And the music stopped

What is it about music that can make it speak directly to your situation, your soul and your emotions? Music has always played an important role in my life. A specific song coming on the radio can bring back nostalgia of good memories, that summer spent underneath the stars, timeless memories. Music played a huge role in our journey with Malachi. Singing songs of praise to God became the way I coped with the good days and the bad days; when I couldn't utter another word of prayer because I was too weak, music held up my prayers to heaven as I raised my arms to my King. As a previous post mentioned, the Bethel Music album “You Make Me Brave” became my anthem album for our journey. Songs of hope and thankfulness on the days we celebrated, songs of inspiration and encouragement on the not so good days; it felt like every song on that album touched a point in our journey in a special way. And then it happened, the day the music stopped. When Malachi passed away I couldn't bear to listen to the songs I had spent hours listening to in praise and hope that he would come home to us. My heart broke with every chord and word that reflected our hearts desire for our son, that we never saw fulfilled. I couldn't bear to listen to it after he passed. It felt like promises that weren't fulfilled, a life that wasn't returned to us. How could I sing in joy and praise when my son was gone. Since he passed I haven’t been able to turn the radio on, in fear a song will play that will release the floodgates of tears, that are barely held shut as it is. I have only listened to music when played in another vehicle. Even then I tend to tune it out. Our first time back at church after Malachi passed away we made it in time for worship; worship has always been my favorite part of service, but admittedly we rarely make it on time. I didn't know how I would feel when the songs began to play….fast paced songs of praise were easy…the slower, more intimate songs of worship and love were the hardest. How do I praise Him in the most painful of tragedy a mother can experience? Tears fill my eyes as I began to sing, choked by them, all I could do was raise my hands and let my tears fall to the feet of the throne room and fall to the one who can take my anger, my pain and my tears. Praising him in the storm. Choosing to praise him in the storm. In singing the songs of worship, love and adoration I had to make a choice to continue seeing God that way. It has tested my thoughts of who God really is. Sure, I can repeat the platitudes of He is good all the time, all the time He is good, but when faced with the ultimate of heartbreak it remains my choice to believe and trust that His nature remains consistent even in the midst of my circumstance. I was faced with “do I really believe this, with my whole heart, with everything within me; that He is good?” It was my choice to answer Yes or No. This yes is the hardest yes I have ever had to say. I cannot lower my thoughts of who God is to match my pain, if I do that it undermines everything I have ever believed of His nature. I believe I can ask Him why, ask Him to show me beauty in the tragedy and ask him to put the pieces of my heart back together. Even when it is impossible to voice the songs of praise and love, I can still raise my hands to Him and He knows my heart and meets me where I am. I recently downloaded the new album from Steffany Gretzinger titled “The Undoing”….and I listened to it. The first album I have purposefully listened to since losing Malachi. Every song has touched my heart in the place of grief I am in and on my way to healing. Intimate songs of worship to a King who I believe is good in all things. An album that has met me where I am in this journey, but gives hope to the healing ahead. Music is a powerful thing. The soundtrack of life, good and downright awful.

Liquid Gold

Liquid gold. Any mother who has had a baby knows what this is. The precious breastmilk our bodies so naturally make to sustain our babies. I nursed Deuce for a year and loved it, I so looked forward to that same experience with Malachi. When he was born 14weeks early I immediately asked for a pump, much to the chagrin of the nurses. They said over and over to me that I likely would not produce... Due to him being so early, all the stress and how sick I was; it just wasn't a great combo for milk making. They. Were. Wrong. Every day of his life, every 3 hours I pumped. I pumped the liquid gold my baby needed and my body responded. Another one of Malachi's miracles. I would pump at his bedside as the nurses looked on in amazement that I continued to produce...a lot...4-5oz per session, mornings were 10oz! I pumped in cars, in rooms hidden behind mesh room dividers so a bridal party wouldn't catch me, in the middle of the night... My pump was my life source for my baby. On the days he got to have milk, I pumped. On the days he wasn't allowed to eat, I pumped. My milk was the only nutrition he ever tolerated perfectly. Over and over I was told how amazing it was that I could provide that for him. I felt it was the one thing that physically I could do for him, so I kept on. Amazingly right before he passed he was tolerating the most milk he had ever gotten and was amazing the doctors, he was one day away from being 100% on his mamas milk and off of the TPN. Due to the amount of time he wasn't able to be fed due to sickness, surgeries, etc.. I amassed quite the freezer stash of milk. For days after he passed I was angry at the milk I had, angry that it hadn't healed my baby like I wanted it too, angry that he didn't get to have it all. It felt like all my work had been so futile. Then I remembered my amazing nurses telling me one of the reasons he survived for so long was because of my milk. My milk gave me time with him, comfort to him. He loved to suck it off of q-tips and I will never forget the look on his face and eyes when he got to taste his liquid gold. His eyes would widen, his sucking would be strong and furious, and best of all he would smile. That precious beautiful smile he had even when he was so very sick. The smile that have me hope. In the midst of the storm if he could smile, so could I. The last time I pumped was the night before his memorial service. Graciously, I beleive God eased the pain of stopping pumping and I was able to stop relatively easy, with no infections or serious discomfort. That in itself was another miracle considering how long I'd pumped and how often. In tears I placed the last bag of milk into the freezer. My pumping journey was over. But the journey of Malachi's milk is not.

A few weeks after he passed I knew I wanted to donate his milk. But I had stipulations. I wanted it to be personal. I wanted whoever received it to know Malachi's story. That every time they defrosted some milk to give to their baby, that they would remember him, remember us. I wanted it to go to a baby who really needed it, preferably a preemie. I wanted his milk to mean something. I know I was being picky, but this was the situation I prayed for. Last Tuesday, this prayer was answered. It was answered in an even more beautiful way than I prayed for. Today brought the physical donation of Malachi's milk. To a mom who desperately needed it, to preemie babies, to a mom who is someone I have known for nearly my whole life. A true personal connection. As I made the drop off there were tears in both our eyes. Bittersweet tears from mine as I explained how she was an answer to prayer for me and how happy I was to bless them with it but at the same time how I was sad that Chi never got it; and tears from her telling me how I was her answer to prayer for her babies, and how she would make sure they grew up knowing about it and about Malachi's story. 

His legacy continues. Liquid gold, that helped my Malachi more than anything could have, now will help two babies who need this. 

I will never forget the time I spent pumping for my Malachi, there were days it brought me to tears, but mostly it brought me hope and peace that my body knew what he needed, and in that way, I could provide the absolute best for him. Your legacy carries on my sweet boy. I hope you smiled today as you saw the handing off of this precious liquid gold. Your story lives on and you will never be forgotten.

Year of firsts..

There something not alot of people talk about when you lose a child....The year of firsts that follow. You anticipate this year when you have a baby, eager to celebrate every "first", document the firsts with photos, and finish out the year with an over-the-top first birthday where you celebrate the amazing year your child has had. 

There's another side to firsts though...The first year of loss. The first holidays without them, first milestones you think about that should've been met, first family trips..... 

We met one of those firsts this weekend a little unexpectedly. We went camping. While it may not seem a big deal to most, camping is huge in our family. We go for quick weekends fairly often, and long weeks when we can plan it out in advance. We LOVE to camp. While Malachi was in the NICU we would often talk about taking him camping, where his first trip would be (Deuce's was Burney Falls!), would he love it as much as we, and his big brother do? We loved dreaming of his future with us in the great outdoors; camping, hiking, fishing....Our hearts break that we never got the chance to experience this. This weekend as we packed up to go, a sense of melancholy came about. Wishing he was with us. Wishing we could have this first with him, instead of just carrying him with us. Wishing we'd be waking every 2 hours to feed him and rock him back to sleep....but we went on. Carried forward in the life we know he would want us to live. Deuce had the time of his life, he loves everything and anything outdoors. In him, we find a source of joy that is unending. We love watching him explore the world around him and grow!

The first order of business when camping is to find the best sticks with daddy!

Oh those curls....be still my heart.

After finding sticks it's on to playing with your trucks in the dirt!

Next comes figuring out the tent trailer door! This was Deuces first time camping where he's big enough to go in and out on his own! That was an adventure...let's just say we're glad the door locks!

Next comes hunting for Pine-cones!

Then comes lunchtime, this day was PB&J and Cheetos (his absolute favorite, but rare treat!)

Oh my brown-eyed boy.....He can get anything from mama with those beauties! (and he knows it!)

Then comes lake time and cuddles with mommy. He didn't want to go in the water, just wanted to sit quietly with me on this rock. I love these quiet times with him, they are rare! But it's also in these times I feel the missing piece the most. Wanting to have my arms full with my two boys. Longing for the hole in my heart to be filled. But cuddles from this love bug are balm to my broken heart.

While we were sitting here a butterfly flew up to us, landed on a rock beside us and stayed for a while. Deuce said "hi 'fly fly'(butterfly)" and the butterfly fluttered around us then flew away. Maybe it was a "hello from heaven" from my Tiny Prince. I like to think so. 

and of course...we fished...

Lot's of fishing, no catching. But we still had a great time.

We are learning how to live in this year of firsts. I think we tackled the first big one for us quite well. Yes there were moments of tears and missing him and just wishing he could be here with us(I think those will always be there). But as a friend reminded me Friday afternoon, we always carry him with us, right in our hearts. 

Keep praying for us as we tackle this year of firsts.

What to do for a grieving parent

There are A LOT of articles out there on what people should NOT do or say to someone who is grieving the loss of a child. My favorites of those include: 1. Do not say “I know you will have more children” (or something like that) the child we lost can never be replaced. EVER. In this moment we are mourning and grieving him, not eagerly thinking of trying again. Please just don’t. 2. PLEASE don’t say “everything happens for a reason” – NO reason will ever be enough for a human heart to understand or accept this level of tragedy. When we get to heaven and see things only in the light of eternity and separate from our human nature, only then we might be able to understand. And 3. Do not compare/equate your pain of a loss (parent, relative, pet, job etc..) to theirs of losing their child. There is no pain like losing a child. None whatsoever, so unless you have lost a child too, please don’t try to say you know how they feel. You don’t.

Those are some big no-no’s that stick out to me, thankfully we haven’t had to deal with much of that, but nonetheless I wanted to point those out.

In talking with some of my closest friends, the conversation sometimes gets to talking about others and how they don’t know what to do for someone going through this or a similar season. So I want to give you ideas of what TO do. Things that have helped us get through this.

1. Get tangible. Tangible help. “If you need anything, I am here” is a great sentiment, but often the parents don’t have the energy or brain power to think of what they might need or to reach out for help. If someone has set up a meal train, sign up to bring a meal, call/text and offer to watch their kids if they need it (although I’ll tell you most probably won’t, all I have wanted is my living son near to me at this time), offer to clean their house and help with laundry, offer to pick kids up from school, mow their lawn, get their car washed, bring coffee over etc. Anything to ease the burden of daily tasks is helpful to parents walking through this.
2. Donate (if you can). If someone has set up a donation fund for them, any amount helps. Being off of work for an extended period of time creates what can seem like insurmountable financial hardship. Hospital bills(The average NICU cost per day, is $3000. $3000 PER DAY), late payments, gas, food, cell phone, heat, water..etc. I promise you this money does not go to waste, and bills add up very very fast. Can you imagine no income for 6 months? I promise you, any amount, no matter how big or small, helps.
3. Give grace to grieving parents to not return phone calls, texts, emails, etc. They have no energy. There are days that the energy required to get out of bed is all they have, and sometimes they can’t even get that far. If you “see” them on social media, but you have not gotten a personal response from them. Don’t take it personally. Don’t get offended. Social media can be an outlet for them to share their journey and let people know where emotionally they are at that particular day. It might take everything in them just to post something and it’s probably helpful for them to share.
4. Keep reaching out to them. Even if they don’t respond to you right away(reference above), keep reaching out. They read every text, email and listen to every voicemail. The encouraging words from someone can help them through their day. Don’t be afraid to tell them that you love them and are thinking about them. Even if you assume that they are being inundated with these kind of messages, they are always welcome. Sometimes you might be the only person who has reached out to them that day. Never undervalue the worth of a spoken word of love.
5. Don’t be afraid to talk about the child they lost with them. Let them know how his story inspired you, or helped you. Let them know how incredible their child is. Let them know how loved their child is. There will likely be tears, but knowing their child made a difference, even if you think it is minuscule, is healing balm to a broken heart. Parents are proud of their children and want to talk about them. Am I saying a 2-hour long conversation about them, probably not, but even a simple “Malachi (insert name of child) was/is so loved and cherished” has meant the world to me. If they have older living children, ask about them too.
6. If you are close with them, give them your time. Your time and support will be needed for long haul. Not just in the immediate days following their loss… but for weeks, months, years to come. If it’s time just sitting with them, talking with them. There is no time limit on the pain of losing a child, it will always be with their parents. Don’t disappear.
7. If you can’t find words to say, simply say “I am so sorry for your loss, I don’t know what to say” The parent would rather hear that honest statement, then platitudes that tend to harm more than help.
8. If you see something that reminds you of their child, if you are able to, purchase it for them and give it to them as a gift. There is no such thing to a grieving parent as to many mementos to have of their child.
9. Remember their child. In the months and years ahead. Holidays, their child’s birthday, mother’s day, father’s day. These are all painful holidays for a parent who has lost a child. One of the fears of a parent who has lost a child is that he/she will be forgotten.
10. Love them and don’t be afraid to show affection. Give them hugs, hold their hand, literally give them your shoulder to cry on, just “be” with them.

These are 10 things that have dramatically helped us in our grieving process so far. If you know someone going through the grief of losing a child, I hope this list can give you insight into what you can do to help them. Remember that nothing you say can take away their pain. But with the help of people around them they will come through their season.

***A simple edit to include of of the greatest things that has sustained us through this. Prayer. People praying for us has held us together when the words just won't come anymore. People coming around us to pray for our son's life gave us the strength to hope for one more day. Prayer for us a couple and a family treading these waters now, is what will help get us through.***

So maybe there's 11 things :)

Embracing Your Season..

I’ve thought a lot about this. Embracing the season you are in. It sounds easy enough when you are in a season of reaping and reward. In the good times thankfulness, joy and embrace seem to come naturally. Embracing the season you’re in doesn’t seem to come naturally when you’re going through the most difficult season of your life. Of course in any difficult situation or season, how you deal with it is a choice. You can choose to follow your emotions and let them overtake and overwhelm you, or you can choose to accept what has happened, feel the emotions when they come, then see what you can take from your situation to bring positivity from it.

From the day Malachi was born, I made a choice to embrace this season, whatever it would bring. I started seeing someone regularly who has immensely helped me in this process. She encouraged me to keep hope, even when things looked bleak, and she cried with me when our hearts were shattered. She encouraged me to embrace the season (though she never used those words, that’s what I took from it). I made the decision that every milestone, ounce gained, ounces lost (when he needed to lose them), successful surgery, decreased vent settings, increased milk intake…no matter how small the milestone seemed, I made the choice to celebrate them. I would often look at our nurses after getting our daily reports and repeat the good things and say “well those are good things, right? So we will celebrate!” I think they thought I was crazy sometimes; maybe they aren’t used to seeing such reckless hope. I embraced every moment I had with Malachi, moments that weren’t promised. A situation that made me embrace and cherish each and every moment I now have with our oldest son. On the days when he’s said “mommy, mommy, mommy” for the millionth time, I make the choice to embrace that moment (even when my last nerve is raw) because I know that it won’t last. That sweet little voice calling for me might not be there one day. We embraced every second we had with Malachi, the good days and the bad days. The days where we couldn’t touch him in his isolette, but would sit by him and read to him, sing to him, tell him over and over how much we loved him and how proud we were of him, I embraced, I sat for hours on end. The days I was allowed to hold him, oh those sweet and wonderful days, I took advantage and embraced every second. Holding him close to my chest, feeling him breathe, feeling his warm skin against mine was heaven to me. Heaven in our own little corner of the NICU. Watching him grow from a 25wk 5day old baby, who looked like he still belonged inside, to a 7lb “normal” looking baby, was incredible. He was beautiful. He was embraced and cherished. His season was embraced, by us (his parents) and by so many of you who prayed for him and rallied around us to keep us going. When Malachi passed away, we had another choice to make, a choice to embrace the most difficult journey of grief you can imagine. In one of the days after he passed someone had offered to me to call my doctor to get me some medication to help ‘cope’ with everything. I adamantly refused. I refused on the grounds that I wanted to feel everything. I wanted to feel my heart break, I wanted to feel the waves of grief that crashed on me, I wanted to be present in my grief, and I wanted to embrace my grief. I wanted to remember waking up in the middle of the night with my pillow already soaked with tears. I wanted to know how this felt. At the reception after Malachi’s service, I had many people telling me it would be ok if I sat down and didn’t talk or socialize much, yes that would have been ok, however, I wanted, even in the midst of that grief, to embrace the season. I wanted to stand with my husband and embrace everyone who had come to honor his life; I wanted to feel the physical expression of love that was being poured into us. I didn’t want to be a zombie just going through the emotions, sitting on the sidelines. Embracing this season, to me, has meant embracing the change that comes along with it, sharing the journey and giving ourselves grace to feel the pain and have our “emotional time-outs”. It isn’t easy. Embracing this journey to me also means knowing (and make a conscious decision) to not let the sadness and depression overtake me; it means I allow myself to have moments, and then rise. I rise with the strength of 2,000 prayer warriors holding up my arms and helping me to get through the day. I rise daily with the prayer of “Lord please give me strength for this day”. I rise with the support of my closest family/friends who have been there 24/7 since our journey began. I rise. I embrace and I rise because God wants that. He calls us to rise out of the ashes. He allows us to make beauty from these ashes. Oh how I long to know that there is beauty in my Malachi’s journey, beauty that will rise from the broken pieces of our hearts. Beauty I can see when one of the high schoolers we work with tells us how Malachi changed their life, beauty I can see when someone sends me a letter saying they are closer with the Lord because of Malachi’s journey…beauty, in the deepest grief a human heart can know.

I am also learning to embrace this new season of a ‘new normal’; I have returned to work this week, bills have to be paid, school events are happening, Deuce’s 2 yr. old needs need to be met…life continues to move forward, and I want to embrace every second. 

Maybe you are facing a daunting journey, maybe you are in a season of harvest and joy. Embrace that and learn to know what true joy feels like. Maybe you are wading through unexpected tragedy and grief, a season of sadness and sorrow. Try to see what beauty can come from the pain, embrace it. It’s not easy; it’s a choice, but a choice that leaves no regret. Even if all you can do is rise in the morning and pray “Lord, give me strength to make it through this day”, He will honor you in your season.