A few weeks ago, I specifically remember waking up before the kids, something that rarely happens as I am usually awakened by their their tiny voices calling "Mommy!" As I made my morning coffee, I couldn't seem to shake the crushing weight of sadness. I was sad for Dillon, sad for our family and even sad for myself. As I began to prepare breakfast for the kids, since I knew they would be up at any moment, I wondered if it would be a good day...or a day that I just have to put one foot in front the other--a day that I just go through the motions of everyday life.
The kids and I had an adventurous morning planned, but, to be honest, I wasn't looking all that forward to it. As I awakened our 4 year old son, his face lit up and the first words out of his mouth were, "We're going blueberry picking!" I couldn't help but smile...his enthusiasm was contagious. And then it hit me...although this is the most difficult time of my life, dealing with both the stresses of a move and the heartbreak of Dillon's diagnosis...to my precious first born, this is just SUMMER. He and his sister will never be these ages again; I will never have this precious time with them back. It may sound cliche, but for a moment I was completely overwhelmed with the beautiful innocence of childhood. In the midst of this storm, I am still a Mom. Not only a Mom to Dillon, but to my two other children as well. Children that need me. That need to be held. Played with. Fed. Bathed. Put to bed. Read to. Loved and, ultimately, ENJOYED. There is abundant life to be found in the present, with them, even in the midst of heartache. There is joy unspeakable now -- and there will be as well after the uncertainties with Dillon have come and gone. I pray God will give me to strength to remember that and the grace to get through what is to come.
So how do you handle something like Trisomy 18 with a child? This is something I have thought about considerably. My husband and I knew that we didn't want to completely hide what is going on, but how do you even attempt to explain the situation to a 2 and 4 year old? How do you tell them that their much loved, anxiously anticipated brother is going to die? The death of an infant is something that most adults have a difficult time accepting, much less toddlers. So, after much prayer and guidance from those that have walked in similar shoes, we decided to tell them that their little brother is sick and may not be able to come home with us from the hospital. This is a tricky thing, because kids relate sickness to what they know--meaning they know they get sick, but ultimately get better over time. Because of her age, our 2 year old is mostly oblivious, but our 4 year old seems to understand the magnitude of the situation a little more (in the best way a young child can). As the questions came, we had to explain the differences between getting an illness that can be treated with medicine and one that cannot. We stressed that Mommy and Daddy and Sister are fine and that we are going to be okay, but God made little brother a little differently. Because of these differences, his little body does not work just the way it should, but that doesn't mean we love him any less.
We talk to Dillon and sing to him, just as we would any other baby. We believe he feels how much we deeply love him. It is the most precious thing to hear our daughter sing "twinkle, twinkle little star" to him and it's music to my ears to hear them both tell him that they love him and goodnight before they go to bed. They ask to pray for him and delight in feeling him kick. Not long after Dillon's diagnosis and shortly after we broke the news to our children, our 4 year old said, out of the blue..."Mom, when baby Dillon is born, we may get to keep him for a minute!" He said this with such passion in his voice and hope in his eyes. I almost lost it. But instead, I was somehow able to pull it together and said, "That's right. We may get to keep him for a minute, or a few hours or maybe even a day. We just don't know yet, but we can always hope."
We believe that God knows exactly how long Dillon's heart will beat and if we will get to meet him in this life or in Heaven. I try to remind myself to keep perspective. The minutes, hours and days seem long, but the years go quickly. This lifetime will be over in a blink and then I will have eternity to spend with ALL of my children. I am not saying I want to wish my life away. I simply want to enjoy the blessings I have while I am here, alive on this earth, while also looking forward to eternity in a place where there will be no tears or suffering. Until then, I shall remember what my son has taught me...there is ALWAYS hope, even if it is just for a minute.
He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.
Revelation 21:4 ESV
Let the children come to me; do not hinder them, for to such belongs the kingdom of God. Truly, I say to you, whoever does not receive the kingdom of God like a child shall not enter it.” And he took them in his arms and blessed them, laying his hands on them.
Mark 10:14-16 ESV
Out of the mouth of babies and infants,
you have established strength because of your foes,
to still the enemy and the avenger.
Psalm 8:2 ESV
Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there,' and it will move. Nothing will be impossible for you.
Matthew 17:20 NIV
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