Our story

If you would have asked me before having the twins if I would have ever considered putting my private thoughts into a public forum I would have laughed and probably cringed all at the same time. I began this blog initially to keep our out of town family up to date with what would quickly become our complicated pregnancy. After the boys were born I continued it with the same purpose. When the boys were in the NICU it was easier to provide the highlights in one space that any of our friends and family could access. It also became an outlet for me just to share my feelings. 

When we learned Alex had Spina Bifida, we heard nothing but negative information from the "experts". I went in search for something hopeful and was blessed to find several amazing sites, with links to personal blogs. Finding REAL people on the same journey as us at a time when we felt so alone was a Godsend. I would be honored if our own story could do that for someone else.  

OUR STORY:

Hubby and I had dreamed of creating a family for a long time. It took far longer than we would have ever guessed and in the end we needed some help. We were THRILLED to finally learn we were expecting. Since we had needed fertility medicine, we had an ultrasound early on. I didn't really consider what they were looking for, just happy to see for myself that it was really true. a baby. our baby, not just a dream. I almost fell off the table when they said TWO heartbeats. Two babies. I guess somewhere inside my head I knew it was a possibility, but I never dreamed of two. We were completely over the moon. Here we are about three months along.

Looking back at pregnancy week 18:

So we have felt "lucky" to have had multiple ultrasounds to see our little guys. The babies were sharing a placenta which made the pregnancy a bit more complicated. Still Mark and I relished these visits, it gave us a very unique chance to watch our babies develop and grow from week to week. Not many people get this and It was incredible.


Week 18 was a well anticipated one, we were so anxious to find out the gender of our babies and to start planning things in our minds, and our home. 

So the "big" ultrasound proved to be a "big" understatement. We had no idea how much that day would change our lives and literally pull the ground out from under us for a bit. We learned that one of our babies definitely looked like a boy (and assumed the other one obviously was as well since they were sharing a placenta and thought to be identical) but they were spending way more time on the ultrasound than usual. You know when you start thinking "is everything ok?" and you get that "oh no" in your gut before you really know something is wrong, you just feel it? and then you try to say you're just being paranoid....but unfortunately we weren't. They discovered that day our "baby B" had Spina Bifida. We had NO idea what that even was. I couldn't even think straight. All I could think of was there was something wrong with our sweet baby.

The doctor came in the room and went on to explain that this meant an area on the baby's spine did not form fully, which should happen very early, by the 28th day of pregnancy. For our baby, he says the spine was open at the top of the lumbar vertebrae, at L1, and most likely meant that he will be paralyzed from at least the waist down and would require surgery as soon as he was born. He went on to give us a lot of "possible" scenarios, all of them extremely negative and telling us our child would have a poor quality of life and at the same time telling us the damage to his spine was already done, and there was nothing that could be done to improve his outcome. (they are doing experimental surgery in the womb currently for cases like this in several cities but we are not candidates since we are having twins.) He explained our "options" for termination several times but it was never an option for us. These little babies were ours and we would do whatever we could for them. Both of them!

Needless to say we left that appointment in a state of shock, and overwhelming grief took hold of us for awhile. We had no other information other than one of our children was going to be severely disabled and over and over offered the option of terminating. How bad was this going to be if the doctor kept telling us our options? We went back and forth between feeling angry, scared, devastated. We needed the time to mourn for our sons losses, the challenges that would lay before him and wondered if we would find the strength to become the special parents that this child deserved. 

Selfishly, I was really angry with God. How could He do this to our child, to us after everything we'd already went through to even have a family. I felt like we were being punished for something and I had no idea for what. I have a strong faith so with this anger, I then felt terribly guilt for questioning why God had done this. It was a terrible roller coaster ride of emotions I couldn't get away from. The rest of the pregnancy I would alternate between feeling incredibly blessed by the lives growing inside of me with absolute fear for what the future held. I've since learned this is all very normal.

During this time, I devoted every spare minute to researching more about Spina Bifida, I have since learned MANY expectant parents get the same information regarding Spina Bifida, and it is very outdated information. Yes our children would have some extra medical concerns and challenges but by and large, they can live a very full and active life, certainly NOT at all the picture that is painted. 

I was so fortunate shortly after hearing our sons diagnosis to have found several incredibly supportive sites of people who had already taken this journey, or like me were just beginning. There I was blessed with both a wealth of information AND support and I credit these sites and people (in addition to our amazing friends and family) to helping me get through a very difficult time. Sites like babycenter.com--(search for spina bifida kids), and spinabifidaconnection.com, and numerous links from there to personal blogs.

I have to also say during this time, I have done a lot of soul searching and praying and do have a strong faith. I believe that everything happens for a reason, even if we can't possibly understand it at the time. And this is certainly not any type of lesson I wanted Mark and I or my son to have to learn but that is out of our hands. God doesn't make mistakes. I have to trust in Him. 


I also believe that in the midst of our uncertainty, God has put special people in our lives. I have "met" and learned a great deal from reading others personal stories/blogs. I could turn to them any time day or night when I was struggling and it helped me to feel less alone. They still do! I am blessed to have talked to many of these parents on line, we have exchanged information and support.  I have seen their childrens pictures, fallen in love with their smiles and am inspired by their determination. I feel so lucky to be able to follow their accomplishments and cheer them on as if they were in my own family. It feels like they are and I love that. 

It is in part why I felt compelled to continue documenting our own journey. Maybe it will be a sort of a lifeline for someone, the way others were for me. Its also helpful just to have an outlet, a "purpose" of some sort while trying to raise these incredible boys. Lastly, I was unable to find many stories that included twins and I worried about how I would manage the needs of two babies at the same time, with one likely needing hospitalizations, numerous appointments, etc. I hope that as I stumble down this road, just maybe I will learn some things that I can pass on to others who are behind me.