Our Max
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
Replies to This Discussion
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Permalink Reply by Veronica E. on
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Thank you, everyone, for your condolences. It's so crazy to realize I've been without my baby for so many weeks now. I have bad days and better days, but just constantly miss my little guy. My greatest fear is that I will forget something about him, so I'm trying to write down the funny and sweet things he did when I think of them.
Holly seems to be OK. She talks about Max, which I'm happy about, because for awhile she didn't say much. Every few days, she'll ask, "Mommy, why did Maxi die?" :( She also points things out that we're all thinking, but adults don't say. At a restaurant, she'll say, "We used to be a table for four, and now we're a table for three." She complains often that she's bored, so we've tried really hard to spend a ton of time with her: she and I have worked on a ton of craft projects and she is her daddy's official garage helper now. (He even bought her her own tools and garage clothes for Christmas.) We've set up many playdates with her sweet friends. The other day, as I was walking her to a neighbor's for a playdate, I asked her, "Are you having fun playing with all of your friends lately?" She said, "Yeah, but Maxi was more fun than 100 friends."
My husband James and his friends have started a Max tribute race car. That is kind of his therapy. My best friend is going to help me make a quilt with Max's clothes, and I have thousands of picture to put into albums.
I will let everyone know what the results of the autopsy were. It was suggested to me that he may have had an arrythmia, although that won't show up on an autopsy.Friends and family were asked to donate to PPMD if they liked, and they donated more than $3200, which was matched by the amazing, generous anonymous donor who was matching gifts at the end of the year. I pray that a cure or better treatments are found for all these beautiful boys.
A couple of months ago, I was trying to imagine what life would be like if there isn't a cure, and I were to lose my sweet boy when I was in my late 50s or early 60s. I never even considered that I could lose him so soon. I'm reminded of the song If I Die Young: "Life aint always what you think it ought to be. Aint even gray but she buries her baby. The sharp knife of a short life ..."
So many people, including you guys, have written beautiful messages to us. One of Max's therapists at ECI said, "I worked with many kids at ECI, but Max was a star in my sky." Max was a wonderful, funny, mischevious, beautiful little boy, and I wish you all could have met him. I hope I didn't depress everyone with this post. I just wanted to update you guys on what's going on. This board was very helpful to me over the past three and a half years. While I've never met you all, I always felt a connection to you as we all did our best to give our children the best life possible.
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I forgot to mention that last summer, after not going to any church for more than a decade, I joined Grace Bible Church in College Station. I had so many questions about why there is disease, childhood illnesses, etc., and wanted to equip Max (and Holly) with faith to get through the difficult challenges I knew we would face.
I am so thankful for my church family and for the fact that I strengthened my faith over the months before Max's death. I thought my desire to become closer to God was going to get me through the years of caring for a child with a severe disability, but now I believe that desire was preparing me for his death. While I miss him so much, I get great comfort from knowing he is in Heaven and we will join him there when we depart this Earth.
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Permalink Reply by Gina Manning on
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Hi Veronica,
I am very sorry to hear about Max. I am thinking of your family. Please know you have many friends on here. If you need us we are here for you.
Gina
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Permalink Reply by wainaina muiruri on
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Hi Veronica
Keep the faith,for at times like these it is the thing that keeps you going.That and the love of those close to you.I know,because i have been there myself.May the Lord keep your heart strong and steadfast.
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Permalink Reply by Debbie Bowman on
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Veronica,
I think about you and your family every day. Praying for peace for all of you.
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Permalink Reply by Ofelia Marin on
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Jesus, I just saw this. I am so, so sorry to read it. My thoughts and prayers are with you and your family.
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Permalink Reply by Marla Swope on
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Veronica-
My heart is so heavy with sadness from hearing that you lost your precious boy. We too have let our son sleep with us, and I also nursed him longer than other mother's might, but never again will I feel like I shouldn't have. Your story saddens me, but teaches me so much too. Your strength is inspiring, and I appreciate you sharing what's in your heart with all of us on PPMD. You and your sweet family are in our prayers.
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Such a beautiful video tribute for Max.
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Permalink Reply by Renee Klahn on
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I am so so sorry for your loss. No one should have to go through something so painful as the loss of a child and I am deeply sorry. Bless you and your family and know that we are thinking about you.
Sincerely, The Klahn's
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Permalink Reply by Thomas Hoel on
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Dear Veronica, I can't express enough to you, James, and Holly how sad I am for the loss of your beautiful son and brother Max. My heart breaks for all of you. Much of what you are feeling and sharing I have experienced myself with the loss of my son just 6 months ago. I just want you to know that I am thinking and praying for all of you during this difficult time.
With sincere sympathy, Tom
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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
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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
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