It is with incredible sadness that I tell you, my Duchenne community friends, that our precious Max, 3 1/2, died unexpectedly last week. We have no idea what happened, and we will not have full results of his autopsy for another few weeks. I don't want to scare you guys -- I don't think this had anything to do with his Duchenne, since I've never heard of anything like this happening to a boy so little.

 

I took Max to school Friday, and he was in good spirits. I even high-fived Max and his sister that morning when I loaded them into the car because the morning went so well -- the kids didn't fight, they listened to Mommy, we weren't running late and they were both in good spirits. I got a call from his school at 12:30-ish, saying he hadn't been acting like himself, so they took his temp and it was 102. On the way to pick him up, I called his pediatrician to get an appointment, but no one could see him. I picked him up and took him to Urgent Care. He was obviously feeling really bad. The doctor thought he had the flu (flu swab was negative, but he said 20% of people who test negative with the swab actually have the flu), and prescribed Tamiflu. I should mention here that our whole family got the flu shot in October.

 

I took him for a special treat of a Dairy Queen Frosty (his first Frosty, I think) on the way to pick up Holly from school. He was well enough to eat the whole thing, and was even commenting, "Mommy, it's like ice cream!" He didn't want to take a nap -- not unusual for Max -- but I knew he needed to rest, so I took a nap with him. I am SO thankful for that special time together.

 

That evening, he was really fussy, as I thought anyone would be with a fever. But he drank some and even ate a few bites of dinner. He told me he had to go potty. He was definately weak, but not just laying there and lethargic -- he was moving from the couch to my arms, to the recliner, etc. I called my mom to ask her if I could give him his pain reliever a little early, and while I talked to her, I noticed the color of his little lips looked a little strange. I immediately hung up and told James we had to take him to the hospital. Just a couple of seconds later, we lost our baby. We both tried CPR while the ambulance was on its way. We live about four minutes from a hospital, so I kept thinking as soon as the paramedics get there, everything will be ok. They were never able to get a heart beat or get him to breathe again.

 

Holly has lost her best friend, and we have lost our baby. We don't know how to live anymore, but we are trudging through each day for Holly. We have had a TREMENDOUS outpouring of love and prayers from everyone in our little city (College Station, Texas). Our pastor gave the most beautiful sermon I've heard in my whole life at Max's memorial service.

 

I thought I'd have Max for the next twenty years. I was just wondering the other day how I would be able to go on without my Max when I was a 60 year old, now I'm having to live without him at 35.

 

I'm thankful for all the time Max slept in our bed with us (three years), despite that many people told us not to co-sleep. I'm thankful for every time I nursed my little boy, even though we nursed for longer than is typical. While my brain told me maybe I should feel guilty for working for part of his life, my heart told me not to feel guilty, since he was SO loved by his teachers and friends at school. One teacher already has a Max-inspired tattoo.

 

For those of you who pray, please pray for healing for my family, especially little Holly. She is of course acting out, and just doesn't know what to doi with herself. You can see the hurt behind her super-silliness. At night, when I lay down with her, she's able to talk about how much she misses her Maxi.

 

Please hug your boys extra tight, and let them have yummy treats once in awhile.

 

Here is a tribute my husband made for Maxi that we played at the memorial service. God bless you all and your sons. http://www.youtube.com/watch?v=6d1z3YMm2Yc

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Thomas and Veronica, my husband and I have seen your posts here and our hearts are with you both.

Thomas Hoel said:

Veronica, my Matt is 19 and my Meghan is 14. They do not want to talk about Anthony's loss with Sue and me.  They talk about what he did once in a while to us but that is it.  They have really been turning to their friends for support. maybe just being teenagers or trying to protect us.  Not sure.  We did take Meghan to greif/loss support group for kids and teens and felt it helped her and us.  The last night we all tied a message to ballons and released them.  For us it felt good.  I know he got the messages.
It has been so hard to adjust after his loss from just existing to living.  we have all been pretty patient with each other and live so much more in the present.  For me, I did not take big steps to resume the world right away and made time to grieve.  Getting out with close friends helped bring some normalcy back and allowed me a break from the grief.  I saw the same with Matt and Meg.  The ballons and crawlfish boil sounds like a needed break.  Remember, you can always go and not stay long if to much.  your friends will understand.  Think of it as Max giving you a night off from the grief.
Please continue to let me know how you are all doing.  Take care, Tom

Veronica E. said:

Thomas, thanks so much for your message. I'm sorry to hear that your son passed away last year as well. I feel a great connection to other parents who have lost children -- so against the natural order of things! Thank  you for your prayers -- I will pray for your family as well. How did your son's siblings deal with his death?

 

This week has been hard, since Sunday would have been Max's 4th birthday. We're still not sure what we'll do that day. Holly wants to release balloons so that's probably what we'll do. Our neighbors who Max loved and who loved him so much happen to be having a crawfish boil that day. I think Max would want us to go over there and have fun since he was such a fun-loving little guy!

 

Take care,

Veronica

 

Hi Veronica, I was thinking about you, James and Holly this weekend and hope you guys found some peace and enjoyment.  Did you all happen to go to the neighbor's Crawl Fish Boil?  I would go for appetizers and conversation, but crawl fish is not one of my favorites.  Take care, Tom

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