Sunday, August 30, 2009


Hello from Germville. :)

We started with a sick Ben, then a sick mommy, and now a sick Luke who will be missing school already tomorrow. :( He is heartbroken and though he is a bit better his fever just broke this evening and I want to be sure he is well.

All that said, Howard returns to school tomorrow which means I will be home trying to keep Hope away from the germs, all the while nursing Luke and Ben back to health. Please pray for all involved, but especially for Hope, who is too young to fight this yucky bug off. Both boys ran pretty high fevers. Okay, maybe a few prayers for me too since I have not been out of the house since Friday morning and am getting a little stir crazy seeing no end in sight.

SO...Please excuse my absence from this blog for at least the next twenty four hours or so while we fight off these germs...but DO feel free to join in the conversations in my BlogFrog Community!

Saturday, August 29, 2009

Stay Tuned!

sI must admit that it is getting a little more difficult to blog these days...I mean, sit at the computer, or hold sweet adorable Hope, or play cars with Ben, or do homework with Luke...all of those things, no offense, are top priority over this blog. I seem to do just fine with posting quick updates and photos because I can do that while I nurse, and well that takes up a good chunk of my day.

BUT, I just wanted to give you a heads up of things to come. (In no particular order)

Due to the MANY of you who requested I will be doing a blog about my refrigerator :) So many of you emailed or commented asking for photos and about my orange Tupperware that I must oblige and I will as soon as I get a moment. :)

I will also be sure to put together a gallery of Hope's monthly birthday Lamby photos for you all to compare. As well as a few baby photos of Luke and Ben since so many of you seem to think she looks like them (she does).

I am also excited to announce that there will be a giveaway coming up VERY soon. I am still trying to iron out the details but I will be giving away a MUST have baby item soon, so look for that in the coming week.

If there is anything else you would like to know about us or see here on "Waiting For Happy" we would be glad to share I am sure! Just let me know!

I also want to thank you all for your prayers for Luke (and me) regarding Kindergarten! He is LOVING it! He comes home exhausted and somewhat zombie like and is really hard to press for information, but so far everything is going well. I want to pick him up so I get an extra hour with him in the evening, but he insists that the bus is his favorite part of school! :) We will see if that wears off. We live two minutes from school and he has a fifty minute ride home so it seems like a waste of time to me, but Howard insists I allow him the FULL experience.

He loves gym class and library. He also said he is becoming good friends with a boy named Ozzie and they like to play trains together. He took sunflowers from our garden to his teacher on Friday and was so excited about celebrating his birthday at school Friday too.

Tears flowed for me Wednesday and Thursday but I got up the driveway Friday without tears and Howard commended me for that. :) He was sure I was gonna cry all 180 days. :) We went Friday to help Howard get his classroom set up and we went to the "Teacher Store" to get some fun bulletin board stuff. He has in service Monday and Tuesday and kids in his district start Wednesday. I am going to need your prayers this coming week, I am pretty sure seeing him go will be just as hard if not harder than seeing Luke go as I now am going to have to get Luke on the bus WHILE juggling the littles. :) Howard leaves much earlier and NO ONE in this house is a morning person.

Thursday, August 27, 2009

So, How's Hope?

She loves blowing bubbles

Chatting with her friends in her crib

and the bears on her swing...she likes to talk...(I wonder where she gets that)

Not so happy here...but I LOVE this outfit

Chillin' in her polka dot dress from her future mother-in-law

Cute sunsuit from the Summons Family

Happy girl

Loves her ducky

Fat bottom girl in her cloth diaper

With everything that has been going on with the boys I haven't written much about Hope lately so here are a few photos to show how much she is growing! She is growing and changing so much and I will be honest, I never thought buying the girl clothes and dressing a girl would be the big deal everyone makes it out to be, but I went shopping to pick up a few things in 3 to 6 months for her as she is growing out of 0-3 and WOW. Carter's baby girl clothes are TOO cute. I want them all for her so we can play dress up! :)

PS For everyone that keeps asking. Her bows and headbands have come from Five Blessed Bows. I LOVE them! If you place an order, tell them I sent you! :)

Wednesday, August 26, 2009

A Very Big Day

It has already been a long and emotional day in the Bolte Household. It began at about four thirty this morning when Ben came into our room and crawled in our bed, which is not an uncommon occurance so we just snuggled him in and then Howard said, "Um, I think he has a fever." I felt him and sure enough he did. I got the thermometer because usually when Ben runs a fever we are talking 104 or higher. It was almost 101. Howard began to get up with him to take him to the living room so he was away from Hope and then Ben began to throw up, ALL over Howard. Howard is awesome and took it all in stride. I got up and got some towels and washcloths while Howard took Ben to the bathroom to get them both cleaned up. I got everyone new clothes and Howard went to the couch to lie down with Ben. That is where they remain as I type this from the opposite end of our 1100 square foot home :).

I woke Luke, who is typically very hard to wake up at about 7:30 and he jumped right out of bed as excited as could be. We had fruit and Krispy Kremes for breakfast, a sprinkled one for Luke for his special day, and then we brushed teeth, washed his face and he put on his new school clothes.

The bus was supposed to arrive according to the papers we got at 8:24 and Luke, who got a new watch for school, counted each minute! It was hilarious. At about 8:15 we went outside to be sure we didn't miss the bus. We took some photos and headed to the end of the driveway.

The bus arrived at about 8:27 and Luke jumped right on, never looking back except for me to take a picture. I on the other hand...held it together until I turned from the bus as it pulled away and then the tears came as I walked back up the driveway alone.

I have since been hanging with Hope and cleaning like crazy as aside from a good Krispy Kreme, there is nothing like Method Cucumber Melon All Purpose Cleaner for soothing the soul. :)

I will keep you all posted once I get the scoop when my big boy gets home! Love to all and thank you for the prayers. This is harder than I had ever imagined.

Tuesday, August 25, 2009

How Did This Happen?

It seems like it was just yesterday that I held my sweet firstborn son in my arms and rocked him to sleep. Now, tomorrow he will board a school bus and begin his school career. He is excited! I am not sure if it is school or the Superman backpack, but either way it is all he has talked about for the past week. Our school shopping is done and he is all set.

Mommy however, is not so ready. Don't get me wrong. His schooling was not a decision his dad and I took lightly and we are very sure this is the right decision for him this year, but it is a huge change and I am not sure I am ready. :) I have been in NO hurry for this day to come. Children grow up so fast and really we only get them full time for the first five or six years if they attend school and man that six years flew for us. I love having Luke home, but I feel very strongly that school is the place for him this year.

Please pray for me tomorrow as I say good bye to him. (We have joked that it is good that Howard doesn't start back until next week because he will keep me from chasing the bus, but I am only half joking, I just the news tomorrow for headlines of "Mom chases bus, falls flat on her face") He is a great kid and I know he will do well. My prayer for him is that he will let his light shine each day and it is what I will remind him to do as he boards that bus each day. To let His sweet light shine for all to see! I love that boy and cannot wait to see how the Lord uses him. Please also join me in praying for Luke tomorrow, my big Kindergartener!

Friday, August 21, 2009

You Take the Good You Take the Bad...These are Our Facts of Life

Disclaimer: This post is just what works for ME personally, it is in no way a response to the fact that many moms change blogs. For months I have struggled with this. Coming here to write of my joy when I know this blog is read by moms who are just starting their grief journey seemed wrong. I remembered being in their shoes and wanted to be sensitive to that sting, and was contemplating starting a new blog. I think that for a lot of people that makes perfect sense, to move blogs, for me though, after much prayer and consideration, I feel this is where I belong at least for now. I think it is a personal decision that is different for everyone and there is NOTHING wrong with starting new, in fact I am sure it is what is best for many. This is just me. :)

So I have been doing a lot of thinking lately about what I want to do with this blog. I have been toying with the idea of starting a new blog. I know after losing Asher when I would visit a blog of a mom who was pregnant or had a new baby, it literally made me want to vomit. As each of the families I followed announced a pregnancy my heart would sink. I knew that they were still grieving moms and I knew from experience that having a new baby does not in any way make better what went so terribly wrong. It shifts your focus but doesn't change your reality. I knew that and yet I still had a hard time continuing to visit those blogs even though I was immensely happy for these families.

All that said, I have decided to stay right where I am...I think that for some it makes sense to start a new blog, kind of a fresh start. For me it seems right to just keep plugging on. That is what we do. We take the good, we take the bad and we deal with them. Those are the facts of our life. We have been blessed with five great children and each of them are equal contributors to our family. They are our Ohana, and as we know from Lilo and Stitch, Ohana means family, and family means no one gets left behind or forgotten (I actually cannot stand that movie, but LOVE that line!.)

The thing is, we are living here on earth without two of our boys and though we miss them dearly and ache for them daily, we want to show that our God is bigger than any circumstance we could imagine. He brings us through it all and we continue to keep on keepin' on. My hope is that this blog can be a source of hope, not in that having more babies will fix the brokenness of the loss one feels after losing a child, but that in whatever form God sees fit, he has a plan and will carry you through the toughest of times. Sometimes this means continuing to grow a family and sometimes it means many other things. He uses our brokenness.

We miss Isaac and Asher and we think of them daily, heck my emotions run the gamut daily, I am elated yet I am sad. That is life. It is what it is. We are forever changed by Isaac and Asher and it shapes and molds most of what we do daily. We are different people forever because of them. Though there is a huge emptiness in our hearts, we must continue to press on and do the work the Lord has put before us. We have bad days where it is tough to function and we have other days that almost seem "normal".

Our story is multifaceted. We have a child who was born early, but perfectly healthy, a child who died at six days old of severe microcephaly, a cute redhead who was born with a birth defect called hypospadias that we are STILL trying to get fixed despite three surgeries and the fact that it is a mild case. A sweet boy who died after thirty five short moments in our arms, due to severe microcephaly, fluid on the lungs, and a heart defect, and a sweet girl who makes our hearts smile with each and every coo who has an extremely RARE disease called Epidermolysis Bullosa. Some might say we hit the genetic lottery, and not necessarily in a good way.

It isn't neat and pretty and tied up with a bow but it is our life. It is real, and this is how we are living it. I would be honored if you would continue to follow and pray for us, but if it hurts right now to see pictures of babies, I get it. I do, I have been there. It gets easier yet that nagging never really goes away, at least for me it hasn't. I still have moments where I cry out to God wondering why nothing can be easy, yet when it comes down to it...this is His plan for me, this is what is best, and we are making the best of it. Sometimes it hurts like Hell and sometimes the Joy is overwhelming. I am here to be real and share it all.

Thank you for joining us on this journey. You have no idea the encouragement you have been and continue to be for us. When I have one of those whiny days where fear is creeping in and it all seems to be too much, I come here and it is like a sweet community of people who love us, are pulling for us, and petitioning God on our behalf and I KNOW how blessed we are!

Thank you for continuing to pray for our family, I can say that my fear for Hope is lessening most days, I am enjoying her more, and she is doing AWESOME. I have to think your prayers have something to do with that. :)

Thursday, August 20, 2009

Six Years Ago I Became a Mommy

Six years ago on August 20th Luke was born and made me a Mommy. My life was forever changed from that moment and I am so glad it was.

Luke was five weeks early. My water broke the evening of the 19th as we were getting ready to have family over for my Mother In Law's birthday. I was terrified, not knowing if it was "too early" as I had always been told I would likely go overdue with my first baby.

We raced to the hospital, but not much happened. It was a slow labor but on the afternoon of August 20, on his grandma's birthday, Lucas Robert Bolte made his appearance, weighing in at five pounds three ounces. He was healthy and perfect.

Today he is our big boy who is about to start Kindergarten next week. He has a type A personality (I have no idea where he gets that from) From the time he could sort toys he always like things neat, put away, and put away properly. He is a rule follower and likes order. He is smart as a whip (I am NOT biased). He learned his alphabet by eighteen months and could write his name at two. He LOVES math and can do double digit addition and subtraction and is working on division...all on his own...he is curious about everything and I love that about him. He is thoughtful and gentle (his little brother has a tendency to be the winner in any physical altercation, I mean if there were such things in our house, which of course there are NOT because my kids are perfect).

Some of Luke's favorite things are, the color blue, sports of any kind, anything on wheels or construction anything. He loves being outside and fishing and playing at the lake. He could eat a whole cheese pizza if I let him, he also loves spinach, celery, carrots, green beans and ANY fruit. His favorite drink is unsweetened iced tea, and if given the choice of snack he will choose a salty one versus sweet.

This morning, Ben got up first and could barely contain himself as he and I adorned the kitchen in Monster Truck decor for breakfast. He kept proclaiming "Luke's birthday is startin' up!" We then got ready and went to Chuck E Cheese for lunch, along with everyone else in Erie County.

We then came home and decorated an "Ocean Cake" per Luke's request, and the cake itself HAD to be blue so I mixed in a box of blue Jello and Blueberries and it was actually quite good. Howard and Ben decorated the cake with candy fish and rocks while Luke, Hope and I went to school to meet Luke's new teacher and see his classroom. We then came home and had some family and friends over to share our ocean cake.

We are now officially birthday-ed out. I am so thankful I get to be a mom, through the good and the not so good, it is worth EVERY minute. Children certainly are a gift and Luke was certainly a perfect first "gift". He started me out easy, making me think I had this parenting thing all figured out, giving me confidence as a mom and in my mommy instincts, which would by subsequent children be shaken as I learned that I NEVER have anything figured out and the only One I can trust is God.

Sunday, August 16, 2009

Picture Pages, Picture Pages

Last week we took a QUICK trip to Pittsburgh to visit friends, the zoo and get some photos done by our friend Ginger. Here are some of my favorites of the weekend. She did a great job capturing my kids despite the fact that they were WAY overtired and beyond their breaking point and did not cooperate AT ALL! :)

(If you are in the Pittsburgh or Erie area she is great. Check her photography and design business out here)

Mommy and Hope after our evening at the zoo.

Ha! Look how sweaty Luke is! They played hard all day!

Don't freak out (though I did) Howard had a good hold on Ben and there is ground below that fence before it drops off! :)

Loving on Hope

The Bolte Girls

Cutie Boys in their tshirts Ginger made for them

Hope getting some Lukey love

Silly Boy

Apparently Ginger is FUNNY!

Okay, so this could be my favorite picture of Luke EVER! How handsome is that boy!?

Such awesome boys!

The Bolte Family in Pittsburgh
The Hites boys and two of the Bolte boys checking out the barges on the river

Look at that posture! :) I know it is hard to imagine, but Ben would NOT cooperate!

Rock it out Ben!


Crazy boy fun!

Thursday, August 13, 2009

Your Questions Answered

Many of you have written questions that I have never addressed so here goes:

How do you get that little bow to stick to Hope's head?

OK, so when I was pregnant several people suggested that I use a little gob of Vaseline on her head and stick the bow in it. It only stays for pictures and I SWORE I would never do it but alas I have.

Is it possible that Hope has been misdiagnosed?

No, I don't really think so. Electron Microscopy is how EB is diagnosed and it is a very precise science. We are confident that the doctors handled her biopsy correctly and thus the diagnosis stands.

If Hope has no symptoms of EB, how did you know to test her for it?

She has no symptoms now. She did after birth. The hospital bands rubbed her little heals causing big blisters. We did have to wrap her little feet for the first three weeks of her life. Because we did not know how to properly care for her blisters it took a little while longer for her to heal. Once we learned techniques of wound care it was much better.

The day after we were discharged from the hospital we took her to Pittsburgh for a biopsy and electron microscopy. We also assume Isaac had EB. He also had blistering. His biopsy however was NOT done properly and therefore his negative results were inaccurate.

In order to do a proper biopsy, a blister has to be created by using a pencil eraser to cause friction and then before the blister forms that skin is taken for biopsy so changes in the skin can be seen under the microscope.

Where do you get all of Hope's cute clothes?

Honestly, times are tough here...most of what she has are either gifts that others have so kindly showered her with or are hand me downs from friends.

You mentioned before that you were cloth diapering Hope. How is that going?

Honestly, I LOVE it! It is another of those things I SWORE I would never do, but am so glad I changed my mind. It is fun. I am a geek. I honestly so look forward to changing her diaper. They are just so cute. We have lots of different kinds. A good friend got us a few Bum Genius One Size and I like them, but they are a little bulky on her yet. Right now I am loving just old fashioned prefolds and Thirsties Fitteds with covers. We also have a few Fuzzi Bunz we use for outings and such.

I LOVE washing them and hanging them to dry. There is nothing cuter than a line full of little diapers! :)

You had talked before about struggling with homeschooling or sending Luke to Kindergarten this year. Have you made a decision?

Yes. Well I think so. :) He will be going to school on August 26th. I will be honest...I am freaking out about it but after much deliberation and prayer, Howard and I think this is best for him and our family right now. We live in a community with a very small familial Elementary school. Howard and I both went to this school and know most of the teachers and feel very comfortable sending Luke there.

I also really feel that Ben needs more of me and this way I can focus on him a little more, if Hope allows. We have decided that we will continually monitor the school situation and if we feel there is a better decision at any time we will change our minds.

So there are a few answers to your recent questions...if you have any more feel free to ask away!

Prayers and Canimals

I sit here tonight gripped with fear...I am not sure what has happened today to cause it, but it is creeping in and I am fighting, yet the fear seems to be winning. I panic with every "symptom" I see in Hope. Is it a heart defect? Is it internal blistering? Is it colic? My mind is racing and I cannot seem to focus. Please pray for me and for sweet Hope. I can never tell if it is a "mom's intuition" and something to follow up on or Satan trying to steal my joy with fear. Please pray for discernment for me. I want to be Hope's best advocate and yet I want to enjoy her and not worry incessantly with each whimper, cough and whine.

On a totally different, extremely hilarious note this is a conversation I had with Ben last night as we were getting ready to read bedtime stories.

Ben: "Mommy, I want the book with the canimals in it."

Me: "Canimals? I am not sure I know what book you mean buddy."

Ben: "Mom! You know the ones that hump."

* He of course meant that he wanted the book about CAMELS. I am pretty sure I will be laughing about this one for weeks.

Tuesday, August 11, 2009

Confusion and Delay

1 Corinthians 14:33 "For GOD is not the author of confusion, but of peace"

If you are a mom to young boys you are likely familiar with Thomas the Tank Engine (FYI he is NOT a train, per Luke, he is a tank engine and if you refer to him as a train in Luke's presence you WILL be corrected) Luke began loving Thomas at about two years old. I cannot say that it has ever held my attention, but one character Sir Topham Hatt can be heard in each episode loudly admonishing "This has caused confusion and delay" when something goes wrong. That quote always sticks with me when I hear it. Confusion and delay. The mere words grate on my nerves.

I am, by nature, a creature of order. I like structure and organization. Blame it on birth order, type A personality, or OCD. I am a fan of labels, shelving, and hand sanitizer. More exciting to me than a new designer handbag would be a trip to "The Container Store". Last summer I purchased a set of containers from Tupperware for organizing the produce in my refrigerator and I will admit that when I open that refrigerator door and see my perfectly organized refrigerator, I feel a sense of relief. Even when the rest of the world seems out of control I can open my fridge and if only there, I can find order. It makes sense. Produce is in it's appropriate container and stacked neatly in bright orange containers on one shelf. Condiments are organized and placed in the door, meats and cheeses stacked neatly in the drawer. Yogurts are lined up just so on the second shelf and beverages are lined up according to size and use on the top shelf. Call me a lunatic, but if my refrigerator is in disarray, it causes me confusion and delay and it makes me unsettled.

As I look back on the past few months, I have found that that unsettled feeling has settled in to my heart. It is more than a disastrous refrigerator causing this uneasiness, it is an extremely rare skin disorder called Epidermolysis Bullosa. If you know me you also know I am a researcher. A car seat purchase proves agonizing for Howard as I MUST research prices, reviews and specifications of each and every seat in the Milky Way Galaxy. Hope's diagnosis has been much the same. I am CONSTANTLY researching and trying to better understand how to care for my girl.

It drives Howard insane. I have devoured EVERY piece of info out there on EB and I will admit I maybe know too much. This knowledge along with the diagnosis of EB have cause significant confusion and delay in my life in the past two months. As I sit here typing a perfect, healthy amazing little baby girl sleeps on her loving daddy's chest. This is a privilege I do not take lightly. We have honestly enjoyed each moment with Hope, but I will just say it, she is high maintenance. We have never been the parents of an easy going baby. Maybe it is partly our fault, after all we have endured we do not put our babies down. We snuggle, hold, kiss, and rock them to their heart's content, only putting them down for diaper changes and when they insist upon having a little space (and they do, occasionally).

Hope is a screamer. She will be happy and smiling and as quick as you can blink she is red faced and exercising those lungs to their fullest capacity. There is pretty much no in between. It causes anxiety for me, for Howard, for the boys, but mostly for me. Crying has never rattled I said, our boys cried and I was able to attend to all of their needs and know that they were fine, just crying as babies do and I could just rock them or even lie them in their crib to work it out.

With Hope it is different. Her EB has caused confusion for me. I never know what is a "normal" baby response, and what could be a symptom of her EB rearing it's head. Now in being honest, I will tell you that I look at Hope and I praise and thank the Lord above each day that though she has been diagnosed with EB she is NOT showing signs of it. She has no bandages, she has no wounds, she nurses, she wears normal diapers and normal clothes. The only adaptation we make is that we keep little socks on her to protect the healed skin on her tiny heels. The skin is still fragile and we want to keep it safe. I kow how blessed we are. I do, and I do not take it for granted.

I think maybe partly because of all we have been through, each whimper and cry causes confusion, and I'll be honest, panic in my heart. Questions ravage my sanity. Is she blistering in her mouth from my nursing her? Is her cry a little hoarse because there are blisters constricting her esophagus? Is her airway clear? Is her diaper causing a blister? I am thankful that the angel by the name of Geri who also is a nurse who specializes in care of patients with EB is so patient and reassuring with me. I have her number in my cell phone and call with each panic attack, after which she assures me that Hope is fine and doing GREAT.

I know this. She is growing, she is GORGEOUS, she is thriving and yet in the back of my mind a little light flashes EB, EB, EB, EB. It is just enough to cause doubt, just enough to cause confusion, delay, panic, anxiety and I have to believe it is not coming from the Lord. In fact I know it isn't. There is one who creates confusion to steal our joy and man he is battling me EVERY day. He is relentless and never gives up. He is sneaky and will find an opening wherever he can.

The Lord "knitted" Hope together in my womb. There is no way that he "knitted" any part of her accidentally. He knitted Hope together allowing for a mutation in her Collagen. She has been diagnosed with EB and yet He is showing us that ONLY He knows how to care for her. Only HE can determine how it will manifest itself. I sometimes look at my life and honestly think, okay God, can I just get a break, can you just make ONE freaking thing go smoothly without incident, and then I look at the sweet faces of other babies facing EB with courage like I have never seen. I look at them and see beauty, and yet I wonder and even feel guilty that I allow this confusion into my heart and Hope is THRIVING.

A family member recently hushed me when explaining her diagnosis to someone. Proclaiming that Hope does NOT have EB and if we claim her healing then she is healed and that is the end of the story.

Yeah, I don't buy it. I believed for healing for Isaac and Asher and they are healed, not as I had hoped, but healed nonetheless. Hope will be healed. Whether here or in Heaven is not up to me. Her life is in His hands alone. More amazing than denying that she has EB to me is the fact that she in fact HAS it and is doing so great. Has he healed her? Maybe. I know he is capable, yet I cannot pretend to know how He will choose to work in her life. What I do know is that I am a mom, a human who needs help. I need your help. Please help me to lose the confusion and delay. Please pray for clarity and peace. I wake up each morning and my heart melts all over again that I get to be the mom to the three amazing children in my home. My heart also still longs for the two who's faces do not greet me, yet I know without a doubt that the Lord has used and is using their lives even still and I stand in awe that He trusted me with such miracles. FIVE sweet miracles. Lord please help me to keep that in perspective!