My Views

I think this weekend we are going to embark on a family-wide news hiatus. For the sake of my mental health, I need to disconnect for awhile. Each news report feels more heartbreaking than the latter, and I find myself spiraling deeper into frustration by the moment.

A few days ago Scott found out that the father of a student is being deported. Obviously, he was living here illegally. But this "illegal" individual is also an employee, a husband, a father, a church member, and a community volunteer. He has committed no crimes except for the minor traffic violation that caused him to be pulled over by police. This family is being torn apart, and children are being left without a father.

I understand the stance against illegal immigration is strong. Knowing the faces, the stories and the hearts behind the "offenders," the deportation issue becomes more complicated. This is an issue involving people, not just citizenship. I avoid discussing and debating these issues because I respect the views of others enough to realize that my perspective will not cause an epiphany to change their hearts. But since this is my blog, I feel that it is okay to reveal that my heart is being torn apart.  I certainly know enough to realize that I don't have a solution to the situation, but not knowing how to resolve an issue doesn't absolve me from feeling empathy for those involved.

The weather is supposed to be miserable, which provides the perfect excuse to curl up in front of the wood stove and hibernate for awhile.  Timmy will be delighted to stream cartoons all day, and I'm sure I can convince Robby to watch movies with me at night. I'm looking forward to my no news weekend!

Permission to be Sad

Yesterday the weather was warm so Timmy and I were able to hang out outside for a little while.  We are still in hibernation mode, but it was nice to be out of the house for awhile. Although he doesn't have a lot of energy, he loved playing with his trains on the driveway and swinging with me on our double porch swing. I think the fresh air did us both good!

I can't wait until he is completely healthy again so that we can properly resume playing outside. In the meantime, I'm going to make the most of the increased cuddling and quiet time.  We go back to the doctor next Friday, and I'm hoping that we have more information about his health status. Compared to other struggles faced by families with sick children, I know that ours is mild. But sometimes it doesn't feel mild when it is your reality. I am trying to remain thankful that he is not worse and that the situation is manageable, but lately I've been feeling sad that my perfect little Hamlet isn't perfectly healthy. 

Over the past few weeks I've realized that I am an incredibly social person, which is strange because I don't necessarily enjoy talking with people. I actually think I tend towards being shy (except when I'm hiding behind a keyboard) so the fact that I miss interacting has taken me off guard. I know that this time of isolation is temporary, but it is definitely starting to take a toll on my psyche.

I really miss our adventures and play areas. I don't want my little Timmy to have an autoimmune issue. I want him to be healthy, silly and crazy active again. I don't want to fret about him not eating and being pale. I want to be frustrated that he climbs everything and explores beyond my comfort zone. I am sure that this is just a little blip in his childhood, and that soon everything will be back to normal. But today I'm tired and I'm giving myself permission to be sad.

The Impact of the AHCA on the Limb Loss Community

Monday evening the Republican leadership released their plan to repeal and replace the Affordable Care Act.  The legislation, known as the American Health Care Act (AHCA), has been received with mixed reviews by both sides of the aisle.  While some important provisions of the Affordable Care Act (ACA) remain intact, there are some noteworthy differences that will impact the limb loss community.

Dave and I (more he than I ) studied the bill yesterday in an effort to provide an accurate overview for the amputee community. Last night, after taking care of Timmy's evening routine and cleaning up Scott's birthday dinner, I managed to sneak away for 30 minutes to record a "breaking news" podcast on the AHCA. As always, our ultimate goal was to remain politically non-partisan but unabashedly pro-amputee.

An important takeaway, and an immediate but not yet solidified victory for the limb loss community, is the inclusion of essential health benefits (EHB) which were established by the ACA. The inclusion of EHB's is important because it safeguards access to prosthetic care by eliminating lifetime and yearly caps on coverage. Because EHB's are maintained in the AHCA, prosthetic users will not be subject to the archaic and many times disabling monetary limitations dictated by their insurance policy. As an EHB, prosthetic care must be covered in a manner reflective of other benefits in the policy.

 It is important to note that maintaining EHB's in the first draft of the AHCA does not mean that the battle has been won. This legislation will go through numerous revisions as it evolves. It is paramount that the community remain vigilant about voicing our support for maintaining EHB's in the AHCA going forward.  Please take some time to listen to our podcast (it is only 30 minutes long) and learn about the other aspects of this legislation. Stay informed and stay involved in the process.  In the end, this legislation will impact everybody.

Happy Birthday Scott!

Today is a special day in our family because today is Scott's birthday. Last year I turned his birthday into a week long celebration, making this year's plans pale in comparison. Of course, last year he turned 50 and was not accepting the new digits gracefully.  This year the celebration is low-key with a quiet dinner at home and his favorite chocolate cake.

Although he already received his birthday gift of hockey tickets, I have another small surprise or two ready because it isn't fun not to have anything to unwrap after blowing out the candles on your cake. Even though we aren't going out on the town, I am going to try to make today special.  Happy Birthday, Scott.  We love you!

Unfathomable Choices

The past few weeks have been stressful. Since Timmy received his autoimmune diagnosis, our family has been hyper focused in an effort to help him regain his health.  We have traded our typical adventures for home activities, a change that has required adjustment and flexibility from both me and Timmy. I have been keeping myself busy in order to avoid the anxiety and sadness I feel for my little Hamlet. 

In the middle of this chaos, I was reminded last week that we are extremely fortunate. Timmy was lucky to have received a diagnosis and he will regain his strength. This is a quick hiccup in his childhood, and it is definitely causing more angst for us than it is for him. He is only two, and he won't remember not feeling well for a few weeks or months.  Last week Scott told me the situation of one of his students, and my heart broke.

The child, only 14 years old, is facing surgery in two weeks. The surgery is imperative to saving his life, yet because of some cardiac issues the surgeons are uncertain if he is strong enough to endure the procedure. His family has been faced with a decision that I cannot even begin to fathom. Without the surgery, he will suffer excruciating pain as his body collapses upon itself, ultimately resulting in death. A successful surgery will eliminate the pain and prolong his life, but he has only been provided with a 10% chance of surviving the involved and lengthy procedure.

I look at my two sons and I cannot even imagine the grief and anxiety that has befallen that family. I remember the horrendous drive to the hospital on the morning of my amputation. As I try to imagine driving my child to the hospital for surgery, knowing that there is a 90% chance that he will not survive, I find myself emotional and angst ridden on the families behalf.  I pray that I never have to experience this impossible situation, and I find myself thankful for our seemingly trivial issues. 

Unfortunately the child knows the situation and the odds that have been presented. Again, I can't imagine being fourteen years old facing such an overwhelming situation. My heart breaks each time I think about him, which happens frequently since Scott shared his struggle. 

A Go-Fund-Me page has been started to help cover the medical costs and to minimize the financial struggle for the family during this time. If you feel inclined, I'm sure that they would appreciate your support. In the meantime, I'm going to go hug my kids a little more. I may be stressed out and worried about Hamlet, but I was reminded that his issues are minor compared to those faced by many others.