Guest Post, Author at Cedars Story

A Preemie So Small that Down Syndrome wasn’t Initially Detected

January 30, 2019 by Guest Post 3 Comments

A Preemie So Small Down Syndrome Wasn’t Diagnosed

We’ve all heard of miracle babies, ones that defy all odds. Babies who are born so early that their life hangs in the balance hourly. Here is the story of one such babe, one who was a Preemie so small that Down syndrome was not diagnosed at first…

I never, ever thought it would be me. I thought it was my God-given right to give birth to a perfect baby with no medical complications, have him or her handed to me in the delivery room after going full term and then be able to take my baby home. Wrong on all three counts.

Theo’s undetected Down Syndrome would have killed him if it hadn’t been picked up literally in the nick of time. A standard appointment had alerted my midwife to a small bump and ultimately a baby who was on the verge of surviving inside me, unknown to all of us. Theo is a fighter, a survivor – I think we can all attest to our children being pretty amazing with the set of cards they are born with. We ponder over these unfamiliar cards, worry, perhaps glance at them too much where our mini humans cast them to one side and just get on with it. But my baby was days, if not hours away, from being brain-damaged or still born due to a limited flow in the umbilical cord.

Theo was born the size of a mobile phone with spindly legs and arms at 29 weeks. No one knew about his diagnosis then: he was just a preemie baby. When I say just, all of the NICU experience, with its bleeps, wires and tubes was ENOUGH for any mum. I should have still been pregnant, enjoying my swelling baby, getting everything ready. Instead, I faced a grueling reality of a vulnerable baby surviving day to day. Theo was too preemature for any doctor to detect Down Syndrome and he was lucky enough not to be born with a heart defect so three weeks went by whilst we all thought we had merely months to face any seriousness. Anything different.

One morning I was asked whether my partner, Andy, was coming in that day. No, I said he was at work. Well, I had better get him in as they had some ‘life-changing’ news to tell us about Theo which had come back from a blood test. That was the moment my life shifted its course for good. Never before had I felt the reins ripped out of my hands, slapped across my face then tugged into darkness. An hour later, with Andy by my side, we learned what Trisomy 21 meant.

Down Syndrome

The thing we all get tested for because nobody wants that, right? I was terrified of it. If it was such a concern for the NHS, where we are all recommended to get the test for this undesirable outcome, why would I not be in utter, utter despair that, yes, that is what my son was born with. That is why he had stopped growing inside, that is why he is there in an incubator. In fact, he was lucky to be there at all. I may have aborted my baby if I had known about his DS in utero. I don’t know: I was never in that situation. But if I had, I would have done this through fear, ignorance and outdated perceptions. My life has changed: it has so much more in it. Yes, that might be some unwanted challenges but my life has my darling son in it and for that I am forever grateful. I am now in a community that I never knew existed and it is so inspiring and positive. I have a sensitivity and a patience I never had before

I didn’t want him to have it, I didn’t want my precious newborn to have to deal with it, I didn’t want a special needs adult in my life in 20 years, I didn’t want to face something I didn’t know and had rarely seen. In fact, I had never ever met anyone with DS. (Now, I think that is part of the problem for expectant mothers – the lack of awareness, the lack of the pure, simple reality of living with DS which is why blogs like these are so important). I was devastated which I am sure was compounded by the stress – stress on another level – of having a preemie baby. My early weeks of taking that diagnosis in (which I am sure we can all remember as we see our new reality shift and morph in our hands) was spent with Theo in NICU which I think made it harder. I had to ask permission to hold him, have him handed to me and go through the anxiety every morning of the doctors’ rounds, thinking what else are you going to discover next?

NICU + a DS diagnosis = the worst time of my life. When it should have been the best. I felt utterly cheated and lost.

My initial fears – oh, they are still there but if only my present self and Theo, of course, could take my hand back then and lead me to a window where I could see the many, many hours of blissful motherhood, of discovering Theo and him discovering me. Of making each other laugh and of the endless cuddles. If only I could bottle those moments when my heart is full of a love I never knew could be present in a person. When we are faced with a diagnosis – that’s all we can see. It is hard to look beyond at what is simply in front of us: our baby. New life. New beginnings and the blessed opportunity to nurture a person in this world. I have of course fallen in love with my happy go lucky son, with every atom of his being.

But at 17 months corrected where I am now definitely seeing a yawning delay, I do battle with my fear of his future. There’s a certain take-it-for-grantedness that I think I may have had if I had a typical child. I see it in other parents: yes, of course he or she is pointing. Walking? Oh, I can’t stop him/her. I would die to see Theo do that so easily. I know it will come but it breaks my heart a little that these things, and many, many more after them will come harder to my son. I do wish I could change that. Andy and I fear about his independence and whether he will find what we have. We met at a party in Amsterdam: standard. But our standard is not going to be Theo’s standard. That’s the bit I struggle with and will always, I suspect.

As for us as parents and partners, we are stronger – there is no doubt of that – but we know we will have challenges. Right now, we are loving being parents of a delightful, little boy. We are cutting our parenting teeth on Theo as he is shaping us into the parents we are as much as we are shaping him. In fact, he is pathing the way for his future siblings and they will (hopefully) be grateful to him as he has made us utterly grateful and, unbelievably, pretty chillled out. Theo is such an easy, little boy.

Andy is 13 years younger than me. I gave birth at 39 when Andy was 26. I think it was difficult for me to accept that it was my older eggs that had resulted in Theo’s diagnosis. Andy did not think like that all. He cried, of course. I always wondered if he felt trapped with an older woman and now a disabled baby but he never showed it. We were in this together and he displayed an emotional maturity of the like I could not have mustered at 26! We were shocked and we were very, very sad. I think feeling the weight of the diagnosis together tested our relationship, which was only a year and a half old at the time. But he is very practical and just got on with it. ‘We have each other’ I remember him saying. I remember thinking ‘but this is going to change things for us, it is going to be difficult, it won’t be what we wanted’. I wrangled over it – I still do – he put one foot in front of the other and took it day by day. To be fair, it is me who does a good deal of the child care and the hospital appointments – goodness, there are so many – where I sit, clenching everything with the fear of something else going wrong. But Andy is simply Daddy.

He doesn’t weep over the 15 year-old Theo we haven’t met yet. The young adult who I am frightened will be bullied , will be excluded from parties as he’s the special needs kid, the boy who might very well turn round and ask why him. Likewise, he doesn’t mull over the past or think about those early months. He is just here in the present. I asked him the other day if he could take Theo’s DS away from him, would he? He said he wouldn’t and I sighed a relief. Theo would not be Theo and his little burgeoning soul fills our lives with light.

Theo is 17 months corrected and a happy resident of North London. He attends nursery four days a week where he has becoming quite the artist

Claire, Theo’s mum, is a trained actress and presenter and intends to use her skills in communication and public speaking to raise awareness of Down Syndrome and the joy Theo has brought to her and her partner’s lives. Follow along on Instagram @mumonadifferentpath

Hirschsprung Disease- A Parent’s Thoughts

January 29, 2019 by Guest Post Leave a Comment

Hirschsprung disease: A parent’s perspective

Who better to share a perspective on Hirschprung’s disease than a parent who has dealt with it herself? Meet Smriti…

Before my son was born, I had no idea that such a thing even existed. I had heard of Down Syndrome, of course, (being a PT, it is part of the training) but Hirschsprung’s disease was something totally new.

For those out there just like me, let me give you a quick intro to it.

Hirschsprung disease is a congenital condition that affects the large intestine also known as colon which causes problems with passing stoosl. This condition is a result of missing nerve cells in the muscles of the baby’s colon which can be confirmed by performing a rectal biopsy.

In other words, it’s a condition where baby is born without the nerve endings in his/her colon that ensure everything keeps moving along as it is supposed to. As these nerve endings are missing in part of the colon, it prevents stools from passing. It is a life-threatening condition if not treated. It is usually picked up in the first few days after birth but sometimes can take a little longer.

Treatment usually means surgical intervention and removal of the affected portion of the colon

Hirschsprung disease occurs in approximately one in 5,000 newborns. Doctors aren’t entirely sure why some children get Hirschsprung disease, but they do know it can run in families and affects boys more often than girls.

In fact, Hirschsprung disease is about five times more common in males than females. Children with Down syndrome and genetic heart conditions also have an increased risk of Hirschsprung disease.

For example, about one in 100 children with Down syndrome also has Hirschsprung disease. (Statistics taken from https://www.niddk.nih.gov/health-information/digestive-diseases/hirschsprung-disease)

My son, Laksh, had emesis 24 hours after birth which was greenish in color. That vomit created a panic of sorts and the pediatrician on duty admitted him into the NICU right away. The hospital where he was born did not have a higher level NICU and he was transferred into a bigger hospital within a few hours where they suspected a few things, one of which was Hirschsprung disease. To diagnose it, a rectal biopsy is performed which was done in a few days after we were admitted in the NICU but the results took a while to come back. When the results came back, he was scheduled for a surgery within the next few days.

For Laksh, we had to undergo a Pull-through Procedure, thankfully without the need of a colostomy pouch. His surgeon did a wonderful job. He worked very hard and the surgery that would have taken 3 to 4 hours took over 7 hours ( more colon than what they originally thought was affected) but Dr. Fisher and his team were amazing and so was my son. He is a rock star. This surgery happened when Laksh was exactly 3 weeks old.

So now that I have given you some background, here are the 5 things I have learned about Hirschsprung’s disease from my son:

Seeing your baby’s dirty diaper for the first time can become a moment to cherish and celebrate.
Every diaper change that does not have poop in it can be nerve wrecking and a cause of concern
Measuring your baby’s belly becomes a routine of sorts and having pictures of his dirty diaper in your phone is fairly normal.
Rectal dilatation; no matter how painful for a parent to perform, helps our babies tremendously.
And lastly, you won’t care if your baby has Down Syndrome or Hirschsprung, all you would remember is how incomplete your life is without him and how you will do anything to see him smile

Smriti blogs over at Live Life Laksh Size where she shares her adventures into Down Syndrome, motherhood and Hirschsprung disease along with her adorable tourguide, Laksh. The family calls New York home.

Infantile Spasms in Babies with Down Syndrome

January 26, 2019 by Guest Post 1 Comment

A Down Syndrome diagnosis can sometimes come with an increased risk of other more rare disorders. One of these is Infantile Spasms.

Though this disorder is very rare, there is an increased risk of infantile spasms in babies with Down Syndrome. What better way to understand this disorder than to hear directly from a parent who has been there?

Dashel, who has Down Syndrome, has always been a happy baby and loves to smile. On April 8th, when he was four months old I noticed something wasn’t quite right, he wasn’t smiling hardly at all that whole week, he slept a lot more and just didn’t seem himself when I looked at him. I also noticed that when I was trying to give him his bottle he seemed unusually cranky and fussy and in the middle of trying to get him to calm down and take his bottle his arms and legs seemed to quickly jolt forwards and his eyes rolled back. It only lasted maybe 2 seconds but after it passed he would cry, a cry I had never heard before. I knew something wasn’t right and called his pediatrician to get him in the next day. A few hours would pass and he would have the infantile spasm, sometimes more than one, like a cluster.

When I took him to the pediatrician’s office he wasn’t having the spams at that time, but I had taken two videos on my phone the day before and was able to show the Dr. She seemed concerned and told me she wanted to talk to a neurologist to see what they thought. A few hours after I got home I received a call from the Dr. herself that the neurologist at Cook’s Children’s Hospital in Fort Worth wanted me to bring Dashel down to the emergency room as soon as possible. My husband left work immediately and my older son was picked up by my mother in law. We got to the ER and when we got to see one of their doctors we told them everything and showed them the video. They immediately did bloodwork and ordered a CT scan. They also got a urine sample via catheter and did a spinal tap for fluid testing. We hated seeing him go through all of this but knew we had to figure out what was going on. They told us that we would have to be admitted until they had the results for the spinal fluid, maybe 1 to 2 days.

The next morning after we were admitted to a room upstairs, the neurologist, came in and said he reviewed Dashel’s chart that morning and wanted to do a 24 hour EEG with video monitoring to see what else could be going on, he also said he thought it could be seizures and that the EEG would confirm this. During the EEG, we had a button that we had to push every time Dashel had the spasms to mark when he had them on the video as well as the EEG monitor, which by this time had increased in cluster and were lasting a little longer than before. After the 24 hours were up and he was removed from the EEG, the Dr came in and explained that Dashel was having Infantile Spasms, which he also called seizures. He explained that it was something not very common but was however more common in children with Down Syndrome.

His treatment plan was putting Dashel on a series of injections called ACTH or the Acthar Gel. Dr. Kelfer said that he felt this would help, but that Dashel could go on to have other types of seizures or possibly none at all. We would have to administer the injections at home everyday for six weeks. Dashel was prescribed a lidocaine cream to place on the injection site before the injection. The needle gauge had to be a little bigger because the medication was a little thick in consistency, so the cream helped with numbing the injection site. The nurse came in and walked us through the whole process and was very helpful. I had to do the first injection while we were at the hospital and it was honestly a little scary to inject our four month old with a medication but we got through it. The only side effects he had from the ACTH injections was an increased appetite and swollen cheeks which were both normal.

During the treatment we had two more EEGs done, one after 3 weeks of starting the treatment and one after the treatment was complete. The last EEG after his treatment was complete showed no seizure activity! We were so grateful and relieved to have such great results. The neurology team at Cooks took great care of Dashel. He hasn’t shown anymore signs of the infantile spasms since his third day of treatment.

Hopefully this is one of the last ones we will ever see: https://youtu.be/_SU4lmoQSqs

If you ever see your child do something that you don’t feel is right, follow your instinct. If they don’t seem like themselves have them checked out with their doctor, they may not be able to tell you what’s wrong and its better to be sure. Dashel’s Dr. said that the best thing we did was to get him checked out quickly.

Finding Balance as a Special Needs Mom

January 24, 2019 by Guest Post Leave a Comment

Finding Balance as a Special Needs Mom (by Trista Park)

As the mom to three kiddos, ages five and under, it would be easy to see why I am so busy all the time. Three schedules plus my own is a lot to maintain and it’s something I am struggling to find balance in when the youngest of my three has Down syndrome bringing a lot of extra appointments to our daily lives so finding balance as a special needs mom is important.

I am nearly two years into my role as mom to three girls. My journey into Motherhood began nearly six years ago when I welcomed my first daughter into the world. A couple of short years after that, my second daughter was born and another two years after that beautiful moment, my third daughter came into the world.

For me, the transition from one to two went smoothly, but I found that going from two to three was by far the hardest. It was perhaps due to the fact we spent almost 2 months in the hospital with her as she underwent life saving heart surgeries right from the start. And the fact that bringing her home medically fragile on a feeding tube and extremely susceptible to germs made it challenging to even attempt to get out the door unless completely necessary. I literally made it out of the house only to take her to the many doctor appointments we had those first several months home. Either way, it was a hard transition for me at first and the schedule quickly became completely overwhelming. I had three little ones pulling me in different directions, some needs seemingly more urgent to fill than others.

I will never forget Bernadette’s first in-home therapy. She had just barely been home from another hospital stay when the feeding therapist showed up. It was wonderful having another set of eyes on her to watch our attempts of bottle feeding and to encourage us along the way. I had been anxious to get therapies started and it was finally happening.

A couple of days later, the physical therapist and then the home visitor. Soon enough, it started to feel as if we had a revolving door of people constantly coming in and out. At that point, Bernadette still had quite a few appointments outside of the house and it all became a balancing act, the other two little girls vying for my undivided attention in the midst of the chaos.

I appreciated all the work our therapists were doing with us. Bernadette has made consistent progress forward and I know that each of them is to thank for that. In areas that have been more of a struggle, more time and energy has been devoted to those areas. Other areas where she is making leaps forward in have now been incorporated to everyday play as she interacts more with her sisters.

A few months ago, I realized I couldn’t keep up with the schedule. I started to question the various therapists we had coming into our house and decided it was time to reevaluate where I was at. I wanted to allow time for the older girls to have activities outside of the house or with friends but I had found that in the way I had things scheduled, there was hardly a free morning for anything aside from Bernadette’s therapies.

The first thing I decided to do was to check in with each of my girls to see if there was an activity they were interested in doing. The oldest chose gymnastics and the middle chose ballet. I looked up the classes to see when they were available and then began rearranging Bernadette’s schedule.

What I was noticing in this process is while the therapies are important for her, there also needs to be time and space for the other girls. I talked to our various therapists and figured out a schedule to fit in other activities. One therapy went to twice per month instead of weekly, Occupational Therapy and feeding were combined so she could still have fine motor without having to fit in a whole other hour into the week, which left enough room for physical therapy. It sounds like a lot and in the season we are in with Bernadette, I feel the therapies she is in currently are necessary in her development. Rearranging them to fit in with our schedule and make it work for us has taken such a load off my shoulders.

I find with the simple adjustments, things are more predictable and there is actually time to do other things. I have a couple of mornings free to either stay home or take the girls to a play date or another activity. It’s so important for their own stage in life to have those connections outside of the home, especially during summer when school is out.

I really don’t think there is a right way or wrong way to schedule therapies. I know that each family unit is in their own season of life figuring out what works best for them which I think is where the key is. Finding what works for you and your family while paying close attention to what the individual needs are.

I could see sometime in the future cutting back on feeding therapy but it has been an absolutely essential therapy

for Bernadette up through now. With the help of our various feeding therapists, we were able to tube wean from being 100% tube dependent, eat purees and onto solid table foods, learn how to drink from a bottle and now a cutout cup. There are still things we are definitely working on, like drinking from a straw cup or sippy cup, but when you think of where Bernadette was just over a year ago, she’s made some amazing progress. Progress that I wouldn’t have even known where to start to begin with.

I think the key is to be in-tune with yourself, other family members, and really finding that balance. Some weeks still seem down right crazy, especially when there are extra appointments thrown into the mix. The schedule is beginning to become more routine, creating a sense of predictability, with time set aside for other activities.

Limits for a child with special needs child with Down Syndrome

Trista is a warrior mama to three little girls, raising her girl tribe alongside her husband in sunny California through all of life’s twists and turns. Her youngest daughter was prenatally diagnosed with Down syndrome, has endured two major heart surgeries, and has proven to be the greatest gift she has ever received causing her to see life through a different lens. She invites you follow along with her story as she seeks to shout the worth of all of her beautiful girls, encouraging other mamas on their own journey of motherhood. She chronicles her adventures over at tristapark.com where she talks candidly about the good and the hard as a way to connect with other mamas facing hardships in motherhood. You can also find her on instagram @mrs_t_park

Finding Beauty and Dreaming Despite a Down Syndrome Diagnosis

January 12, 2019 by Guest Post 5 Comments

We have had the privilege of sharing over 100 stories of moms receiving a Down Syndrome diagnosis either prenatally or at birth. However, it is the dads that sometimes really need to be heard from. The silent partners that sometimes don’t share their perspectives as they remain strong and silent. Other dads need to hear it too though. Here is one dad willing to share…

It’s a beautiful day…

It was a beautiful day. Sun was shining, temperature was nice, we were full of energy. Ready for the prenatal screening, a normal check after 20 weeks of pregnancy. As usual I was offered a chair, somewhere at the feet of my wife. So far so good, we were joking, looking at the tiny human jumping around. The tiny human that came as a huge surprise. But not for a moment we were shocked – we were thankful and happy right away. Somewhere halfway the appointment I started to notice something wasn’t right. The sonographer became more and more quiet. The temperature seemed to drop. After moments of silence, she started talking again.

“There seems to be something wrong. I can’t see the connection between the ventricles in the baby’s heart. I have to send you to the hospital.” Our joy had vanished. Tears came. So far we had lived the perfect life. Happily married, blessed with amazing, healthy twin girls, another healthy and happy boy, doing jobs we love, doing things we like. I asked: ‘did you not see it, or isn’t it there at all.” After a couple of long seconds she answered: “It isn’t there. But it’s reconcilable with life.”

…don’t let it get away….

We cried for minutes, outside, hugging and hope returned fast. We had to pick up our kids, who – as always – were loaded with joy. The next day we went to the hospital, where the specialists looked at our baby. A new world opened for us, being at a children’s hospital. After the ultrasound we had to wait for a team of specialists to tell the results. They were clear. Our baby had a huge hole in his heart. But: it looked good, and it is something which can be fixed with great chance of healing. So far so good. Then the cardiologist was quiet for some moments and she said “well, there is something else with these heart defects. There is a 50% chance your baby has Down syndrome too, as this heart defect is one of its markers.”

I faded out, my mind turned into fog until the cardiologist, somewhat uncomfortable, put her hand on my shoulder for a second.

The next day we decided to go for clarity and requested an amniocentesis to find out if it was true.

…sky falls.

We had a tough week ahead. To be honest: I didn’t know anything about down syndrome. Well, I knew about the cute people on television. They seemed cute, but also people that you could really connect with, somehow. Either way, for us they were people far far away, you saw them once in a while somewhere. But never ever could I picture one of those people being my son – yes, we found out it was a boy. The next week we got a phone call. Our fear had become real: the boy had trisomy 21. This time it felt like we literally collapsed because of the worst earthquake ever. We felt as if our lives had ended. Unless, of course, we decided to end the pregnancy.

“Grace finds beauty – in everything”

It crossed my mind a couple of times. It would not be fair to our other kids to have a little brother who would suck up all attention. It would be the end of our marriage – this weight was something we could not carry. And a little boy with a huge heart defect and Down syndrome wouldn’t really have a happy life, right? But these thoughts didn’t last long. In fact, we had such an amazing time together, and with friends and family. Intimate talks, opening up our hearts, sharing our doubts and vulnerabilities. It was a time of many tears, laughter, and growth. And slowly but surely, love won. Love for each other, for our girls and boy, and of course our baby boy. Happiness returned. And yes, frequently happiness got covered by clouds and fears.

“This is not a burden. It is an adventure!”

And then the new year started, with a huge bang. All of a sudden Victor Judah was born, three weeks early. Our warrior. A very smooth birth. A little baby, crying loud, healthy color, huge testicles, 10 fingers, 10 toes. A perfect baby. After three days we got to go home. Our adventure had started. And boy- did we learn a lot. We had to work hard, just like with the other kids. Victor seemed to be the pee master, peeing almost every time when we opened his diaper. Victor amazed us, amazed the doctors, amazed everyone who visited him. This boy has something special. He is pure, and pure joy. Most things I thought to know about people with down syndrome were just wrong. Victor is in most ways just like anyone else. But look him in the eyes and you meet an angel. It is like heaven opens up. It is like he is saying: “just be yourself, and love me with all you have. I am worth it – and I love you anyway.” Victor has learned me to love unconditionally. Raising kids is more about helping them find happiness, and less about what I think what makes them happy. So Victor became quite the teacher for me. We learned to slow down, live by the day, and enjoy the little gifts we are given daily.

Of course there are some tough battles to fight with Victor. Like when Victor caught a virus, only a few weeks before the open heart surgery. It was too much for him – and he had to stay at the ICU for weeks. We saw lots of nurses and doctors. I could write pages about them – some really loving and caring, and some less understanding. But our experience at the Intensive Care was somehow beautiful. Walking side by side with parents standing next to their kids who fight for their health creates unexpected bonds. It makes you look different. And to bring your child for a 6 hour surgery, knowing they will cut his chest open, and stop his heart from beating is hard, the hardest thing I ever did. But great is the Victory when you get the call: surgery is done, it was successful. Even greater is the Victory when your boy opens his eyes. Smiles at you. Gets to go home with you. Enjoys vacation. And grows, learns, laughs louder and louder. It heals us probably even more than him.

“T21 babies looking for dads willing to fight for them, for the right to exist”

There was a time I thought that I had to be an advocate for Victor, for the weaker human. Now I see Victor is his own advocate. But I need to be his dad. A dad that fights for him. That battles the stigma. That opens eyes, hearts and doors so other people stop discriminating and see the human Victor. The boy with special gifts, who happens to may have a few special needs. I know most fetuses with down syndrome are not born. It is our mission to fight the elimination of gifted people with T21. I hope to inspire dads-to-be (and moms) not to fear if they get the diagnosis down syndrome. That the voices full of stigma and false information get drowned out by voices of loving parents and their amazing kids. I hope to find lots of dads fighting by my side for the future of special kids. Making way for stories of unconditional love, of faith and victory. Opening the eyes and hearts of people at governments, and hospitals. Showing them it is not ok to erase people just by misjudgment, and be silent about it. I won’t accept that I am part of a generation that willingly choose to erase a whole group of special people. Let’s show all the couples receiving this diagnosis: life will not end! It might change, but let’s show them that with great battles come even greater victories. It will change your heart, your relationships, your way of living – in a beautiful way.

“You may say I am a dreamer”

Living with Victor makes us dream. About his bright future, with many victories. And about our future as a family. We started dreaming about having a huge house, with lots of space, surrounded by land. A place where we can create space for people who are tired of all the stress and the performance related pressure. Maybe hunted by questions, maybe the victim of stigma’s themselves. In that place we want to share the wisdom from Victor. Where through Victor’s lessons people can find rest, and learn to love unconditionally. Call me a dreamer (to afford such a place we need to win at least the lottery), but until that day we will share the lessons, the hard lessons, the lessons of love and exceeding joy with the world. We see Victor touches lives, opens hearts. Let him be an example.

Victor was fearfully and wonderfully made. And yes, our road has more bumps. But with the bumps comes way better views – and for that we are deeply thankful.