Monday, August 1, 2016

When having spina bifida sucks

Here and there, someone finds their way to my blog after reaching out for help after the diagnosis of spina bifida via ultrasound.  I try to keep it real here and not portray some super idealistic (which would be unrealistic) life but that doesn't mean I write about every little detail, especially all of the struggles.  When Rich and I were told that one of our triplets had a "birth defect" I didn't really know what to expect.  That was followed with the words "spina bifida."  At the time, we knew very little about SB but after hearing a quick description we both said, "It could be worse.  It's going to be fine."  And in fact, it could be a lot more difficult.  We were also in a much different world after having lived through Abbey's death.  I realize we've been extremely lucky with Anna's mobility and shunt.  Well, was it luck or the talent of her surgeon?  I don't know but there are days were I think, This could be really bad.  We could be dealing with X or Y, which, my goodness, there are some parents out there living with the unimaginable right now.  Count your blessings.

Anna's been going through a bit of a rough patch, which means we are all going through a bit of a rough patch.  It doesn't feel right to list everything out but what we've seen over the years is a control issue.  Think about it.  There is so much of her life that is out of her control, especially the basic function of going to the bathroom, so she attempts to make up for it in different ways.  We try to be patient.  We let little things slide.  But there are moments when Anna and I are both reduced to tears and I tell her that yes, I know it sucks but this is what we have to deal with right now.  We need to make it work.  

This kid is so amazing.  Her laugh, her true laugh, is infectious.  She has a way with little kids, easily befriending them.  She can be so incredibly sweet, standing at the side of my bed in the morning, waking me with, "Hi, honey."  She's a tough kid but I want to break down when I see her struggle.  God, this isn't easy.  (But we'll get there.  We have to.)


Tracey's Life said...

I think that is why I have enjoyed reading your blog so much Sarah. It is real. Let's face it, parenting isn't easy in the first place. Then you factor in Triplets, and then throw in some Spina Bifida, and just the sheer exhaustion of running a home while you worked full time. Exhausting. Life isn't always easy. We all have something we are dealing with. When I used to read a couple of blogs that sounded like everything was all peaches and cream, and oh so easy it would make me feel bad. Because my life wasn't always easy and it had challenges and exhaustion and I felt like a failure. But when other Moms put out the real deal challenges of life, it is a breath of fresh air.

I respect your need to maintain some of Anna's privacy and struggles in dealing with Spina Bifida. She will appreciate that as she gets older. There are just some things that don't belong on the Internet. You are doing great - kudos and hugs to you.

Sarah said...

Thank you, Tracey. I appreciate your thoughts.

BreezieGirl said...

I have to agree with everything Tracey's Life said - I love that your blog keeps it real. Much love to you all as you navigate this rough patch.

DaddyBites said...

My heart goes out to Anna. Her situation is unique because she has two identical sisters who don't have to deal with the same issues she does. She experiences the other side every day of her life.