Apollo, 24 days old.
Denial is a funny thing…I found myself disturbed today as I researched tube feeding on the internet. Basically, because it made me realize that the doctors must expect Apollo to have feeding issues for a long time. Like a really long time. Or they wouldn’t do a g-tube which will require surgery again in three months to make it more permanent.
And then I see so many kind comments on here and think, “But they’re over reacting. I mean he’s not that bad.”
Nevermind the level of concern the specialists at the hospital showed. Nevermind that they looked me in the eye and apologized. That kind of seemed like overkill too. I mean, he’s always had these breathing and feeding issues. Nothing has changed. I’ve held him in my arms, seen him struggle to eat. Seen him getting skinnier and skinner. Nothing has changed. Except now he’s been diagnosed.
except now they know what his anatomy looks like. But nothing is different from last week or yesterday.
I guess somewhere in my mind I am still expecting him to “get better”. To take a turn for the better. To gain weight and eat and sleep well. Summer will come. We’ll be outside. In the fresh air. He’ll blossom.
Yes, somewhere in my mind I expect him simply to get better.
And on the flip side of that, you cannot possibly spend a week in a children’s hospital and not count your blessings. Things could always be worse. Always. And even when they get worse, they could still get worse.
Denial. Sometimes its a wonderful thing.
We always hope that things will get better for the ones we love, especially with our children. Hope springs eternal when it comes to the mother-child relationship. You are such an amazing mother with all of your children, and especially Apollo because you recognized long ago that he had some special needs of some sort.
He WILL get better with the feeding tube and summer coming, being out of doors.
There is hope that his body will eventually grow enough to make this problem more minimal; but even if that doesn’t happen, over time he will learn how to cope with his unusual situation. I know you won’t give up hope and you shouldn’t — that is a main job for mothers, hoping the best for our children. But with the knowledge you have now and the measures the experts have advised, the possibilities for Apollo’s future surely look better.
I can only imagine how hard it is to be going through all of this with your baby. As far as I can tell, you are an amazing mom to all your children, including Apollo.
I just want o encourage you about eh feeding tube. I’ve known a few kids who’ve gotten them. Some did not have them forever. For those kids it was a tool that allowed them to get enough to grow, to learn to eat and get past the issues that required the tube.
I know it’s another invasive procedure – but it seems like a gift you are giving him. You are taking the pressure off of him – as eating is really hard and he’s not been able to eat what he truly needs.
What the two above me said is better put than I could say. I can imagine myself feeling just as you do if I were in your shoes. I have faith in an Almighty God that he will do wonderful things for Apollo and through him.
We all experience some level of denial when we run into problems in life. Some are small and they go away, others are semi (or just plain) permanent. It will be wonderful for you to see Apollo grow. He will grow, and he will thrive. I have known a number of children on g-tubes and it really does free them in some ways. He can grow without struggle. For however long he has it, he wont remember not having it. His siblings will grow used to it and it will be just a part of his life. It will lead to better health. I am so glad you have a diagnosis, so sorry that he is sick in a way that doesnt have a quick fix. I am sorry for that. It seems like you will need a lot of healing time as well.
Denial is how we cope. You’re coping. You can use it as long as you need it and return to it again and again.
When you’re ready you’ll use something else.
Still thinking of you 🙂
Things could be worse–but that doesn’t mean they are not really pretty bad already :(.
And I think, when it’s your own child, it doesn’t matter how much worse it *could* be. It matters that they are suffering now. We keep you and your family in our prayers.
Renee,
I just want you to imagine me giving you a big hug right now.
It’s like this…You got on a plane you thought was headed to Italy and instead you wound up in Holland. Holland is can be a wonderful place but you learned Italian, studied Italy were prepared for Italian food. You had no interest in Holland. You will always be sad that you didn’t go to Italy this time but….don’t miss out on Holland, it may come with a feeding tube and health issues but it has a beauty and blessings you never would have imagined in Italy. I’m paraphrasing something another mother wrote about having a child with Down syndrome. It’s true for you too. You love that child with all your heart of course you don’t want that for him but there are blessings yes blessings for you all that you don’t see right now. Keep walking the Lord has you!! and him!! and your family!!!
It’s a long and difficult road you are on. Parents with chronically I’ll children need so much support and care. I hope you are getting both. I had a question. Did they say anything about his sleep? Will it improve? Is there a light at the end of the tunnel on that issue?
I was wondering the same thing re: sleeping better. I pray that he’s getting more rest and in turn you are getting more rest. I will continue to keep you all in my prayers.
I am so agreeing with Kim’s, above, comment. It is exactly how I would of worded it and I suspect only people who have had a similar experience could fully understand. My third child, a boy, was born in 2007. His birth was the only one of my five that was very close to being a c-section (had lots of heart decells that didnt fluctuate but stayed slowed, thankfully i dilated quickly pushed him out and the cord was round his neck twice.) He seemed to be a beautiful healthy “normal” baby boy and into his toddler years the same. He had a few things looking back that i should of been questionning but all kids are individuals and special right? At about 2 1/2 yrs old he had a extremely high temp, he had tonsilitis at the time, and had a febrile convulsion. That was our first hospital stay. After this he had seizures out of the blue which was a shock at the time. My healthy “normal” boy was diagnosed not only with epilepsy but also autism (i have condensed his story so as not to take too much time or space lol) I have been through the highs and lows with the health system and specialists and the numbing denial that comes with a diagnosis.
So in my opinion denial isnt a bad thing. Embrace it for now. It is how our hearts deal with such blows. Look after yourselves, your family unit. And pace things out to a slower flow. Its like a marathon, if you go guns blazing from the get go you will soon burn out!
The one thing I focus on is that his diagnosis is a small part of who he is. He is still my sweet, cuddly, very funny little man. And he is doing sooo well, it has been a long battle but we are seeing him blossom from our efforts. So enjoy this summer, go out with your family and LIVE. I also found that it helps talking with people who are going through the same thing (i know Apollo’s diagnosis is rare but there might be other families with children with similar feeding issues etc.), research your local area for support groups. It is good therapy for you. I also felt it was a place where I could “unload”. My husband wasnt copeing well so I didnt want to further burden him so at the group I attend I could talk freely and it was with people who “got” where i was comming from or had been there. Again I have condensed much of this and how it has affected everyone not just the three of us. So much to say but so little space hehe.
Big hugs and kisses to all of you. God Bless xo
http://www.lifewithjack.com/2012/02/thank-god-for-feeding-tubes.html
I just wanted to share this with you, another perspective. As a mom who has lost a son, and had a son who spent 4 months in the NICU critically ill, I know it’s not easy to watch your baby struggle. Take it one day at a time. It’s easy to focus on the “forever”, but this may not be forever, which would be wonderful! I hope the feeding tube helps your little guy out. Hang in there!
It doesn’t sound like you’re in denial to me. Like you said, he’s the same as before, but now you have a way to help him. And with that help he WILL get his chance to blossom.
In my (annoyingly optimistic 😉 ) opinion, it’s better to be aware that things could be worse, than to wallow around thinking you’ve been dealt the worst blow ever. When my son was going through his hardest time I always said, “At least he’s never stopped breathing, and they don’t have to cut him open.” Apollo’s been both of those places, but you can look at OUR situation and say, “At least Apollo wasn’t having a hundred seizures every day”. There are always things to be grateful for. Always. Because our God is always good.
While we have so many questions, remember our Lord will never say, “Wow. Didn’t see that one coming.” He is holding you, Chuck, Apollo, and the other 13 blessings in the palm of His hands.
You know, I was going to say “could be worse” at one stage (slightly more tactfully) and I though “no, that is prob a crap thing to hear.” It could be worse doesn’t make you feel better about your boy suffering. So, I am glad you feel thankful and that your faith helps with this also. But I feel really bad that you guys all have to go through this.
On the “it’ll be ok” front: I worked in a special school over a decade ago, and it was closing down so there were only ?15 or 16 kids there in the final year. And 4 of them had feeding tubes. (Was a school for the deaf but many were preemies etc, so had additional medical needs.) When 25% of the kids eat that way, it becomes very routine for the staff and other kids.
Though I am sorry that it even has to come to that.
Renee
My mom and I have followed your blog for a long time now. I never commented before but I suddenly felt moved to tell you how you and your family have touched our lives. We feel so much love for little Apollo. I gasped and shuddered reading his birth story and telling it to my mom. I told her about your blog and how it made me smile and laugh or frown and feel sad. We both looked at pictures of Apollo, cooing over how cute he is and worrying with you about his health. My aunt had a baby a few months ago and I hug him extra tight and feel doubly thankful he’s healthy. Your blog has reminded me many times what a blessing that is. Every time I see Apollo’s sweet, oh-so-serious little face I want to give him a hug. I check your blog to see how he’s progressing and mom and I just keep praying for a positive post. One where you’ll finally be able to say “I’m not worried about Apollo anymore. He’s healthy, he’s chubby, he sleeps through the night. He can eat a meal easily and with pleasure now.” I really hope that day will come.
You are a real inspiration to me, Renee. Your thriftiness, inner strength, positivity and lovingkindness make me want to be a better person. I want to be a foster-to-adopt mother someday and if I ever reach that goal, I will think of you and how your posts encouraged me towards it. I will pray to be as good a mother then as you are now.
I decided to write this long comment because you’re obviously going through a really hard time. I wanted you to know you are making a real difference in the world, not just in your own family but in the lives of people you have never seen and will never meet. Sappy as it may sound, you make the world a better place just by being in it and telling your story. You and your family are the salt of the earth and you give me hope for all of us. I hope my mother and I can continue to follow your family’s story for many years to come. Our prayers will be with you no matter what.
Wow! What a wonderful comment, so heartfelt and truthful. This is my exact feelings about Renee, her family and her blog. Makes it kinda hard to read all of this and not be able to help out in some kind of way. We are all praying everyday for a miracle for Apollo.
(To all readers) I’m sorry if my reply sounded negative just wanted to let Renee know we can relate and there is life after diagnosis.
I can’t even imagine what you’re going through and have nothing to add except ((hugs)) and to let you know I’m thinking of you and hoping Apollo suprises them all
I know. It’s so odd what a difference a diagnose can make. It’s like until that time, maybe “you” are making it to be worse than it really is… maybe it’s not that bad…then when other people start agreeing with you, and telling you that you are not crazy it changes things. This is serious, instead of you wondering if it is… Now, in a different way you have to face what you’ve always known. It is just until that time there was the hope that maybe you were wrong.
However, with a diagnose brings a new hope. This hope is you now know people will listen to you, and take you seriously. This means you know what to research to try to help instead of stabbing in the dark. It means that you know what will not work and won’t waste time trying to make it work.
There is just a level of shock that people don’t understand unless they’ve been there.
I get it.
(I mean “you” as in a general “you” not as in you directly).
(oh, my comment got swallowed. sorry), was just sending you a big hug.
I just wanted to say my mum went through much the same feelings when I was diagnosed with “issues”. It wasn’t until many years later when her mother (my grandmother) passed away that she realized she was grieving. Grieving for the child she was never going to have in perfect health again. She said later the grief for me and my issues was much more profound than the grief she felt for her mother.
I guess as mothers we get an “ideal” picture in our head of our child and it can be pretty disconcerting and jarring to our psyche to come to terms that the child will never met that “ideal”.
Good Luck and I hope the g-tube will give some much needed boost in food supply and most importantly, sleep!!!
To be at children’s is a very sobering thing indeed. Yes it could always be worse!
Still praying for a healing miracle for Apollo!!
My hope and prayer is that you will look back on the placing of the feeding tube (and the previous surgery) as the beginning of seeing positive changes and the road to a healthy boy. I am so glad he will have a way to get nutrition without having to struggle for it, it seems it will make all the difference and allow him to grow and get healthier. Not a quick fix, but hopefully a gradual one!