February 26, 2011
Thursday was a a highly emotional day for me. I don’t know about the rest of you, but when I am dealing with many emotions that I want to run from, it comes out as anger (and lots of chocolate eating). I received a sweet text from a friend in the afternoon and tried to respond appropriately, not with all the anger that my poor family had been dealing with. That night, we watched a bit of TV with my head hurting so badly. When I awakened the next morning after being up much of the night due to major storms in the area, I begged God to please give me a better day–to wrap His loving arms around me and show me how to get over myself and love the people around
me. The God of the universe whispered, “My dear child, didn’t I do that yesterday? Yet, you chose not to see and hear. I sent you your husband to simply keep loving you despite your unloveable-ness. I allowed you time to
spend in the ladies’ Bible study that you have missed so much. I gave you your four precious ones to hug you and need you and want you throughout the day. I gave you time with your earthly father who only wants to see a smile on your face. And, I sent a friend out of the blue to send you a text message from Me–a message of hope and a message of encouragement, no matter My will.” And, I had to stop and realize that I had missed the gentle whispers, so the storm had to get my attention. He didn’t condemn me for missing it the day before; He
simply wrapped His comforting voice around me and reminded me that each day is new and full of hope. That I could make a different choice for Friday–to watch for the love, for the hugs, for the encouragement, for the blessings that surround me.
MEDICAL UPDATE
February 23, 2011
Here is an image that Jim found that helps describe Jedidiah’s heart condition. He has a double outlet right ventricle with a hypoplastic (small) left ventricle. The doctors have warned us that he will be some shade of blue, probably within a few minutes of birth as the ductus arterious closes off. This is not likely the condition that will end his life, though. With trisomy 13, babies’ brains simply get to a point where they do not send the message to take a breath. When that happens, the heart will simply slow down until it stops. Babies with full trisomy 13 are the ones where this usually happens much sooner; whereas, babies with partial and mosiac trisomy 13 have a tendency to survive longer.
February 23, 2011
Thanks to so many of you who gave me encouraging words yesterday! With the posting of all these journal entries onto this website, I felt very exposed to the world. I realize that many folks have blogged for years, but I have not, and to begin by sharing this journey has been quite intimidating. Please note that I will not get it all right, theologically or intellectually, but I will be honest and open. If you have questions or insight, please email me or talk with me. I want this journey to be one that glorifies the LORD, not myself.
Mercy Me’s song “This Life” has come to mean so much to me these last 11 weeks. I have cried and I have danced while it plays. Here are the words…
“This is not my home. This is not my space. Simply not
my style. This is not my place. Can’t get comfortable. Can’t get settled in.
I simply don’t belong. Can’t get used to this. But I’m here right now. I can
hear You say “Make the most of me.” This won’t go to waste. If I’m out of my
mind yeah. It’s all for Christ. If I’m making sense then get in line. Every
moment is a chance to let your light break through. This life, this life was
meant to shine. This life, this life was meant to shine. I don’t have to
stall. I don’t have to wait. Don’t have to bide my time. Till I make my
escape. ‘Cause heaven’s in my heart. I won’t settle for less. I will lift
Your name by the life I live. Every moment is a chance to let your light break
through. This life, this life was meant to shine. This life, this life was
meant to shine. It’s in my heart. It’s in my soul. I’ll live every day just
to make You known. This life, this life was meant to shine. Hold your heads up
high. This is our moment to rise. We were meant to shine. Not just
survive.”
February 21, 2011
This past weekend was hard. As you may know, we lost a little one due to a tubal pregnancy on February 19th of last year. While I am faithful to the LORD and His ways, I must admit that my heart has ached due to our loss and facing the truth about Jedidiah’s future. I am hard on myself, thinking that others have been able to move on so much better than I, that maybe I am not as strong in the LORD as I should be–blah, blah blah! The LORD is faithful; He is strong; He will never leave me or forsake me, and I am reminded of that in tiny ways each time I go down the “Blah, blah” trail. I still sometimes start onto it. And, yes, I do understand that grieving and sadness are not weaknesses but a part of life and totally acceptable in His sight. However, I find that I can’t play the “poor little me” game, even all by myself. He has sent His people (and those who I pray one day will be His) to be His hands and His heart–loving me, holding me, and surrounding me with their presence so that I can get through the dark times.
February 19
Frustrations…
the older I get, the less I like roller coasters. I enjoyed them as a child (after I puked the first time), but I never understood the need of so many people for the constant adrenalin rush. Emotionally, however, I have NEVER enjoyed roller coasters. I know people who live life going from (or creating) one drama after the next, interjecting with major highs. I prefer a much more even trip. However, you will see from day to day, even moment to moment, I journey from extreme anger to joy at feeling little man move to disappointment that I am not a better mom through my pain to overwhelming sadness to straight-pan matter-of-factness to… well, you name it.
February 18
An assistant at my doctor’s office means well, but I really think she doesn’t have a clue. Just this past Monday as she read our birth plan for Jedidiah, her one question was specifically about our choice not to have him subjected to the eye ointment, shots, etc. that well-meaning (albeit sometimes misguided) medical professionals have come up with as routine for every and all babies. “So, you are not going to give him the {medical term for the vaccinations}?” “Umm, no.” What I wanted to say was, “Excuse me, my son is going to die, and you are concerned whether he will receive a vaccine shot?!”
February 17
Some people want to touch my belly—a lot. Some people barely want to acknowledge that I am pregnant. I get
it. They have to get their minds and hearts around what is happening, but I gotta wonder… how do I politely tell
someone that they are overwhelming me with their constant touch when with others, I want to grab their hand and keep it on my abdomen until they feel one his big kicks and can’t ignore him anymore? I guess it is the roller coaster thing again.
February 17
Not sure if I should be posting my random thoughts. I thought about just posting the warm, fuzzy ones. The ones when I am best focused on the Lord and all the many blessings—yes, Jedidiah is included in those. Yet, that isn’t my reality. My reality isn’t warm and fuzzy. I don’t always stay focused on the Lord the way I have seen so many others do through hard times. So, I hope you will not judge my difficult moments, but instead, will pray with me and for me to get me through to the other side of the questions, pain, and frustrations. The Lord is faithful even when I am not, and I am awed by His goodness and mercy when I am so very aware of how much I do not deserve them.
February 15
I have a neighbor who just lost her husband after a long, painful illness. I want to reach out and I want to comfort and just listen, yet I find that I sometimes can’t face her for fear of knowing what I have to face. Other times, I find such comfort in speaking with someone who knows grief and hasn’t come out yet on the other side to give me all the platitudes. Of course, I am thankful (most times) for those who continue to say God’s Truth despite my hurt.
All over the place!
MEDICAL UPDATE:
February 14
My abdomen should measure close to 28 cm at this time, but little Jedi is only causing it to measure at 23 cm. I guess I could look at the bright side… labor and delivery should be easier, right? Never having had a large baby, I really wouldn’t know.
February 14—fb post
remembering my little one from a year ago and writing Jedidah’s birth plan… it’s gonna be a difficult week. *sigh*
February 13—fb post
I am sitting under the lights feeling sweet Jedidiah move around. “I will sing of the lovingkindness of the LORD
forever.” May you have a blessed and glorious day!
February ??
Funeral Planning
I think the lady from church must think I am nuts. I realize that many people have no warning whatsoever that they are about to say their earthly
goodbyes to a loved one, and the funeral can be planned in the matter of hours. However, I cannot see that in my grief I will want to do that. So, I took the advice of the Vandy team packet information and began the process of planning Jedidiah’s funeral. Thankfully, the packet of information was very detailed and forced me to look at some things that I had not even considered. Music, where in the church to hold the service, DVD of his pictures, whether we will even have his body or ashes, what I should wear or the children should wear, who and how many will actually come (I don’t want to choose a place in the church where we will have room for 200 and have 50, nor do I want to assume 30 if we end up with 100—how exactly does one go about figuring out that number???).
February 7—fb post
“Life is not measured by the number of breaths we take, but by the moments that take our breath away.”
MEDICAL UPDATE
February 2
His cerebellum is measuring 2.1 when it should be 2.6. It is five weeks behind in growth. Of course, with all
the other malformations, I don’t know if that is a good or bad thing.
February 2—fb post
WOW! Vanderbilt is amazing. The team is supportive and open to our desires and birth plan. What a blessing!
February 2—fb post
4 appointments back to back at Vanderbilt Children’s Hospital. Pray we get our questions answered.
We are Jedidiah. 