In support of pediatric and infantile cancer, a small way you can take action. 

I couldn’t let this month go by without doing or saying something. 

This whole month has been a mix of joy and pain for myself and our family. While experiencing the joy of our 3rd child being born, the daily posts and calls of action towards the pediatric cancer world have also been daily reminders of the fact that our son is not here to complete our family of 5. 

Our family has continued to outwardly stay in the fight with fundraising towards our local pediatric oncology clinic and research as a whole since Drew passed away so suddenly January of 2015. I’ve also chosen to stay in the fight in a bit of a quieter way as well. I don’t talk a lot about it nor do I ever really request assistance in doing them. It’s my quiet time to just be … be in my grief, reflect on our journey and Drew’s life and pray for each little one that we provide onesies for. It does my heart good to know that these simple little onesies that helped us so much during treatment may help ease the walk of another family forced to walk the same walk and it’s a way to keep Drew’s name and legacy very much alive in a positive way.


I’ve been so fortunate for a very special partnership with The Claire Parker Foundation (http://claireparkerfoundation.org/what-we-do/drews-cruisers/) who funds and supports our cause, but this blog post today is my way of calling YOU to action if you so feel led to support the littlest ones facing this fight. 


What we do: Adapt onesies for babies undergoing cancer treatment who’s only option for IV access is what’s called a Hickman line catheter in their little chests.

Who we help: Any baby or toddler that wears a onesie undergoing cancer treatment.

How it helps: Our onesies keep the central line out of their hands and mouths in hopes of preventing infections or accidental dislodgments.

The cost to them: FREE

How YOU can help: Send very gently used or new onesies my way. They can be short or long sleeve, boy, girl or neutral in pattern. We are in need of 6, 9, 12 and 18 month onesies currently. Email me at drewscruisers@claireparkerfoundation.org with any questions or contact information on where to mail them.

A couple of sweet faces we’ve recently been able to help:

A new space.

It’s been a while since my last blog post … 6 months to be exact this very week. I needed to step back for a bit … step back from the constant heaviness and sadness I was continuously feeling, step back from the constant thoughts of everything surrounding our journey and loss. I needed to remember how to breathe, focus as best I could on the blessings in each day and just be … be where I needed to be, whether falling apart or actually finding myself having a good day, without focusing so much on it all.

In these past few months, we’ve survived the difficulties of the holidays as we remembered so freshly our last days with our son. We somehow survived the anniversary of his passing on January 2nd. We were surprised to learn news of expecting our third child. We’ve realized more than ever how much we needed a new, fresh space and blank canvas for our family going forward. We’ve continued to balance the deep grief of missing our son, Drew, with the joy of getting to know and love our sweet girl Hadley. It’s continued to be a day to day whirlwind of emotions as we learn to live this life without him. Each day is different depending on circumstances and there still are, and probably always will be, different triggers that tug on our hearts with the pain of his loss. Most days, our grief is silent. We go about our usual routine, trying our best to be strong and move on with life and trying to slip back into a normal way of living, all the while, being hit by certain comments, memories or situations that take us back to when we had him in our arms. We’re not the type to sit and cry with most about it or really comment much about how we’re feeling at all. It’s become this soft, silent, internal battle that we face as we live each day.

Tomorrow is moving day and our fresh start begins. After many months of praying and searching, we found our blank canvas and beautiful new home. We will forever cherish our time and memories on Covey Chase drive, and as much as we love our home and the many special moments experienced here, we know that so very many of those moments are and always will be sacred to Drew, our time with him and all of his things that have been as he left them. It’s not always been comfortable having friends or loved ones here in ‘his’ space (especially those with children) and have felt so strongly that his room would only ever be his room… not a guest room, not an office, not a nursery for a different child …  always his. I’d rather pack our entire home than ever change his room to be anything different.

The packing. Thankfully, I’ve had the blessing of time to do it incrementally instead of making drastic changes all at once. We’ve depersonalized in stages and have slowly been packing since the closing of our new home at the end of May. I saved his room for last … avoiding the inevitable of permanently packing away his things, fully realizing we will likely never unpack the majority of them again. How do you decide what to do with all of his sweet things when so much of everything brings back so many precious memories of life with him… the life we cherished and would give anything to still be living? How do you decide what to keep, give away or donate when all you wish is that you didn’t have to even think about any of this at all? All you want is him … to be alive, to be a big brother and to see how his personality would be unfolding at almost 4 years old.

We will have a guest room honoring him, designed and decorated just as I would’ve imagined his big boy room to be with hopes of it providing the same joy, warmth and love that his precious personality portrayed. Everything that makes us feel close to him will be there with us, maybe not hanging in his closet or folded in his drawers as we wished they would be, but kept in a place close by so that we don’t feel worlds apart. His sisters will know every bit of their big brother and even though we’ll be in a new space, his spirit will be ever present no matter where we are.

Hadley is now 15 months old and every bit as precious as her pictures show. She has a spunk that I envy, a personality as big as the world and a demeanor that so closely resembles her big brother’s … just as happy, sweet, loving and playful as can be. She continues to fill our hearts with more joy than she will ever truly understand.

So many have asked how we feel about the fact that we were having another little girl (I’m guessing instead of having a boy). Given the surprise of our pregnancy, Wes and I truly had zero concerns or expectations of what we were having. We first needed to get through the toughness of the holidays and the anniversary of his passing before we could really wrap our minds around having another child. After that, our focus and thoughts surrounding our next little one were solely directed to their health, not their sex. In walking our journey and having a perspective that is forever changed, that is truly all that even matters to us. We feel blessed and excited about another little girl and we pray daily for her health and safe arrival.

We have 7 weeks until her arrival, or at least we hope. It will be nice to get into our new home, get settled to some degree and have a little time to breathe before we experience another big change.  We continue to be amazed by the understanding support around us, those who continue to love us well and have since the beginning of our journey and those who have met our family since Drew’s passing and have accepted our story with open, loving and comforting arms.

DSC_3427.jpg

Just being this season.

It’s christmas morning sweet boy. I woke up at 6 am and immediately had a knot in my stomach. I’m missing you as I do every single moment of each day, but today, it feels deeper … stronger … lonelier. In lighting your memory candle, I pray that you feel our love and hear our prayers up above. I’ve gone through each and every precious picture of you, of us and the unbelievable 2 years and 2 months of life with you. I love every single one and am forever grateful for the ability to scroll through them to absorb every ounce of your joy that I can. That is what you are and always will be … the greatest first gift and first joy of my life. I can’t seem to hold back the tears and I can’t seem to help selfishly wishing I could go wake you and Hadley up for christmas morning and witness the wonder and joy in your little eyes of what Christmas would look like at the ages of 3 and 9 months. I can’t help but wish we could all just have a pajama day, slowly opening gifts all day, cooking Christmas dinner and having you help me baking Christmas cookies. I can’t help imagining time spent with family and watching you interact with those we love. I can’t stop all of the natural thoughts from weighing so heavy on my mind, despite knowing you’re celebrating Christmas far better than any of us here on earth. I hope you see and know that your little colorful tree is up with each and every ornament from last year untouched. There will never be a Christmas it won’t be. I hope you feel how strongly we miss you and I hope you know how very much we love you. I hope you know how thankful I am to have been given a few hours of quiet time this Christmas morning to just be, pray and absorb the sweetness of every memory of you.

Sweet Hadley turned 9 months this Christmas day. She literally got her two front teeth for Christmas this year making her smile simply adorable. She is the happy in our every day and is just the most loving, sweet, easy going and playful little girl. She loved her first Christmas and all of the thoughtful gifts that were sent her way.

So many have asked if we were celebrating Christmas, if we’d be with family, if we’d just forget the day and ignore the holiday all together. Our plans for Christmas this year had always been to stay home, to just be with Hadley and Colby and be around all of Drew’s things that makes us feel closest to him. We’ve thankfully had time with family these past few weeks and months which filled our hearts knowing that being just us on Christmas is what was truly needed. What we didn’t know is that Wes would need ACL reconstruction surgery only confirming those plans. He had surgery on the 22nd and has thankfully done so well despite figuring out pain management, on crutches having to be non weight-bearing with no driving privileges for 3 weeks and having to do ‘home therapy’ practically 8 hours out of each day. Recovery is no joke but he’s handling it like a champ. Although it’s not been an ideal addition to our holiday at home, it has forced us (i.e. him) to slow down and I admit has been a little bit of a welcomed distraction.

IMG_0713

With all that we walked with Drew, in cancer treatment and the unknown heart condition last year this exact time, we never really had the ability or time to create “traditions” per say in his short little life. Last year was suppose to be ‘his year’ to really come to know, love and understand a bit more of the fun things that come with the holidays but sadly he just didn’t feel well and we had no idea why. We had just had a bone marrow biopsy proving his cancer hadn’t come back so we breathed in a huge breath of fresh air… “it must just be a virus.” Little did we know it was just that very thing… little did we not know it was weakening his heart with each passing day. That is exactly why this time of year has been difficult on us. Yes, we have Christmas memories that we will forever hold so dear but it’s so much more of just walking through the memories and struggle of how things unexpectedly played out during the weeks of Christmas and New Years that will always leave an impact on this time of year for us. It will forever leave an impact on our lives without Drew.

Holidays for any family who have lost a child are extremely difficult, painful, often joyless and even lonely, despite having other loved ones and children present. That’s just the nature of grief, deep grief. We haven’t been sure how we would ‘do’ this season (celebrate just feels strange to even type out). To the world and most of society, ‘celebrating’ this holiday of Christmas is arranging perfect family christmas outfits for the ideal christmas card, shopping well in advance in order to put a lot of thought and intention into every gift we give, baking all sorts of amazing holiday cookies to send to family and friends, visiting Santa and building the suspense in our little one’s eyes on what to expect on Christmas morning. This is no doubt exactly all I had anticipated incorporating into our season of giving and celebrating Christmas for our family. But this Christmas, this whole entire year, is just different. Life without our Drew has just left a huge hole in our hearts, our lives and our family, making it so very difficult to find the ability to do much of any of the above. Maybe one year, but not this year. What we have been able to do is soak up every bit of joy from Hadley and focus even more on the true meaning of this holiday and Christmas season. You see the very reason for this holiday, the birth of Jesus Christ, is the very reason that we will not only see and be with our Drew again one day, it is the recognition and appreciation of the birth of the one who loves us, who lives in us and who died for us and our sins. He is the reason we have hope which has continued to be the very anchor to our hurting souls. (Hebrew 6:19)

How do you celebrate …

3 years ago today, at 4:12pm on November 12th 2012, our precious baby boy came into this world and into our lives….

IMG_0509 IMG_0671

On Nov 11th, which was a Sunday, Wes and I checked into the hospital as if we were checking into a hotel. Sweet Drew was two weeks late and we were being induced. He had been curled up and cozy and clearly in no hurry to arrive, so with normal stress tests, we weren’t going to force him to come when he wasn’t ready. We were so excited, yet nervous, as we anticipated getting to finally meet our son. It was so strange walking in symptom and labor free. I envisioned my water breaking or at least having some contractions before going to the hospital to give birth but I had nothing … nothing but the general discomfort that comes with being 42 weeks pregnant. I was blessed with a good pregnancy and despite the aches, pains, shortness of breath that I always get early on in my pregnancies and the slight swelling there towards the end, I genuinely loved being pregnant. Our due date of Halloween came and went and the 2 weeks that followed crept by ever so slowly.

IMG_1124 IMG_1372

The wait was worth it . . . oh so very worth it. I will never forget the intense joy that filled our hearts as soon as we saw his sweet little face for the first time. There is no greater love than being a parent and I was beside myself with excitement to have the gift of being his Mom. Nothing in life compares to that first moment and the many moments that continue . . . the moments of watching them grow, watching them learn, watching them recognize & watching them explore. I love the wonder in their little eyes and seeing them learn new things. I love the look on their face when they start to recognize you as their parent and how excited they get to see you when you walk in the door. I cherish the memory of watching his first steps and hearing the sweetest sound of him saying “Momma.” So many precious moments. There is truly nothing in this life that compares.

IMG_8515IMG_1765 IMG_1450

Throughout everything we walked with Drew, our journey through cancer treatment and then the unknown journey of his heart failure, the memories and moments we shared are so incredibly precious. We’d do everything all over again just to still have him in our lives. We not only grieve over his loss, but we’ve also been grieving the life we thought we’d have with him, watching him grow up and being there every step of the way. There is literally a lifetime full of missed anticipated moments. The moment of meeting “sissy” for the first time and getting to witness him as a big brother. The moments of him finally finishing cancer treatment which would’ve been in April and not having to force medicine into his tiny little body any longer. The moment of watching him grow a full head of hair and actually getting to take him for his first hair cut. The moments of watching him learn how to just be a happy, healthy little boy; out playing with friends in our neighborhood and experiencing the joys of summer. We grieve not being able to watch him explore the world in ways he was never able to due to long hospital admissions and weeks we’d have to be isolated at home due to a low immune system. The many moments that we so looked forward to experiencing in his life. So many moments that slipped right through our fingers … so many moments just gone, and so very sudden.

IMG_3915IMG_0141

(Drew’s 1st and 2nd birthdays)

How do you celebrate a day so joyous, so memorable and so very precious when the gift we were given is no longer here? How do you celebrate the life of a child no longer in your arms? November 12th will forever remain such an incredibly important day in our lives, but it feels so very strange to know how to spend it or even honor it in this first year of our loss. I’ve even googled “how to celebrate a child’s birthday who’s no longer here.” I can’t even describe the strangeness of actually typing that into the search bar. Oh, how I wish I was l researching his “I’m 3” birthday shirt on etsy and planning his over the top fall themed birthday party to include a hayride and s’mores over a fire pit instead. These past few weeks have been emotionally challenging as we’ve anticipated ‘this day.’ The natural optimist in me has tried forcing my mind to focus on all of the many many blessings of him, the precious time we did have and just how fortunate we are to know the love of a son. Oh, how very thankful we are to have experienced the love of our son. But, since January, there’s now also a brokenness in me that often overshadows so much of the person I was before, before we lost Drew, and I find myself frustrated, angry and anxious about this life we now have without him. I’ve spent so many days going through pictures and videos of him, trying so hard to just absorb the joy of him and the memories of the life we knew with him. There is an incredibly strange combination of joy, tremendous love, pain and sadness in recalling so many moments with him and just missing him so very much. As painful as that is, it feels far better to sit in our reality, our raw brokenness and pain, than to try avoiding the memories and ignoring our love for him in attempts to ease any of the pain or make this time less difficult.

IMG_4601IMG_4603

Although we don’t feel so happy this first birthday without him, Wes and I feel incredibly thankful to have known the love of our sweet boy. We will forever cherish November 12th as the day we became parents and had the privilege of loving such an incredible little boy. We so appreciate all of you who celebrated his life with us and those who have taken the time to  remember and honor him on this day.

I leave you with the sweetest of giggles from our sweetest boy … https://vimeo.com/145577305

It’s October now …

IMG_9616

It’s October now. It’s been 6 months with Hadley in our arms and 9 months without our Drew. The fog of what we have been living has begun to slowly rise. We’ve been running on autopilot for the greater part of this year and as time continues to go by and the dust is settling in, my grief is taking a very real and more painful turn. Almost like an anesthetic slowly wearing off … the reality of our life here on earth without Drew is slowly becoming more evident and so very painfully concrete. Some of you could possibly assume things may get easier with time, but I’m here to confirm that’s not the case at all. There are reminders of his life with every twist and turn of my day and the more time that goes by only makes me miss and crave him more.

IMG_9623

This statement below was written in a blog post I recently came across. I honestly couldn’t have described it better.

“It is true, I believe, that people have a finite amount of sympathy to dispense before they expect the bereaved [parent] to move on. As a griever, I have come to realize this and so my grief, to some, has become a secret. When someone asks you how you are for the 100th time after, say, seven months, you begin to reply “OK” – there’s only so much about your grief you can tell another person. I am not saying people are intentionally callous, but, generally, they do not know how to deal with another person’s grief. It’s not convenient for them to know the truth. What if you were to tell the truth – “I’m not OK”? You have just handed the person a hot potato. I think the natural reaction, especially for family members, is to “fix the problem”. But it’s important to point out that we grievers do not expect you to fix anything. You cannot fix it.” (http://www.theguardian.com/lifeandstyle/2015/oct/10/a-dirty-secret-called-grief)

So perfectly put. I think it’s also important to point out that although no one can fix our hurt, you can still be there. People can still be present and intentional when spending time with those that are hurting. It’s also important to know that things are still day to day for us. They have been since January 2nd and they will especially be in the coming months as we relive all that we experienced this time last year.

IMG_3483

We’ve been trying really hard to continue surrounding ourselves with community, people who have remained emotionally present and supportive and even stepping out to get involved in new groups of people. Regardless of whether it’s family, friends, or complete strangers, it has proven very challenging to try existing, being where we are in our grief, in the company of others. Gatherings with “all” of our family only remind us that not everyone is there. Meeting new people will always open us up to the uncomfortable conversation of ‘having a son in heaven and a daughter in our arms.’ Being in group settings and talking about day to day and often superficial topics, only causes us to push our grief, and the crazy stressful life we’ve lived the past 3 years, to the side as that doesn’t really qualify as “easy conversation.” In so many ways, our life with and without Drew the past 3 years has now become “a secret” and the thing we now haven’t been able to talk about. Not talking about our son… how incredibly painful that is. Now more than ever, I get why so many who have lost children end up withdrawing, closing up and shutting out those on the outside, those that just can’t understand. That, quite honestly, is the easiest and least painful thing to do.

DSC_0653

These past few months have consisted of some good days and many rough ones. There are days I feel strong enough to venture out, meet with friends and even meet with new groups of other Moms. There are many days that all I want to do is just be home with Hadley and Colby, my safe place, work on onesies (http://claireparkerfoundation.org/what-we-do/drews-cruisers/) and small projects around the house. There have also been days I can barely find the energy or motivation to do much of anything at all. Those days are the hard ones … the days I miss him so much I can barely function … the days where I end up laying on the floor of Drew’s room during Hadley’s naps and cry myself to sleep praying for the gift of seeing him in a dream. Regardless of what I do each day, I devote myself each morning to prayer and devotion as that is honestly the only way I’ve been able to find peace. It’s been amazing really, to be living out my lowest of lows and still absolutely experience God’s strength and peace through prayer. I’m incredibly thankfully for that and for my faith. I go through pictures of both my babies daily and as my Mom has always told me, I make the choice to “stay in today and count every single blessing I’ve been given.”

So in the coming months, as we approach what would’ve been Drew’s 3rd birthday, Thanksgiving, Christmas, New Years and the anniversary of his passing, please know how challenging they will be for us and our family. Please understand that we will likely take a “time out” from normal and routine ways of celebrating the holidays and please also know how very grateful we are for all of you who love us so well.

IMG_4183IMG_4173

We’re excited to finally share …

I mentioned in my post yesterday about keeping busy with personal projects. Below explains a big project we’ve been working on for the past few months. I’m excited to have this opportunity and to finally be able to share it.

Our story.

My name is Mandy Slocum. I’m a follower of Christ, a nurse and nurse practitioner and Mom of two sweet babies. My first born, Drew, was born Nov 12, 2012 a healthy and precious baby boy. He was diagnosed with Infantile ALL at 5 1/2 months old and we lived the roller coaster cancer journey for the past 2 years while receiving treatment at Levine’s Children’s Hospital in Charlotte, NC. This past November, we noticed a shift and change in him. He began not wanting to play, fully dependent on us for comfort most of each day and only wanted to be in my arms 24/7. We of course feared a relapse situation but were calmed after bone marrow results came back clean in December. We were relieved and so encouraged. “He must just be fighting a virus” we said. Little did we know, that’s exactly what was going on, but the virus that was attacking Drew attacked his heart causing irreversible damage and inevitably taking his life very suddenly Jan 2, 2015 at the age of 2 years old. It was called acute viral myocarditis and just about as random as being diagnosed with Infantile Leukemia at 5 months old. How could our baby boy have had the unfortunate luck of being diagnosed with both?

drew july 2013-80IMG_0574

We were 7 months pregnant when we lost Drew and although grateful and blessed for that pregnancy, we were also grateful to have about 8 weeks to grieve our son before her arrival to this world. Our sweet baby girl, Hadley Clara, came into our lives March 25, 2015, and has brought tremendous love and joy to our grieving Mommy and Daddy hearts ever since. It’s been so strange to experience such grief over Drew, while experiencing such love of our daughter Hadley. One doesn’t cancel the other out nor will that ever be the case. Our journey with pediatric cancer continues, just in a very different direction, one that we never wanted to imagine.

HadleydrewscrewHadleybug

Background.
When Drew was diagnosed at 5 1/2 months old with infantile ALL, his only option was to have a central line placed in order to start chemotherapy. Babies are too small for portacaths until a certain age and weight. For a while, his central line would hang out underneath his onesie, putting it at risk of getting soiled by a dirty diaper, pulled, tugged, bit, tangled, you name it. The only other options we found were uncomfortable vests or wraps that just did not do the trick. It was at this point we came up with an idea to adapt the onesies he was already wearing in an effort to keep him as comfortable as possible, as every baby should be, and try our very best to protect the central line that he had to have for at least a year. A close friend to our family helped us… She had the skill and we had the design, and together, we started creating Drew’s Cruiser onesies.

Once we got through the bulk of our admissions that first year of treatment and were home on a more regular basis, I had a lot of extra time on my hands as I still wasn’t able to return back to work. I bought a surger and a sewing machine and learned how to make them myself. It was heavy on our hearts to help other babies in need, especially after witnessing how great they worked for Drew, and ended up making onesies for other cancer babies in the Levine Oncology clinic as well. We eventually started an etsy website and have sold some to families with babies around the U.S. and even sent some all the way to Canada and Ireland!

IMG_1992 IMG_6378

Where we are now.
Wes and I share the common desire to put energy and effort into raising money to support pediatric cancer research as we sadly know how underfunded it is by NIH. We’ve also decided it’s important for us to be able to help families in a tangible way and the only way we keep circling back to is continuing to make onesies for babies who are forced to face a similar cancer journey.

Thanks to a partnership with The Claire Parker Foundation, we will now be adapting and donating all Drew’s Cruiser onesies to babies undergoing cancer treatment in 5 pediatric oncology hospitals. (With hopes to connect with more hospitals in time) This foundation was formed by dear friends of ours in honor of their own brave little fighter, their daughter Claire. Claire lost her battle with the same Infantile Leukemia May 17, 2014 and this family has been working tirelessly to form this foundation in her honor in order to give back and support others who face their own cancer journey. This foundation touches newly diagnosed pediatric cancer families in amazing ways and we couldn’t be more excited about forming this partnership with them. I’ve listed their website below which details it all.
http://claireparkerfoundation.org

IMG_3817 IMG_5051

How you can help.
In the past, our Drew’s Crew supporters would send gift cards and onesies our way in order to help us fund our efforts to donate onesies. Now, with the partnership we’ve formed with the Claire Parker Foundation, we’re fully funded and supported by them, so by donating to the foundation, you’re not only directly helping fund these onesies, but also helping the foundation provide support to so many families currently fighting cancer battles right now.

http://claireparkerfoundation.org/donate/

IMG_5056

A family minus one.

Our minds, thoughts, emotions, memories, fears … they’re always going, thinking, churning, turning, missing … missing Drew with every single thing we do in our day to day lives now. Even through the smiles that you may see outwardly, all of that is always going on inside. There’s a constantness to it all and at times can easily lead to anxiety, feeling frantic, feeling disjointed, feeling depressed. Most days we do okay managing it and have found avenues to channel our anxiety … exercise, prayer, soaking up the joy of our sweet Hadley, keeping busy with home and personal projects, spending time with those that have been genuine and present during our journey. There are plenty of days we don’t manage very well at all. This week has specifically been difficult for a myriad of reasons and I am thankful for quiet, calm weekends at home as a family.

IMG_8883

Being home as a family… even typing out that line adds a little sting to my heart. A family minus one. That will remain a truth in our family for our entire lives to come as we continue to move forward without Drew. We’re still trying to navigate through how that feels, how that looks and how to find strength and the ability to still incorporate him, his memory and his life, into our daily conversations and activities. Meanwhile, we’re trying to love and parent Hadley as her own little being. We lived such an incredible and fulfilled life with Drew, but an incredibly challenging, trying, fearful, uncertain and uneasy life most days during his Infantile Leukemia and all that came with it. We’ve pretty much lived the hardest of the hard in this life as a parent already so being a parent now to Hadley feels so different and in a lot of ways so new. I don’t take one single second with her, with her in the comfort of our own home, for granted, as I fully know and understand long days and nights of parenting a sick baby in a hospital. I have to slow my mind and pray through fears daily as we approach her 5 month birthday coming up and knowing what that looked like when Drew was diagnosed, even with the knowledge that his cancer was in no way genetic. I pray through fears of going through our first ‘illness’ with her as I know it’s inevitable and especially pray for whichever provider happens to greet this frantic Mommy at the pediatric office door.

IMG_9438

Hadley bug .. she’s precious, happy, joyful and so very sweet. She has such a wonderful disposition and is probably the most go with the flow baby I’ve ever been around. She gifts us with smiles each day and loves to laugh, usually at the most random of things. She is the best medicine for our Mommy and Daddy souls and gives more to us than she will probably ever really understand.

   
 

Adoring her from afar. 

Six months today since our Drew’s been gone. I don’t really know how to describe how were doing. We’re doing okay. We’re getting up, going about our new routine and loving getting to know our sweet Hadley. We’re feeling our way through our sadness and missing Drew more each day. The memories and joy of him still bring the deepest longing and desire to still have him in my arms. The last few months have been so strange. It literally feels like someone came into our lives and hit a reset button. Everything we’ve known, worked for, nurtured, cherished, struggled through, loved, survived and prayed for for the 2 years of his life… It’s all gone. He’s gone. Such a huge part of my heart died with Drew six months ago and I have been struggling to find a new purpose for the life I have left on this earth. I am a different person now and am feeling my way through learning who that person is. My husband and my daughter are my sole purpose today and I am praying for strength and guidance on how we can find different ways to honor Drew’s memory and keep it alive. 
We’ve been asked by so many of you what situations help to make us the most comfortable when spending time with friends and family. Just as you are trying to navigate through supporting us in our grief, we’re also trying to navigate our own feelings as we learn of the many things that trigger our emotions. Triggers are endless… watching other little boys his age playing, getting asked the common question of how many kids do we have, seeing his favorite Mickey Mouse on the pediatric office television, seeing other families together with their children, seeing the American flags for the 4th of July weekend like the ones he waved while running down the beach last summer, hearing people have conversations about heart failure or even hearing the words chest compressions … so many things can take our thoughts soaring in 1 billion different directions with regards to memories of his life and the nightmare of how it ended in January. We’ve come to realize triggers are just going to happen and they’re going to be said and there’s not a whole lot we can do to prevent that. So, there is no ideal situation and there is no way for everyone to know what things may trigger our emotions or make us upset. Nothing is ideal right now, especially without him in our lives. 

  
So, for family and friends we are close with, those of you who love him and who have continued to be present since the very beginning of this journey, it’s okay to talk about Drew and quite honestly, we would rather you bring him up in casual conversation than not bring him up at all. That makes us feel like his life never happened, like he never existed and like he is close to being forgotten. For those of you that we work with, see and talk to on occasion or may not know as well, it’s usually best if you let us guide conversation. We’ll bring him up as we feel comfortable with who we are around and find it easier to keep things simple. 
Sweet Hadley is amazing. It amazes me how calm and precious her demeanor is after having such a stressful and emotional pregnancy. She’s easy-going, has such a laid-back personality and even has the same sweet sparkle in her eyes that her brother did. We’ve been enjoying her sweet smiles and new giggles now that she’s three months old and will be excited to see more and more of her personality coming out. Although it’s not the way I had ever imagined her spending time with her brother, the weather has allowed us time out at “the park” to sit, play and talk with him. It’s quiet, peaceful and away from the city. Although it is heartbreaking to know that is the closest they will ever be together on this earth, I do smile knowing deep down he’s watching from Heaven and adoring her from afar.

  

The promise of heaven.

Make it a point each and every day, multiple times a day, to hug your babies, be present in your loved one’s lives, live with intention and count your blessings, no matter how bad you think things are. If anyone gets anything out of the posts I publish, I pray these things are the main takeaways and are incorporated into the daily routines of all who follow this blog.

It’s been a tough few weeks as our church family has suffered the loss of two more sweet babies. Burying one child is horrific enough … having to bury two . . . there are simply no words. It all takes me back to exactly how I was feeling immediately after Drew’s passing and my mommy heart would give anything to take this hurt away from their family. I pray that the Lord just surround them as he has surrounded us with as much grace, strength, comfort and community support as possible to get them through this nightmare.

This nightmare. It continues with daily reminders of what was, what we had dreamed our family to be and what is no longer. Drew’s toys, books, artwork and personal things remain and sit as they were the day we were admitted to the hospital. Dust and cobwebs have started to settle in and I just can’t find the strength to dust them off, to dust his finger prints off. Drew’s door remains closed and I’ve only been able to find strength to go in there once; once on mother’s day weekend when all I wanted to do was be as close to him as physically possible, sitting in his chair grasping for memories of him reading books in my lap, breathing in his clothes in hopes that I could still smell his sweet little body, squeezing the lovies he cuddled with each night and praying that God still allow Drew to know and feel my love.

Grief looks so different for everyone and carries many different meanings for each person who experiences it. Our grief, the grief of losing our sweet baby, is like a constant weight pulling and tugging at your heart. It’s always there. Always present. The intensity of it comes and goes and usually at very unexpected and unforeseeable times. At certain times the weight of our loss feels manageable enough to go about our day. Other times it sits so heavy on your heart that you can hardly breath. Some weeks we go about our new normal and things start to ease up to some degree and then a memory, picture or feeling overcomes you and sends you spiraling back into a pit of a million emotions. Grief ebbs and flows but is, and always be, ever present in our lives. A big part of grief is often times being left with regret, guilt, remorse, and wishing you had said or done things differently. Wes and I are truly blessed in that we don’t have any of that. We just miss him so very much. We miss everything about him and pray for the ability to remember every memory with him. We’ve recently started a Drew journal and have been able to start documenting every little thing we remember in hopes we will never ever forget.

We couldn’t be more thankful for sweet Hadley and are so grateful for the gift of her new smiles and interactions towards us. She’s precious and her little personality is starting to shine through more and more each day. This past month has been busy and I’ve been grateful for that. I do better with staying active, making plans for things to look forward to, keeping some sort of a schedule and having some type of routine. I’ve found I have very little care or energy to put towards things, people, situations and relationships that require additional energy or add unnecessary stress. We find that keeping life simple is best for us right now as we pray for clarity and direction down this new path of life.

IMG_1904

As David Chadwick perfectly stated this past weekend, “the promise of heaven means that this world, and it’s pain, are not the end.” As heavy as everything feels in our lives right now, I find so much peace in this and know this truth deep down in my heart. As so many people who are suffering experience a shift in their faith or even walk away from it completely, I have only drawn closer and find more comfort in continuing to seek him. I know with all certainty Drew is home in heaven, happy and healthy, and that I will absolutely hold him in my arms again one day.

IMG_6240 IMG_3786IMG_8652

Our tremendous gift

As most of you probably already know, our sweet girl, Hadley Clara, made her arrival 2 days past her due date on March 25th @ 12:48 am. She’s here, safe and sound and, thankfully, all has checked out just fine with her health. We welcomed her into this world with anxious and nervous hearts but with open, loving arms. I was admittedly unsure as to how my heart would feel with her delivery. We felt joy and we felt complete and genuine love for her and I was relieved and grateful. She’s beautiful. She’s sweet. And the joy of her has been a little bit of a relief to our grieving hearts. To our surprise, she came out blue-eyed with blond hair looking more like her Momma. I love that she has these character traits of her own, but I also love that her face shape, her button nose and her precious demeanor very much resembles her handsome older brother.

(1st picture is Drew. 2nd is Hadley)

IMG_0754 hadleyface

I’ve sat down to write this blog so many times since my last post. I end up in tears and erasing everything I ever type out. Nothing seems to adequately explain where my heart has been these past 3 weeks and where it is currently. Combine every possible emotion with postpartum hormone fluctuations and sleep depravation and you can imagine my dilemma and state of mind. Some of you may be worrying over postpartum depression and I can assure you I have been on high alert for this to be a possibility given how life has been since Drew’s been gone. The hormones sure haven’t done me many favors but every single thing I’m feeling and going through, every tear I shed and every moment spent just missing him so very much… it’s all just a part of this new journey of grief, of our tremendous loss and the immense love we have for our sweet boy. Our life is not and will never be the same without him. The believer in me knows his passing is a part of God’s master plan, regardless of my misunderstanding of it all now. But the normal, expected and natural thoughts still creep into my Mommy mind … during each waking moment of the day and during the dark, quiet moments of the night. We miss him just as much if not more now that Hadley’s here. We wish so badly to still be loving and adoring him on this earth and equally wishing he was still here to experience the joy of being her older brother. To have only been 2 years old, he was so very aware and excited about her. I would give anything to be having to learn to juggle having a toddler and a newborn, even with weeks he’d be on steroids and finishing out his chemotherapy regimen. I wish so badly that we were planning the celebration for his end of treatment date coming up April 26th, the day we’ve been looking forward to since our diagnosis. I’ve been mentally planning for it since the day we started our maintenance year of treatment. I wanted to have a cookout here at our home, invite everyone we know and have farm animals brought for the kids to ride and enjoy in our back yard. Drew loved animals so much. He would’ve loved it and it was going to be perfect.

For every ounce of sweet joy Hadley gives us, there is equally an ounce of heart ache for our Drew and for the family of 4 we were to be. It’s so strange to have gone through and experienced all that we have in the past 2 years with Leukemia and it’s miserable treatment coarse, to now come to a place where it feels like we’re starting our family all over again. We feel cheated to such a degree and find ourselves staying in prayer to navigate through the new normal of our family, and our life, without him. Just as we forced ourselves to choose joy on so many joyless days during treatment, I’m choosing to think of our short time with Drew as the most tremendous gift … a gift of incredible love and time with an incredible little boy. Our family of 3 tackled every step and hurdle of treatment together as a family, not torn apart or separated, always together. We had a tremendous amount of precious quality time with him that regular parents don’t ever get in the normal course of life and for this, I will always be grateful.

So for now, we continue to live each day, day to day. We’re soaking up the sweetest of snuggles from our precious girl and are grateful for the blessing, and gift, that she is and for the many blessings she’ll continue to bring.

Hadleybow