How Did This Happen?

When did my baby get so big?

November 15th, A Red Letter Day

On November 15th 2007, already knowing the heartache of losing a child, and being all too familiar with the way an ultrasound can change your life forever in ways you never imagined, we walked into a dark ultrasound room. Expecting our fourth child, the air was filled with joy, yet laced with fear. We laughed nervously and joked, all the while choking back tears and fright. We found out we were expecting our fourth boy and minutes later we were told we would likely not have the chance to raise him. His brain was lagging in growth.

The days that followed were filled with confusion and desperation. We prayed and prayed for our sweet boy, who we lovingly nicknamed "Happy" to be born healthy. I wasn't sure I could handle the loss of another child. I was not ready for the "options" that followed his diagnosis the following week. The only thing we were sure of was that this baby, our Happy, was a perfect gift from the Lord and we would trust the Lord with Happy's life. We dedicated our son to the Lord, knowing that though what was to come would likely be painful, his grace would be enough.

The diagnoses proved to be correct. We loved on our Asher for 35 beautiful moments that I will never forget.


Fast Forward 2 Years...



This morning, November 15th, 2009, aware of the significance this day held two years ago, I dressed our FIFTH gift from God in her Sunday best and stood on a stage in front of our church family and dedicated our Hope to the Lord, acknowledging the perfect gift she is. I cannot even wrap my mind around the emotions that filled me today. As pastor Bill placed his hand on Hope's head and said, "Lord, we are so thankful for Hope,..." Tears stung my face as I thought of the dual meaning of what he had just said. I stood there on that stage holding on to Hope, in that same worship center where I have so many times in the past few years held on to hope.

This is not a story of redemption or restoration. I do not believe the death of my sons will be redeemed or restored this side of Heaven, and I am learning to be okay with that, redemption and restoration will come. Hope's life does not make up for the loss of her brothers' lives and our hope does not lie in Hope. This my friends is a story of God's all sufficient grace. He gives and he takes away.

And as I stood in the back of the worship center this morning praising the God who gave me five amazing children, and took two of them away, I sang the words

"Your grace is enough for me
God I see your grace is enough
I'm covered in your love
Your grace is enough for me
For me"

I could not help but be amazed by the truth in those words. In the past several years there have been times that I was so deep in a pit that I never thought I would see the light of day again and times on the mountain tops that I just want to shout with joy to all creation. He has been there through it all. He provides grace enough for each day, never more never less, just enough for the day so that you wake up the next day needing Him just as much as you did the day before.

I am a HUGE fan of David Crowder Band (understatement of the year) and lately the song I OVERPLAY is "How He Loves Us". It is almost like I daily need to hear those words to remind myself that even on the hardest of days, God is there, He holds each of my tears in the palm of His mighty hand and He loves us with a passion we cannot even fathom. He never deserts us, even when we feel like he has, and his grace is always there and always sufficient.

I have no idea what you are going through as you read this tonight, maybe you are in the pit of despair, or maybe you are on a joyful mountaintop, either way, I can assure you God is there, his grace is sufficient, and He will not let go.

One Step Forward, Two Steps Back

I always find it surprising when I get to a place where I feel almost comfortable in my grief. In a place where tears don't sting my face daily and I don't choke back emotion when I speak of Isaac or Asher, I often find myself in a place where I can speak freely of our life story and do so with joy and then suddenly from nowhere I get thrown back again.

Tonight is one of those nights. Somehow each time we get family photos done, though I love them and though we have found great creative ways to include Isaac and Asher, it is just not the same. I stare at my beautiful family and praise God for the beautiful children He has blessed me with yet, my heart bleeds all over again for those who are with Him in Heaven. It becomes more evident that our family will never be complete this side of Heaven. The emptiness in my soul aches to hold them one last time and my heart wonders why they had to go.

I am thankful for all the Lord has done in my life, and yet some days it is still tough to breathe or even get out of bed. But I will do it, one day at a time, moment by moment and through the pain, I will choose joy, but for tonight, it hurts.

Fun Fall Fotos

(So, I do know that Photos would be the grammatically correct word in the title, yet that was my feeble attempt at alliteration :))

A couple weeks ago we met my friend Amanda at the park and played in the leaves while she snapped some photos of us. Amanda is starting her own photography business and asked if we would be interested in letting her "practice" on us.

I am always up for capturing memories of our family on film. I am not a huge fan of taking the kids to a studio as I typically want to rip my hair out and am drenched in sweat by the time we are done. I have found it helpful to find photographers who just kind of follow the kids and let them be them. Thankfully I never had to search much as my awesome friend Ginger introduced us to this kind of photography and she is a creative genius. My house is pretty much wallpapered with her work.

Anyway, the day was gorgeous and the kids had a blast (with the exception of Hope, who was just being a diva). Amanda was super great with the kids and since she asked to "practice" on us I wasn't sure what to expect so we just went with the flow. I have to say I was elated with the shots she got of my brood. Howard was into it for once because it really was a perfect day, and he had all kinds of ideas for shots. If this is her "practicing" I am pretty sure she is gonna be a success!

Letting Go

I have often heard about the moment a family knows they are complete. I have had friends explain that they just knew they were done adding to their family and were able to easily make the decision to stop having children. I sometimes worry that I may never get to that point. Erika wrote of having the same feelings and I am now wondering if more people than I realize struggle with this. Maybe it isn't always neat and tidy and tied up with a bow.

I have had five babies in under six years. I LOVE being pregnant and I LOVE having babies in the house. I never really get that "done" feeling. In fact I often find my five months postpartum self coveting the newborns of others while I snuggle my five month old sweetie. I adore the stage Hope is at now and wouldn't change it for a thing, but man I miss that newborn-ness. It is a sickness. :) I love everything about pregnancy and motherhood. I am addicted. :)

Given all we have been through and the lack of answers paired with the fact that my uterus was seconds from rupture when Hope was born, I know my body is likely done having babies. I look on the faces of my three children and count my blessings. They are healthy, and I do not take lightly the fact that we were bracing ourselves for a much different life with Hope and yet the Lord has shown us what only He can do. We have lost but man we sure do love. This house is just bursting with love and gratitude.

I have written before about the nagging feeling that I often have that someone is missing. The one where you in a panic twirl around to survey the back seat of the car knowing someone is not in their right place, where I see three full carseats and then I remember that there are two someones missing and this side of Heaven, that is how it will always be.

I sometimes wonder if I will ever feel like our family is complete this side of Heaven. I worry that this void I feel will always make me yearn for another baby, knowing that no new baby could ever take the place of the ones who have gone to Heaven before us.

I have recently been trying to clean out our basement so that we can use it as a playroom and have been really struggling with getting rid of things. They are just that, things, and I know that. Yet letting go of the bassinet seems so final. We have a basement bursting at the seams with baby things and outgrown clothes that I just have not had the courage to let go of. I love having babies how could I possibly be done? Yet I know that I want to be here for my kids and a pregnancy at least anytime in the next few years could put my health at risk due to my thinned uterus and that is a risk I am not willing to take. I have been blessed with the responsibility of being the mommy to FIVE gorgeous kids and I am thankful.

I have begun the hard work of letting go, knowing that if someday the Lord decides we should grow our family through adoption we would be ecstatic and we will obey and with that we know we will then be able to provide all of the things needed for any additional children. For now, our baby things could be of better use to someone who needs them. Each day I go down and choose a few more things to take to the Women's Care Center or sell on Craigslist and as painful as it is it is also addictive. (I am pretty sure my husband fears I will list everything not nailed down on Craigslist at this point) We have begun the hard work of letting go of the things, realizing that we will never let go of the memories or the hope we have been given.

I can only pray that the Lord will either lead us on a path where having more children makes sense or that he will take this nagging feeling from my heart and make me feel more whole this side of Heaven. Continuing to have more children won't fill the void that Isaac and Asher left and I am thinking I need to find a way to just come to terms with that. I am blessed. I have three beautiful healthy children this side of Heaven and two waiting for me on the other side. I am thankful for all the Lord has given me, and I feel so guilty that I still struggle with all of this. Sometimes it feels like my head and my heart are at war and I just wish they would get on the same page. :)

So tell me, how did you know your family was complete? Did you struggle with letting go of the baby stuff? If you have lost a child, do you struggle with similar feelings?

Five Fabulous Months!

I cannot believe it myself, but Hope is FIVE months old today! Here is a little about Hope at 5 months:

She weighs just under 13 lbs
She is still exclusively breastfed but we are thinking of starting food soon!
Her favorite toy is her little stuffed Tigger from Ben :)
She loves to be held pretty much ALL the time
She is wearing 3-6 month clothes
She has each of us wrapped around her little finger
She LOVE LOVE LOVES to stick out her tongue!
She sings and babbles all the time
She is growing to dislike the swing but is becoming more fond of car rides!
She loves to be outside.
She has had NO more issues with her EB.
She amazes us daily.
She is a great source of joy and gratitude in our family.

Name That Photo

Thoughts on Thirty One

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.

EB Awareness

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.

Welcome Henry Adam!

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!