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. https://www.youtube.com/watch?v=6d1z3YMm2Yc
Oh Good God no.Am i reading this right?Little Max?I am really sorry to read this sad news and we will have you in our prayers.May the Lord God give you,Holly and Max's dad, as well as the rest of Max's family and friends, the strength and grace to get you all through this trying and painful period.Bless you all.
I don't pray, but I will now, for your family.
I'm so sorry Veronica!!! I, too, don't know what else to say... You are in our thoughts while he watches over you.
May god give you strength. My love to you and your family.
Veronica I am so very sorry. I pray God gives you and your family the strength you need. My brother died unexpectedly four years ago and I will ask him to look out for Maxi. He loved kids and I know he will hold his hand and keep him safe in heaven for you. Maxi is in heaven looking down on you and he will always, always be your, your husband, and Holly's guardian angel in heaven.
My heartfelt condolences for the family.May lord rest his soul in peace.
I am so incredibly sorry and heartbroken for you and your family. I will pray for all of you. May God hold your precious little Max lovingly in His hands.
I am so very sorry. We are all praying for you and your family.
Oh Veronica, I just heard about Max, I am so so sorry. I don't even know what to say. It seems like just a few weeks ago we were talking about how Max and Wyatt were doing. I am just heart broken for you and your family. I know that we are just "cyber" friends, but if there is anything I can do for you, anything at all. Just ask. If you just want to talk, cry and laugh, I will be here for you. I will send you a message in the inbox with my phone number. Again, I am truly sorry.
I pray for your family to be in the arms of angels (Sarah Mclachlan)
Spend all your time waiting
For that second chance,
For a break that would make it okay.
There's always some reason
To feel not good enough,
And it's hard, at the end of the day.
I need some distraction,
Oh, beautiful release.
Memories seep from my veins.
Let me be empty,
Oh, and weightless,
And maybe I'll find some peace tonight.
In the arms of the angel,
Fly away from here,
From this dark, cold hotel room,
And the endlessness that you fear.
You are pulled from the wreckage,
Of your silent reverie.
You're in the arms of the angel,
May you find some comfort here.
So tired of the straight line,
And everywhere you turn,
There's vultures and thieves at your back.
The storm keeps on twisting.
Keep on building the lies
That you make up for all that you lack.
It don't make no difference,
Escape one last time.
It's easier to believe in this sweet madness,
Oh, this glorious sadness,
That brings me to my knees.
You're in the arms of the angel,
May you find some comfort here.
I have not posted here in quite a while but I had to send you my love and condolences and tell you what a beautiful tribute to your sweet Max! Sending you strength to get thru each day, love and light! God has your Max in his loving arms!