“Sometimes the strength of motherhood is greater than natural laws.” -Barbara Kinsolver Today is the first mother’s day to pass in which my mother has three children on earth. Seven months and five days after Michael left. My mother is strong. That is not something new that I know. It is something I’ve always known… but that strength in these past seven months and five days has far surpassed any strength I’ve seen. No mother every things, “…and when that mother’s day comes after my 31 year old son dies…” No.. it is not the…
Cystic Fibrosis
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Most Topular Stories
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A Mother’s Day- 7 months and 5 days later
Breathe. Love. Run13 May 2012 | 6:37 am -
Home Again
My journey with Cystic Fibrosis12 May 2012 | 11:04 amI got home around 8:30 last night. The hospital stay was pretty uneventful. I had the PICC placed on Tuesday, and Wednesday they had to pull it out 4cm. Apparently the home health company has a requirement and though the PICC team was OK with the placement, the home health would not see me unless it was pulled out a bit. I was honestly expecting way more than what it was with the pull out. I never had them do it before. She basically did a dressing change and just pulled it out some. How ironic that THAT is my biggest fear with dressing changes. Them… -
Conner’s 9th Birthday
Not so bright & Shiny19 Apr 2012 | 12:27 amSpent the morning at Opening Baseball ceremonies for Hunterboy… Spent time at home together, the 4 of us…then up to the cemetary we went. Conner’s grave…22 red balloons to send Hunters big idea to heaven… Little bags filled with little bites of Angel Food cake, each bag labeled to a family member we love in heaven, that way each get to celebrate with Conner. Oh what a great idea hunter! with mommy… With Daddy… Off to heaven they flew! Straight to the one we love, cherish,… -
untitled
Nathan's Fight14 May 2012 | 8:39 amI don’t have any updates on the pediasure situation. The durable medical company said WIC usually covers pediasure until the age of 5 if accompanied by a letter of medical necessity. We don’t have WIC anymore. They (durable medical) put the order through and are in the process of trying to get it covered by insurance. Thank you to everyone who mailed me pediasure and/or pediasure coupons, this is a tremendous help. I am sitting here very tired today, burning discs for clients, loading image galleries, responding to emails, diapering children, yawning, stomach… -
Hollow Inside
Confessions of a Cyster26 Apr 2012 | 8:14 pmHello out there! Hello? Is anybody out there? It's certainly been a while. I was asked twice today for an update, so I figured it was a fine time to dust off the keyboard and write a little. Life has been busy. Life is always busy, so this isn't really new. I've been traveling a lot for work, with a fun family vacation to Florida thrown into the mix. We went to the Gulf Coast of Florida again this year. It was a great time! The week I got back I traveled to Wichita, Kansas for work and got to meet up with Justine K., a recent (1.5 year)…
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Breathe. Love. Run
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A Mother’s Day- 7 months and 5 days later
13 May 2012 | 6:37 am“Sometimes the strength of motherhood is greater than natural laws.” -Barbara Kinsolver Today is the first mother’s day to pass in which my mother has three children on earth. Seven months and five days after Michael left. My mother is strong. That is not something new that I know. It is something I’ve always known… but that strength in these past seven months and five days has far surpassed any strength I’ve seen. No mother every things, “…and when that mother’s day comes after my 31 year old son dies…” No.. it is not the… -
Rockstar Ronan
7 May 2012 | 8:05 amLife is a funny, sad, painful, weird place sometimes. I want to take the time today, 363 days after Rockstar Ronan left this world to tell you about my experience with this little boy. I was in the hospital for the better part of January 2011-June 2011. Many of you know that, so the details are irrelevant for the purpose of this story. I found a blog about a little boy, Ronan Sean Thompson and his mama, Maya and their fight to save Ronan from Stage IV Neuroblastoma. I began reading this blog in January. I read it every day and bargained with the world to save this boy. His free spirit… -
That Friend
3 May 2012 | 6:56 pmIn my life, I cannot say that I have had a whole lot of friends that I could call at any hour of the day and know without a doubt that they would be there… in my life today I have that friend. She has been interwoven into the fabric of our family… another place setting at the dinner table, another person around the house, another opinion we look forward to hearing, a gentle loving true soul that we just happened upon… the colliding of worlds and for the better. This week was her birthday celebration… a week long birthday celebration at that. When I picked Alejandro up… -
A Grief… My Grief
26 Apr 2012 | 5:53 pmLife takes these unexpected twists and turns and being along for the ride, I have to lean into them in order to survive. My brother has been gone almost seven months. About two months after he died I lost who I thought was my best friend. She just didn’t get it. She said, “You weren’t even that close. Aren’t you moving on?” Our friendship ended. Just a few months ago someone else told me, “I know you are struggling. He’d want you to move on.” Could you? This is the last day I saw Michael. It was two weeks before he died. I expected to see him… -
Who I Am
24 Apr 2012 | 5:29 amNo matter where you travel, the miles between your front door and your destination… as long as you are along for the trip, you remain you. This happens to be okay with me today… many years ago it was not. My trio recently returned to rainy Connecticut after a much needed getaway along the shore of country not ours. Spontaneity struck, and we found ourselves nestled on fully packed airplanes with activities in tow to arrive here. …and the sun just about to rise above the beautiful sea is soothing for a soul that needs it. And the littlest one found himself awed by the great…
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My journey with Cystic Fibrosis
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Home Again
12 May 2012 | 11:04 amI got home around 8:30 last night. The hospital stay was pretty uneventful. I had the PICC placed on Tuesday, and Wednesday they had to pull it out 4cm. Apparently the home health company has a requirement and though the PICC team was OK with the placement, the home health would not see me unless it was pulled out a bit. I was honestly expecting way more than what it was with the pull out. I never had them do it before. She basically did a dressing change and just pulled it out some. How ironic that THAT is my biggest fear with dressing changes. Them… -
Self Perception
8 May 2012 | 3:42 pmDon't worry this isn't another weight related post. This one is all about the inside.With Kalydeco's wonderful results and the start of phase 3 for Vertex 809 (combo med for those with DF508) with amazing results in phase 2, its a possibility that we could stop CF progression where it is right now in some patients and perhaps even reverse some of the damage. This is a huge step in the right direction to make CF much more manageable. But it brings into ones mind some thoughts that wouldn't be there otherwise. For me these thoughts always played a part deep down in my… -
Friendships
6 May 2012 | 5:00 amHaving CF makes making friends a bit more difficult. I can't do the "normal" thing, make a friend and have it turn into something good. I have to be careful because not all people want to deal with someone who has a life threatening illness. And its difficult to start a friendship when you are not always able to be around. I can't just drop everything and go out on a Saturday afternoon. If I feel shitty I can't go. If I haven't had a treatment in a while I have to make sure I do one before going. Then there is the explaining why you can't do… -
Another Horse Post
5 May 2012 | 1:42 pmHow many times have I written about horses and getting back into riding? Too many to count right? Well sorry but here is another post.I can't tell you how much I MISS riding horses. Doing volunteer work has really been great because I get to groom the ponies once a week and I feel like I am getting used to being around the animals again. But it still kills me when I see friends post show pictures. I miss it. I miss it so much it hurts. When I was down in PA over this past weekend, I was able to get my riding stuff from the attic in my brother's house. -
Hospital Shopping
4 May 2012 | 7:03 pmI haven't been out shopping for new things for hospital stays in a long time. So after I dropped my step daughter off at the train station I drove myself to Target. I needed some new tank tops and some under garments. Luckily all were on sale. I also hit up the clearance rack and got a couple of cute, non hospital shirts. I don't know about you all but I hate wearing small under wear when locked up. I feel like I get so many more wedgies lol. So I got myself some new boy shorts and a comfy bandeau bra that I can sleep in. Right now I have been wearing a…
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Not so bright & Shiny
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Conner’s 9th Birthday
19 Apr 2012 | 12:27 amSpent the morning at Opening Baseball ceremonies for Hunterboy… Spent time at home together, the 4 of us…then up to the cemetary we went. Conner’s grave…22 red balloons to send Hunters big idea to heaven… Little bags filled with little bites of Angel Food cake, each bag labeled to a family member we love in heaven, that way each get to celebrate with Conner. Oh what a great idea hunter! with mommy… With Daddy… Off to heaven they flew! Straight to the one we love, cherish,… -
breath by breath…
28 Mar 2012 | 12:14 amWell there she is! 25 weeks along with baby #4…and if you didn’t know already, she’s a…well “she!” I think after two ultrasounds both of which there was no male parts flashing us, which quite frankly we’re used to seeing living in a home of all boys and me, and even zooming in on the area in question and both tech’s telling me that it is a girl…I think I finally fully believe it. after the first ultrasound I believed it, and it really just made sense with all that had been going on and all that had been whispered to me in silence, that it would be a girl…but still… -
The color of panic AND love
24 Feb 2012 | 12:01 amI was about 11 or so weeks into my pregnancy when it happened. I woke up one morning in December, it was probably 3am and I felt off. As I began to wake up more and more, I realized that I was wet. In my half awakeness, I stumbled to the bathroom for the usual potty break, but to my horror all I saw was blood. lots and lots of blood. I had to change even my pajama pants, I was drenched. I was freaking out. I got back to bed and realized the sheets were soaked as well, this I knew was not good. it wasn’t just spotting. I instantly started to let my mind roll to wherever it wanted to go,… -
Our sweetest Valentine…
13 Feb 2012 | 11:07 pmI was sick much of last week, so I haven’t updated yet…sorry so slow. I can’t wait to share this part of the story… So starting back when I was pregnant with Bradyn in 2008, I love to exercise, and I remember exactly where I was when I heard one of those God whispers. I was walking the lake by my home, I had recently found out our 3rd bundle of blue was on his way, I was rounding the corner on my walk over by the hospital and I was overcome with these words “you will have a daughter.” 5 simple words. and boy was I confused! we had just found out that we were expecting a son, and I… -
Part 1…
7 Feb 2012 | 1:50 amLong before losing Conner, I would hear from God in the stillness of my heart. I’d be out on a walk, or in my car quiet, or even just before falling asleep, I’d get little words of comfort, or reminders whispered to me, and I always felt they were from God, but part of me always wondered if I had made it all up. imagined it. my relationship with Him wasn’t what it is today, it’s been a journey of learning how to trust, be silent, believe even when it doesn’t make any sense, and having faith that He truly has my best interests and desires in mind all the while. Life throws curve…
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Nathan's Fight
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untitled
14 May 2012 | 8:39 amI don’t have any updates on the pediasure situation. The durable medical company said WIC usually covers pediasure until the age of 5 if accompanied by a letter of medical necessity. We don’t have WIC anymore. They (durable medical) put the order through and are in the process of trying to get it covered by insurance. Thank you to everyone who mailed me pediasure and/or pediasure coupons, this is a tremendous help. I am sitting here very tired today, burning discs for clients, loading image galleries, responding to emails, diapering children, yawning, stomach… -
Orchestrating for Pediasure
9 May 2012 | 9:14 pmAs I briefly mentioned before, we’ve been having issues with purchasing Pediasure out of pocket. The bottom line is: Nathan currently needs Pediasure. All effort to transition him to a diet consisting primarily of solid food is in vain. And I’m not messing around any more with cutting him off of Pediasure or battling with him to hate food even more. The few months that he was on whole milk alone, his weight dropped. We decided that Pediasure is what’s currently working for him. If he doesn’t eat and get the amount of calories/nutrients he needs then we are… -
Flats and Handwashing Challenge
8 May 2012 | 5:43 pmI’ve never used flats in my diapers before, we really loved prefolds but sold our prefold stash when Teagan grew out of the red edge GMD prefolds. At that point Teagan took over our entire pocket stash (mostly BG 4.0, Thirsties, and Happy Heiney’s). So for the challenge, I picked up a 10 pack of Gerber prefolds and will cut some old flannel receiving blankets to a square. Because if life isn’t interesting enough. -
little golfer
7 May 2012 | 7:49 pmLife is pretty busy lately, in a good way. Although I’m feeling exhausted, it is all for good things…working for my kids, working for my business. At the same time, I am feeling alot of anxiety but I am trying not to worry about tomorrow. Ever since Nathan’s last clinic visit, when he lost a little weight, I switched him back to Pediasure from whole milk. This expense is killing us, and I finally found the phone number to Nathan’s case manager so I reached out to her this morning and hopefully I will reach some sort of solution by tomorrow. I feel terrible… -
Keeping it all together
5 May 2012 | 8:22 pm…or failing miserably. I’ve been told that the full moon tonight will be a supermoon, appearing unusually large and bright. I’m blaming my children’s behavior on this occurrence. Although there may be no correlation between lunacy and lunar phases, my mother in law, a psychiatric nurse begs to differ. I’m praying with the passing of this full moon, so passes the craziness I’ve seen in my children all day today. ***** Keeping track of Nathan’s medications and treatments – my mind is overloaded with things I need to do as a homemaker, things I…
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Confessions of a Cyster
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Hollow Inside
26 Apr 2012 | 8:14 pmHello out there! Hello? Is anybody out there? It's certainly been a while. I was asked twice today for an update, so I figured it was a fine time to dust off the keyboard and write a little. Life has been busy. Life is always busy, so this isn't really new. I've been traveling a lot for work, with a fun family vacation to Florida thrown into the mix. We went to the Gulf Coast of Florida again this year. It was a great time! The week I got back I traveled to Wichita, Kansas for work and got to meet up with Justine K., a recent (1.5 year)… -
I Won...I Won!
17 Feb 2012 | 8:35 pmI was so excited when I learned that my dear friend, Jenny, author of My Life as a Livingston recently chose me for a Liebster Blog Award. She chose ME! I adore Jenny's writing style, her sense of humor and the honesty that pours off of the page with every post. She is absolutely one of my faves, so I felt honored to be selected as one of her faves, too!Liebster is a German word that literally translates to "favorite", "dearest" or "beloved". By one blogger giving it to another, they are essentially saying, your blog is a favorite of mine. The rules of the… -
Loss
22 Jan 2012 | 5:14 pmWhat a week...full of loss and mistakes on many different levels. This week has left me with a heavy heart and a questioning soul. First, a quick health update. I am feeling really well. Last year I participated in a clinical trial for the COPD drug, Spireva. I was on the drug for 10 months. In December I was called by my research coordinator asking if I could come back to participate in another little study related to the first one. There were two arms of the initial Spireva study...one for people with CF and one for people with COPD. It turns… -
What Would You Do?
14 Dec 2011 | 8:42 pmI've never really shared information about the health of my kids on here before, but I feel like I'm at a point where I need to make some decisions and I'm looking for some advice.Both of my kids...Emma (age 9) and Jacob (age 5)...have had troublesome lungs their entire lives. Prior to having children my husband was genetically tested to see if he was a carrier of CF, which he was determines not to be. At that time they only had the test that identified 83 of the most common genes. Now, they have a test that can identify more than 120 genes. I had always been fine with… -
Why I Fight...Blogger Challenge
4 Dec 2011 | 7:35 pmWhy I Fight for a Cure for Cystic Fibrosis...When I was born in 1975 the prognosis for Cystic Fibrosis was very bleak. I was always painfully aware of the current life expectancy and I always had a hard time envisioning life beyond that age. Yet, I know that I have shared here before that I feel like one of the "lucky one's". I have worked hard at staving off CF and for the most part it has steered clear enough for me to reach milestones that my parents once thought would have been impossible. The current life expectancy is 37.4 years. I turn 37 next…
