About Me

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I am a below knee amputee. More importantly, I am also Mommy to two boys, a very active 10 year old (Robby) and an mischievous toddler (Timmy). I have learned that being a parent with a disability can create some unusual and sometimes humorous situations. This blogger is available for hire! Let's talk and learn how a blog can expand your business.

Friday, February 08, 2013

No Kisses

Yesterday morning my heart sank when Robby whispered, "No kisses today, okay" as I dropped him off at school. I'm proud of myself for simply saying "okay" instead of wrapping my arms around him and sobbing. I think my seemingly casual response demonstrates growth!

While I looked calm on the outside, I'd be lying if I didn't admit that I was deflated by his request. He used to offer me huge hugs before I left each morning. Yesterday I was asked to refrain from kissing, but I'm sure that in the not so distant future he'll prefer I stay 10 feet away and avoid eye contact. Why does he have to grow up so fast?

Always glutton for more punishment, I decided it would be an apt time to work on a project I have been avoiding. I grabbed some boxes, a handful of trash bags, and headed into the abyss. I knew it was time to tackle weeding out Robby's closet and toy box.

I hate going through Robby's clothes not because I dislike the work but because of the emotions that surface when I realize how many of his things he has outgrown. The now outgrown clothes are a concrete reminder that he is growing up. Regardless of what I promise myself, I always end up wiping away tears as I try to push away the memories that surface.

Trying to separate from the flooding memories, I tried to approach the closet with an automated mentality. I worked quickly, simply separating clothes by size and refusing to look at the garment. I knew that if I stopped to look at the clothes I would start thinking. In this situation, I knew that thinking was a bad thing!

After working for two hours I successfully cleaned out his closet, toy boxes and bookshelves. I  compiled four bags of clothes and numerous boxes of toys and books to donate. I felt a slight pang of sadness when I realized how many of his clothes were outgrown, but the now spacious and clean closet provided some solace. Satisfied with a job well done and proud of myself for not crying, I put on my coat and headed over to Mr. Bill's for a visit and some chocolate. (I keep my chocolate in his freezer to thwart bingeing.)

Robby and I never talked about his "no kiss" request but he did smother me with kisses when he came home from school. I suspect that his growing up will be difficult for both of us. No matter how many clothes he outgrows, he will always be my little boy!

Thursday, February 07, 2013

Information Overload

My mind has been racing ever since I received the news that I have been matched to provide a bone marrow donation. While I am excited to be able to make a concrete difference, I have to admit that I am now becoming nervous. While I worry about the side effects of the medication, most of my fretting is focused on the recipient. I want this transplant to be successful. I know it is illogical but I can't help but feel responsible if the donated marrow does not work.

Yesterday I met with a donation coordinator and the physician who will oversee my case when I  passed the physical. The green light was given and I will begin the daily injections on Monday with the harvesting of the cells scheduled for Friday afternoon. Until then, I am going to do my best to produce the strongest cells possible!

Robby has been hearing bits and pieces of our conversations about the donation, and we knew that we needed to talk with him. I don't want him to be scared by the side effects that I could experience next week, but it is important that he understand why I am sick. Scott and I huddled and came up with a game plan on how to explain everything to Robby. Last night after dinner we sat Robby down and we began our well-rehearsed speech. I stressed the importance of helping others even if you don't know them.  Scott took the lead in explaining the process of the donation. We both tried to convey that I might not feel well for the next few weeks, but that I'll be better soon and that it is important to help somebody else even if it isn't convenient.

After ten minutes of thoroughly saturating Robby with information, we ended our conversation by asking if he had any question.  "Yes Momom, I have one question. Can I go play with my Legos now?" We either did a great job explaining bone marrow donation or we overwhelmed him with too much information. I lean towards our being over-zealous.  Again.

Wednesday, February 06, 2013

I Am A Match!

Several years ago I registered and submitted my DNA to the bone marrow registry. While I knew that the chances of being selected were slim, something compelled me to fill out the forms. A few moments of my time and some cheek cells seemed like a small sacrifice to potentially change a life.

Since I signed onto the registry, I have been contacted twice to submit additional blood work. I never heard anything after the first request so I assumed that I was not an adequate match. Last week I received another order for additional blood. I provided the sample and expected again to hear nothing about the outcome.

Yesterday afternoon I received an unexpected phone call informing me that I had been selected as a potential donor. I am in awe when I think about the odds involved in finding a match for bone marrow. It is extremely exciting and humbling that I might be able to provide health restoring cells to somebody in need. Who knows, this transplant might even save their life!

I keep thinking about Robby and how I would feel if he needed bone marrow. I love him more than words will ever convey. I would be devastated if he became ill enough to necessitate a bone marrow transplant, and I would hope that somebody would step up to help. I'm sure that the spouse, siblings, friends, parents and/or children of the recipient feels the same optimism, hope, and despair that I imagine I would feel. As a parent of a child in good health, I feel obligated to help even if I don't know the recipient.

Today I go to complete the final paperwork and to plan the donation process. I have been asked to donate through a method known as PBSC, which I'm delighted is non-surgical. I will be given an injection of a medication every day for about a week. This drug will increase my body's production of "blood forming" cells. After several days I will be hooked up to a machine and a needle will be placed in each arm. My blood will be removed from my body, run through the machine to collect the needed cells, and returned back to me in the other arm.

I have been warned that the medication poses some "potentially intense" side effects, including headaches and muscle soreness. My donation coordinator told me that I may feel like I have the flu (minus the fever) during the week of the donation. As far as I'm concerned, the side effects are simply temporary inconveniences compared to the devastation that would be felt if someone's loved one died because I was too scared to help.

I'm excited about this amazing opportunity to make a real difference in another person's life. My imagination is running wild as I conjure images of the recipient and their family. Maybe I'm helping a young child? Or I could be matched with another Mom like me. Despite the intrigue, I doubt I'll ever know who is my recipient.  Until the time of the donation I want to build the healthiest, strongest cells possible!

 I wonder if cupcakes help fortify blood production?

If you are interested in signing up for the bone marrow registry, visit www.bethematch.com

Tuesday, February 05, 2013

Wish I Could Help

During the past week I have been contacted by five people who have just scheduled an amputation. Although each situation varies, there is a common theme to the emails. All of my new friends are apprehensive about the surgery and recovery and were seeking input about how to cope in the weeks leading up to the surgery. (Okay, perhaps apprehensive is too light of a descriptor. It is probably more apt to describe the emotions as downright terrified.)

In many ways the weeks and days leading up to my amputation were more difficult emotionally than the physical recovery after the surgery. After all, I was provided with a small pharmacy to help numb the physical pain after my amputation but had no assistance with the emotional turmoil that I experienced beforehand! Although I knew that the amputation was the best option available, as the day approached I felt like a condemned prisoner who was awaiting a sentence. I remember desperately trying to keep busy and fill the time until the surgery, trying to forget what I was facing by creating day long projects such as flash freezing blueberries and reorganizing my spice shelf.

Each situation is different, but I find that I constantly give the same two pieces of advice. First, I encourage everybody who is faced with a delayed amputation to write down the reasons for the surgery. In the midst of the pain before the surgery, I swore I would never doubt my decision. Thankfully, time has a way of tempering the memories of pain. Now when I am in the middle of an "I hate my leg day," I pull out my list and remember that I made the correct choice. I can still feel the pain that I was experiencing when I wrote my list nearly a decade ago. I'm so grateful that I took the time to create my personal amputation justification letter!

The second advice I give is to anticipate the good that will come of their decision. I will never forget the overwhelming sense of panic I felt after I set the date for my amputation. Instead of looking towards the date of my surgery, I purposely chose to look forward to six months past the date. For me, looking forward to an amputation is unnatural, but it is easy to become excited about the pain-free life that lies ahead. I tried to block out the surgery date and began to focus on how much richer my life was going to be once I rid myself of my crushed foot. Planning my pain-free life helped me pass the time, and the amputation became simply a step towards that goal instead of the Doomsday I had feared.

My heart breaks each time I receive an email or call from somebody facing an amputation. I am instantly transported back in time to the days leading up to my own surgery, and I can never forget the numbing fear that I experienced. I wish I had a magic wand and could fast-forward time to show my new friends that life can be rich and fulfilling after losing a limb. Unfortunately all I can do is listen and offer support. I wish I could do more!

Monday, February 04, 2013

TV Time

In case you haven't heard, there was a football game on TV last night. Scott is a die-hard Cincinnati Bengals fan, so it is fair to say that he hasn't had an emotional investment in the Super Bowl in decades. Surprisingly, his not having a team in the game did little to hamper his excitement during the build up to Sunday. On Thursday he emailed me a wish list of football food that he wanted during the big game, and I noticed he was spending an increasing amount of time perusing the ads for televisions throughout the week.

He hinted all week about coveting a new television. Last Sunday he began to complain of headaches as he was squinting to watch the screen. He complained about the lagging and blurring screen during action sequences. He even turned up the volume to an obnoxiously loud level in order to prove the poor speaker quality. He was anything but subtle, but I decided to let it play out and never mentioned the notion of getting a new television. I wanted to see how long he would keep hinting and how he would bring it up.

After hinting all week, Scott finally broached the subject of a new television on Saturday morning. Sitting over breakfast, he not so casually mentioned that televisions were cheapest during Super Bowl weekend. When I simply nodded and failed to respond appropriately, his shoulders slumped and he looked deflated. I was going to keep the charade going, but I felt bad for him. I finally threw him a lifeline by saying it would be nice to have a larger TV in the living room.

Within seconds he began to discuss size attributes, features and options. I knew that he was looking at sets but he certainly did more research than I thought. He had already devised a shopping list of must-have features and had narrowed the search to four stores. We finished our breakfast, piled into the car and set out to look for a new TV.

All of his careful research was quickly forgotten as soon as the first salesman started to talk. Although we had firmly agreed upon size and type, I could see my sweet gadget-loving husband start to sway to the sales pitch. I was forced to step in and play the "mean wife" card as I firmly stuck to our original plan and squelched the fully loaded, 60 inch, internet smart TV. Leaving the first store empty handed, Scott looked at me and said, "Maybe you shouldn't leave me alone with the sales people in the next store."  At least he recognizes his Kryptonite!

After a few hours of navigating the electronics minefield, we became the proud owners of a brand new television. Okay, it's two inches larger than we had planned, but apparently when a man is involved, size does matter. I'm happy that we stayed within budget (sort of) and that I was able to protect my husband from the gadget driven sales pitches.