One Month

It’s been one month. A month to me has always seemed like an abstract concept of the passage of time. Why 30 or 31 days? Why 28 in only one? I can’t tell you how many days it has been since my world shattered but I can tell you that it has been one month. Maybe thats why we use them. The 11th of every month will forever have new meaning to me. It will now be a marker of the passage of time in a way that no birthday, holiday or phony reason to buy someone a greeting card has ever been. 

As I compose this entry I am preparing to finish gathering the last remnants of Maddy and my stuff from the Wallace house. In case you don’t know I live alone now. In a one bedroom apartment close to my sister. I just couldn’t spend one single night alone in the house that Madelyne and I shared as she fought rejection to her last breath. It’s a beautiful new apartment. With a smattering of new furniture and my personality splattered about it like paint on a Jackson Pollock. But one corner of my new apartment is Maddy’s corner. For now it is a little pile of pictures and keepsakes, items that we used for her memorial service. Things I have not had the energy or will power to go through yet. Today that pile will grow as I bring Madelyne’s remaining worldly goods into my new world. Eventually there will be a little memorial to Maddy in that corner. I plan to use her vanity table to display some of the items and pictures that had special meaning to her, and me. But that is a task for another abstract passage of time. 

When I am not on the cusp, or in the wake, of performing the monumental task of putting Maddy’s affairs in order I have some pretty good days. I have been amazed at how well I am able to cope with day to day living. My bereavement counselor at Hospice seems to be very impressed with my ability to cope as well. I have never been the kind of person who can be depressed for long periods of time. It’s not like I run away from sadness or anything. I still cry every day, sometimes to the embarrassment of the people I work with who walk in on my sobbing. Sometimes to the embarrassment of myself as I walk quietly in public with tears running down my face. But after the sadness passes, and it always does, I can smile and even laugh often. Work is good for me. I believe I already mentioned the outpouring of encouragement and support from our listeners. Without that I do not believe I would be handling this so well. I’m even getting back into the gym! It’s important to me that I work out. One, because I became so involuntarily skinny from all I went through with Maddy. Two, because the endorphins I get from woking out are my drug of choice. I can’t/don’t want to medicate my feelings away. Working out gives me a boost that allows me to continue processing my feelings in a healthy way. I mean really, I’m a single guy living all alone, what else am I gonna do with my free time?!?!

I am still taking life a moment at a time. I can’t yet say that the good moments outnumber the bad moments, but I can see the tide shifting that way. I have many friends and my family still keeping me busy in much of my free time. I have actually began to decline offers in an effort to be truly alone sometimes. I think it’s important that I make time to process some of the feelings I am having by myself. Today’s journey to the Wallace house will be unaccompanied. It will be good for me to have no distractions while I pack up Maddy’s few remaining items. I know that my friends and family are only a phone call away if things get too intense. So it’s like I’m working with a safety net. 

Oh, one last thing I remembered as I was reading over this in preparation to post. Yesterday my bereavement counselor said something that made a lot of sense to me and actually gave me some comfort. I have been having a little inner struggle with how well I am managing my life post Maddy. Almost guilty about being ok. He said that sometimes when we lose someone to such a long fought battle with illness we have already done a lot of our grieving before that person ever dies. That resonated with me very much. Maddy and I fought for years to get her transplant. I was half expecting her to not make it through that back in 2011. Then the almost two year fight against the rejection. Honestly, I spent a lot of that time grieving the loss of her lungs. Although I never showed it because I wanted to be nothing but positive for her. So it makes sense that I have already been grieving, in a way, for many years. This is another one of those things that does not really make the pain any less but gives a small amount of comfort, it also eases my guilt at moving along with my life so quickly. I know, I know… It’s stilly to feel guilty about trying to have a happy productive life because Maddy wanted me to. But there is no sensible way to account for un-sensible feelings. They are just there and we have to find a way to cope with them until they are not there anymore. 

Thats it. I’m going to go move the rest of my crap out of that house now. 

The Final Chapter Continued Some More

It’s been a difficult day thinking of Maddy. Things seem to come in waves these days. There are good moments and bad moments. Today had many good moments. Email’s and messages from amazing listeners who hear me break up about Maddy every time I pray on air. It never stops amazing me that so many people reach out to me with encouraging words and tell me that my struggle encourages them. 

But there are many bad moments too. It seems as if I have gone through all the stages of grief at this point. I just keep cycling through them over and over again. Here is the wiki link in case you are unfamiliar. http://en.wikipedia.org/wiki/Kübler-Ross_model. Today was a big denial day. Sometimes I just can’t wrap my head around the fact that she is gone. It seems like she is just away at a friends house and she will call or text any minute. I find myself hoping to get a text message or see a Facebook post even though I’m sitting less than 10 feet from her ashes. At one point today I suddenly realized I will never hear her call me daddy again. In that moment my heart shattered all over again! Of course that kind of thought takes me right to the anger stage. How can this be?!? 

Another crazy thought I had today was that I didn’t do enough to help her live better and longer. I know that is not true because I did everything physically possible to give her the best life and chance at survival that I could. But in the end it was not enough so what the hell?!? Like I said, I know it’s crazy and untrue but the thought came anyway. There is no stopping the thoughts. I will not numb myself with alcohol. I will not run away from my family, life and job. I will not give up and stop living. So the thoughts continue. I think one of the only ways to get them out is to write about them here. Maybe thats why I’m at it again. Maybe after writing this, tonight I will actually sleep. 

That's another thing. I keep waking up in the middle of the night and when I do I’m suddenly transported back to Maddy’s last few minutes. It’s not a dream. It’s like I am physically there. Sometimes it’s me talking to her before she died. Sometimes it’s me whaling over my poor dear daughters lifeless body. But no matter what time I’m transported to, it is always the same crappy outcome. 

Yet with all of this going on I still see God at work in my life. I know it may sound crazy but I know he is there watching over me and carrying me through this. The afore mentioned email’s and messages are one sign. The love I am receiving from friends, family and co-workers is another. Even when I’m sitting alone in my new apartment I can feel His presence. Honestly it’s not always comforting. But it’s there and that is enough. A good friend of mine asked me a little while ago if I prayed when I get sad thinking about Maddy. My answer will be my public service announcement for this little blog entry…

Many years ago I found myself fighting with my inner dialogue. You know what I’m talking about, that little voice inside your head that sometimes tells you things like “you can do it” or “you’re not good enough” or “hey climbing the outside of that building to the third floor is a dumb idea”. Sometimes it’s good to listen to your inner dialogue. But when it starts to get self destructive and self loathing it becomes a problem. Thats the issue I was having with mine. Too many "your not good enough’s". I can't credit where the idea came from but it was suggested to me at the time that I turn that inner dialogue into prayer. Instead of telling myself things I should direct all those thoughts throughout the day to God. And I haven’t stopped yet. It’s good habit to get into and I would highly recommend it to everyone. Oh, and now that I have my personal angel in heaven dying Jesus’ hair I turn much of my inner dialogue toward Maddy. It’s weird how I began speaking to her in my head the minute she left this earth. Again it does not always give me comfort but thats ok too. 

Until next time.

The Final Chapter Continued

I wrote this on Easter Sunday. I did not proof read. Was going to hold off and post all my thoughts at one time but changed my mind...

4/5/15 Easter Sunday

I have been encouraged to begin writing the final chapter while I am still processing this monumental loss and at first I thought “thats crazy!” But as I have been thinking over things the last few days it seems to make sense for two reasons. First, these blogs have always been a form of catharsis for me. I admitted to having written a blog entry for my personal blog in the days immediately preceding Maddy’s death to one of the people who encouraged me to finish this blog. After that conversation I finally posted that entry and even though I know there is little chance anyone will find it and read it I felt an immediate release as soon as I hit the post button. AS if a weight had been lifted off my chest. Second, I am finding that some of these feelings I have experienced in the last few weeks are fading away. Which I never thought would happen. Not that I don’t still hurt. Maybe it’s a numbing PTSD kind of thing that is blocking some of the worst memories. I want to process some of them before they fade away totally. Oh, and third ( I know I only said two reasons) there may be someone out there who can benefit from the insights I have gained from this horrible experience. So I want to honor Maddy by helping others deal with their pain.

So here goes. As many of you are already familiar with my blogging style I will begin by putting your mind at ease. I will not recount Maddy’s final days here in detail. Those who are closest to me have already been told of her final days. I will say that Maddy never gave up and never stopped fighting. She was and is the strongest person I have ever had the privilege of meeting. Her strength will continue on in those she touched. Now I must go on to state the obvious. 

I have never felt such pain and despair as I did the moment my darling Madelyne died. In many ways I have attempted to prepare myself for that day, but there is never any true way of knowing the depth of the pain that comes with the loss of such a huge part of your life. I felt like the earth swallowed me whole. I could hear and see what was going on around me but it was like everything was miles away. There were a few moments of clarity because I had Ethan to attend to and care for. Also Maddy’s best friends Ariel and Taylor had come back to say goodbye while we waited for them to come get Maddy’s body. They gave me some more people to worry about and try to comfort. At one point Taylor asked me how I was comforting her when it was my daughter who had just died. I told her that as much as I missed Maddy already I knew she was no longer in pain and that being able to comfort and care for her best friends was like having a little bit of Maddy to take care of again. Those young ladies and another of Maddy’s friends, Niki, who lives in South Florida have become like daughters to me. They have been a constant source of comfort as they check up on me frequently. 

It soon dawned on me after Maddy died that I do not know who I am if I am not Maddy’s caregiver. We had such a close bond that no one else shared. There was nothing more important to my world than helping Maddy fight CF and her transplant rejection. And in the blink of an eye that purpose was ripped from my life. Who am I now? What am I supposed to do with my life? Obviously I have Ethan now but fortunately he is not in a position to need the type of care that Maddy did. Happy, healthy and productive have always been the criteria I have asked my children to live by. Ethan is doing a really good job of living out that calling. I am so proud of the man he is becoming and I am grateful that it appears he will have many healthy years ahead of him. But there is always that darkness looming, that I will have to watch him fight the same loosing battle one day. I pray that day does not come for many, many years. 

But still the question lingers. Who Am I? I began a new tattoo theme on the arm that has my sparrow with Maddy’s name on it. It is an Alice in Wonderland theme because that was a very important book for Maddy and I. I have Absolem, the caterpillar from that tale, tattooed just below Maddy’s sparrow. In the cloud of smoke coming up from the caterpillar’s pipe are the words “Who Are You?” Those are the words he asks Alice upon their first meeting. That tattoo and phrase greet me every morning in my new quest for identity. Not many people have the good fortune that I had while I cared for Maddy. Yes it was a difficult road, probably one of the more difficult roads anyone could walk with their child. But on that road I had a clear and definite purpose. Care for Maddy! Now I feel as if I am a ship out to sea with no rudder, a storm raging around me and I can’t even lower my sails. There is no clear direction…

Until a few weeks after Maddy’s death. Our radio station has two on air fund raisers each year. I didn’t know how I was going to pull it off. I could barely function. How was I going to work, on the air no less, and ask for money from our listeners? John was nice enough to make the schedule without me on it. But that meant all the people I work with, who had already been bending over backward to cover for me over the last few months of Maddy’s life would have to do that entire grueling week without my support. I couldn’t do that to them, so I offered to run the board for the drive time broadcasts and pre record the evening shift, since the evening guy was scheduled to cover my mid day fund raising shift. I wanted to be part of the team and carry as much of my weight as I could in order to thank them for supporting me so much. I’m so glad I didn’t just wallow in self pity and ask for the week off. In that week of running the board and hardly speaking live on the radio. God showed me more grace than I every thought I would see. Person after person called in and made a monetary gift to the radio station in Maddy’s honor. They shared encouraging words and reminded me that I am being prayed for by many, many people that I have and probably never will meet. Knowing that my sharing of our struggle publicly and inviting God’s people to pray for me affected lives and encouraged them to sow into our little ministry gave me a sense of purpose again. It reminded me that my children are not my only reason for being on this planet. God had blessed me with the opportunity to be part of a ministry that changes lives. I will not let that ministry down. 

Thats about all I can process for this day. More next time. 

The Final Chapter

My world is shattered. The darkness seems unending but I know there is still light. Maddy lost her battle with Cystic Fibrosis on Wednesday March 11, 2015 at 6:45PM and the world will never be the same. But I know her light shines on in those she has encountered. Thank you to everyone for your outpouring of love in this terrible time. One day I will have words to complete this blog and pen a final entry but today is not that day. Today I simply come to say thank you and give you the information to come celebrate Maddy's life with us.

Memorial Information 

Memorial Gathering

Saturday, March 21, 2015

05:00 PM - 06:00 PM

Memorial Service

Saturday, March 21, 2015

06:00 PM - 07:00 PM

Blount & Curry FH-Carrollwood

3207 W BEARSS AVE

TAMPA, FL 33618

8139682231

Post IVIG

Things have not been going well since the IVIG treatment yesterday. We got home a little after 3PM and Maddy was really tired but that's to be expected. What we didn't expect was the drastic shortness of breath Maddy began to experience yesterday. As mentioned before Maddy's lungs are failing so she has been having more difficulty with shortness of breath even while on oxygen. She started having more episodes yesterday afternoon, even when sitting and doing nothing. By yesterday evening it was really bad so we called Hospice. They sent a nurse out and broke into our emergency hospice kit to give her Morphine drops. She takes these under her tongue to help fight what they call "air hunger". It helps calm her down and also opens up her airways some. She can have the liquid Morphine every two hours to help her breathe. She and I were up most of the night last fighting this "air hunger".

It's almost 10AM and she is currently resting. I do not know if this new development is a reaction to the IVIG, one of the side effects listed for the med is shortness of breath but she has never experienced that side effect before, or if her lungs have just begun to fail to the point where this is our next forever battle. In either case I am taking the day off again to stay with her and help her through this. As always prayers are appreciated.

IVIG

 

Time for a follow up and IVIG. We thought Maddy was scheduled to see the doctor this morning followed by her next IVIG treatment. But when we got to the transplant clinic this morning at 8:00 they said she was only getting her blood work done at clinic and then her IVIG appointment was at 10:30. She has been debating wether it was going to be worth going through IVIG again at this point so we had planned on asking the doctor what good it was going to do. The main reason is because traditionally the IVIG makes Maddy sick and worn out for a few days after. Dr. Haddad was nice enough to come out and answer our questions after Maddy's blood draw. He said the IVIG could hold things off for a little while longer. And it also works as an anti-infectant so it may help her fight off new infections. That's the answer we were looking for. Maddy doesn't want to do anything that will not increase her quality of life at this point. So of the doctors believe the treatment will help give her a few more good days then we are all in.

These days Maddy isn't having much luck with any food other that Ramen noodles. So we took the opportunity to run home and have a big bowl of Ramen before coming back to the infusion clinic. It's a bit of a pain but worth it. We are glad to live close enough to TGH to be able to do that. Hopefully the IVIG treatment won't take forever but it usually does.

So far things at home are going ok. We had a few problems getting her pain managed at the beginning but that has settled in pretty good for now. So far most days have been good for Maddy. Melissa has been coming to hang out with her almost every day so that I can have a few hours to get into work. My sister and sister-in-law, as well as Ethan, have come and hung out a couple times. The whole team is working together to be sure Maddy has the best care possible!

Maddy's overall outlook on life seems pretty good. As always she is taking everything in stride. So far she has not had the energy to get out of the house but after today's excursion I think she will be more open to going places. I'm hoping we can get her out and maybe to the movies or something this weekend.

As for her symptoms, it does seem like her lungs are getting a little worse every day. But the deterioration seems pretty slow at this point. Hopefully the IVIG will bind up the antibodies and slow the damage they are doing even more. The pain in her lungs is pretty much a constant but as I mentioned before the meds are mostly managing it. Her appetite is not great but she is eating at least three times a day so she's not losing weight rapidly anymore.

That's the update. We are just going to sit here in the infusion clinic the remainder of the day and see how things look from here. Thanks for the continued prayers and good vibes.

 

Posted with Blogsy

Setteling in at home

We got Maddy out of the hospital and home on Tuesday. Been trying to get everything settled in and switched over to Hospice care. There are a lot of little steps involved but it's moving along. It's very hard to think and talk about Hospice care but it has proved to be a fairly positive experience so far. With the exception of a few problems getting Maddy's pain medications to the house on time things are going well so far. I appreciate that the attention has not switch to focus on quality of life instead of simply prolonging life at the expense of happiness.

So the goal now, and I'm sure Ive said it before, is to make Maddy as happy and comfortable for as long as she has left. We are still working with the Transplant doctors to irradiate as much of the antibodies that are attacking Maddy's lungs as we can. This means that we are still giving her the oral anti-rejection meds Prograf, Cellcept, and a low daily dose of the steroid Prednisone. She is also scheduled for monthly IVIG which will hopefully bind up some more of these antibodies and give her a higher quality of life. She is no longer going to accept any treatment that will not make her life better. No point suffering if there is no cure.

Her pain level is still somewhat unpredictable. The long acting morphine is doing it's job for the most part. She gets it around the clock and it keeps the pain in her lungs to a dull 3 or 4 throughout most of the day. Every now and then she has an acute rise in pain that requires her to take a Norco. Yesterday she told me the pain is no longer a stabbing pain but a throbbing ache when it increases. I'm not sure if this is a good or bad sign but I would take throbbing over stabbing most days. The pain is now present in both lungs but her right side still has the majority of it.

Last night she had a pretty bad coughing fit. when she coughed it sounded like a big ball bearing rattling around inside her chest. We are use to hearing stuff rattle around in there from her CF mucus moving days but this was unlike anything we have ever heard. Turns out it was a pretty big mucus plug that she was able to cough up and get out in two pieces. I know this is really gross to read about but my CF community will know that this is something to celebrate. There was no blood in it so we know her lungs are not breaking down at the moment. At least not in a major way. Hopefully this will continue and she will be able to open up some more of her blocked airways so she can breathe easier.

Maddy is still very weak but has been able to be awake all day, every day, since we got home. She still can't make herself food or walk around the house too much but she spends the day in the living room and only spends the night in bed. That is a huge leap forward from last week in the hospital. She is also eating more and more every day. I'm hoping she will be strong enough to start venturing out again soon. We have her wheel chair and just got a new portable oxygen concentrator which will allow us to get out for longer periods of time. I am working on a hack to mount the thing to her wheel chair because it's a bit bigger than we expected it to be. Ha Ha.

Because she is on such heavy pain meds and is still so fragile we can't leave her alone at all. She is both bummed and comforted by this but we are all making the best of it. I'm working out a schedule with family so that I can get to work on a more regular basis and hopefully I will be able to take on my air shift again starting next week. The good thing is that the radio station is less than 5 miles away so I can be back to the house at the drop of a hat.

Not sure what else I can really share here any more. We are working at managing Maddy's pain and halting the progress of this rejection so that we can maximize her quality of life for as many days, weeks, or months she has left. She is doing well and getting stronger but she is still in a very precarious state. Any little setback could be the last setback so we are being very careful and trying to make sure she has as many good days as possible. I will not take for granted one single moment I have to be with my lovely daughter!

Thanks again for all the prayers. Don't expect many updates. If there is a crisis I will try to post something to keep everyone in the know. But otherwise we will take some time away from social media and the web to be here with and for each other as a family.