sunsets and sunrises

It's been two weeks. In that time I've tried to figure out how do I say my dad has died? How do I say those words without feeling like they are coming across as calloused? How do I process before I feel?

The feelings finally came and they came like a tsunami, crashing over me and leveling me. When my father in law died my grief came quickly and intensely. When my dad died the reality of his death and the subsequent torrent of emotion took nearly two weeks. Both of the men I've called dad are gone and it feels vulnerable. 

He'd call me his darling daughter Dawn. I would grin and reply by calling him my darling father Dad. When asked what he wanted for his birthday, Christmas, Father's Day he would respond with "a basket full of hundred dollar bills". One year I decided to give him his basket full of hundred dollar bills. I bought money designed wrapping paper and cut out each individual "bill" and put them in a basket. He laughed so hard. It remains to this day my second favorite gift I ever gave him.

If you asked him how he was he'd say "finer than frog's hair." I'd giggle and tell him frogs didn't have hair. Eventually he moved on to saying "never been better." That was how he became known to friends and strangers alike. His gravestone will even include the words never been better. 

When I was a teenager, a traumatic event rocked my world. I pushed through and buried my emotions until they spilled over and I just couldn't push through anymore. My dad knew I had reached my breaking point. He called me out from school and took me to the arcade to blow off steam. I don't remember what I played or what we had for lunch that day or what we talked about or even if we talked at all. What I remember is how I felt. I felt seen and protected and loved. That day recharged my emotional tank and gave me the strength to keep pushing through the situation. 

When I was little and I'd have a nightmare, it was my dad who held me. He'd let me fall asleep on his chest and carry me back to bed. During baseball season my grandpa would come over and sit in the chair and my dad would lay on the couch; I'd lay next to my dad, squishing him terribly but he never complained, and I would fall asleep with the sound of his heartbeat in one ear and the sound of the Cardinals game in the other ear. 

Listening to his heartbeat was comforting. The sound of my daddy's heartbeat always brought my anxiety down. It was like in those moments I could believe everything would end up ok no matter how chaotic it was at the time. And now, the heartbeat of my dad, the most comforting sound of my childhood has stopped.

Dad, I love you. I'm glad I got to video chat with you shortly before you left. Until we meet again, my darling father Dad. 

Endings

I have far too much to process. How funny it is that it is always in those times of overwhelm that someone reminds me I need to write. This time, that someone was Hubby and his persuasion that the world needs my voice. I don't know the world needs it but I do know writing helps me process my thoughts and emotions. I guess it is time to write again.

A month ago I was laid off from my job of eight years. I saw it coming but it still was hard. I told my work wife a month before it happened that I thought they would eliminate my position in September. She assured me that wouldn't be the case but I just felt it in my gut. I was wrong, it happened the end of July. It didn't go down well. They called me in on my last day of vacation to let me go. They let go of 11 of us and said it was due to COVID that they had to make some tough decisions to eliminate positions. But then I learned they were hiring five new people. They said it wasn't personal but it sure feels personal when someone is being hired to do the job you used to do.

It was time to move on. I knew that. I just wanted it to be on my terms. I spent eight years of my life pouring my heart and soul into a company that easily discarded me. I want to be excited about my next but I have to grieve the loss of my community first. I've spent the last several weeks just surviving. I've played way too many games on my phone and barely done anything else. Today I finally feel like the fog is lifting some. 

I miss my work friends dearly. They had become so much more than coworkers to me. We have supported each other through so much over the years. But I don't actually miss the job. I thought I would but I don't. I find myself relieved that I'm not the one answering the emails wondering why the organization, including the volunteer team, was restructured. I find myself relieved to no longer have to have the "work voice" that spoke for the company. I find myself relieved to no longer feel fractured. I find myself relieved to be able to be fully true to myself, something I haven't felt in a couple of years.

I am going to be ok. I am going to find my next. In the meantime, I'm going to stop avoiding the emotions and embrace all the feels. I'm going to sit with my discomfort. I'm going to find my voice again. 

here we go again...

Many times I thought I would write some how to advice of how we managed having Littlest in a Petrie cast last year. I thought I would post pictures of how we modified clothes and how he managed to get in and out of the car with both legs cast. And then I thought I'd post updates like when he got the cast off finally and when he was in the brace. I'd think of things I'd like to say but wouldn't blog about them because I wanted the congruent timeline of events to be perfect. So for the last 10 months I've just stayed silent.

I can't wait and hope for my perfect timeline anymore. I need to write. In mid-April his pain started escalating again. This time we were prepared for it. The surgeon had told us it would happen and that we would do nothing until doing nothing was no longer an option. When day after day the pain level stayed high we knew it was time to bump up our doctor visit from August to immediately. New x-rays show his hip getting worse again and our surgeon had reached the end of her ability to help him. I'm not exactly sad about this; the surgeon we have had for the past year is a good doctor but not a hip specialist and doesn't have the warmest bedside manner for working with kids. Even so, it is difficult to hear that your son's condition is beyond the ability of his doctor.

The new surgeon team she referred us to took even more x-rays with some added angles. The short version is that my boy needs surgery yet again. The new team spent nearly two hours with us explaining everything they saw and the procedures they would like to do. It is major. Instead of focusing on the femur as they have in the past they will reorient the pelvis to cover the femoral head and possibly need to reshape the femoral head to fit in the hip socket. The positive in this is we really like the new team and we trust them. They were great with our boy and great with us. They appreciated and applauded the fact that I insist that Littlest be part of all discussions because it is his body and his healthcare. Yes, mom and dad make the decisions now but he needs to know how to advocate for himself and how to navigate the medical world as he grows. Someday he will need to do this on his own and I plan on giving him as much of a head start in that department as I can.

We don't have a surgery date yet. MRI is in a couple of weeks, pre-op is in early June, and then surgery as soon as they can arrange it in the schedule, probably late June to early July. Even though we knew at the last procedure that another was likely it is still difficult to hear out loud. We had so hoped to have a summer of fun not another summer of surgery. When the last visit had the results of "no change, see you in six months" we thought we had managed to at least have a summer without medical issues. But Perthes is a terrible disease and has not proven to be predicable in the least. 

I've had a hard time with this. I've told some people but I haven't wanted to tell everyone. I've wanted to hold the news close. At first diagnosis when friends would ask how they could help I knew, I had answers. Now as we approach the forth surgery, I no longer know what to say when asked. Four surgeries in three years, I feel like I should be a pro at this but I'm not. I feel like I should know what to say when friends want to help. Early on I felt like this was a fast easy journey. We have said often that in the beginning we understood Perthes more like an injury than a disease. We thought surgery would be one and done. Now three years later still facing the same things, I feel like a burden. I feel like my constant narrative of having a kid who hurts so much he cries himself to sleep and wakes in the night is difficult for my friends to still be hearing. I'm probably wrong about that but it is still my current perception.  

My Littlest is frustrated. He's hurting to the extreme. Hubby and I would do anything to take his pain away but we are helpless to make a significant difference. Brothers are stressed out about this. Sometimes average playing results in someone bumping the leg and tears. Yet somehow in the midst of it all we still laugh, we still play, we still love, we still hope. We hope that this will be the surgery that will bring relief. We hope that soon this will be a memory instead of a current reality. We hope for a cure for Perthes so that other kids can avoid the pain that our son lives with constantly. Did I mention that we hope this is the last surgery and after this he can go about the business of being a little boy?

tangible encouragement

Children's Hospital called, there is finally an OT (occupational therapy) spot available for my middlest. He begins therapy for his food/texture/variety issues the week before school starts. It's at least a starting point but it's a starting point that once again makes me realize how big this iceberg might be. He will have to leave school early once a week for therapy because it is the only time slot available.

My littlest is finally starting to heal from surgery. His bone is healing nicely but his incision has taken a long time to heal. He had a reaction to the stitches and while his body was rejecting the stitches and trying to push them out, the incision got infected. Thankfully with a round of antibiotics, a mom who can handle pulling stitches out as they began to emerge from his body, and an AMAZING medical team, his incision is now also on the mend. He gets out of the wheelchair the first week of school and then starts physical therapy. He'll be on crutches for about four weeks after getting out of the wheelchair. He also will have weekly therapy.

I'm finding myself already anxious about the new school year. Two kids in weekly therapy plus nightly homework puts me on edge. And there is still more screenings to go. The specialists who evaluated Ev for his food issues all unanimously agree that he has sensory issues but we are on a waitlist for the screenings that can give us a formal diagnosis.

In the midst of it, sometimes I forget how to breathe for a few moments. I feel the familiar tightness begin to close around my chest and use all of my coping skills to keep myself from falling off the precipice into the bottomless cavern of anxiety. It's good to be able to put words to those feelings. They seem as random as they are overwhelming until I actually write them down.

I have a favorite wine glass. I once joked to a family member about this glass in the midst of last year which was truly the most miserable school year EVER for my middlest. I told this family member that on really tough days when my son was screaming at me and melting down, that I could count on my wine glass to encourage me and remind me that I am strong, bold, fearless, beautiful, amazing, gifted, and incredible. I realized after I said it that I wasn't really joking. That glass gave me words to remember who I am. Sometimes I'm a little thick so seeing the glass was a tangible reminder that I can do this.

Along the lines of sometimes needing a reminder. When littlest was in the hospital for surgery, I found a bracelet at the gift shop. I rarely ask for jewelery so Hubby immediately agreed when I asked for it. I would turn it so that the words I needed most were facing me. I love, love, love this bracelet.

Though neither of these things define me, they both encourage me. Do I need a glass and a bracelet to be who I am? Absolutely not, but I do appreciate the reminder of truth that both items give me. I'm strong, stronger than I feel. I'm brave, braver than I feel. And most importantly, God is my rock and my fortress, a very present help in trouble, my strength and my shield, and I can rest in His arms knowing that he will carry us through. 

tired and overwhelmed mama

I'm walking a journey that I've been walking for years but now this journey is starting to have a name. I'm walking a journey that I am slightly afraid to share because of the judgement I've seen others hurl at fellow travellers of this path. I'm sharing anyway because I know I'm not alone. I'm sharing so that when I fall in sync and my current overwhelm becomes my future normal, that I will remember when that normal was still new and scary.

 I am the parent of a special needs child. The needs part is still being evaluated and diagnosed but there is a consensus from every professional who has seen him that my son has definite sensory issues in some form. Is it autism? Is it sensory processing disorder? Is it ADHD? Is it OCD? The jury is still out on that.

Friends, the paperwork is plenty and the mommy guilt sometimes threatens to sweep me away. It hurts to have to answer questions about family history of mental illness and admit that his mommy has been diagnosed with PTSD, major depressive disorder, and anxiety. Tears have sprung to my eyes so many times as I fill out paperwork for yet another evaluation.

I find myself in a place of constant stress and longing for a hammock in the warm sun with a garden of beauty nearby. My soul longs for rest and yet I keep striving.

The peace and hope I have found to carry me through exhausting days has come from the prayer that is the most often on my lips right now. God, you created him. You knit him together in my womb. You understand how his brain works because you designed it. Please give me wisdom and insight into how his brain works. Help me to reach his heart. Help me understand my little boy's mind.

Life is chaotic right now. My free time is spent researching developmental evaluation centers and filling out paperwork and making appointments. I'm thankful in the midst of the overwhelm for a supportive family. I'm thankful for grace that carries me through the tough days. I'm thankful for my son and the joy and laughter he brings to our family. And I'm thankful God chose ME to be this little boy's mama.