Done with Special Needs

There are days I want to be done with special needs! When the feedings are long with his pump and he is fussy I just want to say, "I'm done!".  When he is having a day of screaming when he can't see me and fussing even while I hold him, all I want is for him to tell me what he needs. When that doesn't happen I want to say "I'm done!". When I feel like a hermit because he's been having meltdowns at home so I am nervous to get in public, I want to say "I'm done!" Some days I am done with special needs. There are 5 things I like to do in these times.

1. Meditate! This is something I can do that takes me away from all the multitasking I have to do all day long. Meditating relaxes me physically but also tidies my mind. I'm able to find peace in a chaotic or worn out day. I'v practiced meditation since early high school. While I meditate now I'm unable to fully clear my mind like I used to. I still feel as if it helps me especially when I am feeling stretched too thin.

2. Find something funny! Whether it be a comedian, an episode of Ellen Degeneres, a funny article, or an old funny picture of Josh, finding something that makes me laugh can quickly make me bounce back from feeling like I can't handle the rough days. I love to laugh and I love making other laugh! So doing this makes my mood and day better instantly.

3. I have a cup of coffee! I truly truly love coffee. I remember the first time I had coffee was at church camp. I'd woken up at 5:30 and gone on a run around the camp and I came back to the smell of fresh coffee. I had a small cup and ever since then Iv been hooked! So if I'm having a rough day I have a cup of coffee and think back to all the great cups of coffees Iv had. The first ones at church camp, and cups of coffee before school with my parents, my friend Claire and I would show up to first period with coffees for each other. Then in college I went on so many coffee runs with my friend Taylor. Many days I would meet Christian after work with coffee and we would go on a walk around Chicago. Now early in the morning having my first cup of coffee while Josh has his first feeding and we watch cartoons. So when I'm feeling low or done, I have a cup of coffee and my heart feels lightened. (I really am obsessed, can't you see?)

4. I give Josh kisses! When he was a newborn I remember many nights that I was alone with him and he would just scream no matter what I did to try and help him. I quickly had meltdowns myself. We would both end up crying until finally Josh would realize something was wrong with his mama and he would stop and stare at me concerned. Now if he is having a day full of meltdowns I don't break down with him. I give him kisses. I don't know if you've ever kissed a sweet baby but if you have I'm sure you know how comforting it is. Not just to them but you us as well. So I kiss his cheeks, his palms and fingers, I kiss his feet and little toes. This calms me and also grabs his attention. Even if I grab his attention sometimes he continues to cry, but usually this makes the meltdown much shorter and it makes both of us not lose our minds.

5. I look back! Many times people tell me not to look in the past but to be in the present. But I look back to see God's faithfulness. I think back to all the other times I said I was done and wanted to give up, every time God was faithful to me. I think, "When did God show up?" I have to remember what He has done for me before to keep me moving forward. God has given me so many people to encourage me. In the times when I turn away from Him, He reaches me through my loved ones. Reflecting on his past faithfulness gives me courage for today and having hope for our future. So even if I say I'm done He carries me the rest of the way!

On these days I try to imagine God holding me and carrying me. I can see Him moving me forward until I can walk again on my own. Even then He leads me. My son has special needs but he is so much more than that. When I say I am done with special needs, I am not done with Josh. I will never give up on him. I just want to see him bloom and grow into the wonderful fun kid I know he is. I'm done with things holding him back and making life hard on him. All the while he is fighting harder than anyone else and it reminds me there is a purpose for his condition. There is something to be learned in watching Josh live and seeing how God has blessed us with a gift.


John 9:1-3

"As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.""

Thank you for reading this post! I hope you'll take the time to follow my blog and like this post:) I also want to take the time to mention February 28th is Rare Disease Awareness Day! Please be praying for all families that have a family member with a rare disease. Also spread the awareness that day, whether it be about Pelizaues Merzbacher Disease (PMD) or another disease that close to your heart. I ❤ someone rare!!