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| Eli at age 6, before diagnosis. |
It's funny how something you don't think you need suddenly becomes all important. Ever had that happen?
This guy. A surprise from the get-go, with a busy three year old son and barely-turned one year old son already filling up cribs and toddler beds and our overflowing hearts, and then we found out quite unexpectedly, that he was on the way. And after the shock wore off came new feelings of eagerness: maybe this one will be a girl?
I still remember smiling big and pulling on that pink maternity top in joyful anticipation on that day, the day I went to find out the big news. Was it a boy or a girl? I hardly had time to settle in on the table when the ultrasound tech waved the wand and definitively pronounced, "It's a BOY!" In that split-second, my life flashed before my eyes: wrestling matches, stinky shoes, and never enough food in the house.
My three sons. I have to admit, this news was difficult for me. I choked back hot tears along with my pink dreams.
The very next morning, the doctor called bright and early to tell me that there was a problem with our baby boy's brain. Horrified panic instantly gripped my heart, and those tears filled my eyes once again. But this time, they were tears of shame. I felt guilty for wanting this precious son to be a daughter. HE was meant to be, and HE was mine. In that instant, the life of this son that I didn't think I wanted became the son that I didn't think I could live without. God is faithful to work like that, isn't he?
Weekly visits to the hospital for ultrasounds brought out doctors relaying the worst possible scenarios (hydrocephaly) and the best outcomes (learning disabilities). Many times, we were asked to attend counseling in the hospital to consider aborting the "imperfect" fetus. As my belly swelled and I could no longer see my toes and the kicks grew harder and stronger, I
knew that this was, indeed, LIFE growing inside me and not "just a fetus." A fetus is, after all, a growing baby simply renamed to somehow make it easier for some to dismiss the fact that God
Himself knitted together each and every one in their mother's womb. And we would choose life for this baby, this kicking son. For truly he was knitted together by this great God and designed to live life.
We had a name ready for this son that we loved: Eli Robert. Together, the names mean "lift up the name of the Lord to fame and glory.” And those exact words have been our prayer for his life ever since, this unexpected gift we had been given.
When I think back to the day of his much awaited birth and the apprehension we felt, I have to laugh. All of the drama, the endless ultrasounds, the excessive warnings and then... just baffling silence. Little Eli sure
looked just fine when he was born, but NO ONE said a word! We watched him closely in those first few uncertain days, wordlessly comparing him to the two energetic tots already scrambling at our feet. While we were braced and ready to face whatever adversity his little life would bring, there was, quite simply, nothing. As I held our little boy and tenderly placed him in his crib each night, fitting snuggly next to the crib of his 18 month-old brother, I had never been more certain that no matter what, no matter how difficult or challenging, life is worth fighting for.
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Not so long ago, these super guys were my daily companions!
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I am pondering all of these things as the "One Year" approaches on Eli's diagnosis. LIFE. It was at Christmas time last year that our normal way of life was stopped dead in its tracks. Eli had been showing some odd and troubling symptoms that had us perplexed over the fall months. He had started kindergarten, so it was easy to dismiss the little changes he was exhibiting to the big change of being home all day with mom and then heading off to full-time kindergarten. But we did begin to pick up on the fact that he seemed really, really thirsty and had to use the bathroom
a lot. He was so tired when he came home from school, but again, this seemed to be explainable. When I watched him change his shirt in the mornings, I was concerned by how small his arms looked, like tiny twigs. We had just had his yearly check-up, and everything was said to be fine, so I had pushed aside the taunting little fears that something could be wrong. We switched around the kids rooms at this time, which also meant the boys were using a new bathroom located closer to our master bedroom. We were suddenly awakening to loud, stomping feet rushing to this closer bathroom. We were startled when we realized that Eli was making more than one trip to the bathroom every night. How long had this been going on and we never knew it?
Like any good (ok, worried) mom, I began to endlessly research medical information on the internet, checking out symptoms of this and that disease and condition, in between Christmas shopping, Christmas parties, and all of our Christmas fun. During those two weeks off for Christmas Break, I watched Eli closely and witnessed him exhibiting more aggression and hostility with his brothers that we weren't used to seeing. I felt concerned, but still, we had so much going on and he didn't seem sick, so I just resolved to keep an eye on things over the holidays and plan a trip to the doctor after the break if things didn't improve.
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| Christmas Eve |
On Christmas Day, my children awoke to lovingly-wrapped gifts under the tree and stockings full of small toys and delightful candy. They dove into their new Legos with glee, and ripped off the tops of the plastic M&M candy canes, tipping their heads back to let the smooth chocolates slide down their throats. I snapped pictures of the whole happy mess in their new pajamas and we laughed merrily. After a special breakfast, we headed to Nana's for our traditional Christmas dinner, Nana's amusing games, and a bright and happy time with our family. The kids cheerfully dashed around the house filling their mouths with chips and dip and Christmas candy as they went. Much like your homes, we celebrated and ate way too much! I was keenly aware of Eli's pacing and agitation. I noticed trip after trip to the bathroom, and suddenly, on that day, I knew deep in my heart that something was
very wrong. I whispered, giving words to my now gnawing fear to my family. As the night came to a close, we had our four kids use the bathroom one last time before the short trip home. We gathered the gifts and headed out into the frozen, mid-west night. Once everyone was loaded up into the car, I quietly voiced my renewed concern to my husband as he drove us home. I listed out every detail I had noticed, and told him I feared something was horribly wrong. Just ten minutes into our usual 30 minute drive home from Nana and Grandpa's, Eli gave immediate confirmation to all I was describing. He frantically announced that he had to use the bathroom, and it was urgent. We were shocked; he literally had just gone!
After a quick trip to the closest gas station, we finally made it home. We put the kids to bed with haste, and began once again to research online, but this time more seriously. By now we both knew what it was, deep down. It kept appearing at the bottom of the long list of possible diseases and illnesses that we had considered and crossed off in our minds. Before, this one was crossed off immediately; it was too serious and too scary of a disease. But this time, we couldn't cross it off. In fact, it now stood out from the rest, almost jumping off of the computer screen. We had no idea what exactly it meant, but we knew it had somehow put it's tight grip on our son and our life. We never fell asleep that night. Christmas Day and had started out so joyful, and now was ending in an utter nightmare. We were wide awake as our son rushed to the bathroom four times that night, and we were terrified. Unaware of the full dangers of the disease, we didn't even realize his life was at risk that very night. I awoke him in the morning to take him to our pediatrician, only to realize he had had an accident in his bed, the first accident since he was a toddler. I can't even put into words the shock to my heart!
We rushed to the doctor. Before we had even settled in, the doctor heard the symptoms and definitively pronounced, "It's Type 1 Diabetes." Once again my future flashed before my eyes. Let me explain. This isn't the kind of diabetes that you may get from eating too many sweets or not exercising. This isn't the kind that you can exercise away or the kind that your elderly relative pops pills for. Sadly, there is no cure, no pill, and no special diet that can take this disease away. This is the forever, insulin-dependent, life-long disease in which the pancreas has, essentially, died. We were told that Eli now requires at least 8 finger pricks to check his blood sugar and 7 shots of insulin every. single. day. Forever. Can you even imagine uttering those words to your 6 year old?
We were given the devastating news and then sped to the hospital because, we had learned, without immediate insulin Eli's life was in danger. I began to call family on the way, still unsure of what the diagnosis all meant for Eli and for our family. The hospital began to train us for three long, mind-boggling days and me, the girl who hates blood and needles, was suddenly forced to poke my son with a prick to draw blood, squeezing his little finger to get just the right amount, and then to give my son several shots a day to keep him alive. We were told to check his blood before each meal and snack, before bed, when he wakes up in the morning, before sports, in the middle of sports, before and after gym class and recess. And to check him at 3 a.m. every morning to make sure he doesn't have too much insulin in the middle of the night and we lose him. My hand violently shook the first time I slid the needle into his soft and white, little boy flesh. "Are you ok?" I whispered every time for the first few weeks. This is our new normal. And it is
hard.
(Continued below)
