Grateful and Heartbroken

Okay, so I have been feeling down quite a bit lately. Things here have been chaotic to say the least. Between financial woes, Howard finishing Grad work, gastrointestinal flu, upper respiratory infections, potty training, recovering from surgery, and just daily life, I have found myself drained and having little to offer pretty much anyone.

Sometimes it seems like when one area of life begins to show improvement, another takes a nose dive. I am guilty of sometimes losing my temper, throwing a fit, and pouting like a two year old. Quite honestly, I am ashamed. I have so much to be thankful for and the Lord has been so faithful. I have seen the hand of God this year, move in our lives and I am humbled and grateful.

Truth be told 2009 was a huge year for us. Hope was our greatest gift this year both literally and figuratively. I sit here tonight amidst my frustrations. I often think back to the days following Hope's birth. I allowed the blisters and EB diagnosis so much power. While it didn't fully steal my joy, the fear of the unknown was more than I could handle. I had no idea what Hope's new EB diagnosis meant for our family. I had researched EB after having Isaac because it was thought that he had it and I knew what we could be in for. I prayed my heart out, but knew that God would answer however He saw fit just as he did with Isaac and with Asher.

Once she was diagnosed, I devoured all the information I could, I read every blog I could find from beginning to current and I tried to be as cautious and proactive as I could be. Several times I remember being scared into a frenzy over small things and calling Geri, the EB nurse in a panic. She was always amazing and brought me down off the ledge, reminding me that there are no givens with this disorder and that we just take it as it comes. She reminded me to treat Hope normally until I had reason to treat her otherwise. I still am struggling with this and honestly still have yet to leave Hope in the care of anyone besides myself and Howard.

For me, this unknown, was Hell. I spent the whole summer keeping hope in sleepers with mittens not wanting to cause harm to her. I continued to follow many of the EB blogs I had begun reading, many of the babies are so close to Hope's age, and I was just astounded by the bravery and courage those babies had. They gave me hope that even if things got worse for Hope, that she would likely be stronger than me.

Seven months have passed as of tomorrow and Hope has yet to get another blister or sore. We are careful with diapers and clothing just because her skin is definitely more fragile and scratches easily. She has sensitive skin and we have to be very careful with soaps and lotions. We avoid band aids and adhesives. All minor things.

I continue following the blogs of other families on the EB journey and typically am a lurker. I mostly feel like I have no right offering advice or support when my baby is doing so well. I feel guilty. God knows I have had my share of heartache and am SO very thankful that Hope has defied all odds. I praise Him every day for her and for his mercy upon us and yet I can't help but feel guilty. These families are some of the most amazing people I have had the opportunity to "know".

It may seem as though I am rambling, but the reason for this post is that within the EB community there are many children suffering, many who's health care does not cover bandaging supplies because they are not a "treatment". Families who are going broke just to try and keep their precious ones as comfortable as possible. Parents who live each day knowing that their touch to their child is likely to inflict a wound or cause pain.

And Lord, my heart is breaking for every one of them. There is not a day that goes by that I am not brought to my knees for these families. This month alone I know of three babies who have died from complications of EB. While I do not know what it is like to daily care for a child who has a severe form of EB, I do know the pain of losing a child, and it is a knowledge I would never hope for anyone. It is gut wrenching to think of what these families are going through.

So tonight, on this last night of 2009, I will spend time thanking the Lord for the blessings of each of my children. I will praise him because Hope thrives, she shows no signs of EB and we are eternally grateful, but i will also pour my broken heart out to him for these families who are suffering so much. I am praying for peace for them and for a cure for EB. Will you join me? If you have a moment, click on one of the links on my sidebar under "Other Families Affected by EB" and read of the inspirational children and their families and pray for them. I assure you that you will be blessed by each of them.

When we found out Hope had EB, words cannot describe how the EB community came through for us. With care packages, information and support. I have honestly never seen anything like it. Even recently I mentioned that Hope was struggling with Eczema and a package arrived in the mail to help us deal with that. I am beyond grateful. If you have been blessed with extra money this year, please consider donating to DebRA. There are just no words to describe what they do. Or if you feel led, donate to one of the families in need of help with medical supplies.

Have a safe and happy new year!

Merry Christmas

Merry Christmas to you and yours from the Boltes! May your holiday season be filled with His gifts.

It's That Time of Year Again

Christmastime has a way of bringing such joy to people everywhere, and yet for those who grieve, it is such a time of paradox. I am not sure just what it is but Christmas has been both amazing and tough for me for a LONG time. My mother died in early January of 1988 an when this time of year begins to roll around those memories somehow find their way in. I spent each Christmas following that one without a mother. I wish I could remember more about that Christmas, yet I just don't.

Each of the grandparents I have lost, died around the holidays. I was blessed that all of my grandparents lived to see me graduate college, and I do still have two living grandparents, but I am certain that the death of grandparents changes Christmas forever. Grandparents, at least in my family are the glue that holds the family together and when that glue is gone, though the family still loves eachother, somehow everyone just quits making an effort.

Things change, life goes on and we have to adjust and regroup. I have always been able to do that and yet the loss of my boys is so strong at this time of year. Perhaps it is the two missing stockings to fill, or the two faces I will never see light up as Santa jingles bells outside their window on Christmas Eve. Two cozy pairs of PJs, I will never wrap for Christmas Eve. I struggle finding ways to include the boys in our Christmas cards without seeming like I have lost it and I still cannot sign a card, "Love, Howard, Kristy, Luke, Ben and Hope". I just can't. I am pretty sure I will always sign, "Love, The Bolte Family" somehow it includes them without saying whereas the previous leaves them out. So many things.

I am so excited to get to share Christmas with Hope this year. She stares at everything with great wonder in her eyes. She loves the lights, the shiny ornaments an the crinkly wrapping paper. She remains untouched by the commercialism that has been brought to the season and that innocence is more than refreshing.

I love talking about the real meaning of Christmas with the boys as they try to think outside of themselves and grasp the magnitude of what the day signifies. Two years ago, Luke was so confused about why on earth Mary and Joseph would have baby Jesus in a "staple" and he was convinced Mary's full name was surely "Mary Christmas" which was why we greeted people with such a phrase.

I love it, I love the magic of the season, the holiday food and spending time with those we love most, yet it does become bittersweet when your heart aches so deeply for those we will never make these memories with. There are times that I am so caught up in it all and am filled with such joy only to find myself weeping as I see Isaac and Asher's ornaments on the tree.

I was crying just the other day and telling Howard that though the void in my heart brings me to my knees most days there is a large part of me that is thankful that though I cannot be there to share our family traditions with Isaac and Asher, they will never know heartache or pain. They are celebrating the birth of their savior in His presence and as much as it hurts me it is also a comfort.

I also think that now, having walked the journey I have, I have a different perspective on Christmas. My heart aches when I think of what the Lord asked of Mary. I know the pain of carrying a child and loving him as long as the Lord allows here on earth with everything I have and then having to release him and just trust God. On a small scale, I am able to have just a tiny glimpse into what life might have been like for her and honestly, when I think of it, it wrecks me.

The road she walked and the load she carried, with the grace she carried it with amazes me. I find myself reading the story over and over and as I read the Magnificat I pray that I am able to have the faith she had, that I can cling to the only One who can make any of this right in a world gone mad.

If you have not visited this part of the book of Luke this holiday season, here is glimpse of what I am talking about:

My soul magnifies the Lord,
And my spirit rejoices in God my Savior.
For He has regarded the low estate of His handmaiden,
For behold, henceforth all generations shall call me blessed.
For He who is mighty has done great things for me, and holy is His name. And His mercy is on those who fear Him from generation to generation.
He has shown strength with His arm:
He has scattered the proud in the imagination of their hearts.
He has put down the mighty from their thrones,
and exalted those of low degree.
He has filled the hungry with good things;
and the rich He has sent empty away.
He has helped His servant Israel, in remembrance of His mercy;
As He spoke to our fathers, to Abraham and to His posterity forever.

Glory be to the Father and to the Son and to the Holy Spirit.
As it was in the beginning, is now and ever shall be, world without end. Amen

I know that many of you out there are hurting, and all I can say is, hang in there my friend. Life is hard, but God is good. Lean hard on Him and He will not let you go. Praise Him and rejoice because this is not all there is. Because Jesus was born we have new hope. Join me in praying for a heart like Mary who gives glory to God even in the most impossible of circumstances. Give it ALL to Him. Take the time this Christmas and really think about the gift we have been given. The gift of life. It is free. We serve a God who loves us that much. No matter how often we fail, he loves us with a passion we cannot even comprehend.

Oh, how my heart aches for my boys this Christmas but oh how my heart sings knowing that there is hope. This is not all there is my friends. Take heart.

I intend to spend time in the next week praying for the hurting hearts out there. If you have a prayer request please feel free to leave a comment or email me at kbolte01@gmail.com and I would be honored to pray with you. I have been so blessed by the gift of prayer you all have given me.

Merry Christmas to you and yours! :)

Happy Birhday to my Hubby!

SO...Today is Howard's birthday and though it won't be a glamorous night, I mean, not if you don't consider vomiting children, cleaning up wet pants, and soothing a teething baby to be glamourous, but I just wanted to say that despite the hardships we have endured and continue to endure, I am beyond words grateful for the fact that Howard was born 34 years ago! I cannot imagine surviving this life without him and I hope he has a great day! I know it isn't MY birthday but on December 21st, 1975 I was given the best gift ever, and I didn't even know it yet (perhaps because I wasn't even born). :)

Despite the sickness in the house the boys and I are planning a little gift scavenger hunt and baking a cake today. They just love birthdays and I LOVE seeing them get excited about surprising their amazing daddy! :)

Thank you LORD for giving our family the best husband and daddy we could ever ask for! (maybe just get him to pick up his socks?) I'm just sayin'

What's New?

"I want an official Red Ryder Carbine-Action Two Hundred Shot Range Model Air Rifle and I PROMISE I won't shoot my eye out!"

Don't they all look THRILLED?

So....it may in fact be a Christmas miracle...Hope (who cries when ANYONE but mom or dad hold her) did NOT cry for Santa!

"I am pretty sure this is a fake Santa" says Luke, "but he probably works for Santa so I will tell him what I want anyway."





I am sorry it has been so long since my last blog post, but life here never seems to slow down! :) Ben has recovered well from surgery and is now potty trained! Potty training is something we had done a bit, but because of his "issues" it was very frustrating for him and just four days after surgery he asked for his big boy undies and we haven't looked back. He has had a few accidents here and there but is doing great and I am relieved that despite my previous hunch, he will likely NOT go to college in a diaper. In fact, he is even staying dry through the night! YAY!

Luke is doing well. He loves finding all of the things that fit in the new gap where his tooth used to be! He is liking school but is having a difficult time that he doesn't get as much "mommy time" as the other two do. I am trying to compensate by snuggling with him a little extra at night but he still feels slighted. :) He is learning that despite all the commercialism, that the holidays are for giving, and not for receiving and has donated many of his toys and clothes to the City Mission.

Hope is also doing great. We have increased her diet to include pears, apples, and bananas. She had no interest in any of them for a few weeks but just yesterday started opening her mouth for them and acting like she wanted to eat! She is now napping in her crib like a big girl, but still sleeping with mommy at night. She amazes us every day. She has developed a bit of eczema recently and we are unsure if her new diet, laundry soap or just weather are to blame so we are experimenting with those things to try and help her fragile skin a bit. Otherwise she continues to thrive and be a reminder to us that with God all things are certainly possible.

Howard...well...required a trip to Urgent Care on Monday. For what?, you ask. He hurt his toe! Seriously. He. hurt. his. toe. Sunday night he carried the sleeping children to their beds and walked on tip toe (to avoid walking on wet pant legs) through the house placing each in their respective bunk. Later that night he was up with THROBBING pain in his big toe. He was unable to sleep because of the pain, so Monday morning we headed to see a doctor, which is the FIRST time since I have known Howard that he has seen a doctor, so I knew that though a hurt toe seems like a LAME excuse to miss work, he must be hurting.

As it turns out he has something called Sesamoiditis. Which only makes the condition sound more ridiculous. Doesn't it seem like an ailment affecting one who has endured one too many episodes of Sesame Street? LOL! Howard did not appreciate my lame attempt at humor that day. :) He has been relatively drugged since that day because there is little that he can do aside from resting and allowing the little bones in his foot to recover from the strain. He is however walking with a cane and kind of reminds me of Greg House MD. :)

And as for me? I am trying to hold down the fort. You know...the life of a mom...not very thrilling, yet crucial. :) I make meals, clean, pay bills, wipe noses (among other things) and read bedtime stories. Add to that the added responsibility of wrapping Christmas gifts (of which each child is getting four this year, one from Santa and three from us, because Jesus received gifts from three wise men), addressing Christmas cards, and planning birthday dinner for my amazing husband. I AM headed today for a little blood work just because I am not feeling myself and am having a few strange symptoms so if you all could pray for those results I would be grateful.

Mostly, we are learning more than ever to lean hard on God and He will not let us fall. We know that if we remain committed to living life according to His plan that he will guide us and make our paths straight. It has been amazing to see how He provides just what we need when we least expect it. We are truly blessed and looking forward to celebrating the birth of our savior next week! We are also looking for some new family traditions to add to our mix. What family traditions do you participate in for the holidays? (ex. we get the kids new pjs that they get to open and wear Christmas Eve.)

A Parking Ticket and a Crashed Funeral

Yesterday was a not so good day for me and just as a method of therapy I am choosing to get it all out here. :) Read on if you like, if not that is okay too! I will be better once I get it all off my chest! :)

It had been a very tough weekend with Ben and his recovery. The catheter started bothering him a lot on Friday so I called the doctor and asked if she would see him Monday and take out the cath if he was healed enough. She agreed.

Howard decided to take the day off to help me with Ben and Hope and to take us to the doctor since we are a one car family. He worked most of the day on grad class stuff and I played with the kids. We left home at 2 to drop of library books, take a few groceries to my grandma, and get Luke from school.

We got to the doctor's office a few minutes early so we let the kids feed the parking meter with enough quarters to get us through an hour. I was meeting a woman who was buying our bassinet from Craigslist at 4:30 so I put enough quarters to get until then.

The doctor was running WAY behind so at 4:27 my phone vibrated and I headed down to the car to sell the bassinet and put more quarters in the meter. As I was coming down the stairs of the building I saw the meter man standing next to my car so I picked up speed. I then saw the woman who was buying the bassinet jump out of her car to go put a quarter in my meter for me. The meter man stopped her and told her it was not allowed. Apparently there is some law that prevents someone from putting a quarter in for someone else? So the man waited for the meter to zero out and then began writing the ticket. I was running (and if you know me, you know I don't run) and said, I am here I am here and I have quarters. He shook his head wrote the ticket anyway and went to the next car.

That is right ladies and gentlemen, the man STOOD at my car waiting for my meter to expire and would not allow a good Samaritan put a quarter in my meter. Merry Christmas! :) So I left the ticket on the window, saved my quarters, sold the bassinet and headed back up to hear Ben SCREAMING as the doctor removed his "pipe". He recovered quickly, picked his prizes and we headed out. The receptionist remarked that she has witnessed similar parking fiascoes a lot recently. UGH! So Howard and I decided to take our pocketful of quarters and put them in any one's meter that was about to expire (we are rebels like that). For some reason it made us feel better about getting a ticket to know a few others would not. :)

Then we went to meet another Craigslist buyer who did not show, so I called the next person on the list who showed up quickly, we made our transaction and we headed home so I could change and head in to the funeral home as a dear friend of our family had passed away Friday.

I called my grandma to see if she needed a ride and she didn't so I told her I would meet her there. I was having anxiety about going because it was the funeral home who handled Isaac's funeral plans and took advantage of us financially in a big way. I have yucky feelings about that place. So I pulled in, pulled up my big girl pants and walked in, only to find that I did not recognize anyone. I looked up at the photograph hanging on the wall and realized I had just crashed the funeral of someone I did not know. Seriously. Only me.

So I run to the car, call everyone I can think to call that would know where I was SUPPOSED to be. Of course everyone had their phone's off so no luck. I went to the only other funeral home in town and staked out in the parking lot until I saw someone I knew and then went in and thanked my grandma for sending me to the wrong funeral home. :) She realized what she had done and thought it was quite funny. Me, notsomuch.

Needless to say, I am glad that today is a new day, Howard is back at work, Luke is at school, Ben is feeling much better sans "pipe" and Hope, my friends, is sleeping in her big girl bed for the first time EVER! Me? I am PURGING this house. This tiny home is bursting at the seams.

SO anyway, if you are still reading this, that was my day...how was yours? :) Ever gotten a parking ticket? Crashed a Funeral?

Update on Ben

Hey Everyone!

We are home from the Surgery Center. He was taken in for surgery at 9:30, out at 10:30 and home at 11:30!! WOW! Things went quick and the doctor is very hopeful that this will be his last surgery. He is in pain but we are hoping the meds we just gave him will help a bit.

They did allow Hope and mommy to accompany him in pre-op and post op. What a blessing that was! The hour after him waking up was rough but he is calmed down and watching as much TV as he wants right now on the portable DVD player! :)

We are likely in for a tough weekend as he will keep the catheter until next week, but we are thankful that kids are resilient! Please continue to pray! We are so grateful for all of you! :)

Sorry to cut this short but I have a little guy who KNOWS I am at his beckon call and he surely has his appetite back! :)

So Much Going On

Well as always the Bolte household is a whirlwind of activity! This week has been a HUGE week for us thus far!

Hope started a little baby food yesterday! I am not sure she cared much for it and am pretty sure she wore more than she ate, but it was a big step!

Luke lost his first tooth this morning! It had been loose for a week or so and Howard had been constantly bugging him to get it out. Luke I have to admit was a little freaked out by the whole idea and just wasn't too sure, but this morning when I woke him up he gave me a HUGE grin and something was missing! He then proudly showed me his tooth! SOOOO the tooth fairy will be making her debut tonight! (What on earth is standard for the tooth fairy these days? Does a dollar still do it?)

And lastly, tomorrow, Benjamin goes in for his FOURTH surgery. I have asked for prayer for him before but never really discussed his issue. Since then I have learned there are A LOT of families who deal with this so we might as well get the word out.

Ben has Hypospadias. Basically what it is is that his urethra was not complete and the opening was not quite where it should have been. His was extremely mild, but we were strongly encouraged to have it repaired, and Howard, being a man, decided it was best to get it corrected.

He had his first surgery just before he turned one. It seemed a success and was an outpatient thing done at the surgery center. About six months later we noticed that it just didn't seem right. We noticed one day while he was in the tub that he was urinating out of two openings, the original one and the new one the surgeon created. UGH!

SOO he had surgery again to repair it. Again, it seemed a success, until a fistula developed and the old opening once again opened. We were assured it could be easily resolved as it was causing MAJOR potty training issues. So we went in and had it repaired for a third time. We had decided that whether it worked or not that this would be Ben's last surgery as the recovery process is GRUELING to say the least. Ben comes home with a catheter for several days to a week and suffers bladder spasms and pain. It is a.w.f.u.l.

Anyway, at about two and a half we had Ben almost potty trained and he suddenly began complaining of pain. I noticed a lump had formed where his old opening was. It looked almost like a pimple. So, back to the urologist we went. She looked and has now decided that he is allergic to the dissolvable sutures she was using. His body rejects them each time and each time the reaction gets a little worse. SO...

The cyst has to be removed which means another surgery, we decided to let her try once more to close the old opening with a new stitch material since he has to have surgery anyway.

This surgery takes place tomorrow morning. I am a wreck. Howard is taking the day off and we will head to the surgery center in the morning. Since Hope is still nursing and will NOT take a bottle I have to take her along. This means we will have to wait in the waiting room. Hope cannot go back with him so I will not be able to go back with him and my heart is breaking.

Any time a child has to undergo anesthesia it is scary and he wakes up so agitated and confused and in pain and it hurts that I won't be able to be there with him. I know his daddy will and I know he will likely be fine but I would covet your prayers for Ben's recovery, that this would be his LAST surgery and that it would be a success, for his dad who will have to see him in pain and for me as I struggle with being on the other side of the door from him.


UPDATED SIDE NOTE:
For those who asked why Howard can't just stay with Hope...Ben is actually a Daddy's boy and will be just fine with his dad, really all of our kids take turns favoring one parent and Howard is Ben's favorite at the moment so as much as it hurts, he will likely ask for him first. I could swap back and forth, but that would just leave Ben alone for a few moments and he won't be good alone and Hope will need to nurse at some point and though Howard ROCKS at being a dad, he hasn't mastered lactation :). He will be just fine with Howard, it is mommy who will struggle. Though I called the surgery center today and they said that depending on how many patients they have that they may allow Hope and me back to be with him so we will see. :)

Half a Year of Hope

I am writing this post with great joy and yet a little sadness. WOW! Time flies. Our sweet Hope Amelia is 6 months old today! I am so excited to see her grow and thrive and yet a little sad to see her baby days coming to an end.

Here is a little bit about what she is doing these days:

Hope is:
up to 14 pounds 2 ounces

25 1/2 inches (she grew TWO inches since her four month check up)

still exclusively breastfed (though we are supposed to start some food tonight. I am having a super hard time with this for some reason. I know I can't breastfeed forever, but I am just not ready for her to grow up yet) Still will NOT take a bottle.

in love with her mommy and prefers to spend ALL her waking hours in mommy's arms

loves when Daddy rocks her to sleep. We think she must feel safe in his big arms. She sleeps best for him.

laughs hysterically at her brothers. She just thinks they are the best. She loves when they are around.

still has NOT had any issues with her EB aside from the fact that she scratches herself easily.

loves to smile and interact with EVERYONE (as long as Mommy is holding her)

is enamored with the Christmas Tree.

is chewing on and drooling on EVERYTHING she gets her hands on.

loves all toys that make a crinkly noise.

has started RIPPING the bows and hats off her head!

is sporting her UNC shirt today because she loves her daddy and he loves UNC! :) He puts up with a LOT of bows and frills so it was the least we could do!

Well we are off to go make her half year birthday cake (I know she can't eat it, but any excuse to eat cake is good right?!)

Thank you all for your continued prayers for our family!