The Night Before Kindergarten

We have been preparing for weeks, or months, well, truly, for years (read below). Tomorrow is the day. Peter will put on his backpack, make his way down the block, get on the big kid bus, and finally go to Kindergarten.

He is ready.

My head is ready.

My heart is so not ready.

I promised myself years ago that I wouldn't totally lose it when my kids would go to Kindergarten. There are so many parents who would give anything for this moment who won't see their babies until heaven. I get mine back by dinnertime.

And I have kept that promise, yet there is also a tug at my heart with all the feelings on the night before Kindergarten. Especially for Peter....

Because 5 years ago our world was rocked by his ONH diagnosis. I have written a lot about that journey, but this week holds a special place. One of the questions I asked early on, like any mom would even though no one can exactly answer, was "what will his life be like? "what will he be able to do or not do?". Like good professionals, no one had an exact answer about the future but the one "long term" goal that was noted was main stream, general education Kindergarten with support for his vision. As he got older we learned that would mean attending a different school than his brothers. That was fine, as long as he had good support. Then a couple years ago his vision made a big leap and he was no longer in need of his white cane or learning Braille. He progressed academically in leaps and bounds. So not only is his starting general education Kindergarten tomorrow, he will be at the same school as his brothers. I never even asked or imagined and God answered anyway! So my heart is celebrating!

But more than any of my other kids, Peter has been a full time job. We met his diagnosis with our heads held high. There wasn't anything I wouldn't try or therapy I would turn away for the first 3 years of his life. I researched, called, explained, tried out new ideas like our future depended on it. Because it did. And it worked. God made little brains to be very flexible and Peter's hard work helped grow his brain in new ways. Then tomorrow, someone else has Peter for the majority of the day and that feels very very strange after the last 5 years.

Peter is also my last little boy, and while Ellie will be the very last to school, this #boymom is feeling fragile tonight. So my tears are just close to the surface as I write this.

Peter is ready to go. Peter will do great things. I said when Peter was a baby that God had a special plan for Peter because God made Peter special. I know this in my head and my heart. So I will watch him get his backpack, walk to the bus stop, and head to Kindergarten knowing that the world needs a special Peter, but there will probably be a few tears in my eyes as I walk back home.

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.

Seasons of transition

I like to think of life in terms of seasons. I love the changing of the seasons in our physical world. I am not even sure I have a favorite season because I am ready for each one and embrace the change.

So I also think of my life in the same way...seasons that come and change and go and flow together and grow from each other. Some of them are seasons of excitement (hello, wedding), some are seasons of big change (hello, new baby), some are seasons of sadness (goodbye, dear friend), and some are highlighted by the transitions that they will bring to our lives.

I have been knowing this current season of transition was coming, at least a part of it, for the better part of two years. I knew that the end of November 2018 would mark a dramatic change in the life of one of my children, and by extension, my life as his mother would also have a large shift. I knew that it would not be a quick and easy process to get him through the transition. That my job as his advocate and voice would be exponentially larger through this season. To get him to and through the transition.

It is a season I have looked ahead to with both excitement and dread. Maybe because I knew it had a date associated with it even two years ago, I have had a lot of time to think about it and ask others who have gone through it and think of how it would play out. I knew it would be a hard season, even with the good that it could bring. There was no doubt in my mind that this end of 2018 would be mentally and emotionally taxing.

And now it is here and, to be totally honest with you, it has been harder than I even thought it would be. I have been trying to figure out why and I think I figured it out today. Because I only thought of that one aspect of life when I thought about this season and now I am here and there are SO MANY other things going on. Life doesn't happen in a vacuum.

See, my vision impaired toddler is going to be 3 years old this month. It has been a long and hard 3 years. Some days I am amazed we have made it here and he is mostly thriving. But age 3 signals a HUGE change in how kiddos like Peter are provided public support services . We will go from home based therapy to therapy based in the public school system. On his 3rd birthday, he will begin developmental preschool 4 days a week. He will be away from home for 3+ hours on those 4 days. That is a big deal for him at this age. For me, getting all the services lined up is a fight. It was a known fight and it has already had some big fights (and wins, so that is good, but still). It is making me tired.

I knew I would need to focus on this transition for these months. It is always on my mind. But so are the zillion other details of life with a family of 6. The baby had eye surgery last week! We are sharing our story in support of one of our therapy clinics on Saturday night...at a black tie affair with over 400 people in attendance. My husband has been in a state of transition with his job for the last few months. Life is so big right now.

In the midst of it all, I had some personal goals I wanted to achieve. Those who know what they are have been encouraging, but it has also made it almost feel like a bigger burden. And I am getting so tired.

So I forgot a key component to making it through a season of transition. I forgot that I need to give myself extra grace. That some things will slide. That I will have to unclench my fists and let go of a few things. That I can't do it all. That I have a high need for sleep that increases with stress. That I live my daily life with depression not super far behind and I need to be taking care of myself to keep it where it belongs.

I have cried a lot this week. That is a sure sign something isn't right. But it is getting better tonight. I remembered grace today. I talked to my people about how I feel. One of them encouraged me to remember the season. One of them reminded me that lists will help me. One of them brought me red roses.

I am remembering my season and that I need grace. I am smelling my flowers. And here is my list....

1. Remember grace
2. Get sleep
3. Do what I can for Peter
4. Let God do the rest for Peter
5. Set my other big projects aside for 2019
6. Exercise, meditation, and focused breathing every day
7. Embrace the chaos
8. Do one thing each day just for me...reading, writing, coffee, something

Above all, remember this is a season. It isn't forever. It will change like all those before and after. I will continue to grow and remember grace and hopefully look back on this season as one that birthed great new seasons to come.

Falling apart and what happens next

Many people tell me that they are amazed at my calm and humor and grace in the middle of life as the mom of the Bennett crew. And, because I am working on not having a self-depreciating attitude, I will say that they are right. I am good at generally keeping it together in what is a pretty high stress mothering environment.

That doesn’t mean I don’t fall apart sometimes. Sometimes I fall apart in a big big way. It would probably be a bad sign if I stopped falling apart because there are days life is seriously awful and if I wasn’t falling apart it would be because I had stopped feeling anything at all. So sometimes I do fall epically apart. Mostly in private because of my personality, but sometimes even in public I just lose it.

I had a such a day two weeks ago.  It had been a rough 24 hours with our oldest son. It was time to get to the bus and he wasn’t having it. His anxiety and disruptive behaviors were at a premium. It took the whole village that is my neighborhood to get him on the bus. I had no idea what I was going to do if he didn’t get on that bus. I was panicked. When the bus doors finally close, with him safely on board, I broke down in tears. My neighbors gave me hugs. I cried all the way (super late) to my double preschool drop offs. I cried through drop offs. I cried clear through the Starbucks drive thru window.

What happened next, though, is the important part. I stopped crying. I did my next things and while I did, I started to deconstruct the morning. I asked myself a lot of questions. What triggered the child? What made me feel the most upset? What could have changed? What couldn’t change? Where could I call in some resources? Who could help me? And with those questions I started to create an action plan. A plan of people to call, places to go, a plan of what I was going to do for my own spirit after it had been so totally stomped on that morning.

With those thoughts, the clouds in my head and my heart started to clear. My soul was coming back to where it should be. To be honest, the problem wasn’t solved. I had no clear answers or promises that this wouldn’t happen again. Getting the answers to my questions and getting a plan in place took a few days of hard work, and it took some not taking no for an answer.

All the while I still was doing my regular next things of parenting and life. The taking a deep breath, the thinking through the events, the analysis and refocus, those I would argue are the healthy result of falling apart. Now, it would have been easier to give up on that day. To go home and eat a bunch of junk comfort food and watch a movie or bury myself in a book. Those are the not healthy responses to falling apart, those responses take you from falling apart over one thing to a life falling apart and a depressed spirit, if I may be so bold as to say.

We don’t have to put on a wonder woman face to the world, we don’t have to have it 100% together, we can, and should, fall apart sometimes. Where we go from there, though, can have a huge impact on our souls. So, I will keep falling apart AND I will keep putting myself back together. Hopefully an even better version, a wiser and new lesson learned version, of myself.

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.