By Grace I’ll Go On

God won’t give me something I can’t handle. Nope...nope nope nope. I have heard this so many times in the past two years but even more so in the past four months. Let me tell you I’m learning first hand this is NOT true. Let me tell you what’s true, God will not give me something that His GRACE cannot get me through. All I have to do is allow Him to guide me through my trials instead of me trying to keep control. 

With my blog I’ve been able to share of my sons diagnosis, the struggle he has faced, the progressed we have been blessed with. I have been able to share my journey through motherhood, my growth, confusion, and realization that I’m at least 85% winging it. It has been since July since I last updated this blog but I’ll say I’ve been thinking of it often and there have been many times I sit down and begin writing and can’t seem to get it all out. Now I’m truly ready to open up and share what this new chapter in my life has brought me and how I’m learning God’s plan for me than I had ever imagined. 

Back in September I had an appointment with my doctor to talk about different form of birth control because I was not doing well with the pill I was taking. There at the doctor I told her of a very intense lower abdominal pain I’d begun to feel. She had me take a urine test. *sigh* I’ll never forget my heart stopping when she came in the room and told me I was pregnant. She sent me to the ER at that point to get blood work done and an ultrasound to be sure my pain wasn’t from an ectopic pregnancy. I got there and they did all the tests. During the ultrasound I was shaking and honestly was still in so much shock. I was almost sure he would say it was a mistake and I wasn’t even pregnant. On the contrary he gave me even bigger news, I was already 17 weeks along!! Yep...you read that correctly. At that I started balling. I don’t just mean crying, but a whole new level of hysterical crying. All I could think of is the possibility this baby could also have PMD, and I had taken precautions to not get pregnant again. 

So I went home and told Christian the news. Him and I had talked prior to the “what if” I were to ever get pregnant again and we both agreed the best choice for us and our family would to place the baby for adoption. After hearing this news Christian and I had many conversations about what would be best for everyone and decided him and I should separate. I have to say this is one thing I want to update you all on but not get into detail. Frankly there really isn’t much to say about it. I will say I’m grateful for how God has continued to work in our relationship and he will forever be my best friend no matter what we go through together. It’s amazing having a relationship that can’t be broken through the trials life brings us through.

So now Josh and I are home with my parents until we are able to find a nice place for us. I have been going through the adoption process and I can’t tell you how much it’s changed me from who I was even since September when I found out. My limits are yet again being pushed. Physically and mentally! I have been blessed by finding a local couple and family that is so loving and warm hearted. I have not once felt as if they look at my life (which is pretty messy) and judged me for any of it. Which is my biggest insecurity when I’m meeting new people. Its been beautiful learning more about them and their journey, and seeing how us coming together through this baby girl is God’s plan. We have been able to see His hand working through the whole process. I’m comforted knowing Josh and I will have a relationship with this baby girl and with the adoptive family!

So right now I’m 32 weeks. (I think, I hardly know what day it is any more) To be very honest I’m beyond done with being pregnant. It’s so difficult caring for Josh when I’m in pain and feeling sick, and sleeping just doesn’t exist right now! Plus, when a woman is pregnant it can be exciting and they get to prepare for a new baby, instead I’m going through my body changing and dealing with hormones and I am not keeping the baby once she makes her arrival. She’s still a blessing to me and many many others so I wouldn’t take this all away but I’m definitely ready for the pregnancy to be over. I’m a very lucky lady though because my parents took me and Joshy in, and have helped me in so many ways. 

So this is the new chapter I’m navigating my way through. I WILL get through it, by God’s grace. I have been open about my journey of motherhood, and having a special needs son, so I wanted to continue to be open. I know God will use all of this and make me who I am meant to be, and hopefully along the way I can meet people who are going through some things I am now and I can be their support system. For now I ask for prayers and that you don’t hesitate to talk to me about Josh and I’s new chapter. So I hope you enjoyed this update and it can be a reminder, God does not give us something His grace cannot get us through. 

A Gathering of the Most Special

So whether you know me through this blog, social media, or in person you should all know I am a believer in Christ. I'm very open about my beliefs and I love to talk to others that share the same beliefs or different. If you are a believer I want to ask you something, are there places and people you can be around and almost immediately feel the presence of God? He fills the room and you see Him in others around you. I have a few different places where I go and instantly feel God's hand on my heart bringing me peace, and each place is so special for me. I just recently found a new special place and I'd love to share with you all my experience! What's so special about this is it isn't a physical area but a group of people I met.

As many of you know Josh and I just attended his first PMD Conference down in Indianapolis. Before going I was filled with nerves, curiosity, and definitely excitement. We got there and I saw how many PMD families were there and I was overwhelmed with emotions! Slowly meeting the families and their PMD boys I felt comforted by each one. Each family had a unique story to share but yet every one had similarities that tied us all together. PMD, this rare genetic disease that I hate so much and fills me with anger also brought me together with beautiful and loving people that I finally felt understood by. So now I have a love/hate relationship with PMD. It's caused so much pain and hardship on my son and our family, and all the other families, yet it has taught me so much. It's showed me depths of myself I didn't know was there, taught me about loving and how to TRULY love unconditionally, it's taught me anger and pain is okay as long as it doesn't control your thoughts and feelings.

I was asked to describe how I viewed the conference in just a few words and I'm still yet to do that. My heart is so full and my mind has been replaying all of the wonderful new memories I've made that I can't narrow it down to a few words! So instead I'm making a full blog post about it. I guess if I were to take one thing away from our first conference it would be hope. Hope for Josh's future and our story, and all that's to come. I want to tell you some stories and why I left with so much hope. First I'll tell you about a boy named Li. When Josh and I would stroll by Li would yell out "Babyyy" and wheel over to say hello to Josh. Every time we entered a room he wanted to see and play with Josh. He was like that with everybody! He has the purest heart. There was another boy named Logan and he loved to push himself in his chair and chase people around and act like he was a ghost! He also would chase the other boys and play bumper wheelchairs! Logan was always looking for people he could interact with. Then there is J.R!! I can not tell you enough about J.R. He was always making me and everyone around him laugh. We were out at dinner and a man was getting arrested across the street and he pointed and laughed! J.R also goes to Hooters every year and takes pictures with all the women.

I'm telling you these stories because these were the moments I was filled with hope. Every boy, no matter the severity of their disease, was so filled with LIFE!! They all had a great humor, accepting, wanted to interact with new people and were welcoming. I looked at every PMD boy or man there and said I hope Josh is like him when he is older. Josh has such a big and silly personality I never want him to lose it no matter the hardships we may face medically. Meeting these families showed me that we may struggle but as long as we make Josh feel loved, happy, and accepted for who he is, his big personality will bloom just like it did for all the other boys.

I met these families and their children and I knew God was with us all. We were welcomed into a new family and for that I am grateful God brought PMD into our lives.

We Are All ZZZ's

For over a year Josh has fought sleep and won countless nights. Leaving me or Christian up rocking for hours on end. I remember a time when we had a crazy routine for a month that we would have to pace back and forth in his room with him, bounce around, pat his bottom, rub his nose and forehead, and hum! Then after an hour of doing that he would fall asleep and you had to ever so carefully lay him down in his bed just right! After that routine he would maybe sleep a few hours and it was time for his next feeding. I’m yawning just remembering it all!! Finally though, Christian and I have claimed our victory and we finally win the sleeping battle. It has been an extremely rough, and exhausting year and a half (one that I hardly remember because I was a zombie), but it all paid off.

Many PMD boys can be known as night owls. When I learned this I got pretty upset because I’m a girl that likes her sleep. I knew with a newborn it would be rough but eventually I thought we could find a good sleep routine and I could get in a few more hours of sleep. For a while I just accepted I wasn’t ever going to sleep again and I’d find a way to hook up a coffee IV. I started feeling pretty good and recharged if I could get three hours of sleep and maybe a quick nap. I gave in and quit fighting Josh at night and accepted the fact I was in zombie mode most days. But Christian kept pushing and fighting back thinking it may just take Josh a bit longer than most kids to learn a good sleep routine. He also thought it might just take extra work to find the perfect routine for Josh, and he may be more picky than most kids. Although I have been the one actually putting Josh to sleep and doing the routine, it wouldn’t have happened if Christian didn’t believe it could happen. This is one example of how grateful I am to have him as my partner in parenting Josh! It’s definitely team work and many times you have to carry your team along, like he carried me throughout the year and a half that we have been trying to do sleep training with Josh.

There have been many routines in this past years and a half, some that worked and some were absolute duds. One of the early routines that I actually liked was I would feed Josh then rock him in the rocking chair and I would have to stand up out of it really quick but gentle and immediately lay him in bed with the vibration going. Another was similar but I bounced around our room and laid him in bed next to me and he would sleep with me until Christian came home from work in the morning. We had a special cushion for Josh so he couldn’t roll. I really did love sleeping near him, but that routine only lasted a month. But now we have found a great routine that has lasted a bit over a month, which is the longest routine yet! Hopefully this one is more permanent.

I asked a few PMD families what they did for their boys and what their families night routines were like, before we started sleep training with Josh. Most of them told me they had to use some kind of sleep medicine to help their boys sleep, and even then it wasn’t through the night or they couldn’t fall asleep on their own. I was told over and over to remember PMD boys are night owls, and Josh just may never have an easy time getting to sleep. Clearly like I told you, Christian didn’t let that change his mind on trying with Josh and I picked up the same thinking along the way. Now I know some boys struggle with sleeping a lot more than others, but I was really hopeful for Josh. Since we gave it a long hard try, it’s all paid off. Josh now isn’t using medicine to fall asleep and we have a great routine, the best of all of them if you ask me! 

After his last feeding, I take him in the room and turn off the light and we rock and sing a few of our songs. The first one I sing is “Be My Baby”, by the Ronettes but Linda Ronstadt version. Also yes, this song is the whole meaning behind my blog name, because it’s been Josh and I’s song since he was born. Then I sing him our “Goodnight Song”, which I don’t actually know the title to but my dad sang it to me when I was growing up before bed. I am a sucker for tradition. After we sing those two songs I say our night time prayer. That is our routine! By the end of it Josh is usually yawning and looking so tired. I put him in his bed and cover his legs with a blanket and he has a sweet elephant stuffed animal he sleeps with right by his side. I leave the room and not even a peep, and he sleeps through the night!! This momma is soo grateful for how much progress he has had, and I am extremely proud of him. After being told countless times he would always be a night owl and need medicine to sleep because of his condition I feel very accomplished! Christian and I can finally say VICTORY!!!! We have finally won the sleeping fight, and I’m praying it stays this way.

Thank you for reading this long but awesome update on my little buddy Josh!! I am hoping to continue updating this blog regularly again, and I have exciting news! This momma is starting up a Vlog!! So you can see some of the best moments Josh and our little family has had. I will be able to share what we do in therapy, while we play, and some hilarious Josh moments. I can’t wait to start it up and I hope you all will watch! Thanks, talk to you next time. 

I Know You & I Love You

If I could tell Josh one thing right and know that he fully understood it it would be , "I know you and I love you". I tell him I love him atleast 50 times a day, and I'm not exaggerating. Which he always responds by flashing me a huge grin. What I want Josh to understand is I know him. I get him and understand him! He doesn't have to learn how to talk and I know him and we will still be able to communicate back and forth. The beauty I find in Josh is everyone he meets and builds a relationship with, it's a soul connection. If people take the time to KNOW him, it is a relationship unlike any other they may have. I want to give you some examples of how I communicate with Josh.

As I said before I tell him I love him often. I really can't help it! I look at him and tell him, kiss him and tell him, put him to sleep and tell him. Whether it's the first or fiftieth time I've said it he gives me a big grin. I remember one morning he woke up and instead of just jumping into our routine I decided to sit down and rock him for a couple minutes. Well at one point he nuzzled up to me and gave me a really small smile. In that moment I felt that soul connection and I knew if he could talk he would be telling me he loved me, so I said I love you too. My eyes filled with tears as he smiled at me and grabbed my hand. He may not tell me but he shows me what he's feeling often.

Josh is a smart boy and he's learning slowly how to show his feelings. It's definitely not as easy for him as it is for us since we can just say how we are feeling. But that is why I want to tell him I know him. He is understood and I think it's so important for him to know that. I love that since having Josh I have learned how to look deeper. It is really difficult having a child that is so far nonverbal and may always be. But I have already learned how to communicate with him and in learning how to do this it's helped my relationships with other people.

So Josh Carter, I know you and I love you. I love every bit of you and I give thanks to God everyday that He brought you into your father's and my life. When I hear this verse I think of you,

Psalm 37:23 "The Lord directs the steps of the godly. He delights in every detail of their lives."

Josh, there may be some people who don't understand you or even some people that never try, but I know that the people who do will cherish every detail of you. You will touch their hearts and change their lives. Im glad I get to watch that happen! I'm grateful to be your mommy and see your heart and personality blossom. I love you Josh Carter!

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. ❤

Just Another Week

When I woke up this morning to make Josh's milk, clean his feeding tube, and get his medicine I began to wonder what a day is like for a mother of an average one year old. This week will be very busy and exhausting for our family, especially Josh. So as Monday rolled around and I pulled out my planner to look over everything we have this week I started wondering what the mother of an average one year old is planning for her week. Then that curiosity built and I started day dreaming about all the questions I want to ask that mother. It's quite a list! 

How many cups of coffee do you drink in a day? How many naps does you child need to stay happy during the day? Were you able to shower today? Have you eaten yet?  What do you like to do in free time you get? If you were to write out everything you and your child had planned this week what would your planner look like? My last one, how much sleep do you get? 

These are things I truly am curious about. I know I lead a very different life then other mothers. Sometimes I get envious, even sad, but I'm very happy with my life. I am grateful for Josh and everything, EVERYTHING, about him. There are times though, especially like this week ahead of me that I find myself thinking about the mother of a "normal" child. 

Tomorrow Josh and I will be going to Carmel for him to have an EEG done. And EEG is a test used to find problems related to electrical activity of the brain. After that test he has an appointment with his neurologist. We are having this done because last week on Wednesday night Josh had his first seizure. We think it's possible he may have had others but they just weren't as noticeable as this one. I'v been asked if it was scary, for me to watch it happen. During the seizure I wasn't scared, I was just trying to focus on Josh and making sure he was okay and paying attention to what the neurologist said I'd need to watch for if and when he did have a seizure. Afterwards is when I became scared. I started wondering what this meant for Josh. Is his PMD getting worse? How soon could he have another seizure? But then I quit thinking because I had waves of emotions. Feeling completely helpless for my son, sad, and angry. Josh went to sleep and I sat up for a while trying to process how I was feeling that night. I can only describe it as walking through a dense fog and it was weighing me down. I'v been doing better mostly because I know tomorrow we may get more answers. 

Gladly Wednesday the only thing we have scheduled is Josh's weekly physical therapy. Then the rest of the day we will be preparing for Thursday. Thursday we are going up to Chicago for an appointment with his spinal doctor at Shriners hospital. He will be looking at Josh in his back brace and helmet. I'm hoping at this appointment we can also set goals for Josh and what we need to do so we can correct Josh's scoliosis. One thing I'm nervous for at this appointment is for Josh's doctor to be unsure about our next step. When we first saw this doctor he had never heard of PMD. Which Iv come to realize is common for most doctors we see. Because of his lack of knowledge of Josh's condition he has seemed hesitant to begin any treatment. Also in the beginning we had to wait for Josh to gain more weight and develop more before we could start treatment. Since then he has learned more about PMD and how it's been affecting Josh so I'm hoping he is able to make more goals for us. On Thursday we will probably be getting home around 8:30 pm. Josh's feeding schedule requires him to have 6 meals a day, 3 hours apart. The last feeding is at 11pm and he usually falls asleep at 1 sometimes 2 in the morning. 

Friday, Josh and I have to be at Riley Hospital at 8:40 in the morning for an appointment with his Developmental Pediatrician. But he has to eat at 8 in the morning so I usually plan on getting there way earlier than the appointment so I can find a good place to feed him. This appointment is mostly a check up but we may also have him get blood work done. His developmental pediatrician also wants to schedule a second swallow study to see if Josh is improving with swallowing and to check  to see if he still aspirates. I'm hoping we can be home around noon. I also have to plan on taking a lot longer because I have to feed him before the appointment and after. 

Gladly Saturday will be a much better day. A day that I'm looking forward to but will still be a busy day. My mother and her three friends are all coming to my house to help me organize and finish unpacking. Yes, we have lived here for a month but no we aren't fully unpacked. It's really hard to unpack while doing Josh and I's daily routine plus some night Christian works till 3 am and sleeps for a little while longer. So having these four amazing women come to my house and help me is a huge blessing! They are also all hilarious and so sweet so any time with them I know will be great. 

Sunday is my goal. I know I'll get there physically but mentally and emotionally I don't know what state I'll be in. Josh and I have never had such a packed and busy week. So my goal on Sunday is to be able to enjoy a day at home, clean and unpacked, with Josh and Christian. In my pajamas drinking coffee and watching all of my favorite Netflix shows. My goal by the end of this week is to not be defeated and feeling so helpless. My goal is that when I think of the mother with an average one year old I don't envy her or wish I was her. I want to think of her me admire her for her journey through motherhood and look at it equal to my own. My goal is to look back on this week and be able to say I did it and I didn't fall to all the trails it may bring. 

A Warrior for a Son

People say I am strong for what I go through. I wish you’d see me alone at night, when Josh is asleep and Christian is at work. People say they don’t know how I do it, well I honestly don’t know either. Take a moment and think of your children, if you have any. If they were born and had the disabilities Josh has you’d fight for them every day wouldn’t you? Simply because they are still the child that you love today. Josh has disabilities but he is capable of very much. Capable of making hard hearts soft. He is capable of opening eyes and showing a new perspective when people’s eyes had been closed to these difficulties. Josh is capable of laughing, and pushing his toys off the couch, and fake crying so I pick him up. He is capable of love, fear, pain, and strength. He has conquered every obstacle, every trial, and every battle that has come his way SINCE BIRTH. I would like to believe Josh is capable of more than some people are without disabilities. So when you look at me and wonder how I don’t break from everything going on in our life right now, it’s because I have a warrior for a son.

I thought I would have to teach my child about the world when in fact I have to teach the world about my child. All the while Josh is teaching me about the world. For a long time I didn’t want to share Josh with everyone. I didn’t feel comfortable posting photos on social media or updating people on what we were doing. I even asked my parents to wait until I was ready to share him. Now though, I see the world needs Josh. So I encourage you all if you have the chance to get to know Josh or someone else like Josh to not hesitate. Being loved by someone with special needs or disabilities gives you strength. Loving someone with special needs or disabilities gives you courage. 

This is Permanent

I wish I could have known my Grandma Smith better, and had more time with her. She passed when I was in second grade. Stories I hear from my father I think she would have been a great role model for me and someone I'd be very close with. I always love when my dad tells me more about her. The way she described her ways of coping with difficult situations was to put it in a box and store it away. She'd have many different boxes for many hard things, and I'd say I'm the same way. My boxes though, don't stay closed. Some like to come out and open their lids and overflow so I have to look what's inside and clean the mess up. I wish I could speak to her directly about how she kept her boxes organized in her head because recently all of mine have overflowed and I'm struggling to clean up the mess. 

As I've said before we just recently moved into our first house. There has been a lot of stress but slowly we are settling in. It seems as if we have a lot of unpacking to do still. My biggest project this past week was to get all of Josh's clothes organized into his dresser and getting his room to be done unpacking. I had his bags sitting by his dresser all week and every day I'd look at them and say I was putting the clothes away but I never did. Partially because I had little to no motivation but also because every time I looked at them I felt deflated. Finally, I said enough was enough and once I got started it wouldn't take long and I would be done. I really didn't know how emotionally challenging it would be to go through and organize his clothes. The first bags were clothes he can fit into now and all of his socks. Those bags were a piece of cake to just fold and put in the dresser. The last bags were his first newborn outfits. I knew ahead of time I'd be sad to fold them up and put them in bags to give away, I just didn't know it would take me all night. 

I think every parent can agree it's hard watching their baby grow. It's been exciting watching Josh learn and grow into a big personality. Looking at his newborn onsies and pants really showed me just how much time has already flown by. I started thinking of what it was like to have a new born and how things were in the beginning. We have gone through so many different periods already with Josh. 

When he was born and we were trying to figure out what his diagnosis was I consider that our waiting period. If you know me at all you know I am not a patient person. This waiting period really tested me and forced me to give up control and be patient. Then he was diagnosed with Ocular Albinism and this was the blur stage. Doctors told us he could hardly see and his vision may never get better but he would be okay other wise. Would still be able to go to school and learn to crawl and walk and would be a healthy boy. For a short while it seemed like I could vision what our life would be like and I was okay with it. I had even looked into books that I could learn Braille so I could teach him when the time came. Very quickly it became clear something was being overlooked. He still wasn't hitting milestones and was struggling to gain weight and keep his food down. Then the next period is when he was diagnosed with PMD. I haven't found a name for this period. Honestly I wouldn't call it a period in our life with Josh. Simply because this one is permanent and one that isn't just for a short time like the others. This has been harder for me to digest. I look at Josh and see my perfect little boy who has the biggest and purest heart. My own heart has grown since becoming his mother and it's overflowing with love and joy and excitement for this life with my son. But my heart also aches and makes me feel deflated. 

When we got the diagnosis for Josh they couldn't give us definite answers as to how it would affect him directly. They told us he will always have low muscle tones and he may not be able to eat or talk. They told us its possible he could have seizures and respiratory issues. They also told us he could get strong and may not have seizures and his breathing could be fine for many years. Hearing all of this was very frustrating and still is, because I just want them to be able to tell me what it will be like for Josh to live with PMD. Every boy with PMD is different and is affected in many different ways, some severe and some very little. Recently though Josh has been showing more symptoms. He is needing to take medicine for reflux issues so he can tolerate his feedings, and he's needing to take medicine to sleep because he'd be up all night and day which was exhausting for him. Also recently he's had a muscle spasm in one leg but nothing major, which is good. I look at his muscle spasm and worry it'll get worse, like the doctors warned us, and he will have to take medicine for that as well. These are all things the neurologist and other specialists told us could and most likely would happen for Josh. It's one thing being told it'll happen and seeing some of them start.

I have been fearful for things getting worse for Josh and I get frustrated with myself for not making it better for him. There are things I can try to help and correct, such as his scoliosis, but I'm not a healer that can take away my son's disabilities. I have to remind myself many times throughout the day that I believe in a God that can bless my son and give him strength through these trials. During the waiting period I felt very close with God, constantly praying for patience and guidance to the doctors to help us find a diagnosis. During the blurred period and our recent diagnosis I have felt as if I have lost my relationship with God completely. I let my anger, confusion, and pain push me away from Him and I put Him to blame for all of the pain we were going through. Slowly I have been hitting more and more breaking points. Long nights Josh won't sleep that I become exhausted, or days he won't work through therapy and I feel defeated, or feedings he pukes up even when I do everything right for him. After all of those breaking points I felt a tug at my heart to speak to God and many times I didn't listen. Finally God spoke to me in a way I couldn't turn away from Him. So at my breaking points I have found comfort in Him. Instead of blaming Him for the pain I feel, I lay it at His feet and ask for mending and grace. 

Last night many of the boxes that held my fears, anxieties, and pain about my son opened up and overflowed. All because I folded his newborn clothes. There are days that I am truly okay with our life and I look ahead and I am excited to watch Josh grow. Other days my heart is weary and I struggle to look past the mess and chaos. I hit a breaking point and part of me felt crushed, but I'm learning and growing and becoming stronger than I had ever thought was possible.