Oct 27, 2008

In Denial

I decided on the way back to the hospital tonight that I am in complete denial. I refuse to admit that we're not ok. But I am admitting... were not ok!! I have tried to hold it together. I know having her intubated gives her heart a rest, but my heart ceases to get any breaks. The doctors don't want me to hold her... she is my baby... and I'm not allowed to hold her? In the beginning (of the intubation) I felt fine with it. Knowing all the good it is doing and the time it is buying. Now I think it is just plain mean. Babies need to be held! It has been over a week since I held her last and my arms are aching to scoop her up. My heart is broken! It's the not knowing that is killing me. The doctors come in, talk about her- maybe change one or two orders- and leave. I feel invisible. Not that they aren't doing a good job, but I want them to know me... know her. Know that I would give anything if one of them would walk in with good news, or at least a big smile on their face. I am suffocating.

My whole life I have felt lucky... things have just gone my way. When people ask me how Mia is doing, I find myself trying to stay upbeat and give them an encouraging response. I do mean what I say... but day after day...it's getting old. She needs a heart- and she has needed one since she was born. It's not her fault- it's not fair. She just wants to be a baby in this world- and is stuck in a wedge with no one to hold her. Things are not going my way now. I'm fine with that. I just need her to be ok, to be home. You can probably sense the desperation in this post. I am desperate... I would do ANYTHING to get her home. I daydream often about a medical breakthrough, something, anything that will get us home. Everyone comments how well I am handling all of this. I don't have a choice. I would rather not handle it please. Today is an especially difficult day because it is the first full day with out my mom. She was allowed to take some personal days to come back and be with me and Mia. She was here for a few weeks, with the hopes that Mia would get her heart and she could take sick leave. Well, it didn't happen, and she had to go back. When she was here I didn't have to own up to my emotions. She took care of me in a way no one else can. Now she is gone and it is Mia and myself back to waiting day after day. Waiting month after month. How much longer? Now I have to be the adult- deal with the pain. When did I grow up? When did I cross the line of being able to handle situations like this? When? I definitely have up and downs. When I posted earlier (pen foot) I was feeling really great. My kids at home are a great distraction to my sorrow. I am sure this is how my blog will go until we are home. Happy post, sad post, happy post, sad post. This just happens to be the sad post. I wish you could all look in her eyes, and see her trying to breathe after she coughs with a breathing tube. It is the most helpless feeling. I have never felt this emotion and apparently I don't have the psychological ability to cope with it. I took a lot of counseling courses in college and none of them prepared me for this. I am suffocating... breathe. This is the most spiritual and devastating experience. Why can't it all be spiritual? Why can't the MOTAB be playing constantly in my brain so I can walk graciously down the ICU hall completely uplifted by my experience? If only life worked that way. Why were we given such raw emotions? It hurts so much!

Please pray for that couple to say yes. Mia has waiting so long, and endured so much. So many of you are praying for her... please continue. I have never prayed as much or more intently in my life. Now that I know how life can be... I will never pray the same again. I will pray with more gratitude...knowing just how blessed I am.

33 comments:

TheBastians said...

Oh, Mimi - you have every right to posts like this. We understand you must feel this way. We know your heart is aching. Our hearts ache FOR you. You are human. Your emotions are real. They are important to express. Please know that you guys are loved and in SO MANY prayers. Little Mia is a blessed baby and things will work out. The Lord loves you and your little family!

Jennifer said...

I KNOW that there is absolutely NOTHING that anybody can say to make you feel better, other than, "we have a heart!" But I truly believe that it is important to express your feelings the way that you just did. That was seriously huge. Recognizing that you are in denial pretty much takes you out of denial. I am on the extreme side of a realist, so I really think it's great that you are being realistic AND optimistic at the same time. The optimism is what's going to get you through this. Continue to trust in the Lord and know that His will will be done. You are so amazing. Being able to put on that happy face when you are torn to pieces inside is a blessing. You must know that you have blessed so many other lives with your incredible spirit, I am most definitely on that list. Keep on keeping on, and we'll all keep praying for you and everyone involved!!!

jayna said...

Even the golden girl of WA is allowed a little melt down! You are living the nightmare of every mother...but you are DOING IT! And oh my goodness, the PRAYERS! They are there!! I say, just let it all out. We're (as in the blogging community) the best sounding board because we have no eyes you have to look at. After outbursts, we are just the loving words that you can wrap around yourself to get you through the next second, minute, hour, or day that you need.

We hear you.

babydrew said...

Mimi,

We pray for you and your beautiful Mia every day. The day will come when your tears will be tears of joy. We pray that day will come soon. We are so blessed to have met you and your story has touched our hearts in ways we could never imagine. I will leave you with a quote that has helped our family get through some tough times: Believe, even when it is beyond reason to Believe.

God Bless!
Love, Taw, Stacey, Ali, Lexi, Baby Drew

Katie said...

Mimi-
I'm so sorry...this just sucks. I'm so glad you shared this with us- we all empathize with you and you are entitled to do this! Hopefully it was good therapy for you!! You are living the toughest trial any mother would have to experience. It's totally out of your control and all you can do is sit back and wait. When it becomes unbearable, visualize handing Mia over to our Father in Heaven's arms. This is out of your hands...you are doing all you can for her and would do so much more if you could. He is there, He loves you and He loves and adores Mia. He will sustain you through this time. You are such a strong person and I know this is unbearable, I can only imagine. So I put myself in your shoes and the only thing that could console me is knowing that this is His plan and that He is there. Keep the faith and turn your doubts and fears upon Him. Love and hugs to you and your darling family...thinking and praying for you always. My heart is with you!
Love,
Katie

Riley Family said...

Oh Mimi, I am so sorry!! I think that in moments like these as we (your readers, family and friends) have moments of pain, and tears in your behave. That it is in those moments that Heavenly Father blesses you, he takes that extra pain, the pain that would send you over the edge and he lets us feel just a tiny bit of it for a moment. He lets us pray those prayers, and cry those tears so you can be released of just a little bit of it. I'm so sorry that you are hurting and in need. I will continue to pray, and maybe even a little bit harder, for your family and for your sweet baby Mia. She who has brought so many lives and hearts together. I love you! I love your family and I love Heavenly Father for helping you all through this. If there is anything else I can do...I am here. Much love!

The Eggett Family said...

I really don't know what to say except that I wish I could take all of your pain away. My heart just aches and breaks for you and for little Mia. It's totally o.k. to have break downs Mimi. I'm sure it's very therapeutic to just let it all out every now and then.

I'm sorry your Mom had to leave. I think we all have this inner ache, especially when going through trials to just have our Mommy's take care of us.

Please know that we are continually praying for you, Mia and your family. Heavenly Father has a plan for Mia, and is very aware of you and your needs. Keep pouring your heart out to him, one day you will be able to look back and look at this as a huge blessing and growing experience. For now just keep praying, crying, hoping, laughing, venting or whatever it is that you feel like doing from minute to minute.

I love you Mimi - I'm so sorry you are having to go through this. You really are amazing and your optimism has gotten you this far. It's not denial, it's just trying to stay positive when nothing feels that way. I really think that your positive attitude is pulling you through this more than you know. Please vent anytime!!! Love you!!

The Eggett Family said...

Mia's big blue eyes are just beautiful!!! You can tell she just has so much to say.

Erin said...

Mimi! I don't think anyone expects you to NOT have these days. I hope that by writing your feelings down you can work through the emotions and heartache just a little. It's okay to post the sad days, and express your pain and heartache for your baby girl.

I'm so sorry your mom had to leave. Hopefully she'll be back soon using up those sick days because Mia got her heart. We will be fasting for Mia's heart on Sunday...and I am asking my extended family to participate with that.....all 100+ of them! Any one else want to join in?

Mim,i the light will come, keep holding on until that glorious day. I love you

Shila said...

Let it out sister! You of all people have the right to scream at the top of your lungs, smash plates, or punch the nearest punching bag! I had a great time the other night having dinner with you and everyone. That is the best Thia food place I have ever been to. Loved the soup, I have never had it before. I was telling John at the Halloween party, (We missed you and Mia) that time with family was so needed for me then. It helps the soul.

Lykins Zoo Keeper said...

Mimi, You don't know me, I am a member of the Blythewood Ward in Columbia, South Carolina and have been reading your blog for months now. Please know that there are many out there that you don't even know who are thinking and praying for you and your family. Your post brought me to tears and my heart breaks for the pain and anguish you are facing, and for your dear Mia who is suffering so. I so wish that I was a member of your ward to help you and your family during this very difficult time. Please know that my prayers will be more fervent on your behalf, and for sweet Mia. Please let me know if there is ever anything that I can do for you. A big hug from a fellow sister in South Carolina!

Family Scads said...

Oh Mimi...my heart aches for you. We are in the hospital right now and Beck is fighting for his life. I forgot how much this hurts..and boy does it hurt! Nothing can describe the pain of watching your child suffer and not knowing their future. I am physically sick and totally emotionally drained. Last night was a hard night. I watched as Beck had a seizure and became unresponsive. I think my heart stopped.

After reading your last post I ached for you because I ache. I know that people say that we are handling this so well, but we don't have any other choice. We are doing the best we can. I don't feel like I can handle this again, but I will because it's worth it!

I will continually pray for little Mia and you. You can do this...only because I know that somehow I can also.

Please feel free to write of call any time!
-Kim

Amy said...

Your honesty is amazing Mimi.

Mia doesn't have to feel your arms
around her to know how much her mommy loves her. She knows you are fighting for her everyday she sees your face.
She is truly blessed to have you as her mommy.

Katie said...

Dear MiMi,

I'm Susie Stewart, Katie Allred's mom, and I've followed your journey. Through your blog and through my daughter........I hope and pray I can give you some help in coping. Although I have never experienced your circumstances as a mother, I have some insight as a grandmother. Your feelings are such because you are human.........we never in our worst nightmare, expect or conceive the unthinkable..........we seem to think life is supposed to be perfect, especially if we live with integrity and good intentions..........we have this expectation that good deeds bring only rewards, happiness and bliss. Of course, intellectually we know that isn't always the case, but the "human" in us, wants to believe that. I agree with you in that this is so unfair, and so unfair to so many babies and children.........but it has to be one step further than what is fair............Christ's suffering, is what you are experiencing in an abstract kind of way......When Katie was going through the darker days with Maddie, I came across a scripture that I gave her..........I want to share it with you.......Please know how much I care, and want only the best for little Mia and your family..........this time, this torture will not last forever, and no matter what happens you and your daughter will always be together, now and forevermore.
Sincerely, Susie Stewart

"Dear friends, do not be surprised at the painful trial you are suffering, as though something were happening to you. But rejoice that you particpate in the suffering of Christ, so that you may be overjoyed when His glory is revealed." 1st Peter 4:12-13

Shauntelle ~ said...

I tried calling you today and left a message at the hospital. My heart breaks for you. I was in your position last year at this time while we waited for Kaidence's heart. I wrote you a super long comment earlier and I lost it somehow. I left number with the nurse. Call me if you need to talk. I understand what you are feeling. Praying for you.

Shauntelle
Kaidence's Mommy

Holen Family said...

I don't know if this will help at all, but I had the same feelings when my baby was in the hospital. She also had a breathing tube and I could not hold her. Everytime I looked at her, I wanted to take the pain away. I even asked a few doctors if I could take her place. I really wanted to. It is so sad to see your child go through so much. The doctors didn't always have good news for me and I wanted to yell at them. So, I understand how you are feeling. I also could not handle it emotionally. In fact, I am still on anxiety medication. It was to much for me to handle. There will be that miracle when the doctors will give you the good news and Mia will get her heart. Then, the healing process can start and you will be so happy. Please feel free to call me- I know how you feel and I would love to just listen. I reached out to people who had been through the same thing and it helped me so much. My number is
801-592-6038.

Carol said...

Life is definitely not fair, and sometimes it really sucks. I'm pretty sure none of us would be handling this any better than you are, though. It's definitely okay to break down when you get overwhelmed. I'd have melted myself into a depressed, soggy puddle by now if I were you. Remember that you are not alone. There are angels all around you and Mia. The ones on the other side of the veil don't sleep, and they don't take breaks. They are watching over her around the clock. When you can't hold her, they are holding her. I know this is true. It will all work out. We love you!

Brenda said...

Hang in there. And I will continue praying for your baby Mia.

Jill said...

Mimi,
Hi. This is Jill Edwards from high school. I have been checking in on your blog frequently once I learned about what your sweet Mia is going through. My heart aches for you and your family. I wish I had some words that would help take the hurt away, but I do not. A few years ago, I was faced with a trial I thought I would never, ever survive to see the end. I read a book that made all the difference in the world. "The Broken Heart" by Bruce C. Hafen. He writes about our Savior and the Atonement in a way that I had never heard before. While reading that book, my testimony of the Atonement was strengthened more than I thought possible and the pain that I felt was literally lifted off of my shoulders. The book helps you realize how to apply the Atonement to what you are going through. I have recommended it to many people since, and they all felt what I did. I hope, that if you read to book, that it will do for you what it did for me. It does not stop the trial, but does make it possible to make it through to the end. Sorry that I'm going on and on when you may not even remember me. Your story and strength has touched me so I wanted to share. Your family will remain in my thoughts and prayers.

anniewalkfam said...

wow meems, what do i say? i can only imagine how hard this has been and you know i've told you it's ok to not pretend you're ok. i'm glad you're sharing your sadness because it is such a sad, heartbreaking situation and i'm not even her mom so i know how much you must be hurting. i love you guys tons and have cherished all the moments we have gotten to spend together (even if it has been in the ICU). Just know that one of these days her doctors are going to come in with that smile on their face. I was so excited for you today when they talked about letting you hold her but just know that that day will come soon too. You are an amazing mother and even though you can't hold Mia right now she knows you and feels your love. ok, enough rambling and crying on my part. i love you girlie.

Carrie Hellewell said...

I love you Meems. I love your honesty. I know this is the hardest thing you and John have had to endure. You'll be blessed for it. I continue to pray for Mia, you, Johnboy and the kids. I hope one day, soon, you not only have a good day but a great day!

Brittany Osborn said...

When I am away from my babies for five minutes my arms ache. They took Malachi to the bilibed when he was a newborn and I sobbed. My arms literally ached to hold him. I can't imagine a whole week. I'm so sorry. I'm so, so sorry.

molly said...

Mimi and John,
I hear you...your thoughts and feelings are so incredible. We pray for you and your family and hope everyday for good news. Although your strength is so apparent, it is also good to feel and express your frusturation and devastation. Obviously you have a wonderful support system but please, if you need anything let us know. Our prayers will continue...our thoughts are with you.
Molly and David Saueressig

Peg said...

Dear Mimi, You don't know me, but I am Cindy Eaglin's Mom. I want you to know how much we have been praying for your family, most especially your precious Mia. I know that your heart is breaking and you have every right to be down. I know that even when you never lose faith, you still need the prayers of others to lift you. Please let those prayers sustain you now. I hope to meet you someday when we make a trip to Washington.(We live in Phoenix.) As crazy as it seems, I feel like I know you already just from your blog and through Cindy. You are loved.

Talia said...

Mimi,
I know that words cannot ease the pain that you are going through, but I think you and baby Mia constantly and pray every night that she will get her heart. Just know that this is in our Heavenly Father's hands. He is watching over you and He definitely watching over Mia. If you ever need someone to talk to, please call me.
Talia

Hilary said...

I just want to give you a huge hug! It is more than ok to feel these feelings, just allow yourself to feel them. We are praying so hard that Mia gets her new heart! You can do this, Mia is so strong and she will continue to fight. If you ever need to talk to someone who knows a lot of what you are feeling you can email me anytime hilarymcook@gmail.com-Know that so many people are praying and have Faith. Sending all of my faith and prayers, Hilary Cook-mommy to Daxton-Heart Transplant Sep. 10th 2008
"Come what may..and love it"

Cindy said...

What can I say, Mimi? This isn't fair at all! I wouldn't consider you just lucky, though- you are an incredibly strong and special person- which is why things just seem to happen the way you want them to. You have the amazing ability to seek and hold on to the happy and good things in all people, events, or things. That is why God sent you your precious gift in Mia- he knows that no matter what, you will find the good in this time, in your baby, in yourself. It's okay to feel down now- you deserve a little bit of luck right now! Love ya gal!

keysha said...

My heart aches for you. You and Mia are in my prayers....You are so strong; and I admire your diligence so much. I can't imagine not being able to hold my baby. But, I am sure Mia senses your presence and just seeing you there is nurturing in itself.

You're awesome; and so loved.

McAtee's said...

Hi Mimi, I don't know you, but I know your friend Baby Drew I work with his Daddy. My heart is breaking for you both, and we are praying our hardest that you are blessed with a new heart soon. Stay strong Mom, and know that people across the country are praying for your baby.

eRiCa said...

Continuous prayers are offered for all of you in our little family. There isn't a day that goes by that I don't think about you and pray that your little Mia's heart as well as yours and the rest of the family.

Love you!

Jason said...

Mimi, my heart is aching for you! How I wish that hugs could heal everything. Mia is a blessed little baby to have the perfect mom for her! We will continue to pray and pray and pray! Heavenly Father has not forgotten you! The miracle will come! Your faith has inspired me and so many more. I believe in miracles...and I know you do too! Love and Hugs...lots of hugs! Julie

Montana1 said...

Hi - I work with Taw Jackson in Montana. Hang in there. I wish you all the best.

Bill

Anne and Dillon said...

After the general conference talk about the reality of angels in our lives, that god sends them to us during our hard times, I have prayed that he would send angels to you. Some of these angels have made beautiful comments on this blog. Others, I know, are unseen at Mia's bedside.