New Normals and a Crazy Awesome God

 Parenting a child with special needs is one of the hardest yet most joyful things I have done. I have loved watching my child overcome milestones and obstacles. It brings me so much joy to watch my child be so proud of himself. The constant need for therapies, the "extras" that have to go with us wherever we go, the uncertainty of what the future holds, and all the times we have heard "we will just have to wait and see"  are some of the hardest parts of this journey.  I asked some of my fellow superhero parents what they wish the world knew about raising a child with special needs and this is what they said:  1. You likely do not realize all the extra things that happen in our day that take up time . There are extra feeding times, equipment to haul around, catheters to change, therapies to do, diapers to change well past the "normal" diaper age, extra dishes, extra food to make, and phone calls and emails to specialists. These are just some of the extra t...

When I chat with most of my friends they tell me they would love to be able to stay home with their kiddos full time instead of working. I have always been the exact opposite. I never wanted to be a stay at home mom; I was kind of forced into it.  When I got pregnant with my first child the plan was for me to go back to work. I was going to take the twelve weeks and stay home then head back to work. Daycare was lined up and we were ready to go. Then when my son was born and there were complications, work no longer became an option for me. Someone needed to work with my kiddo at home, sign up for all the programs, take my son to all of the doctor appointments and therapies. Since I was a social worker and I knew the system, it was the most logical for me to stay home instead of my husband.  I was angry. I was angry that I was forced into a decision I had been adamantly against for so long. I was angry that I did not get to continue my career path or finish grad school. I w...

The other day a friend had asked me if I had ever listened to the Risen Motherhood Podcast. She informed me that she thought I would really enjoy the latest episode. The next day I took B to a therapy session and a women in the waiting room asked "What's wrong with him?" and after I explained some things she said "Well, will he ever walk?" and although I am use to those question they still sting on some level whenever someone asks them. Today I got a chance to listen to that podcast episode. It talked about loving the friend who has a child with special needs. It talked about welcoming that family into the church. It talked about how sometimes neurotypical children make comments and as parents(on both sides of those comments), we freeze or don't know what to say. Some of my favorite takeaways from this episode are: 1. They took a survey of their Instagram followers and 31% of their followers that have children with special needs do not feel supported b...

Hey Kiddo,  When your dad and I first found out you were going to be part of our family; I couldn’t stop myself from dreaming and having goals for you. I was excited to watch you play soccer and be in the band. I was excited for you to love reading just as much as me. I even thought about what your long term future would hold and if you would get married and have your own kids.  The day of your birth was one of the happiest but also the scariest day of my life. We almost lost you. But thanks to an awesome, loving, gracious God and your amazing doctor, you were able to stay here on Earth with us. You survived our nightmare. You were not given very good outcomes in the NICU but that has never stopped you from progressing and flying past the expectations they put on you.  My dreams for you changed, that day in the NICU when they told us you have HIE and likely will develop CP and a list of other diagnoses and to never expect you to lead a “normal” life. Instead of dr...

I stared at the blank page for a while before being able to put these words on a page. This piece was harder for me to write than others have been. There is something about putting words on paper that make it seem more real. There is something about anticipating the response of others that makes me hesitate. And that something? It’s fear. It’s fear of defeat. It’s fear of vulnerability. It’s fear that when I put these words on paper, things cannot or will not change. However, when I really stop to think about it, I do not want things to change. You see, I never wanted to live in a small town. Up until 5.5 years ago, I had lived in big cities. I grew up in Waukesha and then went to school in Eau Claire. Both of those cities are beautiful and have so much to offer. There are shops, bookstores, coffee shops, recreation, coffee shops, bookstores, food options, and did I mention coffee shops and bookstores? All my favorite things were easily accessible. My junior year of college I m...

Dear friend, I see you. I see you running to appointments rather than play dates. I see you working with your child day in and day out; trying to give them the best possible life they can have. I see you stressed out. I see you wondering what your child will be like in a year or 5 or 20. I see you wondering how you are going to afford everything. I see you worrying. I see you. I understand. I understand what it's like to look at your child and feel anxious, fear, and stress. I understand what it's like to look at your child and have so many questions. I understand what's it like to live a life you never fully planned on living. I understand what's it like to have new realities come at you on a daily basis. I know what it's like to have to say no to things you really want to do because your child can't come along and you can't find a sitter you trust. I know what it's like to be exhausted from the day just thinking about everything you need to with yo...

I have no idea how to begin this posted. I can't tell you how many times I started this post and then deleted it because it just did not seem right. This post isn't what I intended it to be but it's everything I needed it to be. It's been a year. It's been a shitty year. It's been a joyful year. It's been an overwhelming year. It's been a year full of learning and new experiences. It was not how I expected our first year to go, but I wouldn't trade this year for anything. I've said it before and I will say it at least a thousand more times; we have an amazing community. Our community is what helped make this year what it was. They sat with us, cried with us, listened to me wallow, and loved us through it all. But my favorite part about this amazing community we have is how they love to celebrate Bren with us, every "little" thing was as big to them as it was to us. About a week before my son's birthday, I sent this text to my ...

The number one question I get asked (Okay, maybe it's the number two question) is, "how can I help?" For a variety of reasons, that is the hardest question for me to answer on the spot. One of those reasons, is because I hate asking for help and accepting help. Another reason is because I am generally so overwhelmed with other thoughts and schedules and all other life things roaming around in my head that I don't have the capacity to think about how you can help on the spot. So here is a list of things that I have thought of that could be helpful. And really many of these things can be helpful for any mom with young kiddos. 1. Meals. If you have time in you schedule and room in your budget to bring a meal of two that would be incredibly helpful. After a busy day of appointments cooking is the last thing on my mind. I am generally too exhausted to cook let alone think of the food we have in the house. 2. Prayer. Please don't pray that our child will get better....

I recently read a blog post where a woman wrote a letter addressed to herself before her daughter was diagnosed with CP. I learned a lot from that letter and you can read it here. One of the things that really stuck out to me was when she said "Her progress doesn’t solely rely on you; she will go at her own pace. Follow her lead and be strong for her". I cannot tell you how many times a day I see Bren's lack of progress as a failure on my part. Because here's the thing; I am with him almost 24/7. I am taking him to this therapy and that therapy, this doctor's appointment and that one. It's easy for others to tell me that it's not my fault and Bren will do what he can when he can and it's so true. He will and just because he doesn't do something we have been working all day on, does not mean that I failed. I love letters. I love getting things that are thought out and filled with so much love. Words of affirmation are my thing. I love to give th...

When I really sit down to think about Bren's life(which I don't do often), I realize how bittersweet it is. There are plenty, and I mean plenty, of bitter moments. Numerous doctor/therapy appointments each week. Multiple trips to Madison each month for a variety of specialty appointments. The annoyance(and probably some pain) of EEGs. The never ending "well, we just have to wait and see" answers. The never ending "I don't know why that happens" answers. The list goes on and on. But with every bitter moment I try to find a sweet moment. The most common thing I think of is the fact that we have the means to attend the multiple doctors, therapies, and specialties that are going to give Bren the best life possible. Another sweet thing is that Bren smiles through it all. It never fails that Bren will brighten up any room with a smile. The third thing I commonly think of is the fact that we love the people we need to go see. The clinic we take him to is wond...

When you work with others for 40+ hours a week, you see a lot of different things. You see how the family cycle plays out. You see how mental health impacts a person but also their family. You see how outside influences can really help or hurt someone. And when I was working, it was not uncommon for me to take those experiences and use them to evaluate my own life. It also became "easy" to recognize signs of different mental health diagnoses and when a psychologist validated my suspicion, I always did a little fist pump. When Bren was born, I knew right away how highly susceptible I was to Postpartum Depression and PTSD. When I would recognize signs in myself, I would quickly ignore them. But really, I knew they existed. Bren was born in October and it took me till January to acknowledge that those things were there and to seek help. I believe it took me that time frame because I thought I knew what I needed to do in order to move past them. I mean, I had worked with people...

A friend texted me the other day and said, "I hear you and I see you". Those words meant more to me than most other words have. Hearing that someone hears and sees me was an overwhelming sense of peace washing over me. I don't need people to hear and see us in a "look at us and everything we do" kind of way. I don't need people to hear and see us in a "Oh, you poor things" kind of way. I so desperately want someone to come along side us and say, "This is hard. And it sucks. And it's exhausting. It's not what you expected and it's totally okay to feel whatever you feel". I want, no, I need people to come along side us and say, "I hear you and I see you". As I think back to that text, I cannot help but think of how God orchestrated that so perfectly. I so desperately want a human, someone psychical, to come along side me and say those things but God says them to me everyday. The fact that I felt an overwhelming se...

I feel like every mom could write a post about being exhausted. Never enough sleep, constant worrying, always on alert, etc. Being a mom of a kiddo with special needs, seems to have a whole new layer of exhaustion. I am by no means discrediting the exhaustion of every parent. Being a parent is flat out exhausting. But because the only lens of being a parent I have is being the parent of a special needs kiddo, that's what I have to go on. In a "normal" week, Bren has at least two appointments. He either has speech and a weight check or speech and PT. Sometimes, all three of those line up on the same week. Thankfully those are just in a neighboring town and we don't have to drive the hour to Madison. Some weeks you have to throw Madison appointments on to those already standing appointments. Some weeks we have to throw an extra appointment on if Bren becomes sick. Some weeks he has his WCC. Those are just the appointments for Bren. That doesn't include any of my o...

Since the time Bren had his MRI we knew there was a high likelihood that Bren would be diagnosed with Cerebral Palsy at some point. Bren had been doing so well and defying all other odds that we were beginning to think he would defy that one too. Then I started noticing things that weren't quite "normal". Now, Bren is our first child but I had done enough babysitting and working with children that I knew something was off. Bren started having arm movements that seemed involuntary. His arms were becoming tighter and he fought me a lot more when I tried to move them. His head control started to decline a bit. It was at that point I knew, Bren wasn't going to defy the odds of having a CP diagnosis. March 13, 2018. This was the day that Bren's physical therapist gave us the unofficial diagnosis of Cerebral Palsy. Even though we knew it was coming, it was still hard to hear. We weren't shocked. We were hurt and angry. Specifically, I was mad at God. Why had God a...

Since Bren has been born we have always had doctors or specialists telling us what we can and cannot do with Bren. We've been told how much he needs to eat and how he needs to eat. We've been told what activities and therapies to do with him. We've been told that he has to be on certain medications. It's never felt like we have had a choice in any of this. We didn't have a choice in whether or not our child was born with special needs. We haven't had a choice in any of his treatments. We haven't been given the freedom to let Bren show us what he can do. We so desperately want what's best for Bren. We trust that the doctors and specialists know what they are doing far better than what we know. But, there are days that I wish we could: -Let Bren tell us when he is hungry rather than feeding him on such a strict schedule. -Let Bren tell us how much he wants to eat. -Let Bren be a kid and not have to worry about different therapies and doing them throu...

EEG. That acronym is one that I never want to hear again but will likely have to hear it a few more times throughout Bren's life.  EEG = Electroencephalography. Or I as like to call it, the thing that makes my child cry uncontrollably. When conducting an EEG, they have to put leads on your head. These leads require glue, lots of glue. They also require pressurized air. Bren HATES the sound of the pressurized air and he screams and screams while they put them on. Then when it comes times to take them off, he screams from them pulling his skin and what little hair he has on his head.  The EEG measures brain activity. Bren's would tell us if he was having seizures. I think that was the scariest thing. Finding out that my son was having seizures was scary and hard to deal with. I had no idea how to handle seizures. I knew there was medications but that as about it. I had no idea how to physically tell if my son was seizing. So in a way, the EEG was helpful, but I wish my son w...

Bren had quite the big month at 3 months old. He learned how to roll over. He started eating almost everything orally. Bren learned that he had a voice and that when he used it, he got attention. He learned to smile and laugh and by golly they are the best. He showed us that he was going to develop as normally as possible for a 3 month old. At three months old, Bren was experiencing reflux and abnormal brain activity. His abnormal brain activity essentially meant that he was predisposed to seizures. One week towards the end of month three and the beginning of month four, Bren was experiencing silent choking episodes. What I mean when I say that is, he was visibly trying to get something out but was not coughing at all. One night he passed out after one of these episodes. He wasn't breathing for about 30-45 seconds and I couldn't wake him up. It was scary. Gut wrenching scary. I was home by myself and didn't know if I should take him to the ER or not because he seemed to b...

I mentioned in a earlier post about the support we have received throughout this adventure. We've said it a million times and we will continue to say it, it takes a village to raise a family. And by golly, we have the best village there is. To our family- Thank you. You've been there for every phone call, every text, and every picture. You consistently check in on Bren(and us) to make sure things are going the best they can. Even though we mention how overwhelming your support can be, we really appreciate it. To our friends(who have basically turned into family)- Thank you doesn't feel like enough, primarily because it is not. You've made us meals, helped pay for medical bills, bought us gas, and coffee(lots and lots of coffee). You visit. You check in on us. You help care for Bren. You've learned the uniqueness of Bren and how to feed him. You've endured many rant sessions about medical decisions. You've sat with us through the tears and listened to our...

Most of Bren's first month was spent in the NICU. There was not a lot that was focused on during his first month. We got use to being at home with a newborn. We had appointments right away with his primary care provider, and by right away I mean the second day we were home. He had weekly weight checks but that was about as much doctor interaction we had, which was nice. We had lots of visitors, it was like Bren was a celebrity. Month 2 hit and that's when we realized the craziness that was going to be our lives. Bren started speech therapy. Which I thought was crazy, how on earth do you do speech therapy with an infant?! The amount of times I have been asked that question, only validates that I was not alone in my questioning. So let me tell you what you do in speech therapy with infant. The ST watches him eat. While she does that she is checking his swallow, his suck, and his lungs. The first few appointments, Bren was not able to eat from a bottle and so we did taste tria...

I’ve been meditating over Romans 5:3-5 over the last few months. Even in the midst of problems and trials God is so very faithful. Drew and I have seen God show up in big ways the last few weeks. And I would love to share with you how we have seen Him, so please ask if you are curious. Now, that doesn’t mean we haven’t felt anger, hurt, confusion and a mix of other emotions, but we have always been able to come back to these verses and know that good will come out of the hard stuff. We know how dearly God loves us. We know God will do big things with Bren’s life, even if it’s not what we expected.