I know that all parents must deal with a certain amount of guilt when it comes to issues with their children, but as a parent of a child with special needs, the guilt can be overwhelming at times. So many times I question the things I’ve done and I find that too many times lately I’m asking “Is there anything I could have done differently?”
When the Disney movie Meet the Robinsons came out years ago, the main theme of the movie was “Keep Moving Forward”. I love this thought and I try to apply it every day. I try not to look back and dwell on what happened in the past as there is no way that I can change those things, but some days the guilt just creeps in.
The guilt finally poured over into tears this past Friday as I was returning home from Phoenix where we had just finished Skylar’s Sleep Study. The study was brutal to say the least. I knew Skylar wasn’t sleeping well, but I had no idea how bad it was until this overnight stay. I’m used to Skylar waking me up a couple of times a night with nightmares and when she gets into bed with us she is so restless. During the sleep study she was restless as usual and awoke multiple times during the night. The different alarms sounded through the night and I slept a little less than 3 hours total. The alarms didn’t wake Skylar up, but unfortuantely her Epilepsy has caused me to be a totally light sleeper and the littlest noise makes my eyes pop open. I’m interested in seeing the official report on the study hopefully by the end of this week. I must say that our sleep tech Stephanie was totally wonderful. She was so patient with Skylar and I’m so thankful for her sweet personality.
In addition to Skylar’s sleep issues, she has always had poor muscle tone and we didn’t really realize how bad those issues were until this year. The Autism and Epilepsy have always brought with them an overwhelming set of issues that have required so much focus, so the muscle issues have been overshadowed until this year. As Skylar has grown, the issues have become even more pronounced. We are now awaiting what we believe will be an additional diagnosis of Cerebral Palsy (CP) for Skylar. Looking back, I feel as I though I missed so many clear signs and for this I feel horrible. I can’t stop thinking about how much time we have lost getting her the additional help she needs.
On the way home from Phoenix Friday afternoon I finally just verbalized to my mom what I’ve been feeling for quite awhile now. “I feel like a failure! I missed so many indicators that things were not right. My failure has led to valuable time lost that she could have been receiving therapy. I didn’t push hard enough to get further testing done with her sleep issues. I just really dropped the ball and I just feel so guilty!”
My mom is one of the few people that I share these types of feelings and struggles with. She cries with me and I know that as my mom and Skylar’s grandmother, she hurts with me. She was there when Skylar was born and she was there when Skylar was diagnosed. She has experienced my greatest joy and my greatest sorrow. I’m so thankful for that. And I’m thankful for the words that she said following my tears. She said:
“Julie, you’ve had a lot to deal with as a mom. You have done a great job. You should not feel guilty for what is in the past. There is no sense in looking back and questioning what you could have done. We know now and we need to move forward from here. We are going to do whatever we can to help Skylar!”
And even though I know feelings of doubt and guilt will creep in from time to time, I know that ultimately I need to:
-Learn from my mistakes.
-Share what I’ve learned with others so that they may learn from them as well.
– “Keep Moving Forward”!
Okay, this blog has officially turned into an episode of “Extreme Home Makeover” for me! You had me in tears! Julie, no matter what the guilt is telling you, ignore it! You have done so much for Skylar! She couldn’t have better parents even if she special ordered them from a catalog. I am glad that you shared this, but trust me, you should never feel guilty! You fight for Skylar everyday and she has improved so much because of that. Keep Moving Forward!
Julie, even though our children have very different health issues (my son was born with congenital heart defects), you expressed beautifully the same feelings I’ve wrestled with over the years. You always want to do more, wish you did more for your precious child. I know I don’t know you personally, but I firmly believe that there is a reason you are Skylar’s mom – because no one else could love her and fight for her like you. You have a wise mom, and I’m glad she was there at just the right time for you.
Julie, I can sit here and tell you what an amazing mom you are to Skylar but unless you believe that yourself, it wouldn’t matter. Over the past few years that I have been blessed to know you, I have thoroughly enjoyed watching you be a wonderful mom and I have learned so much from you. You are one of the most Christ like friends I have in my life. You have a phenomenal relationship with Him. I strongly believe that if He wanted you to see those signs, you would have seen them. He would have communicated that with you through the spirit. He has a beautiful plan for not only Skylar, but also for the stalwart women He has chosen to be her mother. He has guided you through so many doctors, therapies, diets, etc…He will not let you down now. I know the guilt you have. Those who do not have children with special needs cannot even fathom what it is like. The word overwhelming doesn’t even come close to describing it. It is okay to get down, it is OK to question yourself. But in the end, give it to Him and know that he is there walking the path with you. I love you.
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