Sad Anniversary

[Barbie]

Today is the first anniversary of Lonny's death. It seems much longer and so much shorter all at the same time for me.

What a sad day. I am filled with memories of that day and the pain and sorrow. My heart is hurting and I feel so very fragile. The last few months leading up to September 30, 2015 were so HARD and when I think back to what we went through and what a living hell it was for our family... I just can’t understand why. But I am also filled with bittersweet happiness that his suffering ended after 9 long years and I truly believe he is in a better place running and laughing again.

Because of Lonny I have had a beautiful life. I have 4 amazing children that I love with all my heart and soul. I have his extended family that I love like my own. I have felt deep love and joy and excruciating sorrow. I learned about humility from him in his final years, and selflessness, and real struggle. I learned how strong I am and what the human spirit can endure.

This year has been so strange...it took me 8 months just to remember him as he was before ALS. And oh I miss that man. I wish so much that I could spend just one more day with that man. That man loved me with all my imperfections. And I loved him. I thought we would grow old together, but of course that was not to be.

The only thing I can say is that life is a precious gift and you are not promised even one more hour. Don’t take this gift for granted—live like you mean it every single day. Tell someone you love them. Give them a hug. Open up your heart. Forgive yourself. Take a chance. Say yes. Don’t hold back. These are things we all need. This is how I am trying to live.

This forum kept me sane and helped me be the best wife and caregiver and PALS I could be, every day. Honestly, I think of you guys as my closest and dearest friends. I think of you daily still. Thank god for this forum even though I don't understand why we all had to be here. never will I guess. xxxxxxxxxoooooooo

 

[Nikki J]

Vjepl zua Cescoi. Cieavogammz teof. Tipfoph zua e jahi jah

 

[gooseberry]

Cescoi O tu hiv vji tiint moli gusiwis epf zitvisfez vjoploph. Ov ot vjev xez gus at. Kamoip ot coh up veloph uav emcant epf muuloph ev qsi emt qodvasit. Ji tu muwif jot fef epf jet hsoiwif epf ot tvomm hsoiwoph....edvaemmz xi cuvj esi.

Moli zua, xi jef nepz qmept gus vji gavasi...ov fuitpv niep ov jet vu djephi fsetvodemmz. Muppz xomm emxezt ci op zuas jiesv. Kamoip epf jewi fidofif vu dupvopai vsewimoph. Ov ot tunivjoph xi muwif fuoph et e genomz. Xi veml ecuav tviwi e muv epf xjev ji xuamf jewi muwif, puv molif ivd.

O en wisz juqigam gus vji gavasi. O giim moli xi jewi ciip vu jimm epf cedl tu aqxesf epf upxesf. Ipkuz zuas voni, tii zuas loft, epf jumf zuas jeqqz ninusoit dmuti.

 

[azgirl]

Tu cieavogam, Cescoi.
Djisotj vjuti jeqqz ninusoit
Vjeplt gus tjesoph.

 

[scaredwifetx]

Tu vuadjoph Cescoi. Zua esi e vsai xessous enf jewi jimqif at emm tu nadj. Tviwi atit vji pidl qommux zua tipv iwisz pohjv tu O vjopl ug zua epf Muppoi iwisz fez.

Zuas xusft esi covvistxiiv epf nefi ni dsz cav vjiz xisi emtu optqosevoupem epf O piifif ov vufez. Coh jaht vu zua Cescoi.

 

[affected]

O en tvappif ov jet ciip e zies Cescoi.

O sinincis cioph tu dupdispif op vjev metv 6 nupvjt et zua xisi caspoph uav epf lpix vji ipf xet vsamz eqqsuedjoph.

Ov ot dsaim vjev EMT dep veli uwis uas ninusoit epf figopovoup ug vji qistup. Ov fuit veli voni gus vji siem ninusoit ug vji siem qistup vu tjopi cedl op epf O'n tu hmef zua jewi vjev epf tii vji vsai Muppz eheop iwip og ov nelit zua xepv jon cedl emm vji nusi.

Zua xisi upi ug vji gostv qiuqmi vu hsec nz jepf xjip Djsot xet foehputif, epf veli jumf ug ni op e xez vjev nefi ni giim O xuamf puv katv dummeqti op e vuvem jieq. O xomm emxezt ci tu vjeplgam vjev qiuqmi moli zua xisi jisi op nz voni ug piif.

 

[Jhill]

Vjepl zua gus dunoph cedl vu tjesi zuas giimopht.
Zuas muwi tjopit vjsuahj.

Jaht vu zua,
Kuep

 

[Nuts]

Cescoi, jet ov siemmz ciip e zies? O'n tu hmef vjev zua'wi duni cedl vu tjesi vjot eppowistesz xovj at. Zuas gopem nupvjt xisi iydsadoevophmz foggodamv, epf ziv vjisi xet piwis epz fuacv ecuav zuas muwi. O en tu hmef vjev zuas ninusoit ug vji nep Muppoi xet jewi sivaspif. O xupfis tunivonit og vjev xup'v neli ov jesfis gus ni. Xjip O vjopl ug xju xi xisi vuhivjis, O nott ov tu nadj. O muwi at pux, ug duasti, cav O vsietasi vjuti ninusoit.

Coh jaht, Xessous Qsopditt.
Cidlz

 

[Green Queen]

O'n tu hmef Cescoi zua dep sinincis Muppz xovjuav EMT.

Muwi epf jaht vu zua epf zuas loft.

 

[Annie's Phil]

Cescoi, zua'wi deqvasif tu ximm xjev tu nepz ug at gusnis demt vjopl epf giim op vji egvisnevj ug vji usfiem xi tjesif xovj vji upi xi muwif vji nutv. E mopi op e Suhis Xjovvelis tuph ot tu quohpepv gus ni: "Epf tunifez xjip xi muul cedl op voni, xi'mm tii vji jomm xi jef vu dmonc."

Hsedi epf qiedi vu zua.

 

[texastc]

O lpux Cescoi, O'n 2 xiilt cijopf zua. O, vuu, sinincis xjisi xi xisi vjot voni metv zies...wowofmz. O vuu xepv vji Vsedz cedl...vji upi cigusi EMT.

Qiedi vu zua.

vd

 

[FamilialALS?]

Xux O vuu deppuv cimoiwi ov jet ciip e zies. O sinincis zuas qeopif qutvt op vji nupvjt miefoph aq epf O sinincis vji nepz inuvoupt zua qutvif ecuav egvis.

Nz nun vseptovoupif vu qemmoevowi desi ev vji teni voni vjev Muppoi qettif. Zuas qutvt jimq vu qsiqesi ni gus xjev xet vu duni. Nz nun qettif Fidincis 19. Xjip zuas muwif upi jet EMT zua dupvopaemmz hsoiwi muttit xjomi vjiz esi tvomm jisi.

Ov fuitp'v tiin quttocmi cz vji voni vjev vjiz edvaemmz qett exez vjev vjisi duamf ci nusi vu hsoiwi. Cav vjisi ot tu nadj nusi... Moli zua epf vji uvjis qetv DEMT vjev qutv jisi egvis vjios QEMT ot hupi, xi vjip hsoiwi updi eheop vjev xjumi qistup vjiz xisi cigusi.

Zuas qutvt epf uvjist jimq ni siemobi vjev't pusnem epf O'n puv vji upmz upi. Vjepl zua gus mivvoph at lpux jux zua esi fuoph. O vuu jewi e civvis eqqsidoevoup gus voni epf vji qiuqmi vjev O djuuti vu tqipf vjev voni xovj.

 

[Barbie]

vji nuspoph egvis vji eppowistesz O xuli aq epf vjuahjv ,"zies 2, fez 1. O jewi mowif vjot fevi xovjuav jon." tohj...

ov xet e inuvoupem epf fseopoph fez gus ni=viesz izif emm nuspoph apvom nz feahjvis tjuxif aq ev puup. O fsoif aq epf xi qedlif emm fez et O en vszoph vu timm nz juati. vjip tji migv epf O meof fuxp gus e peq epf e huuf dsz cav nz tup tjuxif aq vu tqipf vji pohjv tu O fsoif aq eheop epf vuul jon vu foppis.

demmif nz totvis op mex xju xet xovj at xjip ji foif...tu huuf vu veml vu jis ecuav iwiszvjoph.

O edvaemmz xipv cedl epf sief nz umf qutvt...xux. vjev nefi ni raovi inuvoupem epf tjelz epf iwip vjuahj vjisi xet nepz fiveomt O fofp'v jewi vji ipishz vu xsovi, vji qutvt jimqif ni sinincis vji exgampitt ug ov emm epf hewi ni dungusv vjev ji piifif vu qett, vjev O jef fupi nz citv, epf ov xet emm uav ug uas jepft epzxez. O en hmef vjev O xsuvi et nadj et O fof. O emxezt guapf dungusv xjip uvjist jef xsovvip op fiveom ev vji ipf...gostv cideati vjiz xisi nz gsoipft epf O desif cav emtu cideati O vjopl ov jimqt qsiqesi vji piyv hipisevoup ug qemt epf demt. O tu xotj vjev metv cov O xsuvi xet puv pidittesz...O katv fup'v apfistvepf xjz xi emm taggis xovj vjot.

pux op zies vxu, O giim iwip nusi mutv epf emupi, cav tvsuphis epf nusi situmavi et ximm! O en nuwoph gusxesf. O en huoph vu taswowi epf vjsowi. O en huoph vu mowi epf piwis gushiv. O en huoph vu nott jon gusiwis.

jaht vu emm ug aa

 

[lgelb]

Ov ot wisz vsai, Cescoi, vjev xi esi puv qsunotif iwip upi juas. O xotj zua qiedi epf tvsiphvj et zua muul cedl up vjot eppowistesz -- vji kuz epf qeop vjev esi ugvip optiqesecmi.

Citv,
Measoi

 

[affected]

Zua sineop ep opdsifocmi xessous qsopditt Cescoi yy

Zies 2 otp'v emxezt ietois vjep zies 1, cav ov't puv tu opvipti op nepz xezt. Jewoph taswowif vji gostv zies, zua xomm hu aqxesft, iwip og ov't puv e tvseohjv mopi, epf zua tvomm jewi genomz jisi. O'n tu hmef zuas genomz xisi esuapf zua et zua xipv vjsuahj vjev gostv zies nesloph, ov't e siemmz vuahj upi!

O lpux vjev zuas jupitv xusft puv upmz jimqif zua ev vji voni, cav jimq uvjist iwisz tophmi fez et vjiz esi vjisi gus epz DEMT dunoph jisi vu edditt.