Survival

This morning as I fed Hope her breakfast, I chatted with a friend who was looking for words to say to a couple who has just lost their sweet baby. I have been there, in that place, that deep dark place, TWICE, and yet I still find myself at a loss for words when it comes to this. Perhaps it is because there just are NO words. NONE. Not one single word changes anything. When you were hoping for a bassinet and you get a tiny casket or urn, there are no words that make that better. It sucks. Plain. Simple. Parents aren't supposed to bury their children. It is just not the natural order of things.

It breaks my heart each time I hear of another family, so cruelly being inducted into this "club". I am all too aware of all of the platitudes and Bible verses that are tossed around, and though they are all said with good intentions, they do nothing to help and are likely to just irritate an already emotionally spent couple. I, myself, try so hard to avoid such phrases, and yet sometimes, like word vomit, they spill out despite my clenched lips. We all want to have the words to help someone who is hurting so deeply.

As I have spent time in prayer this morning for this couple, and for my friend who will perform the memorial service for this sweet child, I am taken back to the day Isaac was born. The world just didn't make sense. I had been on the fence about God prior to this and was sure that if this unimaginable pain was coming from Him, I wanted nothing to do with a God like that. I remember lying in that hospital bed on that rainy July day, filled with anger and consumed with sadness. The days that followed were a fog for me. I had reached my melting point and had just checked out. I went through the motions all the while the anger was eating away at me. Howard was the only one with a window to the rage I felt. I hid it as well as I could but took it out on the one I loved the most.

I carried that guilt and anger for far too long. I held onto it as if it were the last thing I had to grasp after losing so much. I was confronted with the idea that a very large percentage of marriages will crack under the kind of tragedy we faced and Howard and I made a pact to survive. Nothing more, nothing less. Just survival. That was it. It wasn't the fairy tale we had hoped for, but our minds could not think far enough ahead to imagine joy again and yet we did not want to have to endure anymore pain so we decided from that day forward we would survive together. That meant him understanding my incessant need to talk about Isaac constantly even to strangers and my understanding his need not to. We dealt with things differently, I worked through my anger and he held on tight. We picked up the slack of the other when the grief had consumed one of us and we retreated to bed. It was a team effort for sure.

In the days and weeks following the death of Isaac, we experienced God's love, in a tangible way. Many people we barely knew acted as the hands and feet of Jesus and poured their love out upon us and my bitter heart began to soften. It is a long process and one that is different for everyone, but as I sit here today, praying for this couple, I am reminded of our decision to survive. For now that is all you can do and really it is enough. God will take care of the rest.

It is crazy to look back to those days where my grief was so thick I could barely get out of bed. They seem like forever ago and yet they seem like just yesterday. I have come a long way from that place. I am far from "all better" but I am changed. I have found joy, and yet I still feel the sorrow, I am a better mom, wife, daughter and woman of God. I still miss my boys each and every day, but I am with God's grace, able to each day put one foot in front of the other and keep on keepin' on, but back then, back on that rainy July day, it never seemed possible. It felt like that anger, bitterness and sorrow had taken up residency and there was no room for anything else EVER. I have since learned that letting go of the anger and bitterness doesn't mean forgetting or letting go of my boys, it has allowed me to fully embrace the gift of each of my children and praise God with every breath.

I would be honored today if you would pray with me about how God would have me reach out to this hurting family. I have not walked their personal journey but do know the agony of losing a child (twice). My heart breaks for them and I pray God would use me however He sees fit. I want them to feel the comfort that God had so graciously extended to us in our times of great need. I want them to survive.

and in the words of Gloria Gaynor...." I will SURVIVE!" (LAME-O but I could not resist)

One Month

In one month our sweet fourth son would be TWO years old. My heart is hurting and is just so heavy today. I am SO grateful for each of my five children and I love them each so deeply as they have changed me profoundly. Even almost two years later though the grief is enough to just suck the wind right out of me. Life has been almost painfully normal recently and for that I am grateful, but it sure doesn't heal the hurt. This kind of hurt will not be healed this side of Heaven. Some days are just too much. When I woke this morning I had a hard time even setting my feet on the floor. I wanted to pull the covers over my head and just hide for the day (But Luke already missed the bus once this week)

Sometimes it might look like we have moved on and have found redemption. The truth is that we have surely moved forward, we just have no choice, but redemption will not be found this side of Heaven.

Last night I was watching "Private Practice" (gasp, I know), but on that show a man spoke to a woman saying he could tell she had lost a child because she had the "dead kid face" and when she asked what that was, he told her that just by looking at her he could see that she had been to a deep dark place where no one ever wishes to go and many will never know, and that she had survived.

It got me thinking...does it show? By looking, can you see my "dead kid face". Is the sorrow always there, in my eyes, or do I really hide it as well as I try? Either way, it still hurts, some days it is an aching and other days it is pure agony. Some days I can barely breathe. Today, I would give just about anything to feel the weight of my sweet boys in my arms just one more time, I would do anything to breathe them in once more and lay my eyes on their precious faces.

Lord, thank you for each of my five children, for Luke's hugs, for Ben's funnies, for the MIRACLE of Hope and for the amazing love and lessons of Isaac and Asher, my heart hurts for Isaac and Asher, and while I know they are healthy and whole and with you, a piece of me is missing. Please help me find peace with that today and help me to see what it is you want me to do with this sorrow as I know it is not for nothing.

PS Do be sure to keep scrolling down for the next post of the cute pictures of the kiddos!

Serious Cuteness

What you cannot see in this picture is that Ben is wearing a pair of Crocs Rainboots in BRIGHT blue that I got for Luke for next year. They are FIVE sizes too big and yet he loves them and refuses to take them off. He is sleeping in them as I type this. :) I LOVE HIM!

So...how stinkin' cute are these kids...I mean, I might be a little partial, but seriously...there is almost too much cuteness here for me to handle!

A HUGE thank you to my friend Katie Mihalak for forcing me out of my house today and for capturing such great shots of my kiddos. It was fun and much needed. It surely helped get me out of my funk!

Update

I am so sorry it has been so long since my last post. Just wanted to pop in and give a quick update. Everyone is healthy and doing well after a long bout of stomach issues. Hope has just recovered from her first double ear infection (which I didn't even realize she had, as I had taken her in for an eye infection, which pretty much made me feel horrible). But she is on the mend and everyone is well.

I have been in kind of a funk lately and am just not sure what is going on. I will try and share more on that later.

For now, I recommend you go to my sweet friend Emily's blog and read her words for a more uplifting update :)

To be fair

Since Ben decided to wear clothes and allow his picture to be taken yesterday we had a little fun making silly faces and taking photos. He seriously is the funniest kid I have ever known! I love him!

On a side note, I have begun also blogging on a blog a friend started and would like to welcome you to either join us or follow along. Living in Northwestern Pennsylvania, right on Lake Erie, we get A LOT of Lake Effect snow, like as in over four feet in the past week just with one storm system. This causes many of us to hibernate, stay indoors and warm ourselves with comfort food. Katie started this blog in an effort to get motivated and get outside even if only for a few minutes each day and photograph the world from our viewpoint. It has been fun so far and it has forced me to trudge out in the snow if only to take out the trash.

You can check it out here...it is pretty fun, and she would be happy to have you join if you would like! :)

Not Going out in the Blurp!

Mom: "Hey guys, there is a lot of snow out there! Maybe we should get bundled up and go play in it!"

Ben: "Mom, I am pretty sure it is a blurp out there!"

Mom: "A blurb?"

Ben: "No Mom, a BLURP! You see, the snow is goin' this way, and that way and all the ways, yep...it sure is a blurp out there."

Mom: "Oh, you mean a blizzard, yes, it is a blizzard out there for sure."

Ben: "Can you hear me mom? I said BLURP, BUH-LUR-PUH, BLURP. NOT blizzard, blurp!"

Mom: "Oh, yeah it SURE is a blurp!"


Hope:
"Mother, are you serious? Have you SEEN what it looks like out there?"


"I mean really mom, it is cold and quite honestly the snow is over my head and over Ben's, I think we should just stay in and snack, there is no need to go out in a blurp"


"No, I mean it mom, I am NOT going out there!"


"This is more like it!"


Blurp avoided.

DISCLAIMER: I would have added pictures of Ben today, but for some reason he picked today to be a nudist, so Hope's will have to do! Just so y'all know, I am not playing favorites, but I do have a few standards for posting public pictures...clothes is one. :)

Happy Seven Months Hope!

Hope is seven months old today!

Here is what she is up to these days:

She is wearing 6-9 month clothes

She finally has enough hair to put a tiny bow in it! (You have NO idea how excited I am about this)

She LOVES the Megasaucer and can bounce away!

She still prefers to be held most of the time.

She has started some baby food but only eats things that match her hair, peaches, carrots, apricots, sweet potatoes.

She still does NOT sleep through the night

She naps twice a day.

Ben is her best friend!

She is starting to allow others to hold her (YAY!)

Her favorite toys are her Glow Seahorse and anything she can chew

She still has NO teeth

We are enjoying EVERY SINGLE moment with her!

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! :)