Jesus Loves Peter. This I know.

It has been a hard 10 days as Peter’s mom.

It has been a hard 3.5 years as Peter’s mom. It has been almost exactly 3 years since we learned that the symptoms we were seeing in Peter were the result of a congenital abnormality in his brain. Over time we adjusted and Peter is just Peter. He is more work than a typical child. But he is just as wonderful and perfect and loving as any little guy.

But sometimes it just gets hard for a season. Not necessarily because of Peter but because of the world he lives in. One that administrators seem to rule. A world where he gets the short end of the stick and he didn’t even do anything wrong.

So, it is hard to be his mom because I see the injustice and the hurt and the hard on my boy.

In the last 10 days there have been insurance problems leading to his therapy being cancelled indefinitely. There have been school problems where his heart and spirit were ignored, even by generally well-meaning adults. I have cried so many tears. I have made so many phone calls. I have fought so hard for him. Some I can fix and some I am still trying. I don’t really ever stop trying!

BUT, through it all I have to remember something.

That God loves Peter even more than I do. That God knows what Peter needs even more than I do. That God sees where this is all going and I just don’t.

The night we first got his diagnosis was one of the scariest of my life. I can recall those emotions in a heartbeat. I cried as I rocked him to sleep that night. And then through my tears I tried to sing his normal nighttime songs: You Are My Sunshine and Jesus Loves You. I barely got through the first one. He will ALWAYS be my sunshine. Nothing that the doctors say can change that. Then I sang “Jesus loves Peter, this I know” and I couldn’t keep singing. Because it was true. He does love Peter. Not Peter with a perfect “normal” brain, He loves Peter with a “not quite formed” brain. He loves Peter more than I do. I clung to that fact in that moment.

I have held that fact close for these years of Peter’s life. God knows what therapy Peter needs. God will help us find a way to pay for it. God will help guide the teachers at school. God has held Peter and God will not stop now. To believe anything less is to let the Devil win.

I still have a lot of phone calls and emails and forms. There is some work on the ground that has to be done. But I will continue to pray and ask for what Peter needs. I don’t know what his future holds (as much as I would like some answers even in the short term) but I know who holds his future. And the one that hold his future is the Jesus who loves him. This is I know.

A night alone

Over the course of the last year or two as I have learned what self care means on a regular basis and to me personally, I have been trying to take a night away from home every month (or maybe two). My husband does an amazing job of keeping everyone happy at home so I can step away, pause, and renew my mind for my role as wife, mother, and operations manager of our family!

(These nights do always feature a favorite take out dinner)

Sometimes it is about sleep (okay, it is always a little bit about sleep) and reading or watching a movie and just stepping out of my daily roles.

But more often it is about a moment to pause and reflect on what has been happening in my rapid fire lifestyle. It is a time to look ahead to what is coming. What season are we in? What is the next season? What needs to be prepared for next?

There are nights like this one where I know that we are entering a busy few weeks. That this

is our last weekend home before we are out of town for three weekends in a row. Tonight is about having the time to put on some quiet music of my own choosing (and not negotiating with a six year old DJ) and putting some thought into what we need to pack. To take a moment to figure out some logistics. Have time to hear my own thoughts about what a trip to the beach for 10 days looks like (do you even understand the packing this involves?).

It doesn't have to be a movie night on the couch to be self care. It can be a night of balancing the check book, finishing a few projects, and planning for the next few weeks that restores my soul and fills my cup. These might actually be my favorite evenings away alone. The ones where I am still actively playing out my roles but just in a calmer environment that speaks to my soul.

I will finish up soon. I will head to bed for that sleep I mentioned. Then I will get up tomorrow and be so excited to see all my people. The ones for whom I am happy to do this work, this planning, this preparation. The ones who will bring the noisy back in to my day. The sweet faces I get to travel with for the next few weeks and I will be in a much better place to take them all on.

Two years later

Two years ago today I got a call that didn’t change the course of my life, but it did explain more about the course I was on. It shed light on something that was already happening. That phone call was a defining moment, it will be forever in my mind, but even if I had never answered the phone, the answer would have been the same.

A few days earlier my six month old son had an MRI of his brain. It was a scary procedure because it had to be done under full sedation. I held him as he fell asleep. The nurse warned me he would look like he had died. That was exactly how he looked. I cried when I was alone again. But the procedure, we were told, was to rule out a neurological reason for his nystagmus (or rapid eye movement). I wasn’t super worried. We already knew he needed glasses. I thought the glasses would fix all the problems.

Then as I was driving home on June 21^st, 2016, I got a call from our pediatrician. I don’t remember the rest of my drive home. I probably shouldn’t have been driving. She told me that the MRI had, in fact, confirmed a neurological reason for his nystagmus. She said she already had a call in to the Children’s Hospital Neurodevelopmental department for a consultation. She said words I couldn’t spell that day, but now I can spell in my sleep. Peter has a condition known as Optic Nerve Hypoplasia. That was the moment I learned my son had a birth defect. His brain didn’t form correctly in utero. You don’t forget the call when someone tells you your baby’s brain wasn’t formed right.

I went home and tried to tell my husband about it, but I didn’t even know all the words and I certainly didn’t know what it all meant. I cried some more. I cried putting my baby to bed. I cried trying to tell our pastor about it the next day. I didn’t want to tell many people. I didn’t know what to say. I barely understood it myself. I wanted it to go away.

Then I picked up my baby the next day and started to sing like I often did when he cried (and this poor baby who couldn’t see cried a LOT). “Jesus loves you, this I know, for the Bible tells me so…”. And I cried again. This was new information to me. It was not new information to God. He knit Peter together. He knew about Peter from the beginning of time. He loves my son more than I can imagine. I felt the love of Jesus wrapping us both in his arms.

I was already a really good mama bear because of Isaac, so I got right on figuring out who we needed to talk to for understanding more about Peter’s brain. We had to meet with a few specialists over the next few months. Early Intervention because a huge part of our lives. We were assigned a teacher for the visually impaired who has become a big part of our lives. I started asking for help. I started gratefully accepting any help that was given. A village would be needed to raise Peter.

There were many nights I still cried over Peter. I couldn’t fix his brain. I could only help him become his best self. I could be the best mama bear advocate I could be. I could be his best cheerleader. I could remind myself and him that “Jesus loves you, this I know, for the Bible tells me so…”

And then two years went by. The sting of the phone call past. The path was more illuminated by that call, but still pretty scary. I still don’t want him to have this. I want his brain whole. But I love who he is and how far he has come. He hadn’t met any two month old milestones at six months. He has met most of his two year old milestones. He attends preschool. He uses his mobility cane like a little boss. He loves his sister and brothers so big. He comforts me when I still cry over him.

I am so proud of Peter. He doesn’t know his brain is different. He just does his life and he does it well. He can teach us all lessons about love and life and perseverance.

Today I think about that call, but I also think about the little boy Peter is becoming and I smile, even if through the tears.

My Happy Shoes

These are my Happy Shoes.

I got these shoes for Christmas...as in I saw them in the store and thought they were so perfect that I bought them and had Mark give them to me for Christmas.

I call these my Happy Shoes because they literally add to my happiness every time I wear them.

I wear my Happy Shoes when it is gray outside and I am happier.

I wear my Happy Shoes when I have to advocate for my special needs son...again...and they add some happy.

I wear my Happy Shoes when I need to drop off 3 boys for 3 schools and life feels crazy and I can look down and think "but at least I have Happy Shoes."

I wear my Happy Shoes on days when it is really hard to get out of bed. When I feel like I might cry all day. When I feel like it is hard to breath. When I just can't be me for one more day. Then I slip in to my Happy Shoes and somehow a tiny voice says "You can do this. Look at how cute your shoes are."

I need Happy Shoes because I struggle with depression. Sometime no matter what is going on, and sometimes because of what is going on, my brain just struggles. I haven't felt clinically depressed in about 5 years, but I struggle regularly with what I call my "pre depressed feeling", maybe "the blues" or "the duldrums", but I know when I am there that I need to take action. I need to act my way to a better place. This is actually fairly impossible for a person in a real state of depression, but where I am, in my "pre depression", I have a tool box of actions that can help me. And one of those tools is to wear my Happy Shoes. And so I do and so it helps my brain.

But why bring them up today?

Well, those "Happy Shoes" are by designer Kate Spade. It shook me to my core this week to know that the amazingly talented woman who made my Happy Shoes struggled so much that she couldn't see a way to keep going, so she didn't, she stopped living. I cried. Not because I knew her, but because without her making my Happy Shoes, I would have one less tool to fight against this demon. She helped me in my fight and she didn't even know. She was struggling in a fight. Did anyone know? Who else is struggling? Does anyone see? These are big questions. We have to start answering them.

I will continue to wear my Happy Shoes. They are a part of my tool box. I will wear them to help my own mind and I will wear them as a reminder to always be looking out for those around me who are struggling.

Seeking Help

I am really independent. It seems to be coded in my DNA. I am that independent.

There can be a lot of virtues about being independent. Being independent helps my life in a lot of ways. But like most things, there are two sides. This post is about the other side of independent:

It can make me think I don't need any help.

And, little secret, sometimes I really do need help.

Ok, I have three kids under the age of four. It is not a secret at all that I need help. But, for some reason, my head still treats this as a secret. Because...I am, and want to be, independent.

And that can stop me from asking for help. And not asking for help can make my life worse.

So, since the birth of my littlest boy,  I have been working hard at asking for help (or saying yes more often when it is offered).

Seeking help is hard. Seeking help admits I might actually need help.

AND...

Seeking help, it turns out, can also be freeing and, well, um, helpful.

I have seen this first hand in a few ways in just the last few weeks and I think I am on to something with seeking help.

Way back before we adopted Isaac I was diagnosed with post partum depression (PPD) following a miscarriage. This makes you more likely to be diagnosed with PPD again so I, and my medical team, are on the lookout for this after I give birth. Peter's birth was also pretty traumatic, which also ups your PPD chances. But, I have felt pretty good since he was born, far from perfect because this is all HARD stuff having three little boys, but pretty good. So I decided to see a Psychiatrist. Why? Well, because I am trying to seek help and maybe she would have a different take on my head right now. Maybe I would need help, maybe I wouldn't, but to be a person who seeks help, I had to first ask. We had a lovely chat over the head of my sleeping baby. She agreed my head seemed pretty good, not perfect, but pretty good. She had some ideas for me. I am going to try them out. Mostly I feel freed from wondering if I am really okay because I went seeking help instead of doing it on my own.

Then there was breastfeeding. For me, it is an okay thing, not the magical experience some seem to have, but I like feeding my babies. It hasn't been going perfect. The independent part of me says "eh, it is going well enough, everyone struggles". But I want to be a help seeker so I decided to see a lactation specialists. Maybe she would have some ideas for me or maybe she would say we were fine. Turns out, Peter has a little tongue tie. Getting that fixed should help a few things. She gave me some other ideas, too. Seeking help is going to bring healing to my baby (and to me).

That second one I feel extra good about because other professionals said I didn't need to go, that I was "probably fine". I decided to be a help seeker instead and learned we really needed help. This is what is about. I am proud of myself for choosing to seek help.

Maybe there are other times I didn't know I needed help and I really did. I get a little afraid to ask for help sometimes, It is the curse of the independent. So this help seeking is a growing experience for me. My husband recently told me the following phrase and it is my new "go to" for thinking when I don't want to seek help because I don't want to face rejection...."the answer will always be no until you ask". How many times have I just assumed no and made my life actually a little harder?

So I want to be a help seeker because its turning out that life can be a little easier with some help along the way.