I just glanced over the blog and realized that I haven't really included much of the emotional side of things. I've given lots of updates and information, but not a lot of reflection.
Something that's been on my mind today, is all the doctoring and opinions that we've been given. It has been a roller coaster of information and therefore emotion, that's for sure. We've had a lot of appointments bring us ups and downs, a lot of bad news that turned out to be just bad advice, and a lot of good news, and some surprising bad news. I've really learned from all of this, that not all doctors that give you information, should be. Neurosurgeons know a ton about Spina Bifida, and physiotherapists, and occupational therapists know a ton also. But perinatologists don't know near as much, and obstetricians know next to nothing. But unfortunately, this doesn't keep them from dispensing information that at the time, you might perceive as truth. I had researched a lot before I met with my OB, and found out that several people in our circle actually have first hand experience with SB, so I knew that with our son's lesion being located low down, that there was a good chance that he'd walk. But when I met with my OB, she told me that he'd never walk, he'd always be in a wheelchair, that he'd have organ dysfunction. These are all things that are true of some people with Spina Bifida, but certainly not all, and I'd hazard to say, not even most. Because I was skeptical of her information, I didn't take it completely to heart, but we were still quite upset by it, since we had been informed differently by the perinatologists. Thankfully though, we had our appointment at the Maternal Fetal Health Centre the next day, and we told them what she had said to us. They were very taken aback and took us into a consult room to sort out fact and fiction. It was very helpful. However, when we met with our son's neurosurgeon the next week, even more pieces of information were dispelled as fiction. Some were very good, like the possibility of our son only needing a heel and ankle cup insert in his shoe to be able to walk. (time will tell, but how wonderful to hear a that a dr. has this hope!). But he also had to give us the bad news that the Mat/Fet Clinic was wrong about him having the moderate form of Spina Bifida. This was a hard day, for a couple reasons. I cried for our son that day. The first time since our diagnosis. I've cried over other things, like how others weren't being supportive of us being at peace with the diagnosis. But that was the first day that I cried for our baby. It was not out of pity or feeling sorry for him. It was out of the finality that came with the neurosurgeon's words. As much as we're ok with our son's diagnosis of SB, we were still praying for the absolute best case scenario. And having been told that our son had the less severe form of SB, just menigocele, then hearing the word "myelo" in front of meningocele, was surprising. This is why, I'll really only take our neurosurgeon's word for anything from this point on. If anyone tries to give me information that's different, I'll just give his office a call and ask if he can offer his opinion. Also, I trust him because he's on our son's side, just like we are. When friends and family are pitying and feeling sorry for our son or for us (and justifying it with "it's sad that he won't be normal and will have trouble"), we're feeling hopeful of what he CAN do, and the wonderful journey that our family is going to take together for him. Dr. Aronyk is with us in that pursuit, even encouraging us to bring our daughter to his PT and OT sessions, and dr. visits. He's my third favorite man on the planet right now. (if you're wondering who's 1 & 2, well of course it's my husband and our little son).
One blessing that came from getting the wrong information though, is that after getting a terrible sounding prognosis, then hearing a better one, it sure makes you grateful for it! We were totally relieved that it might be SB, and were hoping that that's "all" it was! I think our nurse practitioner thought I was crazy when she told me over the phone that the MRI results were in, and that there was a confirmed diagnosis of SB. I actually said "Oh good!" and after she didn't say anything, I said "we were told our baby was missing brain elements, and that he'd die, so to us, SB is soooo doable!". Although she's very nice, I think she still thinks we're a bit nutso. Oh well.
I've been looking over other parent's blogs, and through a SB forum, and have found some wonderful stories, parents and kids, and I just relate to their positivity and joy so much. I actually am starting to believe that God chose us to be this little guy's mommy and daddy, because He knew that we'd love and adore and fight for him without question, without bitterness, without anger, and with complete abandon. Even with me being on 6000 micrograms of folic acid (recommended dose is 400), and therefore SB really not making a whole lot of sense, we're soooo not angry with God. I don't even question God in this. I know that God didn't give our son SB. It's more like this little boy got SB, and God placed him in my tummy for a reason. But God doesn't hand out diseases like some kind of sick puppet master. God is loving, caring, merciful, and sacrificial for His people. But we live in a sinful world, bound for death, but He didn't originally design it that way. Adam and Eve didn't have diseases. They didn't even get colds I bet! It was when sin entered the world, so did death, disease, injustice, deceit, etc. God didn't DO this to our little boy. God's part in this is that He's walking beside our son, beside us, rejoicing with us when we rejoice, sometimes lifting us up, carrying us and hiding us under His protective wing. He's WITH US through this. How could I blame Him, or be angry at Him for that?
I'll leave you with this. It's a post that I read on a forum today, and it brought me to tears. It was in response to a woman who's unborn babe had just be diagnosed with SB, and had been given a death sentence. Like most parents of SB kids, we too were given the option and asked repeatedly if we wanted to terminate our little boy's life. They were even willing to extend the legal time limit for us, as we had already passed it. So quotes like this really get me.
"As for spina bifida, it's not as terrible as most doctors portray it to be, and anyone who says my 2 year old's quality of life is bad has never heard his belly laugh."
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