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!! 

Can't Pour From an Empty Cup

I think all moms can relate in postpartum stories. Taking care of a newborn is a task but women were built for the challenge. I never knew the struggles I would face after having Josh and just how long it would take me to be feeling back to normal. Although every mom may be able to relate, postpartum is unique for every woman. So this is my postpartum struggles and how still after a year of having Josh I am still working on getting healthy and back to myself.

I have always eaten in phases. By that i mean one week I will eat constantly and truly not care what I'm putting in my body. The next week I will be wanting nothing but fruits, salads, and snacking on crackers and peanut butter. These eating phases have never given me any BALANCE! So once I had Josh I lost the phase eating I had done for many years. You may think that is a good thing but in reality I just quit eating all together. I would snack on tangerines or crackers but my stomach shrunk so I hardly ever ate meals. I had lost the baby weight extremely quick and weighed less then ever before. It's truly my fault though. When Josh napped I would either shower or sleep. Usually sleep trumped everything else. Now though I have been working on balance in my diet. I have to give a lot of credit to Christian. He is always asking me what I have eaten or if I have had water. He's really kept me accountable and I think it is why I'm much healthier now, and why I want to be healthier. So I still eat what I want. I never deny myself of any type of food. After all I was born with my father's sweet tooth. But I have begun working on eating more often and making sure I eat meals as well. When Josh has his first feeding of the day I have started having breakfast with him. Working around his schedule was the biggest challenge because it was constantly changing and I would forget to eat. Forget to eat? Yes, you read that correctly. My stomach would be growling yelling at me to eat something and my head would be pounding but I got so good at ignoring my bodies symptoms that I would forget. Being intentional about listening to my what my body was telling me took a lot of work. Now that Josh's schedule is so strict I have had time to work on my own schedule. This made it much easier to listen to my body and do what I needed to do for myself. I would say finding that balance in my diet and getting back to a healthy weight has been my biggest postpartum hurdle. Now that I have started to jump over this hurdle everything else has begun to fall into place.

Finally I am feeling more energized and more myself. Fueling my body with more nutrition and water, I don't feel as sluggish so I'm able to accomplish more through out the day. I am also getting more hours of sleep and when I do get to sleep it's always a deep sleep instead of being restless. When Josh was born I never slept. I was so sleep deprived that I once fainted and I stayed asleep. Josh is slowly learning to comfort himself and fall asleep without any help. He may never perfect this but I have seen major improvements. He will put himself to sleep faster and he will also fall asleep for naps faster. Once Josh is asleep lights are out for me as well! During the day I am not needing to nap as soon as Josh does. There was a time that I would be taking two or three naps throughout the day. Now when Josh sleeps I rest on the couch and read, knit, or watch a t.v show. This has helped me because when I napped I would always wake up feeling groggy and sluggish. Now I am relaxing more and recharging my batteries without needing to sleep all day long.

One other postpartum hurdle I am still trying to overcome is getting active! Before Josh I was always active. I grew up dancing and also go to the gym. Then when I went to college I met the best work out buddy ever. We would go to the gym everyday and make work out plans together. After I had Josh I had to wait the first six weeks until I got the clear from my OB to get active again. Even after waiting six weeks my body was so out of shape that I just couldn't get back into getting active. Honestly, I was in a lot of pain when I tried so I gave up and was scared to try again. Still I have pain when I work out but I know now it's nothing I can't WORK THROUGH!

I miss my work out buddy greatly but I have a new buddy. Josh is the biggest motivation. He is my own personal cheerleader. One night I decided to workout and he giggled at me the whole time. Now, whether it was because he thought I looked ridiculous or because it looked as if mommy was dancing around the living room, I won' t ever know. Any one knows I will do anything to see that boy smile and giggle. So I just kept going and it reminded me how much I love to work-out and take care of my body.  I made up weekly work out plans that's easy to follow and I can do throughout the day while also taking care of Josh. So far it has helped me to write a plan out and when I have free time I look at what I am supposed to accomplish on that specific day.

Last week, when Josh had such a busy week, I fell behind on taking care of myself. I went almost the whole week without water. I didn't eat meals, instead I snacked on what was quick and usually unhealthy. I let me blood sugar drop multiple times which made me really sick. I talked to a couple friends about this. I confided in them hoping to get advice on how to stay on top of all of these things. Most people said something similar to, "Mia, you have to take better care of yourself. If you don't look after yourself you won't take good care of Josh." I can't fully agree nor disagree with them. I did need to take better care of myself, but I still put Josh first and he was well taken care of. I had one friend tell me, "You do need to take care of yourself but you are trying and working on taking better care of yourself while also doing an amazing job with everything going on with Josh." Hearing that gave me the reassurance I needed and motivation to be even better. My family is my top priority, but to do my very best for them I have to invest in myself as well. I hope that if anyone is struggling with this you will talk to others and seek help. There is absolutely no way I could overcome this alone!

New Love for Winnie the Pooh

I have found it really hard to find comfort in things since Josh was born. Let me say it again, Iv found it hard to find comfort in things but not people. Throughout the pregnancy and once Josh was born I have had a wonderful support system. My family, friends that stayed by my side, and my in-laws and Christians extended family. Everyone has surrounded us in love and strength and encouragement. Before having Josh there were different things I could do to ease anxiety, depression, or even take away loneliness. Dance was always my biggest outlet. In college I'd dance in the kitchen, laundry room, empty halls in Moody's tunnels. I also was able to explore and try new things. Before Josh I was always surrounded by people and able to socialize. Once I had a newborn all of these things became impossible. So one of my biggest struggles with motherhood is finding new things that comfort me and make me see the positive side of things again.

When I found out I was pregnant I wanted to start knitting. My mom made my baby blanket and I thought it would be a sweet gesture to do for my own child. So I learned how to knit online and got started. That quickly became something for me to do if I was stressing and something I still like to do. There are many days I feel like there is nothing I can do to for Josh. I look at him and want to help in impossible ways and I feel like I'm failing him. I had a friend tell me that the way I love Josh and care for him is more than enough. So when I feel that way I like to do something for him. Such as make a craft or knit his baby blanket.

I also started coloring in the adult coloring books. I started doing this when my sister and I bought some and went on doodle dates. Lucy and I have always gone on dates. We have certain restaurants we go to or special things we have done for years. Our doodle dates quickly became one of my favorites. Our parents would watch Josh and we would go to a Starbucks and sit with coffee and our coloring books and just relax and color. Every time it cleared my mind and made me feel so uplifted. My in-laws also got me a coloring book filled with bible verses. This book has more intricate designs. So when I sit and color in this it's to mentally get away from troubles Iv been going through. It's a way for me to step back from the negative and find positive all while focusing on the scripture.

One other thing I have found as an outlet is this blog. I have been able to talk to stay at home moms, people who work with disabled children, and friends and family about Josh's journey and how it's affecting me. This is my focus for my blog, but also to be open about what my family is going through, to talk through my feelings about our situation, and so others could feel more open to me.

Still with all these things there has been something missing for me. I think I have lacked healing through this journey we are on. I haven't had a good relationship with God as I'd like to and my heart has been hurt so many times with Josh's diagnosis. I haven't had healing and it's something that tears me down often. Just last night I think I began the process of healing from all my hurt that's built up. My sister text me and said she wanted to show me something. She had a dream and drew part of it out and wanted to show me. She sent me a wonderful drawing that immediately spoke to me and brought me to tears. I looked at it and felt a flood of comfort. It was so overwhelming and I think always will be to me. I look at this picture and I know no matter what Josh will be okay. All I can do is make sure he is loved and happy and fight for his health. I realized not everything is in my hands and I won't be the one to do the impossible. Josh is my son but he is also in the Lords hands and that is the biggest comfort of all. This picture brought me healing, and reminded me our struggle, pain, and fear can't all me in my hands. That we are cared for by a mighty God and He is watching over Josh.

Psalm 55:22 "Cast your burden upon the LORD, and he will sustain you; he will never allow the righteous to be shaken."

So thank you Lucy, because your art and your love has moved me in a way I hadn't been in a very long time. You're work is beautiful and so encouraging to me. Josh has a very special aunt and I have a very special sister and friend. ❤