I first came across Megan and her boys Crew and Dex very shortly after Cameron came home from the NICU. I was struggling, I was in such a dark place and I was obsessed...with everything TTTS. In a search on either a message board or the internet I came across this blog, Our Miracle Sons. As I scrolled through the stories of Crew, Megan's 28 weeker TTTS survivor I began to wonder how this journey all began. When I went back to the start of their journey I sobbed. I read what Megan wrote and I found so much hope. This is the entry that broke my walls of sorrow and allowed me to see hope beyond just the fact that Cameron had survived.... http://crewsjourney.blogspot.ca/2008/11/meeting-dex.html
At first reading some of Megan's memories of her little angel, Dex, were painful for me....
I felt him the moment his body entered the room and holding him in my arms the first time was like a healing salve for my broken heart. I'll never be able to explain it perfectly, but the closest I can come is to say that I just felt an overwhelming sense of peace and hope. He was stunningly beautiful. His spirit stayed with us throughout the day, giving us comfort and letting us know without question that he loved us, he knew us, he claimed us as his parents, and that things had turned out exactly as they were supposed to. In those hours, both Justin and I came to know that we had been privileged to take part in the life plan of a perfect spirit. In those moments, the veil seemed particularly thin and mortal life seemed especially brief.
Their were painful because I was so jealous. I hated myself for not feeling this peace when I met Cole. I still struggle with this at times but I have come to a sense of peace with it now. I was, however, most affected by reading this...I wish you could have met him. He didn't belong here. As much as we knew we would miss him, letting him go seemed so right. He is strong and wise. He is playful and kind. Had he lived, I dare say we would have considered him an "old soul." He's had a busy week, comforting us all in our moments of weakness, me in the hospital, Justin as he carried on with the very difficult duties and tasks required if him this week, cheering Crew on every other minute.
It's been such a blessing to come to know my wild and playful little Dex these last few months. I miss him immensely and if it sounds like I haven't cried over his loss, that is a gross misrepresentation. Our grief is tempered by our joy at knowing that he is safely with the Lord, but I will continue to miss him every day. Holding him on Monday and Friday helped me find the perspective that I needed to go on, but I'll confess that I have to work really hard to maintain that perspective and peace. I never know what's going to shatter the comfort. It's usually dumb, trivial, unimportant earthly things that disrupt my connection. Sometimes I'll be laughing over something and then the tears will unexpectedly erupt in a moment of unanticipated grief.
and most importantly this...
From the moment we knew the twins were coming to our family, we felt the hand of the Lord in the process. We've felt time and time again that things were progressing as they were meant to and we have felt the love of the Lord through this difficult process since the summer. It's impossible for us at this point to throw up our hands and cry "now you have forsaken us!" That just doesn't make any sense to us, and it doesn't feel right or true. While we wouldn't have chosen this challenge, we do understand that there is purpose behind it. We knew it would be challenging to have these twins. We knew it would require a horrendous pregnancy and then the exciting task of raising two rambuctious boys. That's what we had been preparing for. We just didn't know that wasn't exactly the trial waiting for us.
I was in awe of Megan's sense of peace and acceptance. I ached for this and knew it was what my soul needed. I began to look at Cole in this same sense... as my playful twin (he, too, was the busier twin in the womb), as a kind and wise child who knew he had more to offer his mom from Heaven then he ever could from earth. And most importantly I began to remember Cole for the guidance he gave and continued to give...for how much he protected his twin brother after he passed away, how much comfort he gave me when I worried about Cameron.
I also could relate so much to this last paragraph. From the moment we knew that we were expecting twins I could sense God's hand in this. I mean we were actively trying NOT to have another child. Too many things 'fell into place' to be 'coincidence'... 'that' happened at 'that' time for a definite reason. I didn't 'want' twins and yet I was in awe of this miracle that God had created in me. I questioned how we could be possibly make this work and yet I knew that God gave me what he knew I could make work....of course how little did I know then what that really meant. And while this wasn't what I had chosen, was never what I wanted for my twins, I also knew that God had chosen if for us for a reason.
Eventually Megan actually found me...and I think my blog...this very blog. We connected then and have stayed connected ever since. I have cheered Crew on from here in Ontario just as Megan has celebrated Cameron's victories from where she lives. We admin a facebook support group together and chat on a pretty regular basis.
When she began her Teeny Tears project I cried too. What a wonderful way to honour Dex. I was so inspired that I thought I might help... but I can't sew, hate sewing and though I know there are other ways to help it would seem this is not what God has in mind for me.
I hope you will enjoy reading about this amazing mom, amazing friend and be as inspired as I am.
Crew and Dex’s Story
In the summer of 2008, our family received the exciting and surprising news that we were expecting twins! Knowing that we were now involved in a high risk pregnancy, I hopped onto the internet and learned all I could. In the back of my mind all I kept thinking was, “people have twins every day! This is not scary; this is exciting!”
Early in November, when I was only 28 weeks along, my water broke in the middle of the night. After calling one of our good neighbors to stay with our children, we raced to the hospital. At first the nurses couldn’t find any heartbeats, but that didn’t seem terribly unusual or alarming because they were very young and very small babies. After they had given me all the medicines in their arsenal to stop my labor, they became more serious about finding heartbeats. They found one tiny, weak heartbeat and it was failing quickly. They rushed me across the hall to the operating room and brought my sons into the world 4 minutes later through an emergency c-section.
When I awoke from the general anesthesia several hours later, my whole world had changed. Our son Crew was 1 pound 8 ounces, the size of a dollar bill. He had been born without a heartbeat, but was quickly resuscitated. Two more minutes and we would have lost him. As it was, he had a very tumultuous 3 months in the NICU, camping out on death’s door more times than we care to count. Today our little survivor attends special needs preschool. He started walking and talking this past summer and is a great blessing to our family.
Crew and Dex’s Story
Crew and Dex’s Story
Our son Dex was 2 pounds 1 ounce. It was my husband’s greatest sorrow to tell me that our little one did not survive his journey. He had passed away minutes to hours before birth from an undiagnosed and dangerous disease called Twin to Twin Transfusion Syndrome.
It’s a condition that affects a small percentage of identical twins that share a placenta. I learned later that my doctor had suspected that we were developing this disease, but hadn’t wanted to alarm me, so failed to mention it during our final ultrasound appointment. He also did not send us to a perinatologist, or mention the possibility when I went into false labor twice in the weeks preceeding the delivery of our sons. I had asked about the possibility of TTTS during every ultrasound appointment… except our final ultrasound at 25.5 weeks. It was the one time I did not ask about it. My doctor did not understand the urgency of proper diagnosis and intervention. Years later I learned that I had been exhibiting all of the classic symptoms of TTTS on a rampage. In the end, we had TTTS, placental abruption, and ruptured separation sacs. I thought I was just 5 foot 1 and having twins. Little did I know what a dangerous train wreck was going on inside.
Dex was placed in my arms wearing this beautiful handmade gown that was appropriately sized for his tiny body. The bereavement specialist at the hospital took hand molds and feet molds so that we could always remember how small he had been. They took beautiful pictures of him that we count among our greatest treasures today. They were even able to take a few pictures of our sons together in Crew’s incubator, the only photos we will ever have of them together outside of the womb.
Meeting Dex in person was one of the most beautiful experiences of my life. I felt him the moment his body entered the room and holding him in my arms the first time was like a healing salve for my broken heart. I’ll never be able to explain it perfectly, but the closest I can come is to say that I just felt an overwhelming sense of peace and hope and love from my Heavenly father. He was so beautiful. His spirit stayed with us throughout the day, giving us comfort and letting us know without question that he loved us, he knew us, he claimed us as his parents, and that things had turned out exactly as they were supposed to, no matter how we got there.
I don’t wish to give the impression that my heart wasn’t completely broken, because the truth is that I didn’t know how I could bear to live without him. There were so many moments of anguish, nights that I was afraid to fall asleep, tortured thoughts of how we could have saved him with earlier intervention.
Sometimes the miracle is in the miraculous healing of a child against all odds, as we received with Crew. And sometimes the miracle is in the healing of our hearts when trials and tragedy strike, crushing our expectations and threatening our faith.
As we came closer and closer to Dex and Crew’s third birthday, I began searching for a project that would honor Dex’s memory and give purpose to my grief. I was looking for something economical, meaningful, and within my limited sewing abilities.
I would make tiny little diapers for stillborn micropreemie infants and those that pass away in the NICU. We launched Teeny Tears last November.
Approximately 26,000 children are stillborn in the United States every year, about 1 in 160 births. Another 19,000 children die within the first 28 days of life. A significant number of these angels are preemie or micropreemie infants. The littlest angels are so small that even the very tiniest Pampers NICU diaper is far too large for them. Besides that, their skin is so delicate that commercial diapers are very damaging.
Our volunteers donate to hospitals and bereavement support organizations at no charge. These small diapers fit angels between 18 and 23 weeks gestation. The large ones fit angels between about 24 and 30 or 32 weeks. The need for these diapers is enormous and endless. Gone are the days when angel babies must be left with naked bums because there is nothing suitable. No longer must nurses try to fashion a “diaper” out of cotton balls and tape. Our little diapers offer dignity and modesty to the tiniest angel babies. We provide two diapers per family, so that the parents don’t have to choose whether to keep the diaper in a memory box or to bury the diaper with their child. This way they can do both.
Grieving parents often feel very lost, alone, and confused. Every special effort to honor their loss goes a long way. It is very difficult for a family to say goodbye to their child before they got to say a decent hello. These diapers, made with love, tell parents that someone understands that their child existed, that they are special, loved, real, and that they matter. The love that goes into these diapers tells a grieving parent that someone understands that their loss is tremendous. Because “a person’s a person, no matter how small.”
As you can imagine, November is always a tender time of year for our family. The year we launched Teeny Tears was the first November that I didn’t spend the first half of the month hiding under my covers in bed, eating chocolate leftover from Halloween. As I sewed for angel families, I felt close to my son and my heart was filled with love and a peace I didn’t know was possible.
Teeny Tears is my way to make sure that Dex and all of his angel friends are remembered. It has been an unexpectedly joyful and healing endeavor and I have met some of the most caring and generous people along the way. Many of our volunteers are angel families themselves, some of them still the walking wounded. As they participate in serving others in a similar plight, a miracle happens. They find their own sorrows lessened and their hearts begin to heal. Joy is found and lives are changed.
What began as a personal labor of love for the angel families at my friend’s local hospital in Washington and then ours in Utah has caught on like wildfire within the bereavement community. We have a busy Facebook group filled with volunteers across the United States as well as in Canada, Australia, and New Zealand who are gathering their families, friends, neighbors, and churches to serve Heavenly Father’s tiniest children and their bereaved families. We even made our first delivery to a hospital in Guatemala.
As an inexpensive, simple, unique, educational, and meaningful service opportunity, our diapers are being sewn by families, sewing clubs, youth groups, Eagle Projects, Angel Mother grief support organizations, and churches of all religious denominations. We encourage our volunteers to donate within their local communities and we also match volunteers with hospitals all over the country on our growing waiting list. Grandmothers are digging their flannel scraps out of storage, families are repurposing old receiving blankets and shopping yard sales for fabric remnants. And we know when all the fabric sales are going on!
To date, our volunteers have donated more than 21,000 diapers to grieving angel families across the world. While I wish no one ever needed our diapers, I am pleased that there is something that we can try to do for these families to let them know that they are not alone.