Profiling SMARD: Evan’s Story

Evan’s Story (excerpts from a presentation given at a conference)

 Evan, our 7 year old boy, is everything we always wanted in a son. He is absolutely adorable with the cutest toothy grin. Most days he is happy-go –lucky and gets tickled by the littlest thing. He makes everyone around him smile too. I lie down next to him at night and he shares from his heart what he has been mulling around in his mind. Yes, I have a lot to be grateful for. This picture of Evan is a few years old, but I have always loved it because he looks like a typical kid. In some ways he is and in many others he is not. He is the little boy I always wanted . . . and a lot more of what I didn’t expect.

After being married a year, I couldn’t wait to have kids and thankfully, Carl, my husband felt the same. When I finally got pregnant, I felt like all my dreams were coming true. My pregnancy was relatively uneventful except for bleeding all the way through the first half. Since the doctor wasn’t concerned, I wasn’t either.

On July 24th, 2003 we had a little 5lb 14 oz baby boy named Evan David. He was the best baby and slept most of the time. He hardly ever cried and when he did, he had such a soft sweet cry. No one believes us, but he started smiling at 2 weeks old. All of our friends were jealous. 

I loved being a mother! Yes, those first few weeks home were exhausting, but I didn’t care. I did all the things I had been waiting to do as a mother. Dress him up in cute clothes, take him to church and show him off and just be called, “Evan’s mom”. Then something happened that made things unexpectedly stressful. Evan, at three and a half months old, decided he didn’t want to eat anymore. He would go 8 hours or more without wanting to nurse. The doctor suggested trying to feed him with a syringe filled with milk. He would just spit it out. After numerous Dr.’s appts and tests, when he was three and a half months old, one doctor finally noticed that his breathing wasn’t right. We found out that his liver was pushed up into his lungs. He wouldn’t eat because he was having to choose between that and breathing.

Immediately, we were admitted into Children’s hospital with surgery scheduled right away. Looking back I am glad that we found this when we did because I know Evan would have stopped breathing soon after that. The nurses and doctors reassured us that once he recovered from surgery we would go home and live a normal life. They predicted he would be in the hospital about a week. This wasn’t so bad. Just a little bump in the road and then we could go back to living our life. Things, however, turned out very differently than anyone had expected.
When Evan got out of surgery, he was taken off of the ventilator. After being off for 16 hours, he crashed. No problem, he probably just needed it because of the surgery. So, they waited a week and tried again. Once again he crashed. Every time they tried to take him off the ventilator he turned blue. At this point we had been in the hospital for a month and were beginning to wonder what was going on. We didn’t want to admit it out loud, but we were starting to notice some other things that weren’t quite right. His toes wouldn’t move and his fingers were curled up all the time. The OTs and PTs from the hospital came in and said he wasn’t meeting milestones that he should be at this age. I wanted to attribute it all to him being tied to the bed so he wouldn’t pull his tubes out. But deep inside I knew that really wasn’t the reason. That’s when the battery of tests began. Evan was tested for things like Polio, Botulism, West Nile Virus and Spinal Muscular Atrophy – all which came back negative. By this time Evan had been intubated on the ventilator for 6 weeks and we had to make the really hard decision to put a trach tube in. That felt so permanent and final.

We stayed in the hospital for exactly 3 months (54 days of that in the ICU). Our son came home a very different child than when he went in. My dreams and expectations I had for my life and family were lost.

I now had a six month old child with tubes hanging off his body. I now had a nurse in my home 16 hours a day caring for MY child. Evan had so many doctors’ appts. and therapies. Our life revolved around caring for him. Our social lives suffered because we couldn’t go many places. I was up against insurance companies and medical supply companies and even doctors and nurses. There were days when all I could do was lie in bed and cry. There were other days when I felt anger creep up inside that my son had to go through this. Other times I just denied he was truly sick. Maybe he would get better. Afterall, we still had no diagnosis. His diaphragm was completely paralyzed and there was obvious weakness through his entire body, but maybe it was something that could get better.

Carl’s sister was doing research for us on the internet and found a condition that looked incredibly like what Evan had. There were x-rays online that showed livers that had pushed up into the lungs on the right side. There were pictures of curled fingers and toes. My heart sank thinking about this being a possible diagnosis. It was very clear in all the articles that this was a progressive disease with no cure and early in his life he would most likely succumb. Because at that time there was no way to test it here in the United States, we had to send our bloodwork to Germany. When Evan was 15 months old we finally got the diagnosis of SMARD.

Evan’s disease and our situation is what it is. There is nothing I can do to change it and at some point I had to realize that and let go of the expectations I had for my life. I can’t speak for all of you, but I know for a lot of us we have these expectations on what life is supposed to be like and then when it doesn’t turn out that way there is a grieving process. I go through the grieving process every time I see Evan lose strength. What helps me during these times to change my perspective is to think of things I am thankful for in regards to the situation.

Gratefulness – doesn’t mean I have to love Evan’s disease. In fact, I hate that my child has a disease that will make him get weaker, but I am thankful that we have had the time with him that we have had. I don’t like having nurses in my home all the time, but I am so glad we have the care that we do and that I don’t have to do it on my own. I hate that my son has to be on a ventilator 24/7, but I am so thankful for the technology so he can live and not only that, but he can live at home. No matter what we are going through there are always things we can be grateful for.

It makes me so sad that Evan’s hands aren’t able to grip anything anymore, but I am thankful for my other son, 5-year-old Andy, who willingly acts as hands and feet for Evan. By focusing on the things I am grateful for, I can change my perspective and get out from under the cloud that I could live under. Otherwise, I would be totally consumed with fear and anxiety over the future.

My life is not what I had dreamt, but Evan has been exactly what I needed. I am thankful for the gift God has given me in Evan and pray that I will be the mom I need to be to him. Despite the circumstances, Evan has been doing very well. He attends a typical 2nd grade class and absolutely loves it! His classmates and teachers are so kind to him and help him all that they can. For these things I am grateful. He is realizing he is different, but has kept his smile and good attitude and for that I am grateful. In fact one night, while he was sick with a respiratory virus, he said, “Mom, I have a lot to be thankful for. I am especially thankful for God’s love and for all the things I have to help me (referring to his medical equipment). When we sit at the table on Thanksgiving, I am going to have a lot to say about what I’m thankful for.” I had to turn away because I had tears in my eyes. What a lesson in thankfulness!

God is so good and I am thankful. God continues to give me strength to deal with the unexpected and for that I am thankful.

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7 Comments

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7 responses to “Profiling SMARD: Evan’s Story

  1. what a beautifully wrote story,i felt every single word.
    Evan is such a cutie and sounds very happy and loved,and when we was pregnant planing what we wanted for them, i think thats all we ever wanted for our children.to be happy and loved.
    you sound a brillent mummy.

  2. I love this story! He is one of the older kids I “know” with smard and its so wonderful to hear that he is so sweet and happy and thriving! I think thats the hardest part of the whole smard diagnosis-is the unknown, and the not knowing what to expect or for how long. I hate that part. So to see Evan in 2nd grade and loving life and grateful for his machines, and his everything, that just makes me tear up and hope the same for Presley. Wow, what a blessing these children have been to our lives! I would so love to have Presley be able to do more, and be more independant. But at the same time, I never ever would want to live with any other perspective than what I have now with what we have gone through. I would love for her to be healthy AND have that perspective…..hmmm, guess ya cant have both ways. Thats how we learn. Everything these kids do is a miracle, every day is a miracle. He is so darn cute in ALL his pictures holy moly!
    I also bled through my 1st 13 weeks with Presley, and with this one I have bled up until 25 weeks. Hoping it does not start again. The doctors dont know a reason-I cant imagine how it would be related to smard but at the same time I look at every difference between me and a “normal” pregnancy and baby and wonder if it plays any role. Now hearing that you did makes me wonder….then again, I have pregnant worried brain…..
    Thank you for sharing Evan’s Story! He is so sweet! And he inspires us all! And you as a Mommy inspires me especially! And the faith you have and trust in God has helped me in our own situation as well. So thank you!
    I wanna be like you!! 🙂
    You are amazing!

  3. Mindy and Lidia, thank you for your sweet comments! Evan is such a special child in so many ways, as I know your little ones are too. I am glad that he is an encouragement to you as far as seeing an older child with SMARD. We have tried to let him do as much as possible and experience as much as he can. Over the summer we got him and his vent on a real roller coaster at an amusement park. I was SO nervous, but he did great and wanted to ride again 🙂 Our kids are fragile in one sense, but in other ways they are so strong and brave!
    I love hearing all the things your kids are doing! They all have made so many accomplishments!
    Erika
    http://www.caringbridge.org/visit/evanweise

  4. Lauren O.

    Erika,

    I am a nurse from Pittsburgh PA and I care for a child with SMARD. I really enjoyed reading your blog on Evan. I can understand where you are coming from with the nurses being in your house 16 hours a day. That must be really hard. From the flip side, I hate it when I am in someone house using their facilities and invading the territory when I know how hard it is to have strangers in your home constantly. To me this is not just a job. It is my duty in life to care for children. Kind of deontological I guess. But I hope that your nurses have the same passion and love for your child as I do with the child I care for. I see him 4 days out of 7 and when I am sick I miss him and when I am home I get scared because I do not hear his ventillator. I wish the best for you and your family.

  5. Lauren,
    I am so glad to hear that you love what you do and have a good relationship with your little patient! Yes, it is hard to have nurses in our home so much, but we are so blessed to have the nurses we do! Our day nurse is with Evan 53 hours a week. She goes to school with him. They really have a lot of fun together! Our night nurse is here 6 nights a week and she is exactly what we need. We thank God everyday for these kind women who take care of our son! I’m sure the family you work with is just as thankful! Keep loving on that little boy 🙂

  6. Lisa

    Erika,
    Evan is such a handsome little guy, and oh, such a gorgeous smile! I agree with Mindy, he truly is not just an inspiration to everyone in his life, but also to the rest of us parents with younger children afflicted with SMARD who hear how Evan loves life and is even thankful for the equipment that helps him live. I have a love/hate relationship with all this stuff ( the vent, suction machine, etc.) and I always wonder what Silas will think about all of it if he’s old enough to realize what exactly this stuff is for. Its a bit of a relief to hear that Evan is thankful for the equipment instead of angry that he has to be attached to it 24.7.

    My experience with Silas during the diagnosis stage was VERY similar (almost right down to the amount of time Evan stayed in the hospital). There were days I was relieved they didn’t find a diagnosis because I kept saying to the neurologist “ignorance is bliss” and as long as we had no diagnosis the hope of Silas getting better or growing out of “it” was still kept alive. So just like Lidia, I too feel every word of your experience there.

    I also know what its like to be on the phone constantly with insurance companies, ironing out “THEIR” mistakes, calling doctors, pharmacies, medical supply companies, having a constant stream of people in my house(nurses, speech, OT, PT, RTs)… some days I feel like I’m going to lose my mind and just want the door bell to stop ringing so I can take a 15 minute nap. Its draining, to say the least, but like you know, worth every second, because its for your child.

    My heart melts hearing that Evan rode on a roller coaster and attends a typical 2nd grade class. This is outstanding and I’ll say it again, truly an inspiration. Its incredible stories like these that allow me to breathe a little easier that we will have a future with Silas and that we don’t necessarily have to take things “one day at a time” like we did when Silas was in the hospital.

    You have done an awesome job mothering (is that a word?) Evan and I can see in the photos that he is happy and feels very loved which is probably more than many “healthy” children will ever feel in their whole lives. Thank you for sharing your handsome and sweet little guy Evan with us!

  7. Mary Norwod

    Erika,
    Just checking in to see how things are going with your family. Thinking of you and praying God’s richest blessings! Love from Indiana 🙂

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