I have a daughter and she is nonverbal. It is one of the most difficult portions of my life. When the tears fall it becomes a guessing game. When we miss the mark of the needs the tears become screams. The frustration that mounts for everyone is intense. That screaming can last for what feels like an eternity. What ends it? Her resignation. She has no choice but to quit. Nobody is answering her need. Because we don't even know what it is.
Imagine all of your needs every single day and now imagine that you can never, not even once, tell one single person what you need. What a horrifying thing. Those dreams where you are being chased and you are scared and you try to scream for help but nothing comes out of your throat? That is her world. And we, as her parents, watch on in sheer pain and frustration. Just sign it!!! Just try to say something. Anything.
And she does. Every single day this brave soul yells out, makes sounds, tries. Not a single day goes by when she doesn't try. And her trying? It shatters me. I am her Mama after all and mamas makes things better. Don't we? Is there anything else that better describes what we do? We kiss bruises and skinned knees. We are the makers of magic and all wounds are healed by our touch.
But Me? I.can't.fix.this.
I can't wipe away this pain for her. And the sheer terror I face every day at the thought that she can't tell me what is wrong, who hurt her, what makes her happy and that I will get it wrong is something that breaks away pieces of me every single day.
Am I failing? No. I am not.
Is she failing? No. Never.
It is what it is.
But you need to know how this hurts. There are people in your life who are going through this never ending grief. And they have learned how to blend in. They know how to disappear when they can't blend in and after a few times you stop noticing their absence. But they don't. They wear the guilt of escaping on their shoulders. The isolation adds to their pain. But they simply cannot take one more raised eyebrow from a stranger. Every day they are at the brink of breaking. So give them grace.
Imagine sending your child to school or church and hoping and praying that nothing goes wrong. Imagine the stress of knowing that if something is wrong you, as the mom, will never know it. Wrongs could be committed at any moment and you won't know. The immense stress of wondering if you have chosen the right people to trust is never ending. If you are not with your child every waking minute, then that stress is with you.
We parents of children who are nonverbal? We have every single one of us had this happen. Someone was cruel to our child. Someone was unfeeling. Someone committed a serious wrong to our child. And we caught it. Not because our child told us, but because we are these hovering parents because we must be. And knowing that we caught it strikes terror in our souls just at the moment we begin to relax. There is no relaxing. Not for us. Not now, not ever.
And then you return home and snuggle your child and pull them close and tell them you love them. And you know you will never hear those words. And while they will snuggle you back you also know that time is precious and even in the middle of that loving moment the groaning may begin. Maybe you hugged too hard? Maybe they are uncomfortable? And it begins yet again.
You start guessing and you start getting it wrong. And at the end of the day everyone is hoping that tomorrow will be the day. Please let tomorrow be the day a grunt becomes a vowel. Let the groan become a word. Let the slapping become a sign.
And it doesn't. Because this is permanent. It isn't going to go away. This is permanent.
It is a cycle. But it is permanent.
And she never quits. This brave one? She owns me heart and soul.
So we try again. We get up and face the day. We encourage the yelling. Speak to us! Try again!! We smile with the laughter. We cringe with the grimace and hold out for that elusive hope. We learn that communication is more than words. And we learn to grant ourselves and those around us grace. And we learn how to fight better and smarter. We learn to change the laws, change the world. We learn to stand against discrimination. And above all we know that love takes many forms. Love requires no words. It is an intangible, nonverbal force.
And intangible, nonverbal?
That's our playground, ya'll. We own this.
We've got this.
The Drs that that choose to take of children are the kindest of Drs. And here is why. My 9 year old daughter Shay had a major surgery on February 23 2016. Dr Tibesar and Dr Sampson. Shay had to wear this metal distractor for 3 months. During her post op visits Dr Sampson mentioned about doing a distractor (halo) for her American girl doll. Well on the next visit Shay brought her new American girl doll that looks like her for him to do the halo. He took her bend new doll and began creating a halo for his new "patient". Dr Sampson went way above and beyond to get this accomplished. He contacted the company who makes halos and they did a 3-D model and made a halo for the doll. Well one night Dr Sampson called me and said the halo was there but it was plastic so he would have to go out and get purple and silver paint and paint it. Then he ran into another technical difficulty the bolts were too short. So he went to the hardware store and got some bolts. Thank you so much Dr Sampson you are truly a hero in our eyes both as a surgeon and a person.
Jameson was born in January of 2012 with Pfeiffer syndrome. We had no idea about craniosynostosis or Pfeiffer syndrome when he was born. Pfeiffer syndrome and craniosynostosis are almost always random genetic mutations, where there was nothing that caused it to happen, it just happened. We were shocked and in awe of our new addition. In the early months it was his strength and resiliency that guided us through. We quickly learned about craniosynostosis, the premature fusion of his skull bones, and Pfeiffer syndrome, one of many rare syndromes associated with craniosynostosis.
There are many health conditions that are associated with Pfeiffer syndrome, that affect nearly every part of their body. Other bones may also be fused in addition to their cranial sutures. Children with Pfeiffer syndrome are monitored for increased intracranial pressure, the development of chiari malformations, hearing loss, problems with their vision, dental issues, patent airway, and digestion complications, just to name a few. Many children with Pfeiffer syndrome are in physical, occupational, and speech therapy to help them reach milestones. Each child with Pfeiffer syndrome is unique with their development, but they can also share many of the same experiences. Children born with Pfeiffer syndrome with undergo multiple surgeries growing up.
In Jameson case, he was born with both of his coronal sutures fused, he also has fusion on three of his fingers on both hands (his PIP joints), the tell-tale Pfeiffer’s thumb that deviates outward, webbing in his toes, and mild-moderate hearing loss. The goal with our medical interventions have been to monitor Jameson’s growth and development, only intervening medically when necessary.
Jameson underwent his first cranial vault reconstruction and frontal orbital advancement when he was 11 months old, and his second when he was 2 years old. Jameson has had four sets of tubes placed in his ears, and currently wears hearing aids. He has had his tonsils and adenoids removed and suffers from severe sleep apnea. That surgery did not provide the improvement we had hoped, and the next step for Jameson is to get a tracheostomy – a tube placed in his throat to bypass his upper airway so he gets the oxygen he needs while he sleeps. Jameson will also need more surgeries in his future to expand his skull and mid-face. The biggest surgery for him will be a mid-face distraction that will pull his facial bones forward.
About 6 months ago we found out that a photo of Jameson from my blog was taken and turned into a cruel meme, making fun of Jameson’s appearance. Over the years we have dealt with the whispers stares when we’re out in public. We have learned how to approach these situations, and have become comfortable talking to others about Jameson, Pfeiffer syndrome, and that he is just like any other kid on the inside. Jameson is a fun-loving little boy, who loves causing trouble! He is truly a joy to be around, and brings a smile to everyone’s face. We understand that sometimes people may not quite know what to say or do when they notice him and are curious, so we try to break the ice, because once you get to know him you realize that he is just like every other little boy. But, we weren’t prepared for a cruel meme of our son to be shared 100,000’s of times on various social media sites. We have been doing our best to remove each one we see on social media, but this experience has inspired us to do more and reach out to the world in hopes of raising awareness and education about Pfeiffer syndrome and craniosynostosis.
The proceeds of this shirt will go to Jameson’s Journey, a non-profit who’s vision is to share life’s journey and bestow a brighter future for children with craniofacial differences; and mission to serve as a source of strength and support for families affected by craniofacial differences, provide escape and respite from caring for medically complex warriors.
It’s such a strange, bizarre and surreal world, life… We are born innocent and with out any choice. Some of us more fortunate than others. The last 2 1/2 years has shown me more than I could of ever possibly imagined in so many ways. I was told my most horrible circumstances would also teach me the most unique and life altering things. I have learnt: 1. Life is only what YOU make it. People will walk in and out but you remain your own best friend. 2. Your children will be your biggest headache yet your biggest support and most trusting little lives you will ever have. 3. Relationships are worth the pain and heartache until you have nothing left to give but your soul, mine belongs to god. 4. Everyday will bring at least one special moment. But it will not poke you in the eye, you have to look deeper to find it. This has taught me to stay alert for that one special moment. 5. Be grateful for being alive, some people don’t get that opportunity as long as they want and wish for. 6. Good things come to good people, don’t judge others. Look in your own backyard we are only human, better humans treat people with equality and respect. 7. When people do cruel heartless things to you, smile and wave. You don’t need to sink to their level or feel like shit because of their own paranoid problems. 8. Be happy in your own skin, noone is perfect. Beauty comes from your personality and your own acceptance. 9. Take time to breathe, if things are tough, remind yourself there is always someone doing it tougher. 10. Love is more powerful than any material possession. It’s earnt with respect and kept with trust. Lost with ignorance. Spencer reminds me everyday how fragile life is. I watch him in the cold hours of the night struggling to breath, to sleep….to dream. Yet he wakes with the most special and heart warming smile that tears my heart to shreds. How can a child so small with so many issues not face the day crying, devour the day whining? No sleep, can’t eat properly, no great weight gain, can’t taste or smell, hearing loss and the future in surgeons hands. But he paces this earth with resilience, courage, an energetic wanting for something new. Each day learns something and is happy to just play and communicate and be a devil. Such a warrior.. Such a passionate and loving kid, for that I stay true to myself and return his smile. Life will not always go as planned, but how can you plan something that will take its own course anyway. You just keep going and hope that at the end of the day the people you love know how you feel and your kids know your there for them regardless. What matters will shine through what doesn’t. Those who will be in your life will push to be, those who don’t become shadows in the street you walk past. Spencer’s condition was something that took a while to completely accept and become used to. It was the most painful experience and those feelings still take up the depths of my heart and lay dormant in my head. But his condition today is something I am so relaxed with. It is what it is. Nothings going to change him, and truthfully I wouldn’t want it too change. He is Spencer Blackhall, a name like my other children, a blood line the same as my other kids, a wacky, whistfull attitude and a personality that will drive him through the most severe surgeries but may also allow him to meet all types of beings… And find love himself one day. I pray every night that he will have a wonderful, adventurous and charismatic life. I pray he will be accepted into this strange and sometimes horrible world. But I pray mostly that he knows how much he is loved by me, his dad, his siblings and by so many others. Just for being himself.
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210. That is the number of days we got to look upon your beautiful face. We are so grateful for the 210 days you gave us. We know you fought so hard for all of them.
In 210 days we learned more about love, beauty, life, and family than in all of the days before combined. That is what you taught us, not the hospital lingo or the mechanical workings of the human heart but love, gratefulness, happiness and pure joy.
We always worry that people will remember you for your illness when it is your radiant joy that set you apart and made you so special.
How lucky we are to be the ones chosen for you and to call you ours. It is a weird journey through grief that you find yourself feeling so lucky and so broken at the same time.
Today you have been gone for 210 days.
Tomorrow you will have been gone longer than you were here. But no matter of time could ever diminish your light.
Like today and everyday since you have been gone we will face each day with a grateful broken heart and look for the beauty and joy you showed us was there.
The day Jada was “born” was a very emotional day for us. As soon as we heard from our worker that the date has been set for our first visit (induction day for birth moms!), we were so giddy with excitement! The first day of visit would be on our first wedding anniversary, so we went on our anniversary date the day before. We went to Niagara Falls and Niagara on the Lake, all throughout the day, we kept on talking about her, about how our life will dramatically change, how we would act when we meet her, what it would be like being a parent and so on. That night, it was impossible for me to sleep! I keep on tossing and turning, asking myself ,”what if she doesn’t like us?!”, “should I hug her?”, “what should we bring her?”, “what would her first reaction be?”, “how do I keep myself from crying?!” and thousands more questions. That morning, we got ready a little too soon and it left us more time to think, to anxiously wait to leave and just making ourselves go crazy! We were truly excited/nervous/happy!
When we first met her, we tried so hard not to cry and scare her, we tried so hard not to smother her with love knowing she did not know us yet, we tried so hard not to stare at her and watch how she does/say things because that’ll probably freak her out. She did not have a clue who we were and thought we were just visitors. She swirled around, babbled, showed us her toys, went through my purse, grabbed our camera, and climbed all over us, touching our faces. She did not have any way to communicate her thoughts and feelings, and I couldn’t explain who we were. I was SO in love, but I knew it would take her time to love us, to understand that we were her mommy and daddy. We spent over an hour with her and we dreaded leaving her. Like moms who had to leave their babies at the hospital for a little while longer, my heart was broken when we had to leave her at the foster home a little while longer. Every visit, we took hundreds of pictures, savoured every moment with her and every time we leave her, we were sad. We counted days, hours, minutes, seconds before we would see her again. All throughout 8 weeks, our bond became stronger, our place in her life became permanent, she slowly started to trust us, care for us, become excited to see us again and finally, she was ready to live with us because it became harder for her to leave us.
On the day we finally brought her home, we were so excited but we knew Jada was a little bit unsure. Why are my bags here? Why are my clothes here? Why are my toys here? Where is the foster family? Who am I here? Who are they to me? What are they saying to me? How do I tell them how I feel? So we did not make any plans for that day except to chill at our home, get comfortable with each other and allow her to get used to her new home. It was on that day that we truly became a family. Yes, she was ours before she even lived with us but on that day, we functioned as a family. We were in one place, together, for better or worse. Forever.
Would you like to read more entries from Rose? To visit her blog click the link below.
During a routine ultrasound while pregnant, it was discovered that our baby’s kidneys were enlarged & covered in cysts. It was thought that our baby would have PKD – Polycystic Kidney disease, usually a genetic disease where fluid-filled cysts cover kidneys. PKD is rare in newborn babies, it usually discovered at a much older stage in life. We were told by doctors that due to very low levels of amniotic fluid during pregnancy that our baby may not survive her first 48-hrs. Amniotic fluid is needed for the baby to develop healthy lungs.
At 37 weeks, Olivia Grace was born. It was instant love. Our beautiful little girl had a mass of golden strawberry blond hair & big dark eyes. We were absolutely heartbroken that Olivia was immediately taken to the neo-intensive care unit & placed on breathing assistance. Olivia was in the beginning stages of kidney failure. The emotionally journey of having a chronically ill child had begun. At 1-month old while in NICU, Olivia’s blood pressure was skyrocketed, her electrolytes were all over the map & she was no longer clearing toxins from her body. Olivia’s kidneys had shut down. Olivia was transferred to the PICU where we were devastated to see our little innocent baby fighting for her life. We were terrified we were going to lose her. Continuous Run Therapy would run for 24 hours a day for over a week to help clear the toxins in her blood. Blood pressure would be monitored every few minutes. Eventually therapy would transition to daily hemodialysis. Step by step Olivia was building strength as fluids were clearing. Therapy was working,
Olivia would need to receive long-term dialysis until she grew big enough to have a kidney transplant.
Over a period of time Mom & Dad were trained by the nephrology nurse to learn peritoneal dialysis. Peritoneal dialysis could be administered at home until she reached the target weight & height for transplant. After 97 days in the hospital, Olivia was discharged. Olivia would be connected to the PD machine for 16 hours each night, eventually moving down to 12 hours each night as she grew bigger.
Each day after treatment, we try to keep Olivia as active as possible to help build up her strength with physiotherapy. Due to Olivia’s long illness & low muscle tone, Olivia is unable to crawl, stand or walk. All of Olivia’s nutrition is by g-tube as she has a severe oral aversion & reflux due to kidney condition.
Olivia's care is a constant balancing act & exhausting. Daily monitoring of blood pressure & weight is needed, along with frequent blood work to ensure electrolyte levels are stable. Olivia has been through several hospital stays, where she has endured countless surgeries, blood transfusions, infusions & serious peritonitis infections. There were times where we were so close to losing her.
Through genetic testing, it was discovered that Olivia has a rare disease caused by a mutation of the NPHP3 gene. The condition is called, ‘Renal Hepatic Pancreatic Dysplasia Syndrome’, (Ivemark’s Syndrome). The condition is so rare that only 8 cases are documented in medical books worldwide. Olivia is a mystery to the medical world. Unfortunately this disease has also affected Olivia’s liver. Olivia has liver cirrhosis, portal hypertension & is also cystic. Eventually Olivia’s liver will go into failure, needing to be transplanted.
Through these past 2 years, Olivia has shown us what an unbelievable fighter she is. Throughout each difficult procedure she is a happy little girl with a huge personality. She is gaining strength each day. Olivia has now reached the stage where medical work up is starting for transplant. At this time, we are unclear whether her transplant will be a dual liver & kidney transplant. Transplant is not a cure, but it can bring her a life of freedom from being connected to a machine for hours each night. She will be facing lifetime of challenges with having chronic kidney disease, other transplants will be needed in her lifetime. We are hopeful that Olivia will build enough strength so she can walk, attend regular school & simply have a simpler life.
Thank-you for following Olivia’s story, we thank everyone who has come into our lives, who have supported Olivia’s fight against this devastating disease. As our direction in life has changed, we bring our passion into bringing awareness to Kidney & Liver Disease and organ donation.
For updates on Olivia:
Information on Becoming A Kidney Donor;
To be tested to become Olivia’s Organ Donor, your bloodtype needs to be B+/- or O+/- & in healthy physical condition. Fill out this form & send it to Toronto General Hospital.
For further kidney information & to help pediatric kidney patients in need, please donate to the Kidney Foundation of Canada in Olivia's honor, ‘Olivia Grace Pullen’;
Canadian Liver Foundation:
For more information on Polycystic Kidney Disease:
Take 2 minutes to register yourself to become an organ donor, you can save up to 8 lives: www.beadonor.ca
Help Build A New Nephrology Clinic at McMaster Children’s Hospital, ‘Caring For Little Kidneys Campaign’:
Information on the Kidney Transplant Program at The Hospital for Sick Children: http://www.sickkids.ca/TRMC/patients-families/Kidney-Transplant-Program/index.html
Let's be honest. I never expected to have a "complex child". Not for one minute while pregnant, did I consider that I may sit in an OR waiting room 14 times in two years praying for my son. You want to know the truth? Right before I went into labour, my worries were that I needed to apply waterproof mascara so that I would look beautiful holding my baby in our first photo and I was upset because I had yet to buy a crib skirt. I only held my Maksim a moment before he was whisked away without explanation - my mascara, although long-lasting slid down my cheeks and the crib skirt didn't matter anymore because it was almost three months before he came home.
Four hours after his birth I did not know my son's weight or length; instead I was told things like he may not survive, that they think he has a rare syndrome, that they have already had to save his life repeatedly and that he is being transferred to McMaster Children's hospital.
Maksim was tested and labeled with Pfeiffer's syndrome. It was a sporadic gene mutation of his FGFR2 growth receptor. Pfeiffer's affects the way the bones in the skull, hands and feet form which can lead to many complications. It is rare and it is frustrating because there are a lot of unknowns. Treatment in Maksim's case (and in most) is almost always surgical. As Maksim continues to grow additional surgeries will be required.
Nothing is what I expected it to be like. The bad parts are bad, I will admit that. I don't want Maksim's suffering to be in vain but you know what... the good parts are truly amazing! All three of us smile through the tears and keep trucking along. We deal with things as they arise and do our best to support each other and give our son the best and happiest life possible.
I am pretty sure I am not a good blogger. This entry is definitely full of missed opportunities to share because I am new at this idea of being open! A main goal of this website is to spread awareness so I guess if I am going to ask others to share, I have to as well. I think the reason I have been so guarded was because so much was happening so quickly and unexpectedly when Maksim was first born. Right or wrong, we felt it was our job to be strong for each other, our family, friends and most of all for our baby. At the time, sharing a lot of information we thought, would have solicited more panic, negativity and "poor Melissa, poor Daniel" The love and support we received is worthy of its own blog entry but unless one was there day in and day out, I think it would have been hard for one to understand the beauty that was also happening within those hospital walls. Despite all the crowds of doctors, wires, tests and surgeries, it was still our family. Daniel and I were new parents, bathing Maks, feeling his soft skin, holding him, adoring him and appreciating his life in ways that perhaps only parents that have experienced fear of loss could relate to. I still can't explain how the hardest, most stressful, painful time of my life, could be so beautiful.
Once finally home and trying to adjust to our new normal, it was and is challenging to go back into that hospital life for appointments and surgeries. We start to believe that it is behind us and that we can focus on regular day to day things and then BAM, another hospital stay. What gets us through? Where and how do we have the strength? Our Faith, our son, each other and everyone that loves Maksim. My son wakes up smiling and it is highly contagious. If you have met him he has probably stolen your heart therefore he and we have a tremendous support group of family, friends and medical staff constantly sending their encouraging words, prayers and love.
Don't get me wrong, I wish with all my heart that my son didn't know this suffering but I do believe that my husband and I have been given a gift. We are able to appreciate and cherish each moment and ability Maksim has; nothing is taken for granted. I am much more open with regards to my son now since I can see clearly that his story is one of resilience not sadness. The happiness and love just radiates off Maksim and it inspires and brings joy to all around him. For one moment, when he was first born, I will admit I thought, "Why me?" Now "Why me" is in the context of "What did I do to deserve the honour of being Maksim's Mama?" I am so proud of my son and I am ready to tell anyone that wants to listen.
Thank you for taking your time to read this.