My hair is falling out. In chunks. I have zits on my face that truly deserve their own solar system. After Gideon puked up his medicine and all other ingested food for the third time today, I left the room to go have some hyperventilating moments in the garage. Sometimes a positive attitude is so darn easy, and other times...well, I feel like going to the prison in Jackson and asking if there is an inmate who truly deserves to get his butt kicked. Then I would unleash.
Don't get me wrong, I KNOW I am blessed. I know Gideon will get better. I know there are others worse-off... But I'm feeling sorry for myself today, and I get an overwhelming sense of exhaustion when I look at Gideon's medicine schedule. I look at that one itty-bitty month full of medical codes for medicines and my mind automatically produces three years worth of medicinal calendars and I feel defeated. Yup. The negativity monster is rearing his ugly head and it makes me downtrodden and depressed. He says to me, "You can't even get your first full day at home under control! What are you going to do when it gets tougher?" Then he has me look at my precious, lethargic little one and says, "Look at him... He is not the same Gideon who once lived here. He is full of toxins and can't even go to the zoo! This was supposed to be the best summer ever! Full of adventures with your boys." Shut up, monster.
I am having a hard time since part of me feels like Gideon is made out of china: extremely thin and delicate china. He walks all wobbly and unsteady. He gets winded after climbing the stairs. I can tell he is in pain, and when I ask him what hurts he answers me like this, "Nothing. I'm fine, Momma. I'm okay." And then he curls in a ball and rocks back and forth. Right, kid. I SO believe you. :( How he picked up this line, I don't know. He's THREE.
So many of you have commented on my positive outlook and loving attitude. Today I have felt differently... I have had moments today full of laughter, like when I took Brody on an hour playdate and got to laugh with other incredibly amazing adults while our kids played. I felt like a person during that time.
I am thankful that I get out of these slumps in attitude pretty quickly... Nothing a twirl (or six) in the kitchen can't fix, but I guess I feel like I should really share a darker and more dreary Amanda with you all before you start to think I have a Pegasus in my garage that poops stardust. Let's be real, people. I get down. But.... I've gotta look up. Even if my prayers sound half-hearted and like Charlie Brown's teacher in my head, I'm gonna keep saying them. If nothing else, this experience has shown me that I can't depend on my own optimistic nature to get through it all. There are bloodthirsty negativity monsters just waiting for a weak moment. Trust me. I know...
Lean on others when you feel weak. I have never been through this but I still know it is normal. Your faith with bring you through in the end. Have a good cry, lean on friends and family...let it out so there is room for star dust when your ready.
ReplyDeleteCome on! I was really COUNTING on the Pegasus pooping star dust in the garage. ;) I would think this thing with Gideon is right up there with the top 10 hardest things a parent can face - if not #1. My niece had to go through it with her little girl (different cancer, same monster). Thanks for telling it like it is. I hope you can get a little time for a hot bath or whatever helps your soul catch up to you!
ReplyDeleteYou are human and have every single right to have down times. What I do admire about you is the fact that your make the effort to focus on the positive! Call friends and family...cry on a shoulder...no one is going to blame you one bit! We are all here for you!!! That's what friends are for!
ReplyDeleteFinally, the Pegasus that poops pissiness...or would he just pee it? That is a question that I'll let you take the time to ponder as you need an escape every once and a while.
ReplyDeleteI'm glad to hear that you're allowing the negatives to appear--it's called reality. Allow yourself to taste a little "self-pity" as you call it, because it only makes the victories that much sweeter. You deserve to admit to yourself all the emotions that come with this new frontier. Because it's not until you do that, that you can start to put mind over matter. Go in the garage. Yell. Scream. Give yourself an hour a week to go to a kickboxing class to get the anger out. Dance in the kitchen. Sing at the top of your lungs. Ask for assistance. I know, easier said than done sometimes. Do what you need to do to make it through, but just know that you don't have to do it alone. I am...we are...all here to help you through this. -Cate
Cry out to God! I find that reading Psalms aloud in my prayer time is a big support when life is unbearable and I feel sorry for myself.
ReplyDeleteAmanda,
ReplyDeleteI am glad you have this outlet and that you feel safe enough here to tell us how you really feel. I am sure none of us can even imagine how traumatic it has been on you to go through this with your precious boy. I have never even met Gideon and I only knew you briefly, but his illness has hit me so hard. I think about him all the time and our family prays for him several times a day. When I start to have a pity party for myself because my life gets stressful, I remind myself that I'm not sitting in the hospital with one of my children. Your positive attitude has been an inspiration to me. But please, by all means, have a good cry!!! Your hair is falling out from the stress, I know, It's happened to me! You need to find a good way to release the stress, and I don't mind at all if you release it here on your blog.
God bless you Amanda, and Tom and Brody and sweet. precious little Gideon.
Love, Katie
HUG!!! You are the ever-loving caregiver and every time I read your blog I'm left with this overwhelming feeling of awe - awe of how amazing you are in this scary time. I have cried with all of your followers who, like me, are now in love with you and your family. You are doing the right thing by letting it out - screaming, laughing, twirling, etc. Don't keep it in! We are here for you - you having an amazing support group - Including your EES family - standing strong with you, loving you, Gideon, Brody and Tom. With thoughts and prayers, Nicole
ReplyDelete2Corinthians3-6
ReplyDeletePraise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer.
Let it out, let it happen, let it be, know that ALL are loving you, supporting you, praying for you, and walking every step of the way with you.
You're human Amanda, that is all! I know from my SIL's experience that what you're feeling & experiencing is entirely normal! Allow yourself this. XOXO
ReplyDeleteDearest Amanda, congratulations... you are still human. And humans, no matter WHAT, need to vent the nasty, awful stuff that scares the 'carp' out of us and gets us down. However much you want to be 'Wonder Mom' (and you're darn close to it!), there will be days, hours, minutes like this where you just CAN'T.
ReplyDeleteDon't fret, though. When you can't manage that bubbly, upbeat, 'Amanda-Panda' routine, let someone else take over. What is that phrase? "Let go, and let God?" You are facing something that most of us would have a nearly impossible time facing with the same aplomb. I have my doubts as to how well *I'd* be doing, that's for sure!!
We're all still here for you, sweetheart, in thoughts, prayers, wishes and hopes. When you feel completely drained, take a minute to re-read all the hopeful, supportive, uplifting messages left by all your TERRIFIC friends and family (not including myself in there, though, really). Don't forget that, even when you falter, Gideon's Army marches on... call on them, reach out to them, cry on shoulders, vent in your blog. We will ALL be here to help you & your beautiful family lick this thing.
MUCH LOVE & HUGS!
~~Aunt Nancy~~
PS - I have a Pegasus... but it doesn't poop sparkly stuff. Hmmm, maybe we can work on that? LOL!
Big hugs to you Amanda!! I am praying for you, Tom, Brody and Gideon!! You will make it through this!!! I can't even imagine how awful it is right now, but I know it will get better, and soon your Pegasus will poop out sparkly stuff :)
ReplyDeleteLove ya!
Nurse Sue
Dear, dear Amanda and Tom, you are doing an amazing job with assimilating this information and forming positive responses and plans of action. Just know that no one expects you to be positive and upbeat all the time, even with your great faith and trust in the Lord. You will feel completely overwhelmed and defeated at times – it’s ok! Who can have a heart bursting with love and hopes for their children and not ache for what they are going through? That is the time you lean on all of us. Even Jesus had help carrying His cross. You are in our prayers throughout the day. And I firmly believe in the power, not only for healing, but to help give you support, knowledge, peace and hope through this monumental struggle. Matt and Karen placed my aunt on their prayer list when she was diagnosed with pancreatic cancer two years ago. At 79, she is cancer free and exuberant in living her life, so I know first hand the power of prayer. If there is something more physical we can do to help in the meantime, we are just across the street. Call anytime day or night!
ReplyDeleteYou are doing an amazing job Amanda. Remember it's okay to cry and let it all out sometimes. When Travis was in the hospital for 3 months I can't count the number of times I had to leave the room so I could vent somewhere out of his sight. And the anger and frustration are not a sign of not believing that our children are firmly in God's hand. They are simply the exhaustion taking it's toll. We are human. Hang in there. Love and Prayers, ~Linda Parker~
ReplyDeleteDearest Amanda,
ReplyDeleteAt your highs and your lows, you cannot be anything more than you are...and that is all you need to be. I'll add some extra patience for yourself to my prayers.
Sending love-J