Different

Brrr, December! Although it’s cold, it’s finally starting to feel like winter, and this year we got to enjoy a white Christmas- perfect! Last year, Christmas was the “thing I had to get through” before Meghan was born. What a joy it was this year, to be able to celebrate with both of my sweet girls in my arms. Meghan has really enjoyed playing with all her new toys. We were also overwhelmingly blessed by people- some which we have never even met- with notes, and gifts and cards for Meghan, and Addie, some who have been praying for us and with us since the beginning. We are so thankful for the love you have shown our family!

Our December was interesting. The week after we got home from Philadelphia, we attempted a pituitary stimulation test at the request of the endocrinologist. I won’t go into great detail, but suffice it to say that I called off the test when it was clear that it was causing her undue pain and suffering. Unfortunately, there wasn’t a great plan for how they were going to accomplish the test. There has to be a better way to get it done, and when they figure out what that is, we will revisit the idea of completing it. As a medical professional, I can understand needing to gather necessary data to determine the best course of treatment, but as a MOM, I have to protect this little girl from as much as I can. There will be so much in her future that I will not be able to shield her from- physical pain from additional tests and surgeries, and quite possibly emotional pain from situations beyond my control- but that’s on the worry shelf for later. One day at a time. For now, I am doing what I think is right for Meghan. The test can wait. Rounding out the month we also had a follow up with the ophthalmologist. We are continuing to patch her for 30 minutes a day, and it seems to be helping, so we’re following up in a few weeks. I love uneventful appointmentsJ

With Meghan around, there were some new holiday traditions this year. One of which was a Christmas Eve visit to the Orthotist to pick up her SPIO vest (what says holiday like an appointment?!...Joe and I laughed at that one. It sort of defines our new realityJ) It’s pretty nifty, and it’s PINK! We have resumed PT and OT, and right now our big thing is working on sitting, with the help of the vest. She still requires support to hold her head, but with the vest I can almost totally have her balance her trunk on her own. Kids usually work on sitting by putting their arms out for support. Meg won’t bear any weight on her arms yet, so we help her practice until she’s tired. She has her own way of letting us know she’s had enoughJ We’re also in the process of getting her a seat positioner. Between sleeping, napping, and playing, she spends a lot of time on her back. She’s outgrown the bouncy seats, and it will help her to be in a better supported position to begin to relate to her world as upright as possible, while still being able to support her neck. The funny thing about getting this chair is that it bothered me a little. It struck me that this is not something you normally buy…this is specifically for special needs children.  I have known for quite some time that I have a special needs child, but when you get down to the stark reality of it, the idea that things are different….and confront the reality that there might be a part of you that is uncomfortable with being different….well that just makes you think! When I look at Meghan, I see my daughter. I see this sweet, snuggly, charming little girl. I don’t see special needs. I know that she is different, but the only thing that bothers me about that difference is that things will be more difficult for her than for a typical child. I don’t want others to look at her with the discomfort of difference, but rather I long for them to see her through my eyes, and for that matter, to see every special needs child through the eyes of a parent, the eyes of love, and the eyes of Christ, who created each and every one of these lives as precious, sacred, and beautiful. The same eyes that look at each and every one of us declaring that we too are “fearfully and wonderfully made”. I am grateful for Meghan’s abilities, AND her challenges. It’s what makes her, her. There might be some people who won’t understand that in the future, and I think that is what I am afraid of more than anything. When they recognize her difference, will I be able to defend her? Will she be able to defend herself? Will I do the right thing as her mother when faced with someone who might not understand? When I was pregnant, the poem “Welcome to Holland” helped me start to wrap my brain around being Meghan’s mom (see my very first post if you haven’t read it).  There has been some “talk” in the special needs community about whether or not Holland is the right way to describe where we live as special needs parents. My conclusion?  I have no idea where we live, or where we might end up in the future. All I know is that wherever Meghan is, is home.

I am different. I am different now, not because I am a special needs mom, but because I am forgiven. And that, is the only difference that matters.  

“Therefore, if any man is in Christ, he is a new creature: old things have passed away; behold, all things have become new.” 2 Corinthians 5:17