, we were not able to restart her heart. Her body had fulfilled its mission on Earth, and Claire earned her angel wings. We are completely shattered, in total disbelief, and heartbroken beyond comprehension. We know how many lives she impacted in her short 17 years, and we are so proud of her for living and loving life to its fullest. We selfishly wanted more time, as life is just not the same without her here. We will be taking a social media break until we feel we are able to sort through the magnitude of this tremendous loss. Thank you for loving our girl all these years and for never forgetting how important her precious life was. We love you all.
In lieu of flowers (as Lola is allergic to many flowers), memorials can be made to: Night To Shine in c/o the Tim Tebow Foundation and Make a Wish Foundation of Kansas. Share condolences at the following link: Claire's obituary.
*OCTOBER 12, 2019 UPDATE:
Lola Grace Hartley
April 28, 2006 ~ October 12, 2019
Early this morning, with a full moon shining in our PICU window, our sweet Lola ascended into the Heavens to be reunited with her big sister, Claire. Her body was overcome by back-to-back viruses as well as other medical complications that she was not able to overcome. She fought with everything in her to stay. She is quite literally the strongest human being we have ever known. She could have left so many times over the course of her 13.5 years, and every single time, she chose to stay. We are completely devastated. She was an absolute warrior till her last breath and final heartbeat. We are going to miss her so incredibly much.
We are in complete disbelief and shock that we are here again just shy of 10 months after losing Claire. Lola has struggled so much more since Claire passed in December. She has required oxygen, constant monitoring, and extra care, and we fully believe this is a result of missing her big sister. We have no idea how to chart a course through this tremendous grief & PTSD we are feeling. It just seems utterly impossible at this time.
We want to thank our night nurses, babysitters, therapists, teachers, family & friends for always providing such wonderful care and love for Mrs. Pockey. You are and will always be family to us, and we love you so very much. We also would like to thank the Wesley Children’s Hospital PICU team of doctors, nurses, respiratory therapists & staff for believing in our girl and for treating her with such love and respect. We love all of you.
In lieu of flowers, memorials can be made to the Ronald McDonald House, 551 N Hillside St Suite 100, Wichita, KS 67214. We are ever so grateful to them for allowing us to stay there so we could be close to Lola during her hospital stays. Share condolences at the following link: Lola's obituary.
75 comments:
You have a beautiful family! Thank you for sharing your story. :)
Amazing, thank you for sharing your journey with us..I cannot express how much you've inspired me. I have 3 kids, one 8 year old girl w aspergers, one 7 year old hellion uh I mean boy w adhd and a 3 yr old who well jeez who knows what his deal is ;) but there are times I feel sorry for myself ..poverty, s bad relationship w father etc etc and I tend to sit on my pity pot. But i need to remember that as hard as it seems there's other people enduring a much tougher journey , your one amazing mama and I pray your future is filled w happy memories and lotsa love!!
You just might be the coolest mom i have ever met
Thank you for sharing your fantastic family with us. You mentioned that you are toying with the idea of WES (Whole Exome Sequencing), but "aren't sure what the purpose would be." While I don't think that anyone should have genetic testing who doesn't want it, I can think of three reasons why you might consider WES. One is to end the diagnostic odyssey and have certainty as to why your lovely daughters present the way they do. The other is to connect with other families who have the same genetic changes as your daughters (you may or may not have an interest in doing this) to compare notes, trade stories/advice/etc. A third is that having WES would be a contribution to science, because the more we know about which genes perform what functions, the closer we are to finding treatments and/or therapies for kids with a variety of conditions. Your daughters may not see the fruits of this labor during their lifetimes, but one never knows. Just some food for thought. Thank you again for being so open!
Thank you so much for not only sharing your story here on your blog or also through the media interviews. Much love to your family!
Wowzers!!!! You guys are really quite something!!! What an awesome story and what an awesome family!!! I will pray for your children's health to continue :) I have 3 beautiful children myself, none of them suffer from any disabilities. The pure joy that these beautiful children give us can't be put into words! My heart is so full after reading your families story, truly amazing!!!
Of course here in Canada we are asked if we would like an amniocentesis, I say why risk my pregnancy, I would continue on with my pregnancy even if the results were less than stellar. That's my baby, a life that deserves to be here, no matter what. You are SO right, we are given what completes us!!!! You have such a beautiful family and you are such a gracious mother!!!!!! Congratualtions!! You're living your lives :)
Gwen: thanks for your wonderful interview on The World today. You have and will give a lot of hope to many. God bless you and yours.
I heard your interview today also and was inspired to 'meet' the girls and the rest of the family via the blog. You have ALREADY helped some of the new parents out there by doing that interview and by being willing to share your journey(s). Keep up the beautiful work Mama. What a special place in this world you've been given. The girls are beautiful.
You and your whole fam damily rocks <3
You are all amazing! Thanks for sharing your story <3
You have a beautiful family.
You seem to be an amazing mom, and an inspiration to many! Thanks for sharing your beautiful family and story!
Your family is amazing. One question. Your son does not have the condition. Wouldn't the test be beneficial when he starts a family?
Caught your interview on NPR, had to check things out. Thanks a bunch!
Your writing style and sense of humor KILL me! I am laughing my butt off---
You are some kinda woman!!
Love and hugs!
Tamera
Dallas
you're an amazing woman and mother. I have a child with special needs as well, she has kernicterus a form of brain damage. we struggle with many different things with our beautiful lil girl and can relate to how difficult it can get. But these kid's are wonderful my daughter is one of the strongest little girls I know, she amazes me every single day. I wish nothing but the best for you and your family. you're girls are adorable.
You are a rockstar and those little angel girls are so lucky to have you as a Mama. As a mama to a gorgeous little boy and expecting my second, I am in awe of you and so inspired!! Thank you for sharing your story. It is a gift to all of us.
OMG, I am in tears, Gwen. I fell in love with you, your beautiful girls and your whole family, including the dogs. You guys are such an inspiration! I have three kids myself but I have never entertained the notion of “normal” regarding kids in general. My youngest was diagnosed with severe depression and dropped out of school when he was 14. He is fine now but I tell you: it breaks your heart when your child mostly wants to die even though there is nothing really “wrong" in him or in his life.
Since his recovery I have been able to celebrate life in all its glory and diversity.
Lots of love all the way from Finland!
Kati
Hello, your family's story appeared in our city's daily newspaper, the Sydney Morning Herald (Australia). I will be following your blog.
What a beautifully written story.
inspiring family - warms the heart xo
That picture of your son and Claire gave me chills. The love you all have for each other is beyond words. God BLESS!
Not an easy life, but you five have been showing God's love and how you pass on God's loves to others.
May God strengthen you and your family. I also post some of your story on my own blog and share to others.
http://crazydiamondstar.blogspot.com/2016/02/zika-virus-hartley-family.html
They will be directed to your blog to support you!
GOD BLESS!
I caught you on the BBC the other day. What a beautiful story?! And, a beautiful family. Peace and joy radiated the airwaves. It was such a refreshing end to the day. Thank you so much for sharing the gift you have in your girls, your husband, and son. And, for blessing us with your story!
I began searching for more information about the Zika virus and eventually found myself on your blog. It is so nice to get an idea how a family faced with special needs like this copes, defies the odds, and lives the joy of each day! So, thank you for keeping a blog to share with the world. My very favorite picture is the one of your son as he was younger, cradling his little tiny sister in sleep... absolutely beautiful! You all personify a level of love that few truly know.
such an inspiration :) really amazed on how you and Scott managed to turn 'the hard times' to pure joy that people can see and be inspired with. God surely has beautiful plans for your family. Prayed for your family and thanks for being a good reminder to me. I surely often took things for granted. hope you and your lovely family are doing fine xx <3
I have a 38 yr old son with microcephaly and also dwarfism plus many other diagnoses. It has been a long journey. His father bailed out when Stephen (pronounced Stefan) was 2 so it's been a rough road. I've been in a bad way emotionally especially since my mother died 6 yrs ago. Hearing your story has given me reminder I'm not alone. Thank you
What a beautiful story and beautiful family. You are truly blessed and this story made us feel more humbled by our own experience as parents too.
Hi Gwen, You're story is really touching, thank you for sharing. You are truly inspirational.
Your courage to listen to your instincts and not to the doctors. Your positive outlook and gratitude is truly beautiful. You are a wonderful person and keep doing what you are doing : ) big hug and love from a NZ mama.
Thanks so much for telling us about your family, and educating people about microcephaly. Your love for your three children comes through loud and clear!
You're a brave and loving family. Your story is so moving and filled with faith and love. I'm so proud of your achievements in raising the three children. Your positive outlook on life is an inspiration. What else can I complain about? Thanks for sharing your heart!
Isn't there a research grant available somewhere that will pay for the girls to have WES?
If I may offer an outsider's opinion on the idea of doing Whole Exome Sequencing, perhaps something will show up which will help future children born with this condition, or will offer insight on it that will help give other families of newborns with this condition a much better prognosis. Even if the only thing doctors conclude is that it isn't as deadly or devastating as they thought, would it be worth it to you to spare other parents the heartache, anguish, and pure agony you felt when you were told your daughters were unlikely to live to see their first birthdays? I don't mean this as a, "This is what I think you should do" statement or anything. I'm simply trying to give you more to contemplate when discussing the risks versus the benefits.
You have a beautiful family. Words cannot express the utter joy I feel in learning that your daughters are both not only still with you, but thriving as well. From a 17-year-old girl living in New England, I wish you all the very best, and hope to continue to receive updates on how the girls continue to defy the odds.
You are one of the most amazing people I have ever encountered. My local paper ran a story about you and your family and I am in awe of your strength and kindness. Thank you for this blog. Whenever I start feeling overwhelmed and depressed at life, I will think of you. Thank you for being here.
I just wanted to say something...you said that this entry in your blog was going to be long. Actually, it wasn't long enough. It could have been 10 times longer and I would have enjoyed reading the whole thing! You are speaking from the heart and that in and of itself is so refreshing and heart warming! I know they say that God only gives you what you can handle and he knew you were the only parents that could love and take care of three such beautiful children! Congrats!!!
Thank you for sharing your story. You have a beautiful family... can't wait to catch up on the blog. I hope you find some backup chickens. I'll keep an eye out. #searchforbok
Good Morning! I thank you for sharing your lives in such a beautiful and encouraging way! I had emailed you a few months ago to seek help regarding feeding options and scoliosis/kyphosis decisions. My 15 yr old daughter is a lot like Claire and Lola. If you have time can you email me at kandpjordan@gmail.com? Thank you ❤️.
Thanks for doing what you do and for writing this blog. The planet needs to see that having a child with microcephaly isn't the end of the world and people need to STOP convincing women in Puerto Rico to abort their zika babies. Disabilities happen. We need to sack up and roll with it. And you are a great example of said sacking up.
Thank you for sharing your story. My IG account recommended that I follow you & as soon as I saw your photo of the girls, I was immediately taken back to memories of caring for a brother & sister in PPCD with the exact same diagnoses. I loved those two & you're right, every small gain is a victory and celebration. Sweet memories have come back to me & 10 years later I still wonder how they're doing. Keep up the good, tough, best work, mama! You're awesome & a light in sharing the gift of your kids!
You had me at "shitting myself."
Also, I feel you on the Feta. We refer to our 4.5 month old (1.5 mos adjusted) as "Uncle Fester," in honor of the festering neck cheeses produced in his chin and neck rolls.
You have giant, sparkly, lady balls and you rule. Keep it up.
Happy 15th Birthday to Claire Elise!
I recently stumbled on your Instagram page. Reading this has me crying tears of joy for you. All any mother wants is for their kids to be happy and as healthy as possible. I can't imagine being told my daughters would only live to 1 year old. What a testament to God and to you as a mother for raising three amazing children! I'm sure you have hard days, but your positive attitude and joy make parenting so much better, especially for the kids. Keep enjoying your sweet blessings!!
You have a BEAUTIFUL family!!!! Love seeing your posts and photos on Facebook & IG too. God bless you always!
Rhonda & family
HAPPY BIRTHDAY TO BEAUTIFUL CLAIRE DOLL!!!!
WOW! what an amazing story, thank you for sharing it. I think you are all are so amazing. The girls are beautiful.
I watched your story on Nightline last night. I love that you are so positive and have a sense of humor, regardless of your family's situation. You have a beautiful family, and I wish you, your husband, and Cal many more years with Claire and Lola. I'm so glad to hear they are thriving due to unconditional love and holistic treatments!
So special. Heartrending! Heartwarming!
"The LORD bless thee, and keep thee." Nu 6:24
Hi there, thank you for your amazing story. I found your approach and your knowledge and your unlimited love truly inspiring. You have a beautiful family and let me tell you, they are so very blessed to have you in it. Your attitude is contagious, thank you for sharing not only your story but also your knowledge. I have been educated thanks to you. I will be following you. xx
Beautiful girls! They are a wonderful blessing. I do have a question, you said the had dislocated hips. Does that cause them pain?
Thank you for sharing your family story. Lola and Claire are beautiful. I know they don't know me, but please tell them that Jenn from Georgia thinks that they are amazing! We have a 7 year old son with Autism, and while it is a different disability than your girls have, I found myself relating to so much of what you wrote in this post. We feel incredibly blessed to have our son in our lives, exactly as he is. When we are in public, people stare because he hand flaps and makes odd noises. I always do my best to start a conversation with those people, and explain why he is behaving that way. When they offer sympathy, I quickly correct them, and tell them how amazing he is and how much he has changed us as parents, and made us better people. Because of him, we view the world and people differently than we once did. He has made our lives more full, more rich. Our three daughters feel the same way. In fact, our 18 year old daughter recently wrote an essay for a college application. The assigned topic was to write about an event or individual that had such an impact on her life, that she is whom she is today, because of that/them. She wrote about our son. She wrote how other families take tiny milestones for granted...often, not even realizing the new action or behavior is actually a milestone in the first place. But in our home they are huge celebrations, that are often accompanied with tears of joy flowing down all of our cheeks. Just like you, we have tough days or even tough weeks. But, like your family, we love our life and wouldn't change it for anything! I love how you tell your girls that they are changing the world! While I only discovered your blog today, I have also said the same thing to our son. In fact, this past Christmas I found a shirt for him at a department store that said, "I can change the world". It was made in a way that would not bother his sensory problems, so I bought it in two sizes, and would have gotten other sizes if they had them in stock. Life is sweeter now....sweeter than I ever imagined it could be. Funny how it takes a tiny baby to teach us adults just how deep and fulfilling life and love can be. God bless you all, and thank you again.
What a lovely and brave family, i hope yours hapiness Never end.
Love from belgium
What a beautiful family. Thank you for your positive attitude and example that you set. Love and blessings sent your way ❤️
What an amazing mother and human being you are for taking the time and energy to share this. And to feel through your story this amazing energy of hope. Sending you and ur family more of the best of vibes. ��
Wish you to spend many hours together with your great family! Your story is fantastic, bless all of you.
Love from Russia
You are so brave.
In this days I see so many unhappy people, broken marriages, etc.
Bit you have a beautiful family, loyal husband and happy kids.
You are and example to all us.
Amazing story... Such a rock solid fam! Have you tried copaiba DōTERRA essential oil? It's working wonders for relaxing muscles. Take care xx
@Kat -- Yep! We have been using YL oils for years with our girls. GOOD STUFF! <3
Hi Gwen- it's been a year or so since I last contacted you about my daughter Anna and our stories having similarities with your family. Since we last were in touch- Anna has had a kidney removed (due to being compressed by her scoliosis). We finally changed out Anna's Mickey button to a peg tube as the "stem" and balloon of the Mickey were rubbing the back of her stomach (which was somewhat being pressed on by Anna's scoliosis also). And lastly, Anna had scoliosis surgery a month ago.
I'm writing because I know your sweet peas have scoliosis and, I believe Claire has a Mickey. The best decision we made was to switch to the peg tube. Anna is so much more comfortable. The peg tube only has a small disc that holds it in place inside the stomach. I don't even know if Claire is having pain or discomfort from the Mickey button. Unfortunately, it does require being under anesthesia for a few mins. But I've thought of her and wondered due to her small and thin frame, like Anna's.
Well, I pray your sweeties are doing wonderfully. We have been through so many emotions with the procedures and surgery, but relief is setting in due to Anna's healing after the major scoliosis surgery. She had a magnetic rod placed that will be gradually lengthened over time with in office visits (no further surgeries required.) I'm amazed what her tiny 34 lb 17 year old body has handled. Actually, Anna's not 17 for another two weeks!
Kathy
@Anna's Mom -- I am so glad she is doing so well! Did she recover from the scoliosis surgery OK? I know that can be rough! Thanks for reaching out about the PEG tube. We cannot put the girls under anesthesia at all, so that's kind of out for us. We're doing pretty well with the MIC-KEY button at this time. Hope Anna had a happy 17th birthday! HOW EXCITING!!!!!! HUGS to you guys & hope for continued good health for your sweet little lady! xoxoxo
You are amazing! God bless you and your beautiful family. Thank you for sharing your journey. Xoxo
Thank you for sharing. You and your family is very inspiring. My grandson (22 mths old) has microcephaly and my husband and I are raising him. He is my heart.
Mikrosefali ile doğan erkek kardeşim şu an 31 yaşında ve ailemizin gözbebeği çok mutlu bir insan...Onun adına Claire ve size yürekten selamlar gönderiyorum. İyiki varlar iyiki bizi seçtiler...Birlikte sağlıklı nice yıllarımız olsun...Türkiye'den sevgi ve selaklar <3 ♡
First off ur the best!!! Strongest woman I've ever heard of. U and your family will forever be in my heart and prayers. I can't even imagine what ur going through. Praying for you love.
I was brought here by your random act of kindness in Breckenridge, CO. Rest assured the tradition will be carried on. Such a beautiful story, and while wrought with hardship, it is truly inspirational. Your kindness is extremely admirable. Thank you and safe journeys on spaceship earth.
You have my deepest and most sincere condolences. Claire and Lola were beautiful.I loved looking at your You Tube videos. I will keep you and your husband and son in my thoughts and prayers. Sheri Heffner Mount Holly North Carolina
You have my deepest and most sincere condolences. I loved seeing Claire and Lola on your You Tube channel. You and your husband and son will be in my thoughts and prayers. Sheri Heffner Mount Holly North Carolina.
Itu adalah kisah yang penuh inspirasi dan juga mengagumkan buat saya. Terimakasih sudah berbagi..kalian sugguh luar biasa
What a great family and what great Parentship&Love you guys hold!
You have my tears and my deepest condolences to these two little angels,
little Claire and little Lola. May them rest in peace.
Life is hard and at least we tried our best.
I'm very touched and felt some kind of human love seeing your video.
Your souls are tough while gentle, brighter than diamond.
God bless you all. Thank you.
Respect from China.
Namah shivay
With the grace of Lord Shiva and all the humbleness within, all my unconditional love and support to your amazing wonderful family, your daughters presented the world with hope and it stays within our hearts ever since...
Thank you so much for sharing and caring for those beautiful souls...
You're really wonderful,
Much love from India🙏
So sorry to hear of Lola and Claire's passing. They had such great parents and you did a wonderful job in raising them.
Hi I am from India. I read your story. Your children are the most strongest in the planet for fighting such an endless ordeal. And you as parents are out of the world, for keeping up such high spirits in a world surrounded by negativity.Special thanks to Cal for helping his sisters endure this maddening struggle. Much love and prayers to all of you.
Thanks
Your children's amazing I like your children so much
You are very powerful mum
I found them beautiful. Despites all. I admire your courage AND love. Because others may have abandoned both girls. You DID not, you decided to fight against ALL odds as I would have done. AND your girls were your love teachers as by coming here that way they gave you te chance If practicing love AND compassion 24/7. AND now their are shurely with you like angels do.
Hi there Gwen! I was watching SBSK on YouTube, as I’ve done long ago, but came across your video again with Chris and Googled your story because I live here too. Your story was simply AMAZING! Unconditional love, is the all time BEST KIND OF LOVE to have and to give! This is how your family loved the girls, and how the girls loved you!! I’m so incredibly sorry for your losses, I can’t fathom the pain that you, your hubs and son have been through, and still go through today after losing Claire and Lola. May God be with all of you - always, until together as one someday! Much love from Wichita!! ❤️Heidi Provenzano
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