Bella's Secret Garden

Earlier this year, I brought you the story of an incredible little girl named Bella. Bella came into this world with a poor prognosis, and was diagnosed with a rare syndrome called Frontonasal Dysplasia. Bella has undergone some major surgeries since I last wrote about her. 

Her mother, Lisa shares an update.

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At the age of 20 months, Bella has already undergone three major craniofacial reconstructive procedures. Her head circumference has been brought from the 0 percentile to the 75th percentile. Her skull has changed shape significantly, and her midface, nasal bridge and orbits have been surgically moved forward.

Bella has Craniofrontonasal Dysplasia, a rare syndrome that we are still learning about today. Bella's future skull growth is likely to regress and will need frequent "tweaking" until adulthood. She has surgically-created soft spots that may need closing, depending on how her body adapts and heals, and she will undergo a scar revision surgery to minimize scarring from the cranial vault distraction prior to starting kindergarten.

Bella's craniofacial surgeries are now at a lull, which we plan to enjoy thoroughly. In the meantime, Bella is being followed by the Janeway Rehab team in St. John's, and will commence with the Cerebral Palsy team in January. Due to Bella's initial traumas (a flat-line EEG, seizures etc), Bella has some issues to struggle through, all of which we consider to be fairly minor in contrast to our initial medical expectations. Her prognosis of surviving the removal of life support systems was once unlikely. A future with the ability to walk/talk/flourish was once the furthest thing from a possibility.

We retained hope for Bella, no matter what obstacles we faced. Looking into her eyes gave us hope, as the eyes staring back at us seemed to speak volumes. We chose to make her life as comfortable and enjoyable as humanly possible, no matter the challenges. We once said "If there's even the slightest chance that she can feel happiness, we have to try". And we did, and we were blessed in return with countless vibrant grins and a giggle that would melt the coldest heart.

We realize the bullets we've dodged, and we appreciate them numerous times every day. We cherish and marvel at every surpassed milestone. We celebrate her every day. We have been blessed endlessly.

I truly believe that the positivity that has surrounded us since her birth has helped on countless levels. The support we've received has been both humbling and breathtaking.

Should Bella require assistance due to Cerebral Palsy, we still consider ourselves lucky, as it's obvious any detriment won't inhibit her, she just might need to do some things a little bit differently. The point is, she'll still get it done. She'll see, feel, hear, and know life and love. And if you ask me, that's really all that matters.

*****

A couple of months ago, a team of supporters and family members sponsored a photo shoot for Bella and her family and created a fundraising calendar to help with the astronomical costs of her surgeries and frequent trips to Toronto's Sick Kids hospital. Although Bella is thriving and is a happy toddler, she will still require multiple craniofacial reconstruction surgeries in the years to come. 

Bella's Secret Garden calendar is available now, and has been selling fast! 
Please join Bella's Secret Garden Community on Facebook to find a list of locations where calendars are available.


NTV just recently did a story on Bella. You can watch the clip here -
http://ntv.ca/bellas-calendar-raises-money-for-future-surgeries/

And she was featured on Global News here -
http://globalnews.ca/news/1383020/sick-kids-doctors-treat-baby-with-rare-skull-condition/

Bella, you are a true inspiration. Lisa writes in the calendar, "Bella has consistently defied all odds. I pray that even one mother can retain hope after seeing Bella's journey."

Lisa, I am one mother you have touched, but I am only one of countless others. You have shown me that despite adversity, every day is an opportunity to celebrate life. You confirmed for me what I learned years ago - that no matter what our children look like or what they are able to do, they deserve to be valued and celebrated.

I hope you always know how valuable your abilities, your love, and your mere existence is.
You are a gift, sweet Bella. I am honoured to be on the receiving end.

-Julie

Happy Birthday, Graysen!!!

Several months ago, I shared the story of Graysen Power - the sweetest little boy who captured my heart from the instant I met him. His mother, Alice, has an incredible amount of strength and hope, and her faith is strong. She has been an inspiration to me and countless other parents of children with complex medical needs.

Graysen is diagnosed with Cornelia de Lange Syndrome, and he struggles with respiratory issues and Chronic Lung Disease. He has had a difficult road in his short life, but he has shown everyone around him what a true super-hero he is.

This past August, Graysen gave his family a bit of a scare. Alice describes their ordeal here :

Life has been an absolute roller coaster the past few years, but no ride can compare to the one we have been on lately. We were preparing to take 'Super G' home from the hospital, when all of a sudden on Tuesday, August 12th, Graysen got into some trouble. As the days went on, his situation became more and more severe. He looked to be comfortable but his blood-work and x-rays told us otherwise. Graysen was on life support and the amount of ventilation he needed was so high that we were warned that two things could happen - Graysen's heart could stop or his lungs could potentially burst. So, we had a decision to make. If either of these things happened, what were we to do? Do we bring him back, or do we let him go? At first, I screamed out that whatever we were faced with, I wanted everything done to try to bring him back. When I realized what I had said and understood what pain and suffering were involved, I was no longer so sure. I thought that my answer was that of a selfish mother who just couldn't picture her life without her baby boy. In reality, what is the right answer? The truth is that there is none. 

We sat at Graysen's bedside and watched and waited to see what the outcome would be. In all honesty, it was like watching a bomb ticking, just hoping it wouldn't go off. He became so full of fluid, he was almost unrecognizable. I was afraid to leave but I was afraid to stay. Finally, I bent down and whispered in his ear, "If you want to stay, Mommy would love that so much but if you can't baby, Mommy will be okay. You do what you've gotta do." I went home that night simply because I hadn't seen my girls in what seemed like months. I had to try to make things as normal for them as possible. I played over in my mind how in the hell I was going to explain to them that Graysen was not coming home. How do you even begin that conversation?! I wasn't prepared to have that conversation, not tonight, not ever. I wanted to wake up, to never dream this nightmare again. But I knew that wasn't going to happen. I couldn't sleep, afraid to sleep because I knew I had to wake up and face this all over again. The next few days were touchy but things were stabilizing. The doctors were a little more confident that we could get him through this ordeal. He started to wake up and although he was uncomfortable, his numbers were good, his x-rays were looking better, and he was AWAKE! The breathing tube was taken out and he looked to be strong enough to do it on his own. He lasted twelve hours until his left lung began to collapse again. Graysen was put back on a bi pap machine, and we still have not gotten to the cause of his breathing difficulties.

I asked if we could get some other opinions from some other hospitals. Graysen's information has been sent now to another center in Canada, with another in mind as well. If nothing comes of it, that's as far as the Janeway can go, as MCP will not cover any out-of-country visits, but that's not to say that I won't do it! I can't believe for one second that in this great big world, there's not someone out there who can help us. I will not stop until I find an answer because if I don't do everything in my power, I will know that I've failed. 

If anyone has any suggestions on other hospitals that deal with chronic lung disease, ANYWHERE, please let me know as soon as possible. For now, we wait and see.

*****

Today, Graysen is celebrating his second birthday! He has been stable and doing well these past few weeks, and his family are thrilled to be able to celebrate this special day in the "Party Room" of the Janeway hospital. I spoke with Alice earlier today, and she was is great spirits! She posted an update this afternoon, which she permitted me to share as well. Alice, you are remarkable. I admire your strength. Enjoy this day with your beautiful two-year-old boy!!

*****

The past two years have been a lot of things. Emotional pretty much tops the list. Terrifying is up there too, but they've also been extremely inspirational!! Graysen has taught us all the true meaning of love, patience, and acceptance. He has driven me to be not just a better mom, but a better person overall. Life has been topsy-turvy, upside down and back again but I wouldn't change a single thing. My life wouldn't be complete not being this way. I've met some amazing friends along the way and wouldn't have done so otherwise. I am grateful for all of you, you all know who you are!!!! We have grown together so much as a family. We realize now that there is so much more to life, and everything, and I mean EVERYTHING is a blessing!!!! Although sometimes it may be in disguise, it is always there. 
About six weeks ago when Graysen got really sick, a conversation took place. We were talking about where things were going and what the plan was. There was question if Graysen would even pull through. I knew he would, he just had to. Over the following few weeks there were more meetings and conversations. I have to ask you all now, has anyone ever been accused of having too much faith? I was.

I was reminded that Graysen sits on the extremely severe side of CdLS. I was told that children like Graysen, with severe health issues, don't have a very long life expectancy. When the meeting was over I cried in the washroom for over an hour. Then all of a sudden it hit me. "This is foolish". I went back to the unit, sat down, picked up my great big boy and like in my favorite book by Robert Munsch, I slowly rocked him back and forth, back and forth, and while I rocked him I sang "I'll love you forever, I'll like you for always, as long as I'm living, my baby you'll be". 

The next day I woke up and I felt on top of the world. I know this may sound completely and utterly crazy, but I was on a mission. People asked how I was coping with the new news? I said I was just fine. I was reminded of the conversation that had taken place and asked again how I felt. Again I said I was fine. I think people were beginning to worry about me. This is when the mention of having too much faith came to be. I was told that it might be for the best if I step back and really see the situation as it is. Graysen is not going to live a long happy life. There will come a time when nothing will save him. Let me just say one thing - I'm not an idiot!!! I am well aware that things are not ideal. I realize that the way things are, Graysen will never outlive his Mommy....but I'll tell you what I am....I'm a Mommy who loves her son so very much that I would rather embrace what I have as opposed to sit and wait for..........

So here we are today, The Big 2!!!!!! I thank God with every ounce of my being for sending me my son! He has made our lives complete. He has touched so many people's lives and pulled on a few heartstrings along the way. But the fact of the matter is, he's HERE!!! So as I finish this post and you go on about your day, please don't be sad for us. Please don't send any pity our way. You should actually envy us. We are a family that is held together by the bond that Graysen has created. So all I really have left to say is, don't cry for us Argentina, WE GOT THIS!!!!

Much love friends, and God bless xoxoxoxoxoxoxo

-Alice Power 

 Happy Birthday, Graysen!

The happiness and joy you bring to your family and to those who know you is a precious gift. You are the image of strength and determination, and you are a true fighter in every sense of the word. Graysen, I wish you many more happy birthdays!

Tulip Tales: Nathan

On February 17th of 2010, Brennen was scheduled to have his first orthopedic surgery - bilateral heel-cord releases, where they cut the tendons to lengthen the muscles in his legs that had become shortened and tight. I was a nervous wreck that morning, as I sat with Brennen in the surgical waiting room. I knew that he would be in good hands, and that he would be given the best possible care, but as a mother, you just hate to send your little one into the operating room. It is a hard thing to do and it never gets easier. The emotions are overwhelming. 

In the waiting room that same morning was another young boy in a wheelchair who looked to be a year or two older than Brennen. He was with his family, dressed in the same hospital gown that Brennen was wearing, and awaiting his own turn in the O.R. I remember looking at his mother, wondering if she was feeling what I was feeling, and how she was managing to keep it all together. I remember staring at her little boy, as so many strangers have stared at my son, only not out of pity but out of love.. love and concern and a deep understanding for what we were all about to go through. Though we exchanged many glances that morning, we did not speak. As her son was called in and she gathered their things, our eyes met and we smiled. Smiles that held so much more than words could say at that time. Smiles full of courage and comfort and a connection between two mothers on a very similar journey.

That little boy was Nathan, and this is his story.

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Nathan was born at the Central Newfoundland Regional Health Centre in Grand Falls on January 3, 2003. He was two weeks early, weighing 6 lbs 4oz and was 21 inches long. I remember we had to buy preemie outfits for him because he was so tiny. Though he was almost an average size, he seemed so small to us. Looking at him today, you would never say that he was premature. At a whopping 100 pounds and 5'4" tall at only 11 years old - he's quite the brute!

We had no idea that Nathan had any health issues until January 2, when I went in for a routine check-up. I explained to my doctor that I hadn't been feeling a lot of movement so she wanted to do a stress test to make sure everything was still fine. It wasn't. The baby was in distress and I was immediately admitted to the hospital with a biophysical ultrasound scheduled for the next morning. I know, you are probably thinking, "Why the next day?", and that's a question we often ask ourselves. I wonder if things would have been different if they had done something right away, but we cannot go back in time, and I don't know that I would want to.

The biophysical ultrasound showed that he had only a small pocket of amniotic fluid by his nose. Other than that, he was completely dry! It was determined that they needed to take the baby right away, and so Nathan was born by emergency c-section at 10:10 in the morning of January 3, with zero blood sugar and high blood pressure. After numerous tests and a week long stay in the hospital we were supposed to be going home. I was packing up our room when one of the nurses came to check on him and noticed that he looked a little "dusky". She swooped him up right away and took him for oxygen. More tests followed and before we knew it, we were airlifted to the Janeway Children's Hospital in St. John's thinking that he may have a hole in his heart! There was so much confusion. I didn't know what was happening or what all of this meant for my baby boy.

Our stay at the Janeway was an incredibly difficult time in our lives. We saw so many doctors and nurses who were all fabulous and they truly don't get enough credit for the work they do every day! Being in the hospital with your baby you see so many things that are sad, amazing and beautiful, all at the same time. You realize as a parent that you really are quite lucky to be blessed with the child you have been given. In time you will understand that all things happen for a reason and that special children are only given to special parents that can make their lives exceptional! 

We have been very lucky with Nathan. He is generally very healthy and does not have a lot of medical issues. He has had several surgeries, and we come to the Janeway regularly for CP clinic, but other than that he has been well.

Although Nathan's communication is mediocre at best, we understand him completely. He is very patient with us and will repeat himself over and over until we understand what he is trying to say. Having even some form of communication is huge when dealing with common everyday things like being hungry, thirsty or sick! 

When I started to write Nathan's Tulip Tale, I recalled the first time I saw Julie and her family. Nathan was having a tendon release done, and it was his first surgery! I remember wanting to talk to her so bad because I had never met or talked to another young mother in the same situation as us! Someone who knows all my feelings and emotions because she no doubt shared them! We didn't talk, we just looked at each other knowing mother to mother what was to come. It was going to be a long road for us. We did exchange email addresses and have been in contact from time to time ever since! I am so full of gratitude for the work that she is doing, bringing awareness and acceptance to cerebral palsy! Brennen must be a very proud little boy that his mommy is such a wonderful person. 

Today Nathan is eleven years old! He is a happy, funny, easy going, laid back young man! He loves his family and friends, loves school, being outdoors, and going to the stadium. Whether it is to watch his little sister play hockey or for him to skate, guaranteed he will always have a plate of fries and gravy at the rink. If there's one thing Nathan loves it's food! 

Our family is unique and special. Although we have different obstacles and challenges than other families, we wouldn't change our lives for anything in this world!

*****

Amy, thank you for sharing Nathan's story! I have to tell you, I filled up when you talked about that day in the waiting room. It's funny how we both felt exactly the same way. I am so glad that we connected and have been staying in touch ever since. Nathan is such a handsome boy and he has such a happy, loving family. You are truly blessed. I just love the picture of him on the swing!  OMG.. the joy on that child's face!! I do feel like we are on a very similar journey, and having someone like Nathan to look up to makes me less afraid of our future. He and Brennen are so very similar, and if they both keep going the way they have been, things are gonna be just fine!  

 

If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com  Please include a brief description of your child and their condition, along with any pictures you would like to share.  I will contact you with specific questions.

Thanks!
-Julie

Tulip Tales: Landon

Every day that I post a new 'Tulip Tale' is an exciting day for me. I love being able to share these amazing stories of such beautiful and inspiring children. This really is my favourite part of my blog. Each child is unique and each story is powerful. They all touch my heart and make me think about life in different ways.

Today, I introduce you to Landon. His mother, Michelle shares his story.

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Landon was born on June 4, 2009 - a beautiful baby boy, of 8 pounds 14.5 ounces. He was a bruiser to say the least, and I instantly fell in love with him. Though I didn’t know it at the time, my precious little boy was going to teach me the true meaning of strength and love.

Landon was a perfectly healthy baby and reached all of his milestones on time. Looking back now, I can see that there was always some weakness in his legs, but I didn’t realize it at the time. I have an older son, Logan, and I just thought “all babies are different, I cannot compare him to his brother”.

When he was about two and a half years old, the girls at Landon's daycare noticed that his walking was a little different and they brought it to my attention. I made an appointment with a pediatrician at the Carbonear General Hospital, where we were told that Landon had low muscle tone. This was in March of 2012.

By late August of that year, when Landon was just three years old, I knew there was something more going on with him. We took Landon to our family doctor, who confirmed our suspicions. He referred him to a Pediatric Orthopedic Surgeon, who told us that there was nothing wrong from an orthopedic point of view.

Our next step was to see another pediatric specialist in October, 2012. This doctor told us he believed there was something neurological going on with Landon, and referred us to the rehabilitation team at the Janeway Children's Hospital in St. John's.

We first met with the Rehab team in January of 2013. Landon saw all the members of the team: a physiotherapist, an occupational therapist, a speech therapist, a nurse, social worker, and finally a neurologist. The neurologist thought that Landon had a form of Spastic Paraplegia, but testing would have to be done to confirm this. We then set up an appointment with genetics to hopefully get an answer to the cause of Landon’s difficulties. It would be over a year before we would get our official diagnosis.

In the time we were waiting, we visited the Janeway for regular physiotherapy, occupational therapy, and speech therapy appointments, and we would go through the Cerebral Palsy Clinic every six months. We tried to live life as normally as possible, but it was a very difficult time for our family. We knew something was happening to our child, but we didn't know what it was. Moreover, we could see that his walking was deteriorating, and not having any answers was extremely stressful. I spent a lot of time researching Spastic Paraplegia. The stress of waiting for answers was really taking a toll on myself and my family.

Then came the diagnosis. On April 25, 2014, our genetic results were in. I immediately had a gut feeling that something was terribly wrong. They asked us question after question. Questions about his vision. Questions about his swallowing. Was he slow? Did he show any signs of dystonia? It got so overwhelming that I finally just had to tell the geneticist to tell me what they found. I couldn’t take any more questions because she was scaring me and I knew something was wrong.

Landon was diagnosed with FAHN or Fatty Acid Hydroxylase-Associated Neurodegeneration. This disorder is a sub-classification within a family of rare genetic neurological disorders called NBIA, or Neurdegeneration with Brain Iron Accumulation.

Landon’s condition affects the central nervous system by degenerating the myelin (white matter) in the brain and spinal cord over time, causing electrical impulses in the body to slow, leading to decreased motor and brain function.

This disorder is extremely rare. There are less than 30 cases known worldwide, and Landon is the only confirmed case in Canada.

As the doctor was explaining all of this to me, I cried and cried. I was in total disbelief. The only way I can describe that moment in time is exactly like what you see in the movies: when you receive bad news and everything around you becomes a blur. I just stared at them blankly. I had to force myself to come back to reality over and over again to try to pay attention to what the doctor was saying.

My biggest fear had come true: my child was diagnosed with something horrible. A progressive neurological condition. A condition for which there is no cure and no known treatment.

The first couple of weeks after the diagnosis were very hard. We spent a lot of time in disbelief, shock, and despair. We prayed every night and every morning (and still do) for God not to take the light away from our child, but we have two children and had to get out of bed and keep going for both of them. In fact, the morning after the diagnosis, I got up and took the kids swimming. That was the moment I decided that no matter what, I had to keep pushing forward and make life as 'normal' as possible for my family. My husband, Lee and I were very determined and decided early on that we wanted to find others with FAHN and do everything we could to turn this horrible nightmare into something good and God willing, do something to help our little boy.

Since receiving the diagnosis, our family has seen its share of stress and there have been some very difficult moments, but we choose to focus our frustrations into something positive. We are trying to make a difference by fundraising. I get asked all the time “What is your goal?” My response is that I don’t have a monetary goal in mind; I just want to find a cure.

Our fundraising started with Landon’s medical expenses and will soon shift to funding research to find a cure. I have created a board of directors, consisting of friends, family and colleagues. We are working on starting a non-profit organization in Newfoundland and we have some very exciting things coming up in the near future.

We have connected with several other NBIA families. We support each other and that has been a Godsend.

At this time, Landon is experiencing great difficulty with his walking and can no longer walk unassisted. Landon also has speech issues, but speech therapy is helping. We have no way of knowing when or if his disorder will progress, or if new symptoms will arise. 

There are questions surrounding his life expectancy. One study from the University of Washington says the lifespan of someone with FAHN can be in their early 20s to 30s, but with limited cases to study and so little known about the disorder, we are really unsure. We take life one day at a time, and one obstacle at a time. We are proactive and hope to do whatever we can to further research. More importantly, we enjoy every moment together. Our hope is very much alive and we pray every day that a cure becomes available!

What I want people to know is that we are a normal family living with extra-ordinary circumstances. We camp, we fish, we ride bikes, we swim, we go to the movies, we have dinner together, etc. We have to constantly look for ways to accommodate Landon’s limited mobility, but there is not much that we don't do together as a family. Recently, we attended our first Easter Seals Family Camp for children with disabilities, and it was a wonderful experience!

 Follow Landon's Story on Facebook - https://www.facebook.com/Landon.FAHN

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Thank you, Michelle, for sharing Landon's story. I can only imagine how difficult it must be dealing with such a rare condition and not knowing what the future might hold for your family. I love that you are being proactive and enjoying life one day at a time. That is all any of us can do, really. I am so glad that you have been able to connect with other families, and I hope that you know you are not alone in this fight. Parents of children with special needs share many of the same challenges and worries. We need to support each other and make the most of life, despite the difficult circumstances.

If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com  Please include a brief description of your child and their condition, along with any pictures you would like to share.  I will contact you with specific questions.

Thanks!
-Julie

How is everything?

It happens so often that someone will ask me "How is everything?" It seems innocent enough, but that is such a loaded question. I know people ask out of genuine interest and concern, but really.. everything?!  How much time do you have?

Perhaps it's someone I haven't seen in a long time, and they ask because they really don't know what has been going on in my life lately, and so they figure "How is everything" will cover all the bases.

It could be someone who does know some of the things that have been happening, but they don't quite understand Brennen's condition and all of the medical details, and so "How is everything" is a safe word choice.

In either case, my response is usually something generic like "Oh, we're good." or "Things are fine. Brennen is doing well."

Sometimes that is true, but most often there is a whole lot more to it that I don't share for a number of reasons:
#1 - I just can't be bothered getting into it at that time.
#2 - I don't want to come across as the complaining, whiny type.
#3 - I don't want to be seen as the crazy lady who shares too much information when all you wanted was a simple answer to a simple question.

I thought I'd take a minute to tell you how things are really going. Not everything.. but some things.

Brennen is still having his moments of absolute inconsolable distress (like I talked about HERE). We have seen doctors, done tests, and tried everything we can think of to try and comfort him and relieve his agitation, but nothing is working.

We've had him seen by a Chiropractor, who was super calming and gentle and very in tune with what Brennen needed and how his body responded. He saw him for several sessions, giving him slight adjustments each time. Brennen seemed to really enjoy the treatments, but there were no real lasting effects - meaning, it didn't solve the problem.

We saw both a Homeopathic doctor, and a Naturotherapist. They spent some time with Brennen, tested him for food sensitivities (Brennen reacted negatively to peanuts, wheat, rye, barley and apples), and prescribed a combination of homeopathic remedies to be dissolved under the tongue two times a day, fifteen minutes away from food (including toothpaste and gum), five minutes away from each other, and ten minutes away from other medications. They are to be kept away from electricity, magnets, strong aromas, and anything that gives off vibrations. Also, you have to clap three times and do the hokey pokey before taking them.

It's ok.  I got this.

I have to say (cautiously, yet optimistically) that Brennen does seem to be doing slightly better. Since he finished school last week, he's had some really good days! We think it might be because he is able to sleep in and wake up on his own time instead of me hauling him out of bed at an ungodly hour in the morning. I think sleep has a lot to do with it. I don't want to say too much and jinx it, but today was a good day, and I'm hoping tomorrow will be another one.
 

I'm sure it's the same for many parents of children with special needs. A simple question does not always have a simple answer. We even do it with each other. When a dear friend, and fellow CP Mom asks how I'm doing, I might just say "Oh, fine", when she knows full well that Brennen had a giant seizure and we ended up in the Emergency room on a Friday night.  Totally Not Fine.

I might ask the same question to another Mom and she will respond with something like "Oh, you know, pretty good." when I know that they've had a terrible week full of stressful appointments and they have been fighting with the insurance company over the ridiculously inflated cost of some essential piece of medical equipment .

I think we have a general understanding between us though, that we get it. We understand each other. We know that life is crazy and things get out of control, and sometimes it can be really really hard. We are on a roller-coaster ride that we never signed up for, and we just have to take it as it comes.

For those of you who don't have children with disabilities or medical conditions and who might not know what we are going through.. please continue to ask us. We might not elaborate a whole lot, but don't take it personally. We probably don't have the energy to talk about it, but we do appreciate you asking.

So.. how is everything? Things are good. Life is busy. Work is great. Andrew is awesome. Brennen has good days and bad days, but he is generally healthy and strong. The sun is shining and we have been able to get out and enjoy the warmer temperatures.

Life is beautiful and wonderful and horribly disappointing all at the same time, and there's no end in sight, and for that I am thankful. xo

Tulip Tales: Evan

Karen is originally from Bay Roberts, NL but now lives in Florida with her husband and their three children. Karen reached out to me recently to share the story of her youngest son, Evan.

***** 

February 18, 2012 our lives were changed forever. We were 18 weeks pregnant and because I was over 35 and had a history of a complicated pregnancy, we opted for a more detailed 2d ultrasound at a high risk pregnancy clinic. Shortly after the test began, I knew there was a problem. The ultrasound technician stated she was going to get the physician to take a look because something was not exactly as it should be. They both examined the screen and discussed the results only to inform us that our baby would have a serious congenital heart defect.

We were devastated. What would this mean? Would our baby live? What quality of life would he have? So many questions and so much devastation we didn’t know what to do or think. The physician proceeded to inform us that there were a number of chromosomal abnormalities that could accompany this defect. We were immediately offered an amniocentesis and informed that if we were to decide to discontinue the pregnancy we would need to make a decision in the next few weeks as the cutoff for termination in the state of Florida was 24 weeks.

We could not believe that our perfect little baby who we had been watching grow for 18 weeks was now a candidate for termination in this situation. So many horrible words and thoughts blurred together. We prayed and cried and cried and prayed. The coming months would be such a mix of emotions. We were immediately scheduled for a fetal echocardiogram to determine the depth of the defect and to make a final decision as to whether we would continue the pregnancy. After much discussion, prayers, and tears, we decided that terminating our little boy’s life was NOT an option.

Our baby’s cardiac defect was known as Hypoplastic Left Heart Disease. This basically meant that the left side of his heart was not developing, and without a series of three corrective surgeries before he turned three, he would die. The key concept in this for us was that it was “fixable” with surgery, so there was hope. We would receive numerous phone calls over the next few weeks as the results of the amniocentesis came in. Each time the phone rang we would hold our breath in anticipation and each time our prayers were rewarded with "no chromosomal defects". We continued to have echocardiograms throughout the pregnancy and each time we would still hope to hear those magic words “this has all been a mistake and everything is fine.” That never happened so we had to think about what was to come and plan accordingly.

The night of Evan’s birth would be a precursor to what would go on to be a roller coaster ride that none of us could have ever anticipated. At 34 and a half weeks pregnant, I had some cramping. Turns out I was in labor and the decision was made to send me to All Children’s via helicopter because of the baby’s condition and the fact that he may need surgery shortly after birth. Evan was born on June 1st 2012 at 19:26. We were told he could be born blue and need immediate surgery but he looked perfect! Tiny and pink, you would never know that without surgery he would not make it.

Five days after he was born, Evan would get bluer, become short of breath and have to go to surgery to rebuild his little heart. He came out of surgery after six hours and the surgeon told us that everything went well. What a relief! Nothing can possibly prepare you for the sight of your perfect newborn baby with his chest split wide open and nothing but a thin opaque dressing separating his tiny newborn heart from you. You could actually see it beating! My husband and I held onto each other and prayed. None of our family had arrived yet but Dan’s mom was on the way from Michigan to help with childcare for our 14 month old and keep our seventeen year old company while we kept a bedside vigil for this tiny baby boy that we already loved so much. Tubes and machines surrounded his tiny body as he fought to heal.

Less than 24 hours after surgery everything appeared to be going well. Evan’s nurse was at the bedside with his respiratory therapist performing routine care. His surgeon had just left for his daily rounds and both of us were hanging out in his room taking turns holding his tiny hand. Suddenly a nightmare unfolded. I heard his nurse say frantically to his therapist “Push the code button. He has no heart rhythm!” We were rushed out of his room because indeed Evan’s little heart had stopped. We stood at the nurse’s station as they performed CPR on our beautiful baby boy. The surgeon rushed back in and they placed Evan on the heart lung machine to keep him alive while his tiny heart healed. We were fortunate that his surgeon had just left the room and was able to come back so fast. He had placed him on the machines so quickly that he had saved his life. Tears of joy and fear flowed freely as we called our families to ask them to join us in prayer for our baby boy. We held each other and our baby’s hand as we begged God for mercy and strength. The coming days would be the hardest of our lives.

Two days later, I received a phone call from Evan’s doctor saying that testing had revealed a bleed in his brain. Once again, we were devastated. After all of this, would our baby now also have brain damage? This was so unfair! In order to be on the heart lung bypass machine for his little heart to rest and heal, Evan had to be on large amounts of blood thinning medication which was in turn causing the brain bleed. To avoid severe brain damage and further bleeding, Evan would have to be taken off the heart lung machine before he was ready and his heart could potentially stop beating and not restart. We had to choose his brain and level of mental functioning over his heart and potential death and we had to decide now. There really wasn’t much to decide because if he didn’t come off the blood thinning medication the bleed would increase and he would most likely be brain dead anyway. So on Sunday June 10th we kissed our baby boy and with tears streaming down our faces we left him in God’s arms while we walked aimlessly through the hospital calling our family members, not knowing if we’d ever see our child alive again.

The coming days turned into weeks and then to months. Everything we had read described a serious surgery with a one month stay in the hospital. We were into month number two and our baby still needed a ventilator to breath because he was too weak to breathe on his own. We saw children come and go and some who didn’t make it as our little warrior plugged on at his own pace. One complication after another, he would become septic, his wound would not heal, his kidneys got weak and he needed the assistance of dialysis. All the while his tiny heart healed and kept beating. We still had no idea what kind of damage the brain bleed had left behind and until he could wake up from the sedation and begin to move and breath we would not know if there was permanent damage or not. No one could give us answers. He would be placed on and off EEGs to monitor his brain waves. It felt like forever once they discontinued the sedation before he would finally move his tiny fingers and toes. Eventually, more than two months after his first surgery, Evan was able to breathe on his own and the ventilator was removed. He had been there so long and had seen so many doctors, that his room contained a full cheering section as that tube finally came out and we got to hear his tiny voice for the first time since his fifth day of life. What a sweet sound that was!

Unfortunately, Evan continued to have setbacks. His little lungs had taken quite a beating and he would have an ongoing battle with oxygen as he grew stronger. He was being fed through a tube from his nose to his stomach and had never eaten anything by mouth. He had no idea how to suck and swallow. By now, Evan was three months old and most of the immediate danger had passed. He did, however, still have a shunt next to his heart that proposed a continuous risk of becoming clotted and we had to be very careful to not allow him to get upset or be in any distress.

Over the next few months, Evan began to move around and behave more like a typical baby. He seemed to move and breathe appropriately and was beginning to look at people and things. He would continue to have terrible days where he would become inconsolable for no apparent reason. He would need several IVs, blood draws and respiratory treatments. One of us would try and be at his bedside at all times but I had run out of maternity leave at this time so it became increasingly difficult to stay at all times and we would take shifts. I would stay for most of the weekdays and Dan would spend the weekends.

Time was passing quickly and our baby was growing fast. We were heading towards the time for Evan’s second stage of repair where his shunt would be removed and his circulation would be rerouted once again using his own vessels. He was four months old and doing well except he had not yet learned to eat on his own. Speech therapy was working with us to teach our baby the basics of eating but it was moving quite slowly. His neurological status continued to improve and no lasting deficits were seen. Discussion began on whether we should take him home or keep him in the hospital for his second surgery. After much deliberation and consultation with his surgeon it was decided that it would be in Evan’s best interest to stay in the hospital rather than risk a devastating infection that would keep him from being able to get the second lifesaving surgery when needed. So we kept our bedside vigil. My mother came from Newfoundland to relieve Dan’s mom, who was helping out with childcare for our now 17 month old. We were so blessed to have such strong family support.

At 5 months old, on November 5, 2012 Evan would go for the second stage of repair of his tiny heart. We were so scared as we sent him off with the surgical team once again. Prayers went out across two countries that God would continue to show His mercy on this tiny baby and show us another miracle. The second surgery went well and everything began to look up. Two days after surgery we removed Evan’s breathing tube once again. He was breathing on his own, but he was weak. A few hours after removing the tube, Evan became more distressed and the tube had to be placed back in. Another long week or so of ventilator support and his tube finally came out and stayed out. Coming off the oxygen was a different story. Evan’s oxygen requirements would rise and fall as well as our emotions since this was a major obstacle to us taking our baby home and FINALLY being a family. Also the feeding issues had arisen again since he was still being fed through a tube in his nose. In order to bring him home he either had to eat enough calories to grow or we had to place a more permanent tube directly into his stomach to feed him through until he could learn to eat. We wanted him home so badly but putting him through another surgery and placing him under anesthesia again terrified us and seemed unthinkable. He kept vomiting up the formula and our frustrations continued. It seemed like a vicious cycle of vomiting followed by dropping oxygen levels. Stomach specialists and lung specialists were consulted, formula was changed, and medicines were added, adjusted and taken away. All to no avail, so we made the decision to place the gastric tube just days before our baby’s first Christmas.

Evan would spend his first Christmas in the room that he had never left, and Santa would visit him there. I put up a tiny fiber optic tree in Evan’s room as tears streamed down my face. I had been so determined to have him home for Christmas, but he had other plans. We were given special permission to bring our 20 month old boy Jake for a quick visit on Christmas day so that we could be together as a family. All Children’s Hospital and their Child Life team were incredible. They did all that they could to help us.

On January 17, I was heading over for my usual week long stay. I picked up my cell phone to call Evan’s nurse for my usual morning report. As the nurse started talking she told me that his discharge orders were written and he was coming home! I couldn’t believe my ears! I was laughing and crying and calling my husband to assemble the crib we had bought but did not assemble because we could not bear to look at an empty crib and wonder if Evan would ever sleep in it. I arrived to see my baby and the room was buzzing with excitement. All kinds of last minute arrangements and tests were being ordered and done so Evan could come home TODAY! I packed seven months worth of stuff into a wagon and we were ready to go. It all seemed so surreal. I was going to get to hold my baby all day and all night if I wanted and I wouldn’t have to hear a monitor beep or share our private moments with anyone! I was so excited I could hardly breathe. Dan arrived, we loaded our van and we carried our baby outside of his room for one final victory lap around the ICU. We said our goodbyes and with tear stained cheeks, we carried our baby out into the world. What a day! I rode next to him in his car seat as he slept peacefully. All was right in the world as our family prepared for the next chapter. We were free to take care of our baby on our own, and with a pile of instructions and equipment we were ready. We could do this!

I thank God every day for the preexisting strength and love of our family. It is the glue that held us together. We had good days and bad but finally the good days were outnumbering the bad and we all got stronger every day. Evan was growing and smiling and quickly becoming a very important family member.  The battle isn’t over yet. Evan will need another surgery before he is three and there will be many prayers and tears but so far life is good and we’ve made it! My new job is in the pediatric emergency room and every day I am reminded how lucky we are that our child’s problem was fixable by the hands and knowledge of great medical professionals. God blesses us every day and we are forever grateful. I have gained so much respect for my fellow medical professionals and all that they do.

Evan just recently celebrated his second birthday. He has been getting physical therapy twice a week due to severe torticolis, which is a tightening of the neck muscles and tendons usually on one side of the neck. Our physiotherapist is very experienced and recently sent us for further evaluation with a neurosurgery team because this condition normally resolves itself by now. After having an MRI and a CT scan of his neck, I received a call from the neurosurgeon stating that himself, his partner and the radiologist had spent three hours evaluating Evan's tests and they were in agreement that Evan needed urgent neck surgery. His cervical or neck vertebrae we're not formed properly and we're unstable, which meant that he was at high risk for a spinal cord injury unless he had a cervical fusion done to stabilize his neck. I couldn't believe my ears. My poor sweet baby who was just starting to stand and talk now had to be admitted and undergo major neurosurgery and weeks of recovery!! How was this fair?!!!

My husband and I cried and grieved once again for this poor child who had no idea what lies ahead. We were headed back to the hospital where it all began. The only saving grace was our confidence in the staff there and our level of comfort after bring there for so long. Imagining our little boy in a neck brace with breathing tubes and all that comes with major surgery was more than overwhelming. We met the surgeon who was an amazing man with an excellent reputation, thank goodness. Now we wait. The surgery is scheduled for July 24 and each day it gets closer I hug him a little closer and try and stay strong for my big brave warrior.

*****

Karen, thank you for sharing your beautiful boy with us! He is certainly a brave little man! As you get ready for his upcoming surgery, know that we are thinking of you and wishing you and your family much strength and love.

If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com  Please include a brief description of your child and their condition, along with any pictures you would like to share.  I will contact you with specific questions.

Thanks!
-Julie

Tulip Tales: Maggie

For those of you who have been following my Tulip Tales series, you know that these are all very emotional stories. Reading about the struggles of such tiny children - children who should never have to face such challenges so early in life - is not an easy thing for any of us. I am always very moved by these stories, by the strength that is shown in the children and the love that consumes each family. That being said, I have to warn you that this Tulip Tale is a particularly difficult one to take in.

I asked Katie to share only as much as she was comfortable with, and she felt that it was important to tell her daughter's story from the beginning, "to show how strong and miraculous she really is."

Here is Maggie's story.

*****

On December 11th, 2012, I gave birth to my sweet little Maggie. Right from the start, she was calm and content and she was a great sleeper. I felt so lucky and so happy to be a Mom! The first three months of her life were quite typical - lots of smiles, tummy time, batting at toys and following me with her eyes everywhere I went.

Then one night, a typical night like so many we'd had before, her Dad came home from work and put her to bed while I had supper and a shower. I heard Maggie wake up in the middle of the night, which was unusual. When I got to her, I knew right away that something was wrong. I called 9-1-1 and an ambulance came and took us to the ER.

Before I knew it, we were being sent by air ambulance to the major children’s hospital in Vancouver (Maggie was born in BC). They ordered x-rays, CT scans, MRIs, and other tests. Maggie was seizing uncontrollably and had lost consciousness. As they worked on her, I was whisked away by police and doctors. I wasn’t sure why the police were there. I was so confused and terrified that something was seriously wrong with Maggie.

Maggie had multiple skull fractures, rib fractures, and a broken foot and clavicle. Her brain was bleeding and she ended up having two strokes. She was admitted under “non-accidental injury" and "traumatic brain injury”

Maggie’s father - my now ex-husband - had nearly beaten Maggie to death in her bedroom while I was in the shower.

He is awaiting sentencing in BC for aggravated assault and assault causing bodily harm.

There isn’t enough time or space to even begin to try to explain how I felt. The horror, the shock, the fear, the anger.. it is beyond comprehension. I decided instantly that I was now a single mother and all I could do was think of Maggie.

The bleeding and pressure on her brain did subside, and surgery was not required. A PICC line was inserted to handle of all the medication she was getting, as well as an NG tube. We were told she may spend three or four weeks in PICU before we would head up to neurology.

Maggie was safe now. Safe from a horrible threat that I didn’t even know existed.

After only six days, we moved up to neurology. The nurses called her 'Miracle Maggie', because she was so strong. They gradually weaned her from the medication that was keeping her sedated, and she started to become alert and awake. The NG tube was taken out. Again, we were told it would be weeks on neurology. We were there just six days.

The staff was so impressed with how determined and how strong Maggie was. She started bottle feeding and moving her arms and legs, but it was obvious that Maggie’s vision had not returned. The strokes she had suffered were in her occipital lobe, and so we were unsure if she would ever regain her vision.

As she recovered in  hospital, and then in a hotel with my mother and I, I was granted full custody of Maggie and all of my husband’s parental ties were severed. He was not allowed to come within 25 feet of Maggie or me.

At six months old, Maggie was still non-visual, and still having seizures. We packed up and moved back home to Newfoundland, where I am from and where all of my family is. We quickly became well accustomed with the Janeway staff, the neurology department, the CNIB, and many other services. It was unclear how much damage was done to her brain and what the long term outcome would be.

Maggie truly is a miracle. Every day I am so grateful that she pulled through this horrendous attack - something that no one, especially a child, should ever endure. All the while, she remained the happy content little girl she always was. I didn’t know what was to come, but I knew the reality of the brain damage meant developmental delays and vision loss. All I knew was that whatever came to be, I could deal with it because Maggie was alive and well.

I struggled for a long time with the fact that this was all just so unfair. It was unfair that she was going to have so many physical struggles and health problems because of what he did to her. It gets a little bit easier every day, and I have slowly accepted that this wasn’t the path her life was supposed to take, in the sense that she was born healthy. It is never fair for a child to struggle, born with the issues or not, so I couldn’t let that fact keep me down. This was our life now, and we had to live it, happy and together, us girls.

Maggie is now 17 months old. She has been diagnosed with cerebral palsy, cortical visual impairment, epilepsy and developmental delay. She goes to physiotherapy, occupational therapy, speech therapy and music and swim therapy weekly. She is non-stop, crawling, climbing, laughing, playing and happy! It took months of work for her to gain the milestones that she has, but that is ok. We have our own milestone timeline now, as many parents of children with special needs may relate to!

Maggie rolled over at 7 months, started getting up on all fours at 9 months, crawling at 1 year, and now she doesn’t stop. She cannot walk or stand unassisted, but uses a walker at physio and eventually will at home. She will be getting botox injections in the fall and hopefully that will help with the spasticity in her legs. She is babbling now, and is starting to take turns making sounds with me. She claps her hands in delight and gives kisses, sometimes without being asked! That is my favorite, of course!

Cognitively, Maggie is at about a nine month level, gross motor at about twelve months. We are so proud of Maggie and all that she has achieved. She hasn’t had a seizure in almost a year, and her EEGs are getting better and better. We used to see neurology every month or two and now it is 4-6 months between visits… that's a huge jump for us!

Maggie is very social and interactive, and her vision is really improving, which is surprising. We never expected it to improve so fast. She truly, truly is a miracle. I am so lucky to be her Mom, and to have such a strong happy girl as my baby. She is developing such a sweet personality, and I am so grateful. Every time I get overwhelmed with appointments or whatever, I just think back to the PICU, to the fact that she may not have survived, and I remain grateful that she did. Any hurdle will be met with pride and happiness - pride and happiness that she is here and alive and well.

I did not think that I would be a single mother of a child with special needs, but such is life - the life that we share now together. It is with great pride that I write her story, pride in the strength and love I see in her every day.

Our life is not what I imagined, but I wouldn’t change a thing about my little darling girl. She has overcome so much and she continues to amaze me every day. I learn so much from her, and I cannot wait to see what her future will hold.  Though it may be a different future than we'd expected, it will be one full of joy and happiness!

*****

Katie, I don't even know what to say. Thank you for sharing Maggie's story. I believe the nurses were right to call her "Miracle Maggie". What an amazing little girl! And you are one strong Momma! Not many families could rise so beautifully out of the ashes of such a horrific tragedy. You and your sweet girl have come a long way. She is a fighter and she is lucky to have you in her corner. I am so happy to have met you both, and I hope for a very bright future for "Maggie Moo"!

If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com  Please include a brief description of your child and their condition, along with any pictures you would like to share.  I will contact you with specific questions.

Thanks!
-Julie

Tulip Tales: Benjamin

Meet Benjamin -  a handsome, happy three year old boy with many symptoms but no diagnosis. His Mom tells his story.

*****

Our son, Benjamin was born full term in July of 2010, weighing a healthy 9 lbs and 1 oz. We were elated to have a boy to add to our growing family! I had my daughter by C-section two and a half years before, and I opted for a section again the second time around. 

When Benjamin was about two or three months of age, we noticed that he would favour his right side. He would always sleep that way, and he was starting to develop a flat head on one side. We were given a referral for Neurology to get fitted for a helmet to try and reshape his head. I had also been bringing him to physiotherapy because we thought he had a tight muscle in his neck. At five months old, he had yet to meet any of his milestones. We started to notice that he was sleeping a lot, and by a lot I mean most of the day. I knew that something was wrong, but I had no idea just how severe it was.

December of  2010 was a blur. I had taken Benjamin to our family doctor multiple times for some concerns I'd had about his sleepiness and lack of interest in feeding. Also, there were times when his hands would go from cold blue to fire red hot in a short amount of time. We went to Emergency, where the doctor ordered a CT scan. I could tell from the look in his eyes that something was wrong but he didn't want to say anything for certain without the final test results.

On December 22nd, Benjamin had his first 'episode'. He went limp and his head would bow forward. He did this multiple times repeatedly. I didn't know what it was, but I knew it was not normal infant behaviour. My husband and I rushed him back to the Janeway, where we were told that there was nothing that could be done that night, but to bring him back if it happened again. The next morning, Benjamin had another 'episode'. This time, I was going back with a purpose. Someone was going to tell me what was wrong with my baby.

While we sat in Emergency waiting to see the triage nurse, I noticed a small baby in a car seat looking at her sister across the room. That was when I broke into tears. It hit me that Benjamin was five months old and could not do that. He did not look at his sister from across the room. He was not aware in that way. 

When I handed him to the triage nurse, I was a mess and she knew it. I will never forget her face. I'm sure she has seen many sick children and their families, but I will never forget her. She took us out back to a part of the hospital I hadn't seen before, where they called for a medicine consult. Benjamin was hooked up to stat monitors and his vitals were all good, though he had four more 'episodes' that day. 

On Christmas Eve, Benjamin had his first EEG followed by an assessment with the Neurologist. I wasn't sure what to expect or how long it would take to get results. We sat across from two doctors and the nurse on charge that day. They proceeded to tell us that Benjamin was severely delayed and would "never be normal". They told us that the 'episodes' he was having were seizures, and that in addition to his delay, he has a rare type of Epilepsy called Infantile Spasms. I turned and buried my head into my husbands shoulder. I couldn't bring myself to look at these people or believe what they were telling us. All I could think was that my healthy baby boy, with a completely uneventful birth, would never grow up to have a family of his own.

We have had numerous tests since that day to try and determine a true diagnosis for Benjamin. We have also been to Sick Kids in Toronto for a second opinion with no further results. Benjamin has had two spinal taps, multiple MRI's, and muscle and skin biopsies, all without a conclusive diagnosis. His chromosomal analysis was normal. He has had numerous genes tested, which have all come back normal. We recently did a test of fifty potential genes for Infantile Spasms which came back inclusive. We truly aren't sure what is next on the list of tests. The best diagnosis we can get right now is "Global Delay". I call it the "we don't have a clue" diagnosis. 

Benjamin has had two steroid treatments to try and stop his seizures. The seizures are ever-changing as well. He has myoclonic jerks and focal seizures, and sometimes they come in clusters. We have tried the Ketogenic Diet, but he ended up in Emergency with pneumonia and his sugars were super high, so he was taken off that right away. I can't count the number of seizure drugs we have tried, and at three and a half years old, he still has seizures multiple times every day even while being on seizure medications.

Benjamin has also had numerous respiratory issues. In 2012, he underwent two different swallow tests and he aspirated on both. That Spring, we decided to go ahead and get his G-tube for feeding. Eating had become a chore. It was no longer enjoyable for him, and he wasn't thriving. I had been spending so much time sitting with him at the kitchen table and trying to get the proper nutrition into him. It was a long process. His G-tube has been a life saver. It really has increased his quality of life in the most positive way.

In December of 2012, Benjamin was placed on a respirator with another pneumonia infection. I was trying to get some sleep in the hospital when the Intensive Care doctor told me to call my husband. We didn't know how it was going to go for Benjamin. In a daze, my husband arrived at the PICU with our young daughter at 5:00am. We braced ourselves for the worst but Benjamin is a fighter. He spent three weeks in the PICU, but he made a full recovery.

There have been many ups and downs on our journey. We have had some really dark days when it is hard to believe that there is a light at the end of the tunnel. Thankfully, there are also some really great days where people rally around us and inspire us to keep fighting. Sometimes it is anything but easy to raise a child like Benjamin, but one look into his beautiful eyes melts my heart. 

I see my son as a "normal" little boy now. I tend to forget what normal development is until I am around other children. His sister has had to grow up quite quickly because of our frequent trips to the Janeway, but she is amazing with Benjamin.  She just sees him as her brother. Once, seeing a baby crawl, she said "Maybe we should teach Benjamin how to crawl", or she will ask why her friends at school think her brother is a baby. She is a wonderful big sister, very concerned and always looking out for him.

Benjamin is non-verbal and dependant on his wheelchair for mobility. We attend music therapy, which he enjoys thoroughly. I've seen such great strides in his development since being involved with music therapy. Even the littlest progress is the most amazing thing for a child with so many struggles. We have come to accept him for who he is and not what he will be. I keep saying, "He'll get there when he's ready!"

Why me? Why us? Why him? How many times have I asked myself those questions. I believe that he came to me for a reason. He gives me strength that I didn't know I had. Never an athlete, I ran my first half-marathon for Benjamin in 2013. Benjamin is such a wonderful teacher on the lessons of life. We try to live our life as normally as possible, when we are anything but a normal family. 

In the words of his sister, "I think everyone needs a Benjamin!!"

*****

Diane, thank you for sharing Benjamin's story with us! I have to agree with his sister - I think that everyone needs a child like Benjamin in their life! I know that my own son, Brennen, has brought so much love into my family, and I can see that Benjamin has done the same for yours. It truly is a special gift that we have been given. Such special children that have taught us both so much about life and about what really is important.  

I love how you say that "Even the littlest progress is the most amazing thing for a child with so many struggles." I couldn't agree more! We have to celebrate every moment, every single teeny tiny achievement! I find it comforting to know that there are others who understand this. I am so glad to have connected with you! Much love to your family.

*****

If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com  Please include a brief description of your child and their condition, along with any pictures you would like to share.  I will contact you with specific questions.

Thanks!
-Julie