I am a 30 something year old mom of five precious boys and two sweet girls. Five of our children are here with us and two are in the arms of Jesus. Our sweet baby girl Hope was diagnosed with Dystrophic Epdermolysis Bullosa and our youngest son came to us through adoption, our youngest daughter through foster care, and I've recently been diagnosed with malignant melanoma the Lord has shown us just how Faithful He is. We will continue to Journey and follow Him where ever He leads. We feel very blessed that God chose us to be the parents of each of our kids, and we look forward to what He has in store for us in foster care!
Sunday, November 1st I will turn 31 years old! This is something I am struggling with more than I thought I would. Not at all for reasons you might think. It isn't because I am older. I actually enjoy getting older (at least so far) as each year offers something new and I am finding each year to be more meaningful than the last as I learn how to appreciate where I am.
My struggle stems from my mother's death. I am becoming increasingly aware that I am inching up on the age my own mom was when she took her own life. As a mom who has lost her mom, I have battled the fear of death for quite some time. Not really fear of death so much as fear of dying and leaving my kids without their mom. I know what it is like to grow up without my mom and I do not want that for my kids. So for several years I have found that I tend to run to the doctor and panic over every single pain thinking the worst.
I am two years from the age my mother was when she died. That is so strange and surreal for me. I can't really describe it, but my heart sinks when I think of it. I think partly because I look at myself and see maybe a little more of her in me and my mothering and marriage than I might like and yet not. She was a great mom. She obsessed and tried to be the PERFECT wife and mom and while some might see that as a positive, it ultimately lead to her demise. I sometimes have to stop myself when I get crazed with anxiety over my own perfectionism.
I think the other part stems from I can see so clearly what she missed. She was so caught up in putting on the perfect front that I think she often missed the moment right in front of her. I am trying so hard not to do that. I am trying to embrace each day and moment with my kids. She died in January of 1988. I was in third grade. She missed EVERY single thing from that moment on and I from that moment had to learn to survive without her. I no longer had a parent who was involved in my schooling, a room parent. She missed every school party, every concert, game, graduation, dance, boyfriend, break up, college, engagement, wedding, and grandchild. I grew up fast, faster than I ever wanted to and have harbored much resentment toward both of my parents. My mom for deserting me, and my dad for checking out in his own grief.
I sit here today, two days from thirty one and I look back at the past thirty one years. There has been so much pain and also so much joy. As I reflect on the past five years especially I can only be grateful that I have found hope and love in my Heavenly Father. I am broken and yet so grateful for all I have been given. Because of my losses, I can see more clearly. I know more fully what kind of mother, wife and woman of God I want to be and what kind I don't want to be.
The past thirty one years haven't been easy that is for sure, but I am so thankful for each and every one of them. Though it still hurts to live without her, I am thankful I can learn from my own mother's mistakes and not follow the same path she did. So I may be one year closer to the age my mother was when she fell ill, but I do not have to follow the same path. I pray that the Lord continues to direct my path and that I am able to be obedient and follow Him to become the Woman, Wife and Mommy he wants me to be.
This week is Epidermolysis Bullosa Awareness week. As most of you likely know, Hope was diagnosed with the Dystrophic form of EB shortly after birth. She had blistering on her ankles from the hospital bands and for the first month or so of life we had to keep her ankles and feet bandaged. She has since not had one single issue associated with EB. She does have reflux and MAYBE as had a few blisters in her throat but she is on reflux medicine and doing just great. She is growing and thriving and beautiful.
After her diagnosis I have to admit that I was scared. Many generous wonderful people who are walking a journey I cannot even fathom in the EB community contacted me offering hope and support for a condition that is so unheard of in most parts of the world. I devoured all the knowledge I could on Hope's conditions so that I could be the best advocate for her.
That said, I cannot even begin to pretend to know what a day is like for a child who has moderate or severe EB. I have been blessed to come into contact with a few of these families and I check their blogs daily for updates on their AMAZING little ones. They inspire me. They make me realize how blessed we are and in the moments where fear grips my heart not knowing how EB will manifest itself in Hope in the days and years to come they cause me to "get a grip" because for today Hope is thriving, she wears normal clothes and diapers, she breastfeeds exclusively and is handled just as any other baby her age.
EB is a blistering disorder of the skin. There are three types, Simplex, Junctional, and Dystrophic. Each of these types can be mild to severe and are characterized by how "deep" the blistering goes or at what layer of skin the missing or mutated anchoring fibrils are located.
For many EB patients, each day brings severe pain, fear of infection and struggle with nutrition. These kids are some of the strongest people I have ever seen and yet their parents often endure strange stares and glares because people make assumptions that these children have been neglected or abused. SO on top of caring for a child who is in constant pain, sometimes having to deal with the fact that the pain has been inflicted by them unintentionally, they have to deal with the fact that the general public has no knowledge of such diseases.
The scary thing is that many doctors also have no knowledge of EB. The thought of Hope ever having to be taken to the ER or being hospitalized literally sickens me. She cannot have band-aids or adhesives on her skin so she has to be treated differently just as all people with EB do which poses quite a problem for hospital staff who have never heard of EB and are reluctant to follow the orders of a parent (who from what I have seen of other EB parents are pretty much qualified to be nurses or doctors themselves.).
Anyway, this week is about getting the word out. Educating people about EB and bringing attention to the fact that there are many people out there suffering with EB. There is a chance that a cure could be on the horizon yet EB still remains so unheard of that more funding is desperately needed!
I do not for ONE single moment take lightly how the Lord has worked in Hope. I am grateful that she continues to thrive and astound us, but there are many children and adults out there suffering with this disorder who need our help. I cannot pretend to know why some people get a form that is so mild and others die from it, but what I do know is that God loves each of us equally and if we can help in any way we should.
So if there is any way you have the means, please consider donating to DEBRA. They are doing remarkable work and have been such a helpful resource for me. They even sent us a welcome home package when Hope was born with some sample bandaging supplies, a soft blankie, a couple of cloth diapers, loads of information, and an IV kit should she ever need to be hospitalized. They are a remarkable organization that deserves more recognition and funding for the work they do. Please join us in supporting them on this EB Awareness week and if you have time, click on one of the families blogs to the side of this blog under EB Families and get to know these kids and their remarkable families. I know you will be blessed and amazed.
My sweet friend Alyssa welcomed a new baby into her little family today. Welcome Henry Adam! He was born at 34 weeks and is a feisty 5lb 3.5 oz and is doing really well! Praise God! I just bet Sydney is smiling down on her family with that "Big Sister Pride!" Congratulations Byrd family!
One of my recent struggles is with the idea of "Doing Life Together". It is one of the things our church promotes as a key ingredient to living life the way the Bible tells us to. I love the idea of it and believe that God intended for us to be involved in each others' lives. Having a group of people that you REALLY feel connected with and that are there living life with you day to day. People you can call just because and people you see and fellowship with often. Friends who act as accountability partners who help each other grow in their relationship with Christ. Sounds great right?
The thing is that Howard and I are finding this a hard thing to do. I have been in a funk lately and I think it stems from feeling secluded and disconnected. Basically I am lonely. We do have many friends whom we love and we know would be there for us in a moment if we need them, don't get me wrong. Through the darkest moments of our lives there have been people willing to carry us and make us feel as loved as we have ever felt. During my pregnancy with Asher I honestly had never felt more loved and cared for in my life.
It was a fantastic feeling, and honestly we were designed to need each other. We are having a really hard time though finding a way to live this out in daily life. Not just in times of crisis, but in the daily hum drum life. We have been a part of a couple of small groups that have been great but eventually dynamics change within the group and as people live their lives it seemingly just becomes too tough to get together regularly.
One of our issues here I believe is that the church we attend, though a FANTASTIC church is not in our own community. SO no matter what, when getting together with others from our church either we are traveling or we are asking others to travel a good 30 minutes and it seems in every ones SUPER busy lives that is just not realistic. (thought that is another of my issues lately...should we be SOO busy that we cannot take the time to make group life a priority? UGH! That is for another day!)
For a little while now Howard and I have been struggling with the idea of finding a new church in OUR community or just starting doing "house church". The thing is that we really love our church. We love the teaching, the friends we have made and the children's ministry. Yet we are finding it unrealistic to be TRULY connected because of the distance. The kids are not going to Sunday school with their school friends and the friends we have at church we see only on Sundays. We are starting to feel like authentic community can't be felt this way. SO we are torn between leaving a church we really love and finding community out here in the boondocks or continuing with the church we love and feeling disconnected and lonely. UGH!
I would love to hear what you all do for "small group", "group life" or just to feel connected. Do you attend church within your own community or do you travel? What is your take on group life?
Okay, so the title may not really fit, but I love me some Jimmy Buffett, and this is my blog so I can name this post whatever I want right? Plus it is better than the alternative, "Crazy Woman Wants to Dig up Her Babies' Remains" Right?
Things here at the Bolte household have been as fast and furious as ever. We are at a difficult spot in life, but are trying to remain focused on the gifts the Lord has given us knowing this life is not all there is.
Our days are filled with matchbox cars, Geotrax, and Dinosaur Train. Intermixed with household duties, baby giggles, and naps. Yet, somehow grief sneaks in sometimes knocking the wind right out of me. I look around me and know I am blessed. Luke is always looking for snuggles, Ben is always making me laugh so hard I cry, and Hope, well she warms my heart and reminds me of just what is possible with our Lord. Those kids are perfect for this family and I love them to pieces.
I am brought to tears of gratitude at the end of most days as I look at my sleeping beauties. (don't tell the boys I referred to them that way) It is true that this far into my grief journey that I function better than before and with each passing week though I miss Isaac and Asher just as much as I ever did, I find myself leaning harder on God which in turn takes a bit of the sting away.
Lately I have been having one huge struggle. It deals with the cemetery. When the boys died we chose to have their bodies cremated, but I could not stand the thought of an urn holding baby ashes in our home. So, we chose to have their ashes buried at the cemetery. I thought I needed that place to go and feel close to them. A place that was theirs, they would never claim a room in our home so I thought the least I could do was give them each a space of their own. So we purchased burial plots (does anyone ever think they will be purchasing one baby cemetery plot, let alone two?) and we ordered Isaac's headstone.
Isaac's headstone sits upon that hill alone. This is where I struggle. I have most of the money for Asher's headstone. It was graciously given to us and is sitting in an account all it's own. And yet each time I go to make the order I am stopped in my tracks. I had trouble ordering Isaac's stone. It all made things seem so final and it was so hard for me, so I thought that this feeling, this roadblock was the same, and yet I have recently discovered that it is not.
You see my ideas have changed and I am stuck. I desperately wish we had never chosen to have the boys buried. I wish we had an urn here at home or had scattered their ashes somewhere beautiful. I have come to hate the cemetery. I mean HATE. I don't go there ever. I know for some people it provides a place for them to feel close to their loved ones and for all people grief is different and if that helps I say it is awesome. For me it is holding me back.
When I visit the cemetery it makes me focus on death. The fact that the boys are not here takes over my brain and I lose sight of everything else. At home and in every day life I try to focus on the fact that they live and that because they have eternal life, this is not the end. In day to day life I am able to see the beauty they brought to this family, this world, and yet at the cemetery, I see a final resting place, and though I know it is not FINAL by any means it plays nasty tricks on my mind and gets me down. So, I don't go.
Which brings its own set of issues. This means that there are two little boy's resting places up on a hill in a cemetery that is mostly uncared for. Asher's gravestone has yet to be ordered and there are likely weeds all around. This really gets to me a lot. I used to go up to care for Isaac's spot and wonder why all of the other baby plots were so bare. I mean, didn't their parents miss them and want to take care of them? Until now, now I see. Now I cannot bring myself to go and care for my boys' spots because it sucks the wind out of me all over again. It points my eyes and my focus downward instead of up where they belong and it is hard for me to shift my focus after being there. (this may sound crazy, I am just keepin it real)
Last night I finally shared all of this with Howard. I thought he would think I was nuts. He didn't, or maybe he just hid it well. I started the conversation with "I want to go have Isaac and Asher's ashes dug up". Starting a conversation like that I am pretty sure gets the attention of the listener. :) I explained pretty much what I have tried to explain here telling him that I felt like the cemetery thing was really holding me back and he nodded and said, "but YOU wanted the cemetery plots Kristy. You said you needed that for your grief." He is right. I did. I have grown and changed. I don't need or want that anymore. I want Isaac and Asher to live on through us and I want to remember them everywhere and in all things. I just don't need the pressure of keeping up appearances at a fake spot where instead of feeling close to them I feel as far away as I have ever been.
Now none of this is to say I think it is bad to have a cemetery plot. I think it works for a lot of people. It gives them a place to go to remember and be close to their loved ones. Grief is so different for all people I think that whatever you have to do to deal with it is just fine. I know for a lot of families cemetery visits are helpful and comforting and that is great. I just don't feel that way for myself. If I had my way about it, I would dig up both boys bring their ashes home and scatter them at the lake or something and donate their plots to other families who needed that space and the money for Asher's gravestone to another grieving family to purchase a stone for their own child if that would be helpful for them.
I am not even sure if any of that is possible, but if I had my way, this is what I would do. I am tired of giving death such a hold on my life. I am determined to focus on life. Isaac and Asher lived. They were here and they were real. They changed hearts and they changed lives. They continue to live on and astound us and there is nothing final about that. I feel like the whole cemetery thing pulls me back to thinking about the finality of their physical death and that is not where my eyes need to focus.
Well my blogging is likely to be limited for a while as my laptop has crashed and I am using Howard's, but I did want to let you know that we used Random.org and chose our winner for the Miracle Blanket! The number chosen was #4! So the 4th comment was Devin! So Devin, email me at firstname.lastname@example.org and I will give you the info you need! YAY!
Thank you all for entering! I have another giveaway I am planning for next week so stay tuned you could be a winner yet!
It is so hard to believe but our little miracle girl is FOUR months old now! She is doing great and continues to astound us and especially the doctors! :)
Yesterday at her WELL child visit. She was 12lb 10 oz and 23 1/2 inches tall! :) She got shots and had kind of a yucky evening yesterday but seems to be herself again today!
At Four Months she is:
Wearing mostly 3-6 month clothes
Still exclusively breastfeeding
Still waking once or twice at night to eat
Loving to be held pretty much all the time!
smiley most in the mornings (unlike everyone else in this house)
in love with her brothers. Ben can make her smile like no one else despite the fact that he also makes her cry occasionally while "playing" with her.
grasping objects and putting them in her mouth
chewing and sucking her fingers
will NOT take a pacifier or bottle no matter how hard we try, so no breaks for momma!
loving her swing and Bumbo seat
finally enjoying bathtime
I have to tell you friends four months ago when we got Hope's EB diagnosis, I never imagined life could be so "normal" with Hope and the only signs of her EB are the scars on her feet which remind us daily of the gift we have been given in her. Her skin is definitely more sensitive and she scratches easily and we have to be a little more careful with elastic but she has had NO issues in months. I praise God every day for the miracle He is doing in Hope.
We love her so much and do not take a moment with our kids for granted because of the lessons we learned from their sweet brothers Isaac and Asher. While I would NEVER ask for those kinds of trials again and while I wish more than anything Isaac and Asher could be here to snuggle, I am eternally grateful for the footprints they left on this family. We love with open and grateful hearts and live life in a way that never would have been possible without them. They have made such a huge impact on our family and are remembered each and every day. They sure are still active members of this family and two of the best big brothers Hope could ask for!
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 ~
"When I Lay My Isaac Down" - Carol Kent "The One Year Book of Hope" - Nancy Guthrie "Holding on to Hope" - Nancy Guthrie "Empty Cradle Broken Heart" - Deborah Davis "Waiting With Gabriel" - Amy Kuebelbeck "Streams in the Desert" - LB Cowman "It Takes a Parent" - Betsy Hart "I'll Hold You in Heaven" - Jack Hayford "Crazy Love" Francis Chan "Radical" David Platt