We started in the ER for a suspected stomach flu. He couldn't keep anything down. But it was this weird shallow breathing thing that he was doing that made the hairs on the back of my neck stand. It was subtle, but there was something about it that set off the Mom radar. I knew there was something wrong.
Blood glucose levels at 500 and a dangerously low oxygen saturation rate. Diabetes Type 1 and diabetic ketoacedosis they said. The bad type of diabetes, the kind you can't reverse. An emergency transport to Children's Hospital of Philadelphia and straight to the Intensive Care Unit we went.
I want to say that it was the most frightening experience of my life. But it wasn't. I did this already. He was born at 28 weeks - a micro preemie. We spent the first three months of his life in the neonatal intensive care unit. I've had my turn on the chronically ill child carousel. But nothing good or bad stays the same right?
So here we are learning to adjust to a new way a life. I have a 9-year-old with a chronic illness and a body that does not work. No matter how pretty the picture the diabetes community wants to paint me, he will never know what it is to have a completely healthy body. He is 9 freaking years old. I have a hard time wrapping my mind around that. The hardest moment was when he asked, about two weeks in, "hold up Mom, you mean I'm still going to have this when I'm an adult? No no no Mom, I want to take insulin and get better." I wish it worked that way kid.
I've always believed that happiness is a choice. I've raised him on, "Nico, choose happy." Life hands us all bags of good and beautiful and ugly. How well you carry those bags define you and are the difference between a happy life and one filled with bitterness and discontent. Everybody gets crap. Shake it off, get up and choose happy.
I made this layout two months before Nico got sick. I have it hung up in my scrap room now to remind me. Because there are days that I'm completely overwhelmed and I want to scream and set my damn hair on fire. There is sadness and worry and anger. But big eyes are watching me. He is oh so attuned to my attitude about this. He will be my reflection. And so - I keep getting up and choosing happy.
Because I want him to be happy.
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I think it's also important for our children to know it's OK to grieve, but that we move on and live our lives despite the setbacks and disappointments. We couldn't enjoy the good moments without some bad ones to show us what we have to be grateful for. ((((hugs)))) for you as you work through your feelings, resolve this loss and help your son move forward.
ReplyDeleteI'm so sorry to hear about Nico's diagnosis. Please know I'm thinking about you!
ReplyDeleteBeautifully said. Totally brought a tear to my eye. So sorry you guys have to go through this. Love the sentiment of carrying bags and choosing happy. Hugs to you both! :)
ReplyDeleteI couldn't help but think of my friend, Kristina Proffitt. Her beautiful daughter, around the same age, also has Diabetes. I'm sure she would be a helpful shoulder to lean on. I am so sad for you all but you will find a new normal as you work through this. You are stronger than you know. I will be praying for you all! Love and hugs!!
ReplyDeleteThanks for your thoughts and prayers and connecting me with Kristina. xo
DeleteHi sweet Nancy,
ReplyDeleteWe don't know one another, but I know OF you and love your beautiful work. Tracie gave me the heads up about your sweet boy and I just wanted to come on here and let you know that I totally understand where you and your family are at right now. My daughter, Caylin, was diagnosed with Type 1 when she was 5. She's almost 10 now. It's definitely super scary, overwhelming and heart-breaking at first because there is a lot of information thrown at you SO quickly, but just know that right now in the thick of it all, it WILL get better and it WILL become your new normal and life WILL be good again. As I'm sure you already know - this isn't the end of the world and I'm just so glad that it was caught before it was too late. I've heard too many times recently of that not being the case. :( I am here for you if you need me! The good thing is that there are SO many other D-Mamas out there (and D-Dads, too) and we're all in this together and so you've got a big family around you that will help you and support you through this. I will be praying for you and your family. Our kids are SO brave, resilient and strong. It's extra hard on us Mamas, but trust me - they are fighters and so very brave. Sending my love to you. Please let me know if there is anything I can do to help! My blog is: www.one-happy-mama.com. XOXO!
I remember you, from 2Peas I think? I 'know' your name too :) And thank you for reaching out from where I'll be in 5 years. I remember being in the NICU and after awhile what's routine to you is shocking to the new parents. So I get the perspective thing. I hope to get there sooner rather than later. And thank you for your thoughts and prayers. I appreciate them. xo
DeleteI am so sorry to hear this Nancy... Life sure knows how to deal us crap but you have a great outlook and that alone will tecach Nico so many things. You are a brave mom and raising a brave kid. I love your attitude and straight forward talk . If you need anything, you know where to find me, friend.
ReplyDeleteThanks my friend, I appreciate it. xo
DeleteBest wishes to your little guy and your family. It's going to be a rough adjustment, but Kristina's words should give you comfort. Lean on those that can help you all through at this time. And later you can return the favor. Hugs!
ReplyDeleteThanks Debbie. xo
DeleteGosh, this sucks. Sorry, my first reaction...I'm so sorry about this diagnosis. We have friends who have two boys with diabetes and their lives have changed since the diagnosis. Your honest words really struck a chord with me - most of all, I admire your resolution to "choose happy". Best wishes to Nico, to your whole family.
ReplyDeleteIt's funny that your first words are 'this sucks'. I never really let Nico say the word 'suck' just cause I hate the way it sounds. But about diabetes, I let him say 'this sucks' all the time. So of course, being the 9 year-old boy he is, he must repeat it and repeat it and repeat it - just because he can now. :) Thanks for your kind words. xo
DeleteI am so sorry to hear of your treasured son's diagnosis. I have not had to walk this path so I can't begin to know how you feel but you certainly seem to have the attitude required to support your son and set your sights on the best path forward. Blessings to all of you!
ReplyDeleteSending hugs and support. xoxo
ReplyDeleteThe picture of Nico's hand in ICU just kills me. You know how special he is to me. Always in my heart, thoughts and prayers. Miss ya too.
ReplyDeleteI am so sorry for what you are going through. Although My son doesn't have diabetes, he has spent a fair amount of time in CHOP also. He has had 7 operations there to relieve water off his brain. It is not a fun place to be, but through out all his stays , I realized that there was always someone there who was worse off than my son. He is now an adult and still deals with medical issues every day. He has a great attitude about it all. You are also looking at it in the right light. Choosing happy makes life so much easier. I trust that everything progresses well. There are many support groups that you could try if you feel the need. I love your scrapbooking style. The best to you and your family. Jersey Girl Anne
ReplyDeleteHi Nancy, Just wanted to let you know I get what you are going through. Our 5th child was diagnosed with Type 1 diabetes at 16 months and we too spent a week in PICU. I thought when we went home from the hospital that hey I got this, I can do this, but living it is a different story. Our little boy is 6 now and the healthist of all of our children. We have never made him eat different then the rest we just all have learned to eat better. The kids have all learned to do his "numbers" and our oldest is so good at giving him his shots. There are still days that I cry over the what ifs, but for me he belongs to the Lord and I can trust the Lord to take good care of him, much better than I ever could. You will learn tricks that work for you and you will overcome this too if you choose happy as you said. One really important thing is start setting an alarm and check his blood sugars in the middle of the night, strange things happen during the night and not all docs will tell you that. Also, don't ever skip the lantus (or long term insulin) even for a tummy bug, that ends them in the hospital almost immediately. Your son will learn what his body feels like when it is low or high and listen to him and act immediately. Our little boy says his tummy hurts when he is low. Low is scary, but just pump them with some sugar and up they come, with little ones we see lows often and highs (30s-250s). If you ever have questions feel free to email me or FB (we are on SS together). Prayers for you and your boy! Wendy
ReplyDeleteHe should be happy, and you should do anything to make him so. At least he is getting regular drug intakes, and seem to be treated well in that hospital. It's the kind of stuff that must be a given, but it does take some burden off your backs. Still, the disease may be chronic, but I'm sure you'll find a way to finally nip it in the bud. Good luck!
ReplyDeleteNoah Marsh @ MedCare Pediatric
I almost walked away because I do not know what to say....
ReplyDeleteBut decided that you might like to know that a total stranger that once in a while visits your blog (because I am so busy) and loves your Disney LOs is thinking of you, wishing you, sweet little Nico and you family well. And admire your choose happy decision. Prayers.
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