I am sure her friend meant well, just like those friends who tell us "I know how you feel." or "I get it." Then there are the ones who think you're way too sensitive about everything because your child seems fine (to their eyes). I've met all of them. Most of them mean well in their own way. But for us as the parents going through it, we often wished they didn't say anything at all.
I understand why she thought "so what?". We all deal with things differently, and honestly, just because she may not deal with it on the outside doesn't mean she's not dealing with it internally. Each person is different. I remember when Isaiah stopped breathing in my arms and was taken to the NICU, I broke down crying. I cried several times that day and the days to follow. The doctors before knowing what was going on, mentioned different possibilities. Joseph wanted to know what each diagnosis entailed. I didn't want to know a single thing until they knew what it was. I didn't want to worry about things that weren't yet confirmed. I also cried when we received the diagnosis, not immediately, I had to be strong for my children. But once the doctors were gone, the tears starting streaming. Joseph on the other hand thought - A LOT. So much he constantly had a headache. I researched. I talked. Then cried some more. Sometimes I cried while I talked about my research. He was quiet. Had I not known my husband I could've thought he didn't deal with it. Truth was, he WAS dealing with it. Just differently than me. This is so crucial to understand, especially for couples! But also for all of us. We all are different, therefore we grieve differently, we solve problems differently, we tackle new situations differently. And that's ok. Here's what's not ok: Telling someone how they should deal with a traumatic life-changing diagnosis. Instead tell them you're here when they want to talk. Or when they need anything. And mean it.
Now to number 3, it'll get easier revisiting those moments. It will never be easy. But with time, thinking back won't give you that paralyzing feeling anymore, that feeling that you can't breathe. You'll still get choked up and you may cry but this moment will not just be a moment of sadness and pain. It will also be a moment of remembering what your child has overcome, how far your child has come since. You will be able to talk about it and actually finish a sentence without breaking down. That's how you know you're dealing with it. You will be aware of the diagnosis and accept it. You will love your child the way they are and not want to change them even if you could. Will you still wish things were easier for them? More than likely. But you will also admire your child's strength, their courage, their love for life, their ambition.
Notice I used "dealing" and not "dealt". Here's why: You're never done dealing with it. Sarah, another stroke survivor mom put it very beautifully:
"(...) the grief and emotions surrounding the diagnosis of lifelong medical, physical, emotional and developmental issues will take place in stages and will most likely last until you die. Grief does not equate depression. It does not equate self pity or wallowing in despair. It ebbs and flows as life takes place, as new challenges arise and old challenges are overcome. It changes as you and your child grow, mature and age. (...)"
Grief does not equate depression or wallowing in despair. However, you can experience them at the same time. But I can also grieve and still have peace. The difference lies in visiting that moment and living in it. I choose to live in the joyous moments, the fact that Isaiah survived, that he's walking, using his right hand so much better than anyone thought. That he's somewhat talking, that he's a happy, healthy child. I have to visit the dark moments here and there, but visiting them is not a bad thing. It makes me so grateful because I know it could've gone the other way. This was my response to the post:
"(...) I went through stages and still do. I still get emotional when I have to talk about Isaiah's birth, how he stopped breathing in my arms and his journey. Now, more because I am grateful that he survived and how far he's come but it's always accompanied by the pain and fear we experienced, otherwise I wouldn't feel grateful I think. There are times when we're ok, then we face a new hurdle and we can't help but grieve again. It's not that we don't accept it, not that we don't love our children the way they are, not even that we would change them if we could - after all it's what makes them who they are and who we love! But how can you not continue to 'deal' with it when it's YOUR child that has to overcome all these obstacles, work harder, etc. How can you be a loving parent and not hurt because of it? For me the hurt and the joy walk alongside each other. (...)"
I have to say I always had peace, even when we didn't know what was going on, when Isaiah was in the NICU, hooked up to all the monitors, paralyzed. My peace came shortly after I broke down after he was rushed to the NICU. My peace came in form of a whisper, a whisper that calmed the raging storm. You need to know that my first pregnancy was a miscarriage. Nia was delivered early because the doctors were afraid she'd die. So when Isaiah stopped breathing, the enemy tried to stir up fear in me. The fear that he now was really going to take my child. That's when God reminded me that he had promised me a healthy child. The fear subsided the moment I heard His voice. I didn't know what was going to happen but I knew that He was in control and that with His help we could tackle whatever was to come.
So no, we're never done. I rejoice when Isaiah hits a milestone but I also hurt when he has a setback. I get excited when he has a breakthrough in therapy but can't help my heart aching when I see him struggling to walk because his leg keeps giving in. He's my child, he was given to me to raise him, nurture him, protect him and love him. I will address the last group of people in another post. It's been an emotional day, or rather week, as Isaiah had another absence seizure last week during speech therapy. Thankfully, this time it was just 10 seconds long. Still scary though. See, I'm still dealing....
Love,
