I know many of you have been waiting me to write, to write something, anything. But I have been mainly posting pictures because I can't find the words.
The six weeks that have passed since Eli was born have been very emotional for me... all emotions. From the heights of joy, to the frustration of sleeplessness, to the depths of fear.
You see, it is hard for me to believe, truly believe, that it is possible that Eli is healthy. That I will one day hear him say the word "Mama" or watch him walk across the room to me. Some days I feel as though I have been transported back in time and that I am about to relive our year with Noah. Most days I watch Eli like a scientist, searching for points of divergence between him and his older brother.
Why is it so easy for me to give into fear? Several reasons, actually:
- One is the ambiguous nature of Noah's diagnosis... he tested positive for a leukodystrophy known as Alexander Disease. However, the mutation he had was in an atypical location on the Alexander gene (read my original post about this here) which leaves the door slightly ajar to the possibility that this was not the cause of Noah's issues. So... we could do a blood test for this mutation with Eli but the results would be less than conclusive in my mind.
- Another is that Noah's first few months of life were very normal. He did all the things he was supposed to do. So Eli's first few months of normal life offer me little comfort... I'm thrilled that he is "normal" so far, but I find myself holding my breath and wanting to fast forward the next few months.
- The last is where Noah and Eli converge... points of similarity that feel too familiar. Not making enough milk to nurse either baby, early developing reflux in both boys, introducing them to antacids. You get the idea. The overlap could be completely coincidental, normal baby stuff. But it feeds my fears.
- Actively seeking points of divergence between my two little guys. One happened at birth. Noah was only 6lbs 8oz at birth. Eli was a whopping 9lbs 7oz. Noah never really seemed to enjoy eating... almost from the beginning he struggled to master the bottle and after he was 4 months old, he struggled to gain weight. Eli has been eating like a champ (although he doesn't always feel well afterwards) and is currently consuming over 6oz of formula per feeding. When we go back to the pediatrician this week, I fully expect him to be around 14 lbs! It is my fervent prayer that his voracious eating continues through the critical time when Noah started to struggle with feedings (around the 2 month mark). And I long for additional points of divergence that I can report to you in future posts.
- Sharing Eli with others. Fear makes me want to hide in the house. Fear makes me worry that others will look at Eli and tell me something is wrong with him. Hope tells me to bring Eli to Bible study with me. Hope encourages me to invite friends to visit. Hope allows me to leave Eli with his grandparents or a babysitter for an evening.
- Reminding myself of TRUTH and through prayer:
"There is no fear in love. But perfect love drives out fear..." 1 John 4:18a
"For you created my inmost being; you knit me together in my mother's womb." Ps 139:13
"'For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future." Jer 29:11
"Be joyful in hope, patient in affliction, faithful in prayer." Rom 12:12
So there it is.
My heart bared, my fears revealed.
And this chubby little face that I love so fiercely: