Getting a groove

Last week after our hectic day at Children's Hospital I drove home and began to feel incredibly overwhelmed. Obviously everything has been a lot lately. But driving home and thinking about doing this regularly. The driving to and from DC (which I hate) and sitting in a hospital for roughly 3 hours while he gets fluid on a regular basis felt unmanageable almost.

Even leaving my job where was I going to fit THAT much extra time in my life. And what about Mack? Will I bring him? Do I find someone to watch him? What happens when he's in school? And then I'm clearly worrying too far in the future so I stop.

My logical brain knows that just like everything else I will make it happen. We will fall into a grove and it will become our new normal. We've done this before. When Conor first started therapy and I thought oh my gosh all those appointments. After his first hospitalization and I went to DC EVERY week for like 2 months. When he aged out of infants and toddlers and now we had to go somewhere for therapy instead of it coming to us. Those all felt overwhelming at the time. But they all became normal. So in the back of my mind I know I've got this. But in the front of my mind I'm freaking out a little bit.

Then I started to think about what do we do for the hours we are sitting there. I could let him play DS he loves video games and that's what he does now. I could bring a laptop and get work done while he vegs out. I could get some quiet time reading. But that could become a lot of video games and I hate him playing them so much. And then I realized we could play board games and card games. Because these days will be planned so we can pack ourselves up appropriately. As I realized this I was kind of excited. One on one day built in. Required. With the kid who is growing up entirely too fast. What cool memories we could build with special time together. Even if it's in a hospital bed hooked up to an IV.

I was reminded today of the Welcome to Holland story floating around on the Internet. I love it. Its something I read and reflect on routinely. Especially when I am struggling with how things are or how they have changed.

In case you don't know what this is:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

And so this morning as I thought about everything again I realized I do love tulips. And maybe once we get our grove I'll appreciate the situation for the time it gives me with my little boy. Even if the setting is not so ideal. Holland is pretty cool after all.....

Time for a change

I knew I wanted to be a therapist when I was 16 years old. While the population I wanted to work has changed over the years that always stayed and I worked for years to get there. When I was in grad school I had a supervisor ask what happens after I get licensed. It was weird I hadn't thought about it then. I had spent my whole life with a plan and worked to get there but I didn't think about what would happen after I achieved my goals.

I spent years working in mental health and going to school to ultimately become a therapist. And I achieved that goal. And I've spent the last 9 years working as a therapist mostly with kids. I have loved my job even though at times it is draining. Over the years I've slowly created the job and schedule I wanted for myself as best I could. All that time I have always really wanted to stay home with my kids. But if I had to leave my kids at home I was at least happy to have a job I enjoyed.

This job is heavy at times though. And being a mom is also heavy at times. Being a mom to a kid with special needs is especially heavy. And while Conor was sick it was getting heavier. And I was finding myself feeling too guilty all the time.

I sat in a doctor's office as she told me I should probably take him to the ER in DC. And as I thought about what to do I worried about taking more time off work because I had already been having to take a lot of time off. I felt guilty about not being able to provide the services my patients needed and I felt guilty that I would even consider that when my child's health was at stake.

And so I spent hours in a hospital only to come home at 2am and go to work the next morning. And I knew I needed things to change. So I started working on a new plan. This year this job that seems heavy at times seemed to get more heavy. And my family life well that got heavier too. So when Baby Z died I knew that things needed to change faster then I planned. So I gave my notice at work.

I am excited and very fortunate to be able to switch to my mother's job working from home so she can retire and I can be flexible with my kids schedule. And I can spend more time with them.

After giving my notice things started to feel more real. I had been excited for this prospect. But I am leaving the career I wanted when I was 16 and the patients I truly enjoy working with. I had always felt like I needed a career that helped others. It seemed the way to have a fulfilling life. And certainly it seemed to be what I learned about how to serve God. This has been a little hard to wrestle with at times. But as my time at my job draws to a close I am excited about finding new ways to help others and use my skills to serve those in need. I'm realizing now that I can still have that purpose I got from my career by other parts of my life.

Quitting my job has been a humbling experience. I am having to say goodbye to all my patients. Some of whom I have worked with for a long time. I sometimes find myself feeling frustrated at work when I am not sure if my work is helping someone. Leaving I am reflecting more on how far my patients have come. And I am hearing from them how much their time with me has helped and that is always a nice thing to hear. Additionally I am leaving colleagues that I have worked for years to earn respect from. And in doing so I have realized that I was able to really earn the respect I worked so hard for. It's sad to go but it has been so nice to see and reflect on the impact this work can have.

I'm in the home stretch and soon I will be saying goodbye to all the people and schools I have been working in. It will be a strange transition but I am so excited for this new chapter in my life. And I can't wait to find new ways to provide service. Even if I don't know what that will look like.  After years of planning so carefully I am going to try and let my heart lead me instead....

Strength

I remember when I was 17 and my cousin died. I remember being there as my grandmother was told her grandson had died. Her reaction always struck me as she lay in bed with tears rolling down her face. I remembering thinking how amazingly strong my grandmother was in that moment. See my grandmother had a daughter die at birth, her youngest son died at 17 and two years later her husband died. Watching her responded so simply to yet another unimaginable loss has always stuck with me. My grandmother was full of faith in God and she seemed in that moment to acknowledge death for the sadness of the loss but she had a calm about her that I can't explain. My grandmother also cared for my own mother who spent nearly a year in the hospital with polio at a time where people were dying from this horrible disease. I've heard stories my whole life of all the appointments and medical procedures my mom went through that my grandmother had to take care of.

Ever since Conor was little I have wanted more then ever to have my grandmother back. In addition to the normal parts of grief and loss I want desperately to have her guidance on so many days. On my hardest days with Conor's health I would give so much to have her to talk to. The loss of this baby has intensified those feelings. I never knew then to ask her how she handled these things. I never knew how amazingly hard those things she dealt with must have been.

People tell me I'm strong a lot. Sometimes this makes me feel like I must have the whole world fooled. As a kid I was so emotional. I don't think anyone would have described me as strong. And some days I used to feel like if people saw me hiding on the floor in my closet crying they would never think I'm strong. But other days I would think "I've totally got this" "I can kick some ass". Sometimes I totally feel like I'm strong.

But this. This loss, it doesn't ever feel like strength. It feels like I'm broken. And at times I want to not feel all this hurt and I want it to not hurt so bad. But then I think somehow that it would be hard if it didn't hurt so much. Like somehow it has to hurt because I loved him. Because my hurt gives value to his life because nobody else will get to know him. But I did.

I don't know how to resolve that desire to not feel so hurt and needing to acknowledge him. I wish more then ever I could sit and talk with my grandmother about how she did it all. But I can't so I'll probably just sit here an join Mack when he has throws a fit about random little things cause man I feel ya buddy!

My husband

Let me tell you about my husband. Nobody is perfect but he is amazing to me. I called him at 5pm the day before we needed to leave at 3:30 in the morning and told him our baby no longer had a heart beat and I needed to meet him to come get the kids from me. Then I called him back like 15 minutes later to tell him our baby has a heartbeat but it is abnormally low and something is wrong but we can go on our trip and that I would meet him at home.

So I took the boys home and we prepared for a trip. Despite all our plans to eat dinner early and go to bed early we didn't get down as early as we wanted. And Mike and I certainly didn't get the good night sleep we wanted. But we were up early and off to the airport. When we got to Disney it was pretty early still. But the more I moved around the more I bled so I decided to take it easy. So I laid down and rested and napped. And Mike took the boys to explore the resort. Even though he had as little sleep as I did.

We got sleep later that night and then we got up and headed out to Magic Kingdom. But we decided to rent a scooter for me to reduce the walking in hopes that would help things with the baby. But part way through the morning I knew I needed to go to the hospital. So I left Mike at Magic Kingdom with two boys (poor Mack had no stroller at not quite 4 because he was riding with me on the scooter so Mike could push Conor in the wheelchair). And so he stayed and took care of the boys by himself at Magic Kingdom all day.

And then I called him from the hospital hours later to tell him our baby had no more heartbeat. And because he's an amazing father he somehow managed through Magic Kingdom with the boys and dinner at the castle with the boys even though he must have been hurting inside. See as much as I lost my baby he lost his baby as well. But he had to somehow manage to not let the kids see because they didn't know. I tried to meet him at Magic Kingdom because all I wanted to do was watch the nighttime show with my boys in that moment. But with crowds and a show coming we couldn't figure out where each other was. And because the whole thing was stressful and my phone battery was dying he tried to help me find him.

And then Mack threw up. And even though I was freaking out he still had to handle that. And so we spent another long night with very little sleep because all the laundry needed to be cleaned and we needed to keep Mack semi quarantined in a hotel room because I can't have everyone else sick. Especially not Conor. And so Mike found laundry at the resort and got all the stuff cleaned. So we got to bed very late. Mack seemed better by morning and so with a very late start we did some time at the park. He reminded me to pack extra clothes in case the bleeding became bad. Mike checked in with me constantly to make sure I was feeling ok that everything was okay (we were waiting for me to miscarry at this point). At dinner  Mack kept asking me "Can I kiss the baby" (we hadn't told them yet) and I tried to put him off but he wouldn't stop. Eventually I couldn't hold it together anymore and ran off to the bathroom to cry leaving Mike once again to keep it together and make things normal for the boys. We told the boys at the hotel that night because it was too hard. We were up late again crying and grieving with the boys.

And then we settled in for bed. But it didn't take long for the pain to start. Mike did his best to get rest  in between making sure I was ok and getting me anything I needed. He was after all going to be clearly in for another day responsible for the boys on limited sleep at this point. After making it through the night I sent him to breakfast with the boys I was going to go seek medical help. And so off he went to manage on his own and keep things normal as possible for the boys. He eventually had to arrange a way to the hospital with the boys later that morning. When we thought I would be getting a D&C. After the mess of that hospital visit we went back to make as normal as possible and scared about what happens next.

That night when I went into labor. He slept as long as he could. After all another sleepless night was coming and nobody to help him with the kids the next day. But when it was time to go he did it all. Packed a bag. Dressed the boys.  Checked on me. Called for a ride. And then sat in a hospital trying to manage two small children woken up in the middle of the night and be supportive for me. It's a lot to juggle even without the emotional component. But he did it all without complaint. He's never even once mentioned it.

When we switched hospitals and he was brought into the room where I was yelling and screaming he was still balancing making sure the boys were supervised while trying to be supportive for me. He was eventually sent to wait while I was taken in. And so back to the waiting room he was sent where he had two small children to care for even though he left me in a state that had him concerned about whether I would be ok.

When I was ok he had to get all the information from the doctors to take care of me (I literally forgot it all). And then I got dressed in new clothes because he was awesome and thoughts to pack that! And  we went home where he unpacked all our luggage that Disney had nicely moved for us. And then took the boys swimming. Because I could only tag along and watch but even though he didn't get to sleep he still had to take care of everybody.

The rest of the trip was Mike taking care of the boys mostly by himself as well as him checking in on me. Was I ok? Doing so much for me so I could take it easy. And constantly checking how I was feeling. Because when the doctor told me to take it easy and to rent a scooter I thought it was because I had been sedated and lost blood. I didn't really connect the dots that I went through labor and then thought I could go do Disney the next day (because I didn't have a baby to prove  to myself that I just gave birth). But he knew and cared for me the whole way.

See all this might be part of his job as husband and father. To take care of his kids when he takes them to Disney. To worry about and care for his wife when she is sick. But we planned this trip to Disney as two adults (a team) taking care of two boys. And instead we got him by himself taking care of all three of us. And most people when they care for a sick wife have a support system in place to balance all the juggling so that in crisis people can rush in an be extra hands. But when your whole support system is hours away all they can do is be emotional support (by the way he was updating my poor mother while I was in the hospital as well) but they aren't there to be extra hands and eyes.

And through it all he's been amazingly supportive since we've been home. Picking up extra slack with the kids. There to hold me when I'm falling apart even if I keep him up late at night crying. And checking in on me regularly throughout the day when he knows I'm struggling. And picking up slack with the kids when he knows I'm having a hard time.

In all of this Mike lost a lot too. But it doesn't stop him from being there 100%. And that's true love. And that's why my two boys are turning out to be wonderful caring little men.

This is hard...

Miscarriages are hard. I've had two before this one. This one is particularly hard. It's hard because I thought I was "safe". It's hard because I knew he was a boy. It's hard because we named him. It's hard because we felt comfortable enough to buy things and prepare for him. It's hard because I had felt him move. It's hard because I was wearing maternity pants before we left on vacation and I came back to put on my regular pants (and not just like yoga pants or leggings but real dress pants). Except it doesn't feel like any accomplishment to be out of maternity pants when you only want to be wearing them still. It's hard because I spent hours in labor with real and hardcore contractions and I yet I have nothing. It's hard because all I want to do is hold a baby right now. (Seriously I won't steal them I just need to hold somebody's newborn baby and maybe cry a lot as I snuggle them and smell their sweet newborn baby smell). 

I was relieved when the doctor told me I didn't need a D&C. Because I had miscarried naturally twice before and while it was hard and it hurt it was very manageable. And because I was 13 hours away from knowing any kind of support system to help us care for our 2 children. And because I wanted this to impact my family vacation as little as possible. After all my boys were about to learn they lost their brother. And Mack's birthday was coming. It seemed unfair that they also lose their much anticipated vacation. And Mack had been so excited to celebrate his birthday at Magic Kingdom for months! So I was relieved. I didn't know that it would be so different from my last ones when the doctor told me I could miscarry naturally and take Tylenol for the pain. I thought that was good news. I thought this would be good. 

Until the next night when the pain came. It was hurting so bad and it was just the beginning. The Tylenol didn't do anything. So I called my on call OB at home to ask if she could call me in something for the pain.  She seemed disturbed that I was sent to miscarry at home (not even home but to a hotel room with no reliable transportation). And then told me she couldn't call in pain medicine because narcotics can't be called in and I was in another state. This made sense but made me more worried. I got through the night and went to urgent care in the morning in hope of getting pain medication to help. I knew that my doctor was nervous but I still didn't understand the danger quite yet. She kept telling me this would be worse then my other miscarriages but I didn't understand how much worse yet. 

At urgent care they saw me despite saying we don't prescribe narcotics. I think sobbing in the waiting area about having a miscarriage made them feel bad for me.  While I was waiting my OB called me because she had been worried about me. I told her I was at urgent care and she said they could call her if they needed anything. The doctor at urgent care was nervous about prescribing me something afraid that sending me home with pain killers to miscarry on my own would be dangerous (it was). So I called my OB and he talked to her. She clearly had told him to convince me to go to the hospital for a D&C, that this wasn't a good idea. So he convinced me and I listened. I finally started to understand that this wasn't a safe decision. 

So I went back to the first hospital. I called Mike to meet me at the hospital as I figured I would go and have the procedure that day and we could get on with our trip even if the boys missed the day we scheduled to swim at the pool. I saw a nurse practitioner at the ER she seemed to agree this was not a good idea. However the OB on call refused to do the D&C. He (this is an assumption and for ease because I don't know) refused to even come see me. I requested that he at least call and talk to my OB. Again he refused and had the nurse practitioner call my OB for him. No matter how hard my OB tried to advocate for me he refused to listen. I even had my OB call the hospital OB since he would not call her. And so the nurse practitioner (NP) came back and said they had talked and agreed I could get pain killers and miscarry at home. If things got bad (the pain or bleeding) I could come back. She also suggested flying home to get the care elsewhere, trying another hospital (but no guarantee on what they would do) or coming back when there was a new OB on call. At this point I'm scared everyone made it sound like this was dangerous so I asked if I would be okay. The NP made it clear the pain and bleeding would get bad. So I called my OB to see what changed. She apologized told me her hands were tied because she has no privileges at this hospital and the OB and hospitalist were refusing so there was nothing she could do. She clearly felt terrible. And so we asked if we should find an immediate flight home and she tells me no as it would be dangerous to be on a flight when this happens. 

I generally have been lucky with doctors. I've always had great doctors I trust and who I feel are looking out for the best interest of me (or my kids). For the first time I felt scared. Here I was facing what felt like complete negligence on the doctor's part and it was putting my life at risk. And there was nothing I could do about it. I was trapped at the mercy of a doctor who clearly didn't care about me. Not to mention the emotional toll that was being put on me during an already emotionally painful time. It was a really scary feeling to have no control over my health.

So back to the hotel I went with a prescription that I know is probably not going to help and a bunch of stuff I'm hoping I can use to help ease the pain. I went to bed early hoping to get some sleep before things got bad. I woke up in pain and I starting trying to do what I could to manage the pain. As I sat in a hotel bathtub having contractions close together trying my best to manage. Mike tried to get all the sleep he could. We both knew it would be a long night and he would have to care for the kids the next day somehow. Eventually it was too much the pain was bad and I decided it was time to go back to the hospital. But not that hospital, earlier in the evening my sister in law helped me learn of a better hospital to go to in the area. We would go there. So Mike calls the front desk explains what is happening and asks them to call a cab to go to the hospital and says I cannot walk to the lobby. We tell them we don't want an ambulance because we don't want to go back to that hospital. And while I sit in pain Mike wakes up the boys and packs them up with extra clothes for me (smart man). I grab a hotel towel to sit on and the resort manage picks us up and drives us to the lobby to meet a taxi. We take a looooong bumpy cab ride to a new hospital in downtown Orlando. The poor boys in the backseat taking it like troopers that we woke them up sometime around 1am. The poor cab driver driving probably half an hour with a woman in the back seat having terrible contractions and wondering if. I'm going to ruin his cab (it's cool dude I'm sitting on a towel!)

We finally get near the hospital and go towards the sign that says Emergency. I go check in while Mike grabs the boys and tell them through painful contractions I'm having a miscarriage. They try and be positive at first before they eventually get the whole story. I tell them I took Percocet but it didn't help. The triage nurse notes that my contractions are too strong that's not going to do anything. I ask for something more but have to wait to see a doctor. They rush me in though. I see a doctor quickly all the nurses and doctor's are dumbfounded about the situation. They don't understand what the other doctor was thinking. They give me morphine in a shot because it takes too long to get an IV in me (I have terrible veins). The morphine helps. But bad news I went to the wrong hospital. They don't have an OB I need to be across the street but they will work on getting me there. 

The doctors and nurses here are amazing! They do everything they can for me. They are sweet and caring and they put the boys in another room so they can lay in a bed and sleep while a nurse can watch them. It takes hours to move hospitals. That's just how these things work. So I'm in labor for hours but the medicine helps take the edge off. And at least now I have doctor's watching me. The attending doctor makes me learn his name and memorize it so that I can make them call him if they don't do the procedure for me. The ambulance finally comes so we can go to the hospital across the street but the pain is getting bad again so they give me a 4th dose of medicine and off I go. They arrange for Mike and the boys to get driven to the new hospital. The morphine never helps and I'm really hurting the whole ride. Luckily its not far. I get to the new hospital and the pain is horrible so after some talking they give me more morphine. But it's not helping. This is where things start getting bad (they were already bad but...). They tell me stuff is stuck and it's causing the pain that the morphine isn't going to help so I ask for medicine for the anxiety at least (I'm starting to freak out). This is where the bleeding starts to get really concerning. They ask me 8 million questions and I sign a bunch of forms saying I'm ok with a blood transfusion. They are ordering blood from the blood bank now. They let Mike come in (some nurse is watching the boys for him). They are measuring the blood to see how much I am losing. And I'm cursing that damn OB who wouldn't do the procedure in a controlled setting without all this mess. Mike keeps telling the doctors in the room I'm not cursing them I mean the doctor at the first hospital. 

All the meds must have caught up with me because I remember going into the elevator to go to the OR but then everything goes black and I wake up in recovery. The doctor is talking to me but I only remember parts of it. Its all over and I'm ok. They didn't need to do a transfusion once they got everything out the bleeding stopped and I was ok. 

Everyone talks about the state of healthcare in this country but I've always been pretty fortunate I've had good doctors and good care. But this was unnecessary. It's cruel to put a mother through this when she's already suffering. I shouldn't have had to spend hours in active labor. There no reason to not do a D&C on an 18 week pregnant mother when she loses the baby. I was offered a D&C when I miscarried at 9 weeks but at 18 it wasn't even an option. It should have been encouraged. When I look at bills from the whole ordeal the amount of wasted resources and money that occurred because the doctor on call didn't want to come in and perform a relatively safe and easy procedure is insane. If I had been given a D&C the first day when there was no heartbeat (which is what should have happened) my cost of care would have been easily 10% of what the cost ended up being. 90% of thousands of dollars is a lot of wasted resources(note I have amazing health insurance and it will cost me very little out of pocket but this is why health insurance is expensive). And because miscarriages are hard enough and losing a baby so late is so incredibly hard there is no reason I should have ever been put in that situation. 

I'm angry at that hospital. I'm so very angry at that doctor. I'm incredibly grateful for my OB from home. She saved my life. I would not have known the risk without her because the hospital never explained it. I'm grateful for the wonderful staff at the hospitals I ended up in and I will tell everyone to always go to downtown Orlando if you need to go to the hospital at Disney. I feel fortunate for the care I got later and for the support I received from family and friends. And I'm incredibly grateful for my husband and boys who somehow managed that scary situation. But I'm hurting and this is harder then I thought it would be. But writing sometimes helps me so maybe I need to get this story out.  

Also never go to Celebration Hospital at Disney....Just sayin....

Turning 4!

It's crazy to think but in a few days this sweet little boy will be 4. 

It has been a crazy journey. Fun and exciting mixed with scary and emotional at times. But I'm so proud and in love with the big kid he's turned into.

It's been one heck of a year. Way back when Conor first saw 8 zillion specialists I was told that in the next year we would have a good idea of how significantly his brain damage would limit him. (This is of course a scary thing to wait for). Conor was almost two at the time. In the year that followed Conor made amazing progress. He grew and learned and met tons of milestones (sometimes these milestones were only ones I counted but they were progress none the less). By the time Conor turned 3 he no longer qualified for services he was doing most things on age level and was doing great. I was nervous about losing services but I felt relief. In the year that had passed I felt good about his future. I felt like we had this under control and there would be little affect.

This past year caught me by surprise. 

We didn't have therapists anymore and this was hard for me. I found a lot of comfort in knowing that when I wasn't sure about a problem we encountered with Conor I could talk with the therapist about it at the next appointment. I didn't have that anymore. 

With Conor growing older we put him in some more activities like sports. And I watched him struggle. He would get frustrated and melt down and first the first time in his little life I watched him really giving up on himself. That's when I realized my feelings of being "past" this were wrong. I realized we will need to be working extra hard with him his whole life. Maybe it was the pregnancy hormones but that was a tough pill to swallow.

But we put him back in therapy and he started to become more confident again (although slowly). And I started to see my happy care free boy return to normal.

Then he became a big brother!

Something he's been wanting for a long time.

And while the transition was rough. He adjusted and has been an amazing big brother.

I realize now that things will never be "normal" and we will have to support Conor as best we can. But I'm excited about this boys future and I'm so blessed to be a part of his life.

Happy Birthday Buddy!

Boots and Bars

As Mack finished up his casting we decided to get his pictures done with his cast. This is part of his life. We want to remember what he's been through. This will help us appreciate it when he can walk. (I think my feelings about him walking may be very different then with Conor).

It was hard to get this picture of Mack smiling. He was a very serious baby in that cast.

So we ditched the cast and moved onto new challenges. Boots and Bars. The doctor had us come back after a week in the brace. In his words "to make sure you haven't thrown these things out the window." To be honest its a good thing he did. 

It seems to make good sense. Why would I not make him wear the brace after going through all the casting? Plus lets be honest this will help him walk pain free one day. Don't moms make sacrifices for their babies? I knew it would be hard but I thought there was no way I wouldn't make him wear those boots.

But I'll admit. I made it 6 hours and then I desperately wanted to take them off. I had to remind myself a million times this will help him walk. That this is what's best for him. That later that evening he will get to be out of those things for an hour.

See the thing is I would never toss them out a window. BUT I could see how easy it would have been to take them off more then necessary to give him a break. I could have easily rationalized in my head..."Oh I'll just take them off for a little while" "Oh I can work him in gradually"...and that rationalization would have easily ended up with improper wear.

So instead when all my other self-encouragement failed I reminded myself we have to go to the doctors in a week and I don't want to get lectured.

And so despite all my desires I left them on. But let me tell you it was hard the first couple days! When your baby is crying out and cannot be comforted and you know exactly what will make him feel better. Its hard to not do what will make him feel better.

Now things are easier and he's happy even in his boots. Much happier then he ever was in his cast.

And for an hour every night we get to play like every other baby.

And he loves it!

The brace has gotten easier. And we've adjusted. There's still surprises every now and then that I wasn't expecting to be difficult but we are dealing. And despite all attempts to soften the blow he still manages to hurt me with that brace. 

As the weather has gotten warmer and as Mack is getting older he's out of his carseat more and people can see his brace. I see people look at him sometimes (as all people do when they have a baby) and inevitably their gazes end at his feet and their expression changes. Its hard sometimes to see this happen. I don't blame them I would probably do the same. Its a natural reaction I think. But it  stings a little. People also come up and ask more now. This doesn't bother me near as much and I just explain. But its not always possible for people to come and ask.

The other day I was driving and my thoughts went to Mack. I was relieved. We are almost a month in now. Which means just over two months. And then every day he will look like every other baby and just wear those things at night. And very possibly will never have to deal with this again. And I am so glad that that's all this is.

Every night though  I look forward to that hour without the boots. And when that hour is over I have to put those boots back on whether he likes it or not...most times its a bit of a fight. And its a little sad knowing I won't get to see those feet again until the following evening.

I recently showed someone Mack's picture and they asked about his foot. I explained it. And the person asked me how this happens with all Conor's stuff too.

Without thinking I responded very automatically with

"God just likes to challenge me"

It seems like a good enough explanation.

I think I'll go with it.