I feel it's important to talk about our journey to parenthood in order for you to understand the true miracle that Benson is. For years we dealt with infertility, while we were working with a specialist -(one of many)- we were connected with the birth-mom for our oldest. That too is an amazing story. When she was ten months old, the specialist came up with a game plan that worked and we got pregnant. By the time our second daughter was two and half we knew it was time to add to our family. My husband’s job had changed by this point and our health insurance no longer covered an infertility specialist. As we prayed for a miracle for over the next year, and stayed busy with the girls and life we set an appointment for months ahead of time to meet the fertility doctor. A day before the appointment we found out I was pregnant! It was such an exciting time for us.

The pregnancy with Benson went on with the usual aches and pains. There were no major problems so we were surprised when my water broke at 34 weeks. The labor was full of drama - not only was he early, he was transverse. However, he was born without me needing to see the OR. They warned me that he might need to stay in the NICU for six weeks but he's little fighter and came home after 15 days. They mentioned in the NICU that his head was measuring much smaller than normal, but after 3-4 tests were run and came back clear, we didn't think anything of it. That is, until his pediatrician voiced concerns at his two month check up.

After three months and a lot of testing, it was confirmed he had Microcephaly, meaning he has a small head and his brain didn’t develop correctly. The tests didn't stop there and when he was almost two, he was diagnosed with CDG (congenital disorder of glycosylation) which explained the microcephaly. We are still in the middle of finding what type of CDG he falls into. CDG is a very rare disease that effects the proteins in the body.

Regardless of his diagnosis, therapies, and doctor appointments, Benson is super easy to love. He loves to be held and his smile literally melts all my troubles away. His biggest strengths are his happy demeanor, laugh and cuddles. Benson is three now, but he doesn't sit, roll or crawl. We keep him working hard in physical therapy and he's getting stronger and stronger. For instance, he brings his hands to midline all the time now mimicking clapping. Benson always wants to be moving or rocking so he really enjoys his wheelchair.

If I’ve learned anything from having a child with special needs, it’s that asking is key and we don’t have superpowers. Asking is not just for us as a family being his advocates, but for those around us as well. There have been many times when it's clear that someone sees something different with Benson and instead of asking, the conversation ends. We don't need to be uncomfortable asking uncomfortable questions. For me at least, it helps me feel people care. Also, we aren't parents with super powers. We come up short a lot and can't be good at everything at once. We have to prioritize what's most important for the day, heck sometimes for the hour. We don't want pity, just grace. And for others to know that our humans with special needs have beautiful souls and it’s worth getting to know them.

To learn more about Benson, follow @metcalfcrew on Instagram!

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