Writing here has been extremely helpful for me over the years. As much as I pray these words are from God, I have found that the words have been written to minister to me. Being able to record my thoughts, my tears, my joys has allowed me a record of history, and helps me keep walking when I want to stop. A record that allows me to see patterns, figure out myself, embrace Him, and grow through the journey. I am so very thankful that God has given our family such a bizarre tool to use to bring us comfort.
Life goes on here in our home. We are just sitting waiting for an amnio. We plan on doing it the end of June. So, we just live waiting. I'd love to report to you all that we are doing fabulously and that God has allowed us to be an example of praise through suffering. Nope, there are days I feel I'm hanging by a thread, maybe there are days where the thread is pretty much gone and I'm not hanging on at all, but spiraling out of control. Don't get me wrong, it isn't a tear fest around here, we don't mope around sad all the time, but it is difficult to be joyful, to choose that, and it is difficult to do more than survive. Kirk and I both feel that our goal each day is to survive, and that is something we are trying hard to change. With a fatal diagnosis looming over us, with McKenzie's FAS issues flaring up at just the right times, with the reality of her just being too sick too often since leaving isolation, meds, vest, and with therapies, normal life stuff, and hormones added on...it is just too much stuff...life was difficult before Carter's "stuff", now it seems unbearable at times...sometimes survival is easier to pick than joy. There have been a couple days of just wretched crying, begging the Father to show up, beggin Him to allow it to stop. But there have been many days where I have felt Him take my hand.... "and He walks with me, and He talks with me, and He tells me I am His own; And the joy we share as we tarry there, None other has ever known."
Before my last OB appointment, I just prayed for encouragement. I needed hope, I needed something that would make me smile. While waiting for my Dr. to read the latest ultra sound report, he looked over at the book I had brought with me "When God Weeps" and he smiled and said "Obviously you are a Christian. I am a Christian also. Which means we know that God has a very special purpose for this little boy and He does not make mistakes." He went on to explain that he has not and will not ever terminate a baby. He also reassured me that he would meet our wishes with regards to Carter's birth. We have been told that docs won't do a c-section on a Trisomy 18 baby, and Kirk and I just weren't at peace with not "fighting" for any breath our son may have. So, he calmed that fear and let us feel secure with him and gave us hope that He would fight for Carter if needed...fight meaning give us perhaps moments with him alive. I walked away from my OB with such encouragement and almost a giddy step. Nothing had changed regarding Carter's outcome, I just was told that this man who would care for me loved my Lord, and saw my son as somebody with great God given purpose. My heart was on cloud 9.
Laying in my son's bed during chit chat time...Zachary was asking about Carter. We were talking about Heaven and that if Carter went there before us, he'd get to scope it all out and show us everything when we got there. Zachary liked that idea, but was sad that he wouldn't get to see what Carter would have looked like here with us. His face showed me that the thought was extremely sad to him. We were able to discuss that if Carter is born around his due date, then whether he lives or dies, Zachary will be able to meet him and that doctors always make sure the big brother gets to hold him. He asked if he could hold him even if he was dead and I said "Of course". That brought him so much joy, it was a gift to see that. We talked about all the pictures we'd take of him that we could keep too. This conversation would not have happened 8 months ago...it would have looked like a little boy with a bad tummy ache, instead of a little boy asking big questions and finding peace through simple answers...that is God.
Carter is kicking a lot now (well, perhaps I don't know if it's a lot because I've never been pregnant before and have a "special needs" baby growing in me so his kicks may be way different than a healthy babies kicks) and I have had the incredible gift of feeling life. And as much as I want to hold that life forever, I get to hold it for 9 months or for however long I've been given. When his kicks shift my entire stomach, I'm able to chuckle and talk to him. The bizarre thing is whenever he is kicking up a storm, I'll put my hand to my skin where his kicks are and he completely stops....always. At first this frustrated me, but now I imagine him thinking "Oh, there she is, it's okay now" Like I'd found him and am meeting his needs through my touch. I know it is completely lame and makes no sense, but it brings me a smile and allows me to parent him right now...a moment.
I've been nesting, which is incredibly sad when you don't know if you have something to be nesting for. So, I've been frantically cleaning kitchen cupboards and drawers. Last week I just got sad...I wanted to be nesting differently. I wanted to be getting the baby clothes out, planning the nursery, shifting rooms so my kids can share a room to make way for Carter. I remember saying to myself...I just want to finger baby clothes. But it was way too much to fathom pulling Zachary's baby clothes out, I knew I couldn't handle that, and I avoid the baby sections of all stores because I just can't go down that road right now, so I was just sad about it. Well, the next day a friend dropped off a gift at my door holding footed jammies and the book "Guess How Much I Love You." I obviously started crying right away and my first thought was "What was she thinking?" But after a moment I remembered my thoughts the day before, I just wanted to finger baby clothes, and here I was given the gift of that. It is Carter's very first outfit, and I got to hold it. After talking to my friend, she explained to me that she had asked the Lord that morning what she should do with her day...and He told her that. He knew I needed jammies on that day!
Our respite provider (whom we adore!) helped our kids make a sweet surprise blankie for Carter. When Kirk and I got home from out date, they were so excited to show us the sweet fleece blankie they had made for their brother. It was incredibly thoughtful of our respite/therapist to provide a tangible way for our children to "do" something for their brother. What a sweet memory they will get to have forever, and something I didn't need to think of, plan for, and implement...someone else was nudged to carry out that task.
There are so many more little ways He has clearly walked and talked with me. Through books that people have given me, or through passages of the His word that have been emailed at just the right times, through Phillipians and Paul's waiting while suffering in prison, through songs, through tiny glimpses of how this all is glorifying Him, we have been blessed beyond our wildest dreams. Evenso, we fail so often at praising Him in ALL circumstances, and we are quick to lose it. So, if you're looking for specific ways to pray for us...we'd love prayer for us, as parents to enjoy our children, to laugh more, to be patient in disciplining, to be filled with compassion as we train our children, to throw survival away and to thrive with great joy each day, falling in love with our family and each other more each day. That is our prayer this week.