When I was little, I never would have dreamed I would ever have a live journal. Though I loved to write short stories as a girl, writing about my life and thoughts always seemed boring. I was hardly interested enough in my own life to write about it so…why would anyone else ever want to hear about the day to day of one Susanna (Challies) Rose? It’s still a clumsy thing for me to rehash life. I actually dread doing it. I dread even more the knots my stomach can get tied in once I hit publish. I was reading Ann Voskamp’s blogtoday and noted even the most popular, successful bloggers out there get tied up in knots sometimes. She apologized for a previous post she wrote and I was reminded again of why blogging can become such a bain to one’s existence.
So I decide to hit publish less and write only what seems important enough to read. Or that’s my desire anyways. This poem my mom used to quote by a man named C.T. Studd has been going through my mind lately as well, convicting me, giving me pause as I go about the day…the last line a constant refrain in my head:
Two little lines I heard one day,Traveling along life’s busy way;
Bringing conviction to my heart, And from my mind would not depart;
Only one life, ’twill soon be past, Only what’s done for Christ will last.
Only one life, yes only one, Soon will its fleeting hours be done;
Then, in ‘that day’ my Lord to meet, And stand before His Judgement seat;
Only one life,’twill soon be past, Only what’s done for Christ will last(…)
What do I need to do right now, this spring 2011, for Him? The list is clear enough: 1. care for Amelia, 2. pray for my character building. (If I am not being the godly wife and mother I should be, I can not expect my children to be who they are called to be. I have just a tad bit of work to do…), 3. pray for character building in my children.
Some of you may be wondering why I didn’t go straight into writing about Amelia…I know there are many who want to know how our little girl is doing. Much of my silence has been due to exhaustion and feeling incredibly overwhelmed…too overwhelmed to write about this part of our lives. Many days I can hardly make sense of what is going on so writing about it is just too draining. In order to write about her, I had to ease my way into this first blog post in over a month…
“I want to know what is going on!” I often say to my mom on the phone. “Why is Amelia not gaining weight faster? Why is she still experiencing many of the same developmental delays she showed 3 or 4 months ago? Why does she refuse to eat? Will we find out she has a syndrome or will she be fine in the end?”
Over two months since her initial diagnosis and so many unanswered questions still. But yet much has happened and we have a lot to be thankful for! Namely, in-home therapy has finally begun and we have a physical therapist and feeding therapist coming to work with Amelia once each week as well as an occupational therapist coming once every other week. So far, the gains have not been dramatic but important none the less…she is gaining strength, able to reach further for toys while in the sitting position, is knocking two objects together while sitting and is able to hold herself up higher than before while lying on her tummy. Our main goals right now are to get her to role over more often as well as to have better strength and coordination.
Unfortunately her weight has been at a standstill for the last month but she has gained two pounds since December…with less congestion and better health, I think she can gain more weight pretty quickly. The congestion causes her to spit often which obviously affects her weight gain…such a frustrating reality.
Along with the regular therapist visits, I take her to the doctor every other week for follow up appointments, other referral appointments come up, etc so life can feel like one big medical land right now but how grateful we are for the help we’ve been able to receive! Who knows where Amelia would be if we had lived 100 years or more ago! What help would we have been able to receive for a baby in her situation if any? Slow starvation would likely have been the cold reality.
Now, one of our biggest decisions yet is coming…we need to decide whether or not to take the advice of our doctor and have a g-tube inserted into Amelia’s stomach so that the ng tube can be taken out. The ng tube is not something that can be used long term. Until last week, my heart was on the fence as to whether Amelia truly needed to be tube fed but after a few days of her being without the tube(she had taken it out and so we decided to delay immediately putting it back), it became evident she simply can not retain a healthy weight simply through nursing and solids. She does not take enough of either to be a substantial caloric intake and she was becoming unusually fussy and lathargic. Lesson learned. I was in denial…it is hard to accept that she needs this intervention right now but she clearly does and so, the g-tube might be the wisest route to take. It can be medically removed at any point and will leave only a small scar so it is by no means a permanent measure. We’re praying and seeking God’s guidance…we need it so greatly!
Rick’s 30th Birthday
Rick turned 30 on February 15th! We celebrated a few days later with a little bash for him and enjoyed time with friends! One of the highlight of the evening for me was getting to tell everyone the story of when Rick exposed the antics of his fourth grade teacher to his parents and school principal. She spent her days shouting at the students and was generally a poor excuse for a teacher so Rick and a few friends took a tape recorder into the class room, recorded the teacher shouting at the students and the teacher was moved to another classroom. I love this story because it encapsulates who my husband was at 9 or 10 years of age and still is at 30: determined, prudent and not given to making judgements with out facts to back up his beliefs. You can’t fool my guy!;)
How thankful we were to everyone for coming and making it such a special night for Rick. And might I say how thankful I was to my dear friend Franci for lending me a hand with the menu, providing delicious bread sticks and a banana cream pie for the occasion! Together with my imperfect looking but thankfully edible red velvet cupcakes and other snacks, we had a yummy spread and it turned out to be a perfect little party!