As a parent of a child with special needs I hear often about how strong I am. I hear about how God chooses the perfect family. I hear about how blessed I am. I see those greeting cards about how I can do anything because I am a mom who has a child with special needs. If this is the case, why do I feel so lost and confused? Why do I feel like I am the weakest person I know?
I don't have any answers. I will not pretend that I am something I am not. I know that right now I feel very lost. I feel in a place of complete confusion. The first couple of months with Lydia I was thrown into a world that was completely foreign to me. My daughter was sick, very sick. I researched and learned so many things that never interested me before. The only reason that I was doing this was because I needed to make a decision for my daughter. I loved her and I wanted to make the best decision possible. The only way that I could do that was to familiarize myself with things that were so unfamiliar. I had to step outside of my comfort zone and make a strong choice.
And now as we continue to deal with medical challenges, and challenges that are not so easy. There are many complexities to Lydia, her anatomy, and how we treat when she gets sick. There are many things that we have to balance. Things many people do not understand because they have not walked this journey. But added to this mix, we are now entering school and I don't know what the best is for her. Sometimes I wonder if the experts know the best for her. Sometimes I feel so confused and overwhelmed by it all. I want to do the very best for her and I am often left wondering what that is. But I push through and I make the strong choice to love her and continue to step further outside of my comfort zone.
I continue to live in a state that is completely foreign. I research, I read, I talk to people and I keep pushing towards that gut mommy feeling. It's a feeling that is hard to stand up against people who have MD at the end of their name or a Master's Degree, but I have found that has made all of the difference. "I am mom and I know her best and I think this is what should be done." That is a hard sentence for me. I have learned, however, that this is a very important piece of making decisions for her.
I live with this child every day. I take care of her every need. I sacrifice things for me, my husband, and my other girls for her. I choose to love her and this is how I know to do it, sacrificing for her. I don't wear a cape of any sort, I am not special and most days I am not strong. I was chosen for this journey but it is still my choice to live it out. It is the stronger choice I make every day to wake up and face the challenges that have been written for my life.
The stronger choice, in my opinion, is to keep fighting, to keep speaking up, to keep pushing for answers, to keep looking for the very best for my daughter. It is a choice, just like love is, that we make every day. There are no special needs super hero powers that are given to special needs families, or at least mine. I don't want someone to think that either.
However, because I make the choice to honor God through what He gave me, I am blessed. I am blessed in many ways. I have learned many lessons that have changed me, that affect who I am and how I handle myself. I am blessed because I get to see life through a different lens and it is a fun ride. I am blessed because I have learned the importance of celebrating every small milestone and embracing each moment. I am blessed because I have made the stronger choice. I am blessed because I have taken the road less traveled. It is true, that if it is worth it, it will be hard!
I am blessed too because my daughter gives me strength and she inspires me. She handles her life with grace and dignity. She loves without boundaries. She smiles through blood draws and she gives her sisters' hugs when they are down. She is more concerned with other people and their feelings, even when she is sick. She sees the souls of people and she has a twinkle in her eye that is contagious. She never complains about the many doctor visits and procedures, she makes the best of very situation. She inspires me for so many reasons and she makes it easy to keep choosing to make the stronger choice.
If I have learned one thing along our journey, it is that medicine is trial and error. When making decisions, you are your child's best advocate. They need your voice. You have an important element in every decision because you know them best. We have found this out with school placement, therapy, her health, and just how to treat her in general. She needs that voice and when I make the stronger choice, she wins.
I am not strong, I am actually very weak. Most days I don't want to get out of bed. Most days I whine and complain about the lot given to me. Most days I don't handle the stress of everything very well. However, most days I am completely inspired by her, most days I am blessed, and most days I just look at her and I feel energized. Making the stronger choice is the best thing I have done. No one said life was going to be easy, perfect, or awesome. But the little extra that Lydia gives to me makes me think I am in heaven.