Tuesday, September 15, 2009

33 Weeks

It has been 20 weeks since we learned of Johanna's Trisomy 18. That's hard to believe. 5 months since our lives changed forever. Our lives have changed in ways that we couldn't imagine. I never wanted to go down this road, but I wasn't given the option. God has a bigger and better plan than I could ever imagine. It's surrendering to His will that is often the hard part.

At first, I was a total mess. I was completely focused on how either having a severely disabled child, or burying my infant, would affect me. And by extension I wondered how this would affect Clayton and his life, and then ultimately all of those around us. Everything was all about me and my family.

Now, I'm still a total mess, but in a different way. When I look back and reflect on the last 5 months, I can see God's hand in everything that has transpired. It's not all been easy, but it's not all been hard either. I don't know why God chose this path for us, but I don't have to know why. I don't need to understand what He's doing. He's doing it. That's really all that matters.

I've grown more accustomed to living in a world of "ifs". My immediate family can testify to the fact, that I don't do well in a world of "ifs". There's black and white, no gray, in everything. I'm learning to see a little more gray. I like a definite plan, planned out weeks in advance. I'm learning to let my plans go, and go with the flow. I like structure and order. I'm learning to accept and thrive in disorder. This is huge for me. I don't handle it well at all. But, God's teaching me.

I'm at a point now where I can't get Johanna off of my mind. I have an obsessive personality anyway, but this is different. I know that theoretically(I love this word by the way) things are winding down. We are coming to the end of this part of our journey. I can't help but wonder what the future holds for us. What will Thanksgiving and Christmas be like so soon after losing a child. How will Chad and I help each other through the hard days that are ahead? In a few years, how will we teach Clayton about his baby sister and the impact of her life? How has/will her life no matter how long or short be a ministry?

No matter what's ahead, I know my God is in control. His ways are higher than mine, and His plans are perfect.

Just some random musings.


Monica said...

Still praying for you as you continue on this journey. Sean and I just clung to each other. I can remember laying in bed the night we lost him and just needing to hold each other. I think we clung to each other for the next several days. The hospital we were at had a group that helped siblings understand and get through. They were very helpful to us. They gave us resources to get our children through it. Garrett still wants to buy things for him and enjoys going to take things to him (at the grave) while my daughter does not like going out there. So just take your cues from Clayton. He will let you know what he needs.

Adrienne said...

I've been following your journey and as the time comes I know it's got to be getting hard. My son was born with Down syndrome (we knew about it when I was 18 weeks) and he just had open heart surgery and I was so afraid of the things that can go wrong with that and I'm still afraid of what the future may hold for him but my sister gave me great advice: "God will give you the strength when you need it". You may not have the strength right now to think about how the holidays may be or how you will handle losing a child but He will give you that strength at the exact time you need it. Every time I've been scared of something, God has always been there to hold my hand and he'll hold yours as well. You and your family are in my prayers!!

Pam said...

Interceeding for you. You are actually sooo very close -literally- I wish I could hold your hand and pray with you. I have been following your blog since you rec'd the news. God is so in control and it is so hard to let go but yet, that is when we can truly see Him at work!!!!! PLease know that I am here in NC (Greenboro) praying for you!!!!!!
Doula Mama Pam

chadandnikki said...

I'm just testing my comments. Back to your regularly scheduled programming

Pam said...

Thank you for being a "follower" on my blog. I would give my eye teeth to be there with you on your little one's B-day. Please know that I will be there in spirit!!!!
Doula Mama Pam

Rebecca said...

I'm astounded at how you've been able to live in the 'in between' phase of knowing about her T18 but not knowing what will happen. For us, it was only 3 weeks! I can't imagine how you get from day to day for 5 months. Amazing. It's a long hard road. I won't lie. But like someone else commented, God will give you what you need for each step. Something to remind myself of too, I guess.


Kelly said...

Praying for you girl! I know God will give you the grace and strength you need for the days ahead!