An online friend of mine asked how we’re doing and as I typed my answer I decided to share some of it here because it touches on the emotions and growth we’re seeing in our family through this situation. We've learned a lot in a short amount of time and are trying to process it all, but so much of Mason's diagnosis involves "wait and see" for just what will be affected and to what degree.
It has been a wonderful experience for our family because our children are seeing that prayer can be specific, not just the general "little kid" prayers of thank you for this day, etc. It is humbling to hear my 3 year old pray 'that baby Mason will have time to grow in mommy's tummy' or my 10 year old to ask God's wisdom to guide the doctors who will take care of Mason.
It's also been a great reminder of what matters most. So many times before during a pregnancy I've said "I don't care what the baby is, just so long as it's healthy." Admit it, you’ve said it too, haven’t you? Now that we're faced with a baby who is not healthy I see just how limited my view was. We're thrilled to have Mason and it doesn't matter that he'll be bringing health issues out of the womb. His life is precious, healthy, sick, or otherwise.
I've also had several miscarriages before and while I thought I had treasured each moment of pregnancy, now I appreciate more each little nudge and movement, something I took for granted before. There is a difference in how much movement I'm feeling because Mason's legs are not fully functional, so even the little flutters are something to celebrate and pause what I'm doing to just enjoy.
God has been preparing us for this for a long time. I knew months and months ago, before I was pregnant, that something difficult was coming. We've been pushed to simplify, to pull back from activities like the Homeschool Crew and my job working for The Old Schoolhouse, so many things. And for so long I didn't know why. Then I got pregnant and thought I understood - life was going to be busy with a new baby when the 6th baby was just turning 1. Now I see even more is coming with Mason’s medical needs.
We understand so little! We have such a limited perspective, don't we? I'm sure there is so much I don't understand yet, so much I don't even see coming. I'm trying to focus on relationships and let God take care of the rest. It’s a daily, sometimes hourly process. It’s messy. But God is there giving us peace every step of the way.
Going to share your blog w/ a friend who just recently had a little guy w/ spina bifida. They have been blessed-he started out needing to be cath'ed every 4 hours, then every 8 or 12, and now he no longer needs it :)
ReplyDeleteThank you for sharing. It's just what I needed to hear.
ReplyDeleteI wanted to share a link with you because I don't know if you and your husband have considered this or not, but it's definitely something to look into. Basically they are finding out that doing surgery in the womb is greatly increasing the likelihood of a life lived with less complications (more kids end up walking without braces, less shunts need to be put in, etc.)! Not to mention there is no surgery after birth and they heal more completely. It's so wonderful and yet somewhat new so if you don't have a doctor willing to do the surgery you might have to shop around for someone who will. (Or get a second opinion from someone who has done the surgery before to be sure it wouldn't be beneficial if your doctor says it isn't. I'll let you read the article and see what you think for yourself. Good luck in whatever you decide and I wish the best to your whole, sweet family!
ReplyDeletehttp://www.cnn.com/2011/HEALTH/02/09/surgery.spina.bifada/index.html
Lee
Lee,
ReplyDeleteThanks, we were given information about fetal surgery as well. After prayer and research we decided that fetal surgery was not right for us. There were several reasons for our decision, including the fact that our son's lesion is large and higher than 'average', so he is not likely to see much benefit with the early surgery.
Other reasons included:
- nearly guaranteed preterm delivery, likely very preterm, which brings a whole host of other medical issues with it
- needing to move mommy, 6 children, and someone to be a caregiver to another state (Pennsylvania) for months, while leaving daddy behind for months to work so we could survive financially. Once a mother has fetal surgery she must have a caregiver with her all the time, she must stay near that hospital due until birth (weeks or months later), and we have 6 chidlren would would have to accompany me as daddy would be at work. We could not really afford that.
Anyway, after prayer we chose not to pursue fetal surgery, but others sometimes DO choose it, and if that works well for them that is great.
One of my most powerful motherhood moments came in the mother's lounge at church when I was pregnant with my 5th or 6th girl and some women were wishing me a boy. I was trying to defend my delight in having so many girls when another mother stepped in on my behalf. Her first child nearly died of a brain tumor and the surgeries have left her blind and physically disabled in many other ways. Her fourth child was born with problems with his eyes that have been quite a challenge. Her words echoed your sentiment, "We don't care what it is or if it is healthy, as long as it is a child." We all fell silent as her words pierced our hearts. I feel peaceful whenever I think of that concept.
ReplyDeleteI am thankful to read your peaceful and faith-full words. I hope you feel free to write about your fears as well as your faith. Seeing the process is so strengthening to the rest of us--regardless of what our personal challenges are.
OH Anaise, that's beautiful!
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