#WhyIMarch

Tomorrow I am crossing something off my Bucket List. I am going to my first march/ protest. I've always wanted to participate in one, but until now the stars haven't aligned between cause and opportunity. Tomorrow my excuses for staying home are over, and I am going to take to the streets with thousands of other activists in DC.  I am delighted that my Mom, her friend and my dear friend Tammy are going to come along in solidarity.

I am not marching against any particular person or political party. Instead, I feel compelled to lend my voice and to try to bring attention to the potential catastrophic impact on access to prosthetic care. The repeal of the Affordable Care Act is inevitable, but the details of a replacement have been hazy at best. Until Essential Health Benefit status is maintained in the new legislation, I am not going to stop pushing and fighting. This issue is simply too big to ignore.

I know that it will be crowded  and that driving into DC on Saturday will be an exercise in frustration and patience. But none of those reasons outweighs my desire to try to make a difference. I need my voice to be heard, and I can't fail to be part of ;this opportunity in my own back yard.

Feeling Better and Still Fighting

Timmy woke up yesterday with a fever but turned the corner as the morning progressed.  By lunchtime he was full of energy and had returned to his normal mischievous self. His giggle sounded especially sweet after being absent for a few days. My goodness I love my little trouble seeking toddler!

I spent much of my day trying to keep him calm and contained. While I knew that he was feeling better, I felt it prudent to keep him as quiet as possible so that he could fully recover. Of course, he had a different perspective and took my desire to keep him quiet as a challenge. Assuming that his fever doesn't return, I think today we will be good to go to resume our normal activities. 
 
On a separate note, the movement to maintain essential benefit status for prosthetics is in full swing. If you have not yet sent your emails or contacted your legislators, I implore you to do so now. The amputee community is relatively small, yet we find strength through our collective voice.  A template email, as well as contact information for every legislator, can be found on our new podcast website.

I have spent the past two days on the computer and phone, trying to create awareness and momentum for this issue. Losing essential health benefit status could be catastrophic for many in the limb loss community. Without this status, insurance policies will revert back to lifetime caps and yearly maximum benefits. These restrictions will further restrict access to devices and quality care, forcing many into wheelchairs or back onto crutches because they cannot afford to ambulate. 

Sick Hamlet

Yesterday morning I knew that my little Hamlet was sick before I even went into his room. The fact that it was 7 AM and he hadn't woken up was the tell-tale sign that we were going to have a sick day. True to my prediction, he was burning up with a fever when I picked him up out of his crib. Typically full of energy and happy, he was lethargic and flat.  My heart breaks when my kids aren't feeling well.

His fever fluctuated throughout the day, reaching 103 when the Tylenol was wearing off and lowering to 101 when the medication was working. He sporadically crawled off the couch and played with his trains, but it never lasted for long. He just didn't have the energy to play, so we spent the majority of the day curled up on the couch watching Team Umizoomi.

Just like his brother, Timmy wants his Daddy when he is sick. He was asking for him throughout the day, and the only time he really perked up and smiled was when I told him that his Daddy was home. Almost as soon as Scott sat down Timmy curled up on his lap. If Timmy hadn't been sick it would have been an adorable scene. Although it was wonderful witnessing the bond between father and son, I was saddened because I knew that my Hamlet wasn't feeling well.

Timmy hasn't yet woken up, which is an indication that today will be a repeat of yesterday. I feel so helpless when he is sick. I wish that Momom and Daddy cuddles could heal viruses, but sometimes all we can do is love him and wait.

Continuing to Push #DontExcludeAmputees

Well, after a fantastic three day weekend, today we return to reality.  Robby and Scott will return to school/ work, and Timmy and I will resume our routines. I'm sad that our hibernation hideaway is being dissolved, but I suppose it's time to face the world again. (I had ambitions of returning to civilization yesterday but we quickly decided to spend another day chilling out in front of the fireplace.)

While we never really ventured out of the house, I was productive. With Robby on his computer and Timmy happily playing with his trains, I was able to tackle a lot of work. I always feel better when I am caught up and, dare I jinx myself by admitting that I'm even ahead on some projects. 

I also spent a lot of time trying to promote our #DontExcludeAmputees initiative. With the ACA repeal in process, it is imperative that we reach out to our elected officials in Congress to demand that prosthetics remain classified as Essential Health Benefits. I'm terrified of returning to the days when amputees were disabled by lifetime caps and yearly coverage limits.

On Sunday we recorded a new podcast and updated our new Amp'd website. This project has been a true labor of love and I am so proud of the results. The tools that have been created are both intuitive to use and functional to true life issues. If you haven't yet checked it out, I invite you to do so now. (And don't forget to subscribe so that you never miss an update.)  Please, if you have been putting it off, now is the time to send your emails and make calls demanding that prosthetics maintain Essential Health Benefits status. I am imploring all of my readers to take action because inaction may result in our insurance policies dictating our abilities.

Hibernation Healing

I didn't do anything consequential over the weekend, and it was exactly what I needed. I spent the days playing with Timmy and Robby, relaxing and tooling around on the computer. I didn't tackle any of my home improvement ambitions, and I didn't fret about the yard work and clutter. Instead, I gave myself a pass from work and stress.

I don't find relaxing natural and I am envious of those who can completely unwind regardless of everything piling up around them.  I often feel both anxious and guilty when I take a break from "mom chores" for awhile. It isn't easy for me to leave the dishes in the sink for the night, or not to immediately put the laundry away. The past week had beaten me down to the point where I needed to take a break or I was going to become ill. In the past I would have tried to muddle through everything on our "to do" list with no regard to the impact on my emotional well-being. The fact that I recognized that I needed to completely disengage and relax is progress!

Today everybody is home again for the holiday. Timmy is going to be delighted when he realizes that his Daddy and Robby aren't going to school. He certainly loves the commotion and energy that comes from the full house.

I'm not sure what we are going to do today, but I want to have an impromptu family adventure. We have spent the past few days hibernating from the world. I'm  now feeling strong, more centered and less stressed than I did a few days ago. I am ready to venture out into society again and have some fun!

Feeling OLD

I am so relieved that today is Friday. I don't have exciting plans for the long weekend; perhaps the fact that I am lacking any plans at all is the reason I am excited. We have been in constant motion for so long that the prospect of just staying still and being quiet at home sounds like a vacation. There is a slew of housework that I can finish this weekend, but I am leaning towards letting the dust bunnies breed for awhile so I can veg out on the couch and watch movies with the kids.

I don't know why this week has felt like an eternity. Timmy has been a handful, testing my patience and requiring constant attention. I know that much of his behavior is a combination of both his age and to a reaction to his medication, but he has left me completely drained at the end of each day. He is lucky that he is cute and endearing, because that is probably the only saving grace keeping me from the brink of insanity.

The past few days have reminded me that I'm not a young mom. I'm middle aged, and I feel every bit of my 42 years. I can't help but wonder if I was younger, and if I had my biological foot, that maybe I wouldn't be so tired at the end of each day. Of course, both ideas are silly to entertain because neither situation can be rectified. Trying to look on the positive, at least I am able to bring experience and perspective to motherhood. Hopefully that will make up for the exhaustion!

Love him.

A photo posted by Peggy Friedman Chenoweth (@amputeemommy) on Jan 12, 2017 at 10:04am PST

He is definitely mine.

A photo posted by Peggy Friedman Chenoweth (@amputeemommy) on Jan 12, 2017 at 3:05pm PST

Hiding Mode

This week seems to be moving at a snail's pace. I'm not sure why I'm so anxious for Friday to arrive, but for some reason I'm really looking forward to the weekend. I find myself hoping for cold weather so that I can curl up in front of the fireplace while Timmy is playing with his trains. I think I just want to retreat and hibernate for awhile, and it is more socially acceptable to hide over a long weekend than it is during the work week. 

Today the weather is supposed to be unseasonably warm, which should make my little Timmy happy. He loves little more than running around outside, getting covered with dirt and exploring everything around him. I just love his little spirit, and this developmental age is so much fun. Tantrums aside, I adore watching him grow and learn as he is making new discoveries daily. Everything excites him, and through his eyes the mundane is magical.

If the afternoon is as beautiful as promised, I'm going to surprise the boys by taking them to the park after we pick up Robby from school. Today should be the perfect day for Robby to get some drone flying practice under his belt, and I'm sure that Timmy will love watching and cheering. If I can't hibernate and hide away, going to the park with my kids is probably the next best thing. When I am with them, I'm able to disconnect from all of the stresses and anxiety that normally taunt me throughout the day. I'm able to just be in the moment, and be happy. Right now, that's exactly what I need.