I thought I would blog about, “how I’m doing.” I have a friend that blogs about her chronic illness and she has said it helps her to process and I really like knowing, “how she’s doing.” So I get asked a lot of questions and I usually answer them but I will answer them here too. So I get asked, “how I’m doing” all the time. Its more of a greeting in our culture so I never know if people really want to know or if they just want to say, “hi.” I usually don’t want to talk about how I’m really, really doing. Its deep, dark and painful so I usually just say, “great!” with a smile and move on. I don’t want to cause someone else to feel super sad and I don’t want to dwell on my sadness.
How am I doing?: I miss my baby. I miss my sweet boy. I crave his voice, his touch, his giggle, to see the sparkle in his eyes, to hear what he would say about something. My heart is shattered. If I didn’t have Molly I might just stop eating and drinking so I could die too and make the agonizing pain go away. I am glad that breathing is involuntary or I might just choose to stop. Mornings are the worst time of day because I wake up and realize that yes, Max is dead and it wasn’t a nightmare. It really happened.
My Faith in God, Jesus and the Holy Spirit: My faith in Jesus Christ being my Lord and Savior is stronger than ever. Thank you for praying for me, for Kelly, for Molly for our families, for our marriage! Your prayers for peace and comfort are working. God hears your prayers and answers them. Am I angry that God didn’t “save” Max so I could enjoy watching him grow up here on earth – you bet! This isn’t fair and its not what I signed up for. I will talk more about God’s “plan” and how I really don’t like people saying it was God’s plan for Max to die in a later post.
Why are you out smiling and visiting people?: If I just stayed home and “mourned” I would probably end up killing myself. I am a social person. When Max was the same age as Molly I was getting out and doing stuff and with friends and their kids. Also being at home is tough right now. I am a stay-at-home-mom so my day and pretty much my life was all about Max for three years. He is everywhere here. I am slowly being able to spend a day or so at home and that is a real gift from God.
Max’s room: Max died in bed in his room. It looked to me like he died in his sleep. I asked Kelly, my dad and his dad to take Max’s bed apart and put it away and get rid of all of his bedding. They also re arranged his room a bit so its more of a play room. I leave his bedroom door open and his blinds and curtains open. I don’t think I want his room to be a bedroom again and I don’t think I want to see the door shut again. I’m the one who opened Max’s door to find that he wasn’t just sleeping in. The thought of opening that door again if another child of mine is “sleeping in” is just too much for my brain to handle.
Pictures of Max in our house: We left all of the pictures of Max up. I had just put up new pictures in our living room of Kelly and I, baby pictures of the kids, the two of them together and with their cousins at Easter in April. It would feel strange to take pictures of him down to me like he never existed because he did!
Children’s Hospital: I am so grateful for Children’s and all of the doctors, nurses and staff that we came in contact with. We were able to meet on a street corner in Seattle with Max’s neurologist and talk about everything that happened. She is a great pediatric neurologist and did everything she was supposed to do. In no way to we blame her or Children’s for Max’s death.
Contributions to Children’s Hospital: So many of you have been donating to Seattle Children’s! Thank you so much! Because of all the donations Max’s name will be put up permanently on a wall there
Crying: I cry about every other day. Its in the car lately. I feel like I have a little bubble around me so no one can see me. I usually just tell God that I want my son back over and over and over again through sobs. I can’t cry big cries in front of Molly because she starts to cry too.
Talking about Max: I talk about Max some times. Its still very strange to spend time with my friends and their kids and not talk about Max. He and I were dealing with picky eating, him telling me, “no!”, him wanting to do everything himself, nap times, throwing tantrums you name it so sometimes I add in what we were doing when subjects like that come up. I don’t say it to be a downer I just can relate and want to participate in the conversation.
How is Molly: Molly is doing great. She is a happy healthy 10 month-old.
Will Molly have seizures: Molly is more prone to have fibril seizures (having a fever and then having a seizure) She is not more likely to have epilepsy. It is possible though.
Does Molly notice that Max is gone?: I think at first Molly probably noticed her super fun, loud, protective, talkative brother Max was missing. But with her being so young I can’t ask her what she’s thinking or feeling. I of course want to know. She is too young to have any real memories of him (our first memories are usually from when we are 2 or 3) but there are pictures of him and I have quite a few videos of Max and of Max and Molly together.
How’s your marriage: Our marriage is strong but no marriage is untouchable. God is at the center of our marriage and he pulls us together. That said Kelly and I grieve differently because we are different and he is a man and I am a woman. We will probably do some therapy together to help us through this. We do talk about all kinds of stuff together and about Max etc. Of course we fight as well. Because we are both dealing with trauma fights are compounded with that extra emotion.
Therapy: I started talk therapy with a therapist that I have seen a couple times in the past and I love. I am a strong believer in therapy for just going through this broken life. I am grateful to God for my therapist!
Are we going to have another baby?: If God gives us another baby that would be great. I am not in a huge hurry to get pregnant. Max died a month ago. I want to have two kids again but I also want to be on my anti depressant/anti anxiety medication right now and if I were to get pregnant right now Molly and the baby would be like 20 months apart. That’s too close for me.
Why did Max die?: As of today Max’s body is still at the King County Medical Examiner’s office in Seattle. The doctors there are almost done looking at his brain. It does and it doesn’t matter to me why Max died. He is still dead. Yes, I want him back but he’s not coming back. I will see him in heaven.
What will be done with Max’s body?: When the Medical Examiners are done with Max’s body the funeral home we chose will pick his body up and cremate it. Our plan now is to make a reservation on one of the ferry’s to Whidbey Island to spread his ashes off of the ferry. They will stop the ferry mid way, make an announcement and blow the horn. Kelly or I will walk to the edge of the ferry with a ferry worker and drop Max’s ashes into the water.
My Drinking: I am still sober – praise God! I still don’t really think of alcohol any more. I used to think about it almost on an hourly basis. If I hadn’t prayed to God and asked Him to lift the burden of alcohol from me and then HE DID I would be at the bottom of a bottle on a daily basis. I would self medicate with alcohol and probably never come up for air, destroy my marriage, my family, Molly and eventually die.
How am I sleeping: For the first month after Max died I took Benadryl every night to go to sleep and stay asleep. I haven’t taken any the last few nights and I’ve been okay. I’ve had one very bad dream but I’m praying that I won’t have any more.
Am I eating?: I’m pretty much eating normally again. For the first weeks I didn’t want to eat. The pain of not eating felt good because it was a physical thing that I could control when my life felt out of control and I hurt in my heart so the hurt in my stomach almost felt good. I did eat to feed Molly I just only ate when I was really hungry.