Friday, October 15, 2010

Wave of Light

What the Bolte Family looks like in my heart


Sometimes I miss them so much it literally takes my breath away. Praying tonight for all parents who have been left breathless.
Please join me tonight in saying a prayer for all babies who are now in Heaven and for the families who miss them dearly. I never imagined I would be a part of this club, but am so thankful for ALL of the wonderful friends I have made along the way as they walk this sometimes lonely path. Today is National "Wave of Light" night. If you would, please light a candle at 7 pm in honor of all families who are grieving babies. One of the greatest things you can do for a friend who is grieving the loss of a child is just remember with them. Don't shy away, don't pretend it didn't happen...remember, talk about and honor them. Being a friend, even in the deepest darkest pits of grief and not shying away is the GREATEST gift you can give to a friend who has lost someone so dear, grief is sometimes a very lonely and isolating journey.

Go ahead and mention my child,
The one that died, you know.
Don't worry about hurting me further.
The depth of my pain doesn't show.
Don't worry about making me cry.
I'm already crying inside.
Help me to heal by releasing
The tears that I try to hide.
I'm hurt when you just keep silent,
Pretending she didn't exist.
I'd rather you mention my child,
Knowing that she has been missed.
You asked me how I was doing.
I say "pretty good" or "fine".
But healing is something ongoing
I feel it will take a lifetime.
~ Elizabeth Dent ~

Thursday, October 14, 2010

A Heaviness

It is tough to describe the heaviness that I have been feeling in my heart lately. I feel such a rush of conflicting emotions and sometimes I am finding them hard to process. My heart has been so heavy for the Ringgold family. I know all too well the pain of letting go of something so precious. I too have had to learn how to go on and live after losing so much. It sucks. It sucks the life right out of you. Grieving a child is a full time job and it is exhausting. My heart breaks for all they are going through and yet I know that it is in this place that they will see the hand of God move in a mighty way. It is strange, I feel like I miss Bella too and I have never even met her. She was just four days older than Hope and I have been following her journey for so long.

My heart also hurts for Tripp and his family as they are trying to figure out how to best care for him. He is one of the strongest little guys I have ever "known". He is battling an infection right now and could really use your prayers.

I am also in love with baby Jonah, he was the first EB baby I followed. When I had posted about Hope's condition before she was diagnosed so many of you pointed me in their direction and I am so grateful. Their blog gave me hope. Hope that even if things got worse with Hope's condition that we would still find joy. Though Jonah endures a lot and his mommy and daddy struggle, it is so apparent that they are grateful for him and love him so much.

Each of these kids live each day with a grace that is unfathomable to me. Even a loving touch can cause blistering and pain. Something as simple as feeding them breakfast can be a major ordeal. EB SUCKS! It is a horrible disorder.

After bringing Hope home from the hospital I can remember being gripped with fear. Fear of everything, fear of holding her, feeding her, bathing her, strapping her in her car seat, fear if she cried differently, fear of the boys touching her, I was on edge ALL the time. I had no idea how severe or mild her condition would be. That fear distracted me from a lot of the simple pleasures of newborn-ness. I hated EB then. Isaac had EB. Isaac's EB was worse than Hope's. He had blisters in his mouth, his diaper area, all over, likely because he required an incubator and lots of sticky stuff on his skin and we had no idea what EB was and the hospital had no clue as to how to handle it.

I say all of this because now, I rejoice that Hope has done so well. I am overflowing with gratitude that when I took her to the dermatologist last week they were amazed and astounded by her. Howard has a cousin who has also had a baby who has EB and their baby is doing as well as Hope. I am so thankful. I am thankful that Hope eats normal food, wears normal clothes, and aside from choosing her shoes carefully, not using band aids and being a little gentle, we make no other accommodations. Seriously, each day when I dress her I praise God that I am putting cute clothes on her and NOT changing bandages anymore. We are blessed.

And yet, with that gratitude comes a host of guilt. I feel guilty that Hope has exceeded all of our expectations while others are still suffering. I read the stories of these other EB babies and feel that any words I might offer are inadequate because I cannot fully comprehend their pain even though I too am a mom of two EB babies. I really have NO idea just how tough it is to care for an EB patient, because I never got to care for Isaac and Hope (aside from bandaging her legs the first six weeks of life) requires no special care (she IS spoiled ROTTEN).

My heart is heavy for these families and many others and I spend much time in prayer each day for each of them. For their hearts, for their health, and for their healing. I come here today asking that you too might pray for these families and all families dealing with Epidermolysis Bullosa. It is a disorder that so few know anything about. Just the thought of a trip to the ER with an EB baby is terrifying because medical care could do more harm than good. I can also say that within the EB community there is support like nowhere else. When Hope was born we were inundated with support, packages with wound care supplies, soft blankies, diapers, information, you name it. They are a group of absolutely amazing people. DEBRA is an organization that supports families dealing with EB. They have a nurse educator who is AMAZING and who I called on several occasions in a panic, who brought me down from the ledge and reminded me to enjoy Hope. They sent packages and information and were such a comfort to me in those days of fear and the unknown. As you pray for these families if you feel led to donate to DEBRA, in honor of these EB babies that would be great! Your support would be greatly appreciated! Please pass the word on...lets educate people out there about EB! Please visit the blogs of these families and offer your support and prayers. They are some of the most inspiring and amazing families out there!

Tuesday, October 12, 2010

She's Home


Yesterday Bella's body had had enough and the Lord welcomed her home. I never had the honor of meeting her but am heart broken nonetheless. Please stop by her site and offer her family your prayers as they figure out how to go on without her.


Monday, October 11, 2010

Anabella

Friends,

I come to you today, heart sick and on my knees. Bella is in desperate need of our prayers. Her heart stopped this morning and restarted on its own. She is fighting like crazy but her little body is going through it.

This family has been CONSTANTLY on my mind. Bella is the same age as Hope and after Hope was diagnosed with EB, I searched everywhere for other families to identify with. I have been following Bella from day one. I am more than grateful that the Lord has blessed Hope with NO symptoms of EB in the past year, but am heartbroken that other children have to deal with such a horrible disease. These kids live in constant pain. Something as simple as a hug or loving touch can cause blistering.

This sweet family was hoping for a cure and allowed their baby girl to go through a bone marrow transplant and it has been so very hard on her body. We know that ultimately, Bella belongs to God and has already been used in a MIGHTY way to further His kingdom, but as a mom who has suffered the loss of two of her own children, I cannot help but plead with the Lord for this sweet family to be able to keep sweet Bella with them. They have all been through so much.

Bella's dad Tim, said that Bella showed signs of improvement when he read her all of the comments from her blog, I would love it if you would head on over there right now and offer your kind words, prayers or stories of inspiration with them. Please join me in prayer for Bella and for her family.


CSN Review

I have been given the opportunity through CSN stores to review and give away products and thus far have been VERY happy with their site, service and product. They carry everything from unique coffee tables to car seats! :)

They have pretty much anything you are looking for in pretty much any price range. As I browsed through the site I was impressed with the selection and variety of items. If you are in the market for a new car seat, I highly recommend you stop on over to their site. They carry the Sunshine Radian 65 which is a seat that has allowed me to keep Luke in a five point harness and he is SEVEN years old. I also noticed that their seats are on sale for 20 percent off and there is FREE shipping!

Saturday, October 9, 2010

Relief?

So, yesterday I walked into my OB's office for a routine yearly check up. It is somehow easier these days. The office has moved and so the new (beautiful) building doesn't really stir up the memories that the old building did. I checked in, got my pager and took a seat. I looked around at the pregnant women sitting all around me wondering what their story was. Sometimes I seriously have to stop myself from running up to every pregnant woman and warning them that sometimes pregnancy is not followed by a blissful birth and healthy baby. I restrained myself and looked out at the sailboats all over the lake. My mind kept wandering, wishing I was sitting there, a naive pregnant woman filled with hope and joy for my future, unaware that an OB's office was anything but a happy place, anxiously awaiting my ultrasound to see if I would buy pink or blue.

My pager buzzed. I went back and stepped on the scale...ugh...this story goes down hill from here. Despite great effort, I have not lost a pound since my last appointment four months ago. I am weighing in at the heaviest I have ever been. It is frustrating and disheartening. I went in, had my blood pressure taken (which was excellent), undressed and waited for the doctor.

Now, I need to preface this next paragraph with this: My doctor, Dr. B, has been my OBGYN since I was 17. He knows me. He is a wonderful guy. He has walked through the teenage, college, and childbearing/losing years with me. He has taken my losses hard. He is a compassionate guy who has children of his own and I could tell it has always been hard for him to have to be the bearer of bad news. He is a GREAT doctor.

SO, back to the story...he walks in asks how the kids are, asks how my day is and says "Whew, can I just tell you how relieved I am that you are not pregnant or ready to deliver?" My heart stops beating momentarily. Tears well up in my eyes. I choke them back and nod. He goes on to ask about birth control, and how Hope is doing. He finishes the exam and asks how I am feeling physically.

The floodgates open. Tears begin to fall despite my best effort. I begin to tell him how awful I feel, I can't lose weight, I can't seem to regulate my sleep, my emotions or my monthly cycle. I am barely hanging on and I am sure I must be dying.

He puts his hand on my knee, and says, "Girl, you have had how many babies in how many years?" (FIVE in SIX), "Right, I know you want yourself back, and you will get there but you have got to cut yourself some slack. You are doing great. You have lost two babies, are a mom to three young kids, a wife, dealt with the diagnosis of EB for Hope, and JUST finished breastfeeding. I know you want to feel human again, and I promise you...it is coming, but it takes time." I went on to tell him that I just felt like something must be wrong. He asked when the last time I had a Complete Blood Count test was. I had just had one a couple of months ago at my GP along with a Cholesterol, Diabetes, and liver panel. Everything was normal. He assured me I was fine. He encouraged me to eat well, get rest, exercise and call him in a couple of months if I wasn't feeling better.

I left the office feeling defeated. I know having more babies would not be great for my body, but why does my heart still want them so badly? Will it always feel like this because two of my babies will always be missing? Could I have five hundred kids and still feel incomplete? I know I am blessed, I know that, I hate that I still feel this way. I am 31 years old (I know November 1, is just around the corner but I am clinging to 31 with every breath), and yet I feel 82. I started a B12 and a D3 supplement this week in addition to my vitamin and am hoping it will help keep me healthy through flu season and maybe give me a boost. Sometimes something as simple and mundane as an OBGYN appointment can take it all out of you. I have to admit...I felt a little relief walking into a doctor's office NOT holding my breath to hear a heartbeat or see a developing baby, I get what he was saying and I am thankful he cares, it was a little like salt on an open wound though and it is still stinging.

The truth is, I am not a naive pregnant woman. I am a mom. A mom of five gorgeous babies that the Lord trusted me with. Three are here on earth and two are in Heaven and I am blessed. I sometimes daydream about going back to the age of naivety but if I am honest, I am learning to own my own story. The truth is that if I were to go back to life before pregnancy, and God told me, "Kristy, you will carry five babies in your womb. Each baby will bring immense blessings, but your second and fourth babies will join me in Heaven shortly after entering your arms. There will be loss and pain, but also joy.", if he told me that I'd still do it again. I would. In a minute. I hurt, it stings, but I am blessed...God chose me for this, I pray I never waste it. So, if you are a pregnant woman or a woman who is pregnant and you are reading this...NEVER fear. It is true, babies live and babies die. The truth remains, they are blessings, gifts from our God who loves us. They change us and help us become the people God wants us to be and even when it hurts it is an amazing privilege.

Friday, October 8, 2010

Prayers Please

This little girl is the same age as Hope. She has Epidermolysis Bullosa and has undergone a bone marrow transplant in hopes of a cure. She is fighting with everything she has, and her organs are beginning to fail. Her family has been so strong, they are wonderful advocates for their sweet girl. They could ALL use your prayers. Please stop by and let them know you are praying. Her daddy is reading all of the comments to her as they sit in the hospital. They would really appreciate your support!


Thursday, October 7, 2010

Anthem

Check this song out! I LOVE it! It is my new life anthem ;)


Tuesday, October 5, 2010

Maximize Your Mornings

God has really been putting a lot of things on my heart lately and I am dying to share them but I really am not even at a place to put most of it into words just yet. Most of it deals with being more intentional with my time, as a woman of God, wife, and mother. I take my job seriously, but sometimes I get my priorities mixed up. Often times cleaning and housekeeping come before all of those other things and, well, while I FIRMLY believe that housekeeping is important, when things are not prioritized, all things tend to crumble, and while we are doing ok in the Bolte house, I see great room for improvement.

My goal here is to be a woman of God, a woman who has a passion and fire for our Lord, who is in the word daily and is living out the life God called me to live. I want to love Howard well and completely, I want to raise my children to love and fear the Lord and I hope to live out my life in a way that allows me to be the hands and feet of Jesus, living by example and not just by words.

One of the WORST times of day for me is morning. I am ashamed to admit it but in our household, our mornings go a little something like this...

6:50 a.m. Howard gets up and gets ready for work

7:10 a.m. Howard leaves and Hope wakes up.

7:11 a.m. I begrudgingly get out of bed to get Hope, I get her a drink and we snuggle on the couch and watch the morning news.

7:30 a.m. I go in to wake Luke and then go out to make his breakfast

7:35 a.m. I go in and remind him to get up.

7:40 a.m. I now coax him out of bed in a less than pleasant manner. ;)

7:45 a.m. Luke gets dressed and I continually ask him if he is done

7:50 a.m. He sits down and begins to eat

8:00 a.m. It is time for Luke to brush his teeth but he has still not even started eating

8:00 a.m. Luke crams as much food in his face as he can

8:05 a.m. Luke brushes teeth while I put his shoes on him.

8:10 a.m. I help him get his jacket on backpack on and out the door

The bus picks him up sometime between 8:13 and 8:16

I then begin getting the little ones breakfast and dressed for the day

At this point I am already out of steam. I feel like I have wrestled a giant and lost. I have sent Luke off to school all the while barking at him to move on to the next task. I feel like I send him off with a less than stellar start and I begin my day feeling defeated. It sets the tone for the day most days and I want better for my family. I don't want to give them what's left of me, I want to give them the best of me.

I have been praying on this for a while now, unsure of where to even begin and I feel like the Lord has really been telling me that I need to get up earlier. BEFORE everyone. I need to get myself up and together and right with the Lord before encountering my family and their needs. NOW, this is hard for me. I am a night owl by nature and I LOVE to sleep in. Hope still is NOT consistently sleeping through the nights and I am more than tired in the morning. I also struggle because we live in a small home so if I get up early, it tends to then wake everyone else and then I feel like my initial effort has been negated.

I have been fighting Him tooth and nail on this and coming up with every excuse in the book and I feel like today it has sucker punched me in the face. Every verse I went to, every click on the computer brought me to the conclusion that it is time. It is time to change my ways and get my hiney out of bed. EVEN if everyone else wakes up ten minutes after I get up, I will have at least had ten minutes to pray and get up. I will set myself right with the Lord and begin my day with Him so that He can shine through me the rest of the day. I will make my husband coffee and be sure his lunch is ready to go before he is up, I will send everyone off with a kiss and a smile, so that their days start in a way that will help them set the tone for a great day.

I came upon a blog today that I have fallen madly in love with. It is called Inspired to Action and the author there has started a Maximize Your Morning Challenge. I LOVE this idea, because for me a huge tool to keep me on track is accountability! I need others to hold me accountable. This week's goal is SIMPLY getting out of bed early. I would love it if you would check out this site, download the ebook and join us on this mission to become passionate homemakers who put God first, first in life and first in the day. If you have a blog, be sure to link up! I am so excited to see how God uses this to make me a better, daughter of Him, wife, and mom!