Not a Moment to Waste

While living in Honduras we had the opportunity to get to know the Ingram family a little better.  I was so touched and inspired by their story, and the obvious love that overflows from them, that I wanted to be able to share their situation with more people.  I am honored to get to introduce them to you via our blog, and I’d like to thank Chelsea for taking the time to do this interview, and for being so open with us.

Please let us know about your family, how many kids, their ages, etc.

We are the Ingram family from Maui. Jarrett (dad), Chelsea (mom), Peyton (6 years), Conner (5 years), and Trek (1 year). We have lived on Maui for the past four years and have recently decided to travel and show our 3 sons the world! We saved some money, sold all of our stuff and Jarrett quit his job with big plans to fulfill his dream of working from home as an author. We bought one-way tickets to Thailand in December 2011, but 1 week before we were going to leave we found out our youngest son, Trek, had a genetic disease and would not live past his 2nd birthday. We were devastated and our world fell apart and can never be put back together. But we still had to take our baby, who we named Trek Atlas, and show him the world. We want to give him and our other 2 sons and us the best life imaginable.

Your youngest, Trek, has some major medical concerns. Please let us know more about his condition and his prognosis.

Trek has a very rare genetic disease called Niemann-Pick type A. My husband and I are carriers and were unaware of it. Both of our older sons do not have it, but may or may not be a carrier for the disease.  Being a carrier does not affect you.

Trek is unable to produce an enzyme-acid sphingomyelinase which metabolizes sphingomyelinon at a cellular level. This causes a buildup of sphingomyelin which leads to cell death. His liver and spleen are enlarged since they cannot get rid of the sphingomyelin, and Trek stopped progressing developmentally at around 6 months old. Trek is very small, he weighs only 12 lbs., and has the biggest most beautiful blue eyes. He can still smile and hold a small toy and roll from side to side, even though his main joy is to be held and snuggled all day. We never put him down because we don’t want to for one thing! But also he is greatly distressed when he is not being snuggled, so we gladly do it. He also only breast-feeds for his nutrition since he cannot eat food. So he nurses about every 30 minutes all day and night.  I love that I can snuggle and give him all that he needs right here in my arms.

Because of Trek’s terminal condition, your family has done something many would find unthinkable: You’re traveling the world with him! What spurred you to do this? How has your family responded?

Well, I think they all thought we were crazy to travel around the world before we found out he was sick! Not really.  We have very supportive family and friends, but actually since we found out Trek was sick we have been met with nothing but support and cheering!  When we found out Trek’s prognosis we spent about 2 weeks taking him to specialists and researching day and night. There is absolutely no cure or treatment for Niemann Pick type A at this time. When we were sure there was nothing we could do to heal Trek we decided to make his life amazing and to make unforgettable memories with him and our other sons. It was made a million times easier since we had already prepared our lives for this amazing journey since we had already decided and prepared for a life of travel by this point.

There are many traveling families, but few, if any, share a similar situation as yours. How do you handle the naysayers?

We have been happily surprised by not having ANY naysayers. Not one person has said anything rude or negative concerning the choices we have made for our family and for Trek. Everyone we know and have met during this difficult time has gone out of their way to support us and give us love.

Have you ever had a time where you rethought the wisdom of this choice? Have you had any experiences that confirmed for you that this was the best possible choice for your family?

When we decided to continue with our travel plans even though Trek would be sick we did so with the main goal being for Peyton and Conner to make extreme and powerful memories with Trek. We also wanted to heal a little and thought by spending our days in new and exciting ways it would help us keep from thinking of our harsh reality all of the time. Well, all that has happened and so much more. Every day we travel something amazing and beautiful happens that far exceeds all of our hopes for this time. From seeing a rare monk seal on Hawaii, meeting Mickey and Minnie at Disneyland, to riding a panga boat in Nicaragua we cannot imagine doing any of this without Trek. The main thing that has surprised us has been how much Trek loves to travel—the actual travelling part! The bumpier and the windier and the crazier the more he smiles and is content. He lives snuggled on my left shoulder, watching the world unfold as his brothers play and explore. He lifts his head up and smiles when something catches his eye, his does this more on the days we are hiking, or swimming or having our grandest adventures. He really lives up to his name!

What’s been the hardest part of the decision to travel, and what about actually traveling? What are some of the challenges and positive outcomes you’ve experienced so far?

The scariest part about travelling is if Trek gets really sick. His doctors have agreed to help us over the phone and are available 24 hours a day. They have also sent us with their blessing on our journey and with tons of pain medicine. There is nothing to cure Trek, but as his body degenerates he feels uncomfortable and we are always ready with a drop of morphine under his tongue. About 5 minutes after we give Trek his pain medicine, he is holding up his head and looking around—it makes him feel so good and at his best. We hope to keep Trek out of the hospital and the doctor’s office the rest of his life.

We hope his path is easy and gentle and he can live out his life in our arms.

We also have to be conscientious about money, without worrying about it all the time—that is hard! We had some money we had saved for our original trip, we just sold our van, and there have been many wonderful fundraisers for Trek to help our family. But at the end of the day we have to make sure we have enough to keep Jarrett home the duration of Trek’s illness and have some money in case Trek needs emergency medical care. That is a huge reason why we are starting our travels in Thailand. We are trying to find a beautiful, warm, exciting place we can live out Trek’s life for under $1000 a month. We have heard and researched that we can do that in Thailand. Having Jarrett home to help with Peyton and Conner and keep us all fed is something that would really take away from Trek if I had to do all day long by myself. I hold and breast-feed Trek constantly all day, so Jarrett being home gives me the freedom to give Trek all of me and as much time and attention as he needs. It also makes it so that the few times that Trek smiles or wants to play during the day that Jarrett is nearby to get to see it and hold him. It is few and far between when Trek lets other people hold him so when he does we have to take advantage of it right away.

You’ve been to some potentially remote areas that lack services, such as Utila, Honduras, where we met. How do you deal with the possibility that medical attention may not be readily available?

We have talked to his doctors and nurses many times about this. Sadly, if Trek gets sick there is not a lot they can do. The main complication that can come from Niemann Pick type A is a lung infection like pneumonia, even a common cold could potentially lead to death for a child with NPA. If this was to happen, and it might, Trek would not be able to tolerate antibiotics in his tummy.  He eats and drinks only breast milk, and antibiotics would be very harsh for his system and make him very sick. Morphine is the best thing we can give him when he gets sick, it helps him feel wonderful and his body to relax so it can do whatever is best for him. He actually has already had 2 colds that scared us, but I just breast-fed him constantly and we gave him morphine to help his body relax so he could heal, and he got over each one in just a couple of days. Other than that there are no acute complications that typically come up with children with NPA. If some complication that we cannot treat ever comes up, we have money set aside to take the 1st flight to the US to the Denver Children’s Hospital, or we could take him to the local hospital wherever we are at.

What has been the most defining moment for you in your travels?

Our first stop on our journey with Trek was Disneyland. We found out Trek was sick in January and late one night when I was crying I told Jarrett through my tears that I wanted to go “the happiest place on earth.” We booked our Disneyland trip the next day, and we walked through Sleeping Beauty’s castle 2 weeks later. When we walked through those gates that was my moment. When we saw Mickey Mouse, I remembered that just 2 weeks before I had said I wanted to go there and then I was there. We made it happen.  That was when I realized that I could make my life with Trek amazing and powerful. We have not stopped travelling since then and that was 4 months ago. We just keep things slow and listen to Trek and his needs, and we come and go accordingly. He thrives in warm, humid areas so we try to stick to those.  He is a Maui baby to the core!

How do you maintain your positivity and be an available mom for the other boys when you’re struggling inside? I know no parent is 100% on their “game” all the time. You have some extra challenges most of us don’t. How do you handle those moments?

Trek keeps us in line! He cries the saddest cry when any of us cry, so we have to keep it together around him, it is so sweet how tender he is. I have never really had anything majorly bad happen to me in my life before this, so I did not really know how I handled pain. When I was in labor and giving birth to Trek I did not have any drugs, I gave birth to him in our driveway!!! When I was in labor I did not want anyone around me, even Jarrett. That really surprised me. I am kind of that way with this pain with Trek dying. I cry to Jarrett often late at night when we are talking and watching our boys sleep, but I have my best times of mourning really late at night when I am up all alone. I also write out a lot of my feelings on the blog. It seems like such a strange place, but it is my way to share my journey with my friends and family and let them know how I am doing, and it brings me so much healing.

I also have Jarrett home with us, and he has taken over all of the cooking, cleaning, and helping Conner and Peyton. I have to hold Trek around the clock and I have to hold him in a certain way so I don’t squish his enlarged organs, so I am pretty much useless for anything but snuggling all 4 of my boys! Jarrett being there to help me has given me the space and time to mourn and really soak up Trek. Jarrett always encourages me to nap with Trek and makes sure I have lots of yummy food to eat. He is the most supportive and caring person I have ever met, and I am so thankful to have him as my partner.

How do your other children handle Trek’s illness? Are they aware of the ultimate outcome?

We have let Trek’s situation play out slowly and naturally with Peyton and Conner. They knew something was wrong because he kept going to the doctor. Once we started travelling it was less obvious since he has no medical equipment, but then they started asking things like when was he going to learn to walk. We just answered each question and added no more.

Peyton is old enough to ask “why,” and his questions over the weeks eventually led to asking us if he was going to die. Conner found out from Peyton, and I will never forget that day.

It was Trek’s 1st birthday, April 11, 2012, and we were celebrating it with just us 5. We all cried and cried. It was a very hard day, but since then they have really reached out to Trek and work just as hard as Jarrett and I to make each day special. They even willingly smile in all of the millions of photos I take now!

Do you have any tips for other parents having to deal with a serious illness in one of their children?

Not really. It is awful and pure hell on earth. I wish the world’s design did not include a child dying, it is unbearable. I just want to cry and scream with and for any other baby and their parents that will not get to live out their life. I guess the only thing I can say it to listen to your heart and then follow it, the mommy and daddy of a sick child is the only one who will know what’s best for their little treasure.

Looking back are there are any choices you wished you had made differently?

No, not one. Things that used to seem like a big deal are nothing to us now. The only thing we hold ourselves accountable to everyday is loving Peyton, Conner, and Trek and each other. Nothing else matters.

Aside from Trek’s condition and the challenges created by that, how has traveling been as a family? Would you recommend it to other families, and why or why not?

Haha, it is hard to get used to spending 24 hours a day together! We kind of worked up to it since we sold our TV and most of our possessions last fall about 2 months before we were going to leave for Thailand. That started the sorta painful bonding of our family! After just staring at each other for a few nights, we started playing board games and eventually we all became best friends. Now we cannot stand to be apart even if someone has to run to the grocery store, we end up all going, we have so much fun together.

And yes I would recommend family travel, but I think it does not have to only be full-time travel. I think it could even be in your own house. Travelling to foreign countries is an overdramatic way to clear your head and time for just the current moment, to really live and feel the day and love those around you. If you can master that same skill by just playing a game of UNO or camping in the backyard then go for it! Travelling is about awakening your senses and spending quality time with those you love the most.

I think everyone should live every moment of their life that way by finding out what makes them alive and then doing it immediately. Life is too short and precious to wait even 1 day.

On a lighter note what has been your favorite foreign destination so far? What other places are high on your list?

Disneyland of course! And the magical, slow, beach life of Utila, Honduras. We originally planned to go to Thailand and cancelled the trip when Trek was diagnosed. We wanted to travel closer to America to try it out first so we went to Central America for 3 months. Now that we know we LOVE travelling and Trek does amazing, so we have decided to go to Thailand and continue this journey with Trek. We bought one-way tickets, we have high hopes for Thailand. We all can’t wait to show Trek the world!

You can follow the Ingrams’ journey through their website at www.oursonnylife.com.  A family member keeps people informed about fundraisers for Trek, which you can also use to donate to the family, via www.babytrekatlas.com. Jarrett’s site is www.jarrettingram.com.

Update:  On 21 June 2012, Trek died while surrounded by his loving family in Thailand.  His mom wrote about his final moments on their blog.

2014 Update: Chelsea recently announced that she is pregnant with another baby, and testing has confirmed this child does not have the same genetic disorder that ended Trek’s life prematurely. We are so happy for them!