New Normals and a Crazy Awesome God

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...