Broken Hearted

Those dreadful boxes. The ones with the little numbers glaring at you. How I will be so happy to trade in my calendar one glorious day.

The memories of celebrating her 3 month birthday, which was also Valentine’s Day, has been nagging at me all week. I don’t know if it’s because my body was finally getting used to the newborn thing, or the shock had worn off, or I had learned how to live with the anxiety, or that I had stopped pumping and was sleeping more but I remember her 3 month birthday very well. 

I have certain memories throughout her life that are just the, “oh yeah, I remember we did this on that day and the weather was like this…she was wearing that…” kind of memories. And there are many other memories that I remember exactly how my heart felt in those moments. Like when Adam came in as I was waking up from the surgery and told me that it was a baby girl. Or, a few days later when he told me they thought it might be Trisomy 18. Or, when I finally got to hold her on her 5th day of life. My heart was so full and so, so heavy. And, I remember how it felt to dress my little miracle up in the 3 different Valentine’s Day outfits she had. l felt so thankful that I was getting to do this. It was another holiday I didn’t think I would have with her.

I think Adam had gone to work that day, so it was just me and her….and the camera. I took WAY too many pictures. She was starting to put on some weight and I couldn’t get enough of her little chunk in the pink frills. And in between the photo shoots we did lots of snuggling. I felt really connected to her that day. My heart was getting better at allowing itself to feel the depth of the love. 

I know this isn’t the most eloquently written post, and there’s not really a point to it at all. I just miss her so much this week. My heart just feels broken, and it’s hard to want to acknowledge this holiday without her. And, today marking 11 months since I held her in my arms just feels impossible. The year marker is less than 30 days away. I wish that I could press pause so it won’t come and hit the fast forward button all at the same time. 

Here are some of my favorites from that day. 

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I love and miss my little Valentine.

-Brooklyn’s Mommy

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A Belly Full of Jelly

If there is one thing that we learned through getting to be Brooklyn’s parents it was how to celebrate in the face of the unknown.

At that 20 week ultrasound appointment in July of 2012, we had no clue how to do this. We definitely lived our lives with an undertone of dissatisfaction, but we believed that we were just on the brink. If only, the new career would work out. If only, the possibility of buying a home looked less like a fantasy. If only, we would finally have enough money and time off for that summer vacation. We were really good at looking at the things we didn’t have. The “If only’s” that would finally send us into a place of satisfaction. If we couldn’t have the typical DINK (dual income no kids) lifestyle, then maybe it was time to just have kids? In no way was this an actual part of our thought process when we decided to trust Him with growing our family, but sometimes I wonder if it was swimming around our subconscious?

“Your ultrasound results came back abnormal.”

My brain had to catch up with what my ears just heard. We had a pretty jovial relationship with our doctor, could this be a joke? When she mentioned the words “heart defect”, I thought even harder about the ways this could play out for her to be “messing with us” and her still be our doctor. The reason this felt so absurd to me was because her youngest son was born with a heart defect. He had actually just had a surgery to replace his aortic valve and many of our conversations in the past 4 months were peppered with updates on how he was doing. I heard the silence following her initial statement louder than I had heard her words. And the reality of what I was hearing settled into this dreadful weight in my chest. Then there were words like specialist, cardiologist, surgery, difficult first year of life. But, I couldn’t keep up with the sobbing my heart was doing on the inside. Then shortly after the actual sobbing came.

We were supposed to be on the brink. And, we were. But, we were on the brink of something completely different than I had hoped for.

We still had hope of a long life with Brooklyn then. Specialists gave us the hope of surgery dates, but no matter how many hours of ultrasounds scouring her tiny heart they ended every conversation with, “we will know more once she’s born.” That kind of hope kept us looking for the positives, anything that we could hold on to to justify and cling to our hope for the future. Yet, even in that we were whispering the “if only’s”.

Once she was born and it all became clear. Her destiny. Our destiny. It chased every ‘if only’ we ever knew away, crushed our hope of a future, and painfully drew our hearts to look at this very moment in time. That was all we had. It slowed everything down and sped everything up all at the same time. When moments are all you have, you have a decision to make about how you want to live your moments.

This is how we learned to celebrate. This is how we learned to give thanks. This is how we knew any peace, at all. This is how the Lord showed us how to look at what is and allow that to be enough, and sometimes more than enough.

Yesterday we had our 20 week ultrasound appointment with little Squirmy-worm. We were pretty anxious about going through all of those same motions that we walked through a year and a half ago. As I envisioned walking into that ultrasound room, I thought of my heart racing the entire time. I thought of how I would probably be trying to analyze everything the sonographer was saying and doing as her eyes carefully searched my second little miracles body. I thought of how it would be hard to breathe until it was all over. And my thoughts were interrupted with, “Look for another way.” And, I thought of the moments I have been given. How did I want to live these moments as we would get to peak into our new baby girl’s body? Her big sister had taught my spirit that new way. I wanted to celebrate them! So, we did. And, we did that with Jelly Belly Beans. What better way to celebrate the unknown than with a mixed bag of jelly bellies? Every time we heard our sonographer say, “looks good” as she worked her way down the check list, we celebrated with a jelly bean. We even brought some for our sonographer, nurses and doctor to celebrate with us.

We are thankful to report that Squirmy is growing just fine, with the exception of a smaller than average head measurement. So, that specialist word did come up again, but only to go and have an expert fetus scour-er say, “Yup, just a small head.” As a Mama hoping to have a VBAC, a small head doesn’t sound like the worst thing in the world.

In all of this, He has been faithfully showing me my fear and anxiety does not have the final say on how I live my moments.

Jelly beans do 🙂

-Brooklyn’s Mommy

My Greatest Fear

Corrie and I have always enjoyed candid conversations.  It’s one of the things that attracted me to her, and it’s always been a component of our marriage that can be difficult and incredibly rewarding.  I love that our marriage is a safe place for us to share our struggles, joys, dreams, and fears.  I’m confident that these conversations need to happen.  We can’t bottle them up and hold them in.  An incredible amount of freedom and connection occur in our relationship when these honest conversations happen.

Corrie and I were having one of these conversations sometime in the first couple years of marriage.  The topic:  What is your greatest fear?  For some reason, I had carried around but never vocalized my greatest fear to anyone until that day.

You may not believe this, but a unique fear became a permanent resident in my subconscious around the age of 10.  I’m not sure where or how it began haunting me but the possibility of personalizing the fear scared the crap out of me.  When I try to think about its origins, I always think about the kids with special needs in my elementary school.  I would pass them in the hall or see them in the cafeteria, and their daily struggles scared me.  I couldn’t imagine being in their shoes.

As I got older and my desire to have my own kids grew, the fear was still there.  But now, the fear had a unique component and became personal.  I couldn’t imagine having, nor did I want, one of my kids to have special needs.  So I told Corrie…

My greatest fear:  Having a child with special needs.

Based on many metrics I’ve lived a comfortable life, so the thought of not getting to enjoy my child through “normal” interactions and development was very uncomfortable and disruptive to my ecosystem.  I would find myself thinking about this possibility and the myriad of ways that these special needs would impact my life.  I was confident I couldn’t handle the perceived stress of providing acute-care for my child…every day.  The fear was real, but I still believed it would never happen.

Enter Brooklyn.  My sweet, beautiful, miracle daughter.  It became very clear in her first couple days that she had special needs.  She ate through a feeding tube, was continually on oxygen, had seizures, didn’t look like “normal” babies, and her body was continually fighting against itself because of her extra copy of the 18th chromosome.  She had many special needs.

My greatest fear was realized.  This reality didn’t settle in until several months after Brooklyn passed away.  While she was with us, I never looked at Brooklyn as a child with special needs.  Of course she needed acute-care, but I loved taking care of her.  In fact, I ‘quarterbacked’ her medical care.  I learned everything about her diagnosis, needs, meds, medical equipment, etc.

Although taking care of Brooklyn was disruptive and uncomfortable, I would gladly take it all on again in a second.  This would mean Brooklyn was in my arms.  Through Brooklyn’s short life, I learned that special needs don’t define a person.  God used Brooklyn to show me the unique beauty that is underneath the “normal” or uncommon exterior.  Her medical needs, diagnosis, etc. don’t define her nor do they define anyone.

I feared special needs would prevent me from connecting with my child.  God shattered that fear. I was able to connect with Brooklyn in ways I could never have imagined and in ways that wouldn’t have been possible apart from her unique needs.  God proved he is bigger than any fear, and Brooklyn changed me forever.

-Adam

Company

The tears have came with company today.

Company that doesn’t come around as often as it used to,

but when they do I’m always surprised at how they bring the hurt that feels so fresh.

Could it have been the memories of watching the Superbowl with her last year,

that told them it was time for a visit?

Or, the calendar bringing us closer to the retreat

where my wounds will be exposed in a way that even I might be a little frightened to see?

Was it the color of the sky? Or the smell of her skin in my minds’ eye?

Has my brave run out?

Has my heart caved in?

Maybe the hurt just couldn’t keep quiet;

It just needed to be let out, given a voice to float away on the wind.