I had the privilege of chatting on the phone this morning with a friend of mine; another mom of a child with special needs and she said something that I have thought many times…..”being the mom of a child with special needs is so lonely.” Oh, how that resonated with me. I feel so lonely most of the time. I have made some wonderful friends in this “special needs community” and I am so thankful for all of them. But, we are a small community and the world around us doesn’t share our same journey. There is a very small percentage of us who walk this special needs journey and because of that, it can be a very lonely path. Even those of us who have a child with special needs have different “needs” that some know nothing about. Some have “typically developed” children and a child with special needs which poses issues and challenges I don’t even understand. Some of us have very medically fragile children and some have really health children. Some kids are higher functioning while others are not. Some of our kids will go on to live independently while others will never leave their parents home. So, even in the “special needs community” we aren’t all on the same journey; making it a very lonely road for so many of us.
I have said many times that I wake up every morning and grieve. I know that sounds strange, but it is a true statement. I grieve the things Hannah is missing out on. I grieve the things I am missing out on. I grieve the loss of health for her and the loss of friends and fellowship for both of us. I grieve the Down Syndrome, Autism and PANDAS diagnosis’ and I grieve another day of being prisoners trapped in our home. Now, don’t get me wrong……I NEVER GRIEVE HANNAH AND THE CHOICE TO GIVE HER LIFE. Let me be clear on that, but I do spend about 10 minutes every morning while I am still in bed grieving and preparing myself for the unknown 12 hours ahead of me. I grieve the loneliness. I rarely talk to anyone, unless I comment on a FB post and they respond…ha! I have one friend who I talk to almost daily but that is it. Most of my friends work or have such hectic, busy lives running their kids here and there and everywhere that just chatting on the phone is a rare treat for them as well.
My routine is even lonely. It is the same thing every day as Hannah has to be on a strict schedule and routine just so she can function. I have been criticized harshly for her routine but until anyone walks in my shoes they just don’t know. I have learned a valuable lesson to just not care about the criticism from others. My life and the way I raise Hannah is unlike most others with children. Again, making it a very lonely road.
I spend most days ALONE…..yes, Hannah is always with me, but mentally and emotionally I am very much alone. Any conversation with Hannah revolves around what she wants for breakfast, lunch, dinner and snacks (and even those answers are ALWAYS the same). She has MANY repetitive phrases I hear over and over and over again (to the point my ears hurt from the same phrases and the tone of her voice….she has only one voice and it is LOUD, not to mention her octave is extremely high and painful to the ears). As I type this my ears are ringing.
I don’t know why God has allowed this to be our journey. I cannot wait to ask Him that either….HA! I do know that I have learned a lot about myself, my strengths and weaknesses, my character and my work ethic in the last 11-1/2 years. God has revealed Himself to me in ways I never would have known had I not walked this journey and I am sure I have a lot more to learn. I have learned to be happy with ME. That was always something I struggled with…..really low self-esteem until just a few years ago. I needed to please people, be a doormat, never say no and I cared way too much about what others thought about me. So, for those lessons learned, I am grateful. Am I ready for a “break?” Yep! Will that break come? I am not sure, but I know that no matter what, no matter how lonely it gets and no matter what the future holds I know I can continue persevering. If I have learned nothing else I have learned that He carries me when I cannot take another step, He consoles me when I am sad or afraid, He comforts me in my despair and He is my friend when I am lonely.
For those of you walking a similar journey, know for certain you aren’t alone…..I promise you that!
Until next time………..