Forgive me (very long-sorry 'bout that)

Avatar for nora_mcl
iVillage Member
Registered: 10-30-2011
Forgive me (very long-sorry 'bout that)
8
Fri, 12-14-2012 - 12:09pm

It is the holiday season but I do need a chance to vent & hopefully get support without being terribly 'down' & seeming to be full of self pity. (I have waited long enough that I can write without crying as I write-I think)

As I've said before-Adam is not well. In fact-he's been deemed strictly palliative, meaning comfort is foremost, all treatments are based on that & that alone. For those who don't know-he is a happy, funny guy whose physical age is 28 but whose mental & intellectual age is less than half that. Anyone who meets him is impressed by the way he can make us laugh, who loves to talk (imagine thiskid came here knowing only 2 words)he trails oxygen tubing & who brags about his Mule & his snowmobile. And he loves music-all music, but especially Elvis music; after last evening he will also discuss-ad nauseum-Leonard Cohen.

But there is a darker side too. We've watched him do less & less, we've seen his discussions about driving the Mule or snowmobile be mostly that-talk. He took incredible delight in having his oldest niece drive the Mule last summer-hard to know WHO of the pair was having the most fun with loving parents, sister & grandparents watching & laughing (& taking pictures). Adam is child #4 for us-his sisters & brother are an important part of his life-it was thanks to their intervention that he even came here (Mike was hesitant at first)-& even in the middle of their teen angst-where parents were less than the dirt-they were eager to make his part of the family permanent & the adoption such a "non-event". ("Like, com'mon Mom-he's already our brother. What more do you want? Who would ever try to take him away-just sign the papers already! And make his name the same as ours"Although to be honest-there was debate about his middle name-Bartholamew? Adam settled it by saying "My name is Adam Michael now-so I can be like m'dad". And so it happened)

So what changed? He saw his Cardiologist on Monday-first we needed a letter for the bank saying that his projected life span was probably not 5 more years-we knew that, but to see it written down was like a kick to the gut. And this kind, gentle, honest man examined Adam-talked to him about his machines & what he can do on our property with the Mule or snowmobile-then waited until Adam left the room.(Our usual routine is to have Adam checked-then send him out in his w/c to talk to the nurses or anyone else he can find in the hall while we chat with the doctor-thus keeping his fraility a secret from him. I have no desire to raise a frail & delicat hypochondriac). Dr S sat down as Adam left-he said "he's amazing, I see his grins, I laugh at his antics, I listen to his chatter & then I put the stethoscope to his chest & I hear...nothing". For years he's told us updates-he can't take a deep breath, so keep his bellylaugh to a minimum if you can. One functioning lung lobe-so try to avoid pneumonia. Now that lung lobe is gone-no longer functioning at all. Obviously there is some air exchange happening-but it is inefficient because where it should happen in the lobes with alveolii-is gone. Dr S is a Cardiologist-& in the medical field, they have the best hearing of all-they hear murmurs nobody else hears, I remember asking our gp if she heard the 'pop' along with the "loud second sound"-& she said she heard that sound, but only Dr S & his ilk would hear the pop that was new.

I've watched him for years-in my days as a Peds nurse, I saw croupy or asthmatic kids come in-& the criteria was to see HOW they breathe & talk. Normally using their diaphragm-ok but probably needing help with masks, abdominal meant they were struggling, intracostal (between the ribs)meant it was getting serious & pulling air in with neck muscles working too meant we were heading for a code of Respiratory arrest. Can you guess how Adam breathes-all the time. He's gone from saying 3 or 4 words & stopping to breathe to 2 or 3 words now-sometimes, or it can be less.

What do I want, besides a chance to vent-I guess I want your P &PT-he's such a joy to have, the thought of not having that is breaking our hearts. One other thing I learned in Peds is that the loss of a child can break a marriage apart-or it can make the parents bond even closer than they were in getting their child to survive as long as possible. I don't worry about Mike & I-he is incredibly strong & patient-but he needs P & PT's too. Thanks for reading all this 'novel'-sadly it is under "non-fiction".

Avatar for suzyk2118
iVillage Member
Registered: 07-30-1997
Fri, 12-14-2012 - 2:23pm

Oh, Nora - loads of PPT to everyone involved....my hugs to you and yours.

Sue

iVillage Member
Registered: 11-24-1997
Fri, 12-14-2012 - 11:52pm

You have a tremendous supportive family to deal with this.  You have courage beyond words.  The doctor visits must be painful to bear hearing the truth but as long as he is alive, I hope he can continue to bring laughter and joy to your family.  Enjoy these moments for as long as possible.  My prayers are with you.

Kathy

Avatar for deenow17
iVillage Member
Registered: 10-12-2004
Sat, 12-15-2012 - 1:47pm
Nora, as I said in my note, you have my P&PTs. I enjoyed Adam when I met him this summer & he is truly special as are both you & Mike to have raised this amazing "child". Dee
Avatar for elc11
Community Leader
Registered: 06-16-1998
Sun, 12-16-2012 - 12:11pm

Nora, I am just now seeing this post. I am so sorry to hear this latest news. I'm sending lots of P&PT for you and for Mike. Please feel free to share with us at any time, we are all here for you.

Elspeth

Avatar for nora_mcl
iVillage Member
Registered: 10-30-2011
Sun, 12-16-2012 - 12:42pm

Thank You, all. I try really hard not to only post sad news, to try very hard to share funny or goofy news, but sometimes sad is all I've got. It's almost a week since the appointment-a week to dot the 'i's', to connect what we've seen & what we have now heard to be truth-& to see how it is all connected  & so very very true. (somewhere in a little corner of my brain I keep hoping he is wrong-that the zillion years he claims to have put in Medical school were a lie)

Your support is important-thank you. I have to remember that under the facade of a cheerful happy boy is a very sick person & that maybe I should let his room stay a bit messier & his music a bit louder because in the end-will it matter? He still has to be respectful & decent-but maybe I need to focus more on the memories I'm making than the minutae of day to day life? Anyway-I do appreciate your support, your P &PT.

Nora

Nora

Avatar for mahopac
iVillage Member
Registered: 07-24-1997
Mon, 12-17-2012 - 1:10pm

Nora, thank you for sharing this with us.  This seems like the very place to ask for support.  You, Adam and the rest of your family will be in my prayers.

Kelly

Avatar for sabrtooth
iVillage Member
Registered: 12-03-1999
Wed, 12-19-2012 - 12:23am

maybe I need to focus more on the memories I'm making than the minutae of day to day life?  That's for EVERYONE in our lives Nora!  We never know how long we have with anyone we love.  It would do us ALL good to realize that ultimately, we are all on borrowed time, and we should make the most of every day.  I suspect you've already done that, more than most.  I'm sure Adam and his family, will have a happy tomorrow.  And leave it at that.

iVillage Member
Registered: 02-21-2003
Fri, 12-28-2012 - 12:37pm

Finally found this.  Definitely sending P&PT your way.  You will all be in my thoughts.  Take it one day at a time and enjoy every moment that you have.  You know I am always here if you need to chat.

Janet