Out of the hundreds of wonderful and supportive comments and emails I receive, every once in a while I apparently piss someone off with something I share. Instead of writing back to this one person, I decided to share my response here in case anyone else felt the same way.
When I mentioned a few days ago that I raise Hannah differently than I do Abby and Ethan, a mom of 4 kids was “disgusted” with me and felt horrible for Hannah having me as a mom. She felt that by not planning for Hannah’s future like we do with Ethan and Abigail that I was “giving up” on my child.
I admit I don’t plan for Hannah’s future when it comes to going to school, getting a job, or falling in love and getting married some day. I don’t even let myself plan for her to go to the elementary school that Abigail and Ethan go to. I don’t stress about Hannah not hitting the milestones that she should at “that appropriate age and timeline” because it isn’t important to me. If I start letting myself think about it, I get incredibly angry, depressed, and sad.
Unless we can find a treatment for Hannah’s disease, there is a strong chance she may not make it to elementary school. If, by the grace of God, she does make it to elementary school, will she be in any physical or mental condition to go to regular elementary school? We know what the future holds if we can’t find something — tracheotostomy, feeding tubes, seizures, and just a horrible, horrible … I don’t even want to describe it.
Hell, I’m scared to death that she is not going to make it to her second birthday!
As parents, our role is to love and prepare our children for their lives as adults. Teaching them responsibility, individuality, community, etc. With Abby and Ethan, we do this every day and every moment. We talk about the future — schools, colleges, their careers (right now Ethan wants to be an architech or actor and Abigail wants to be a singer or doctor). We teach them how to do things on their own, and we try to motivate them to reach for the stars. There is no limit for them.
Hannah, as of right now, is very limited. She wasn’t given the gift of a healthy life. She was given an incredibly cruel, debilitating, painful, and extremely rare disease with not even a treatment. A disease that threatens to take her away from us when she is just a baby.
So, if she wants to fall asleep cuddled next to me every night and naptime instead of learning to fall asleep by herself in her crib, so be it. If she wants to not practice solid food eating after 2 minutes of trying, so be it. If she wants mommy every single minute which may take me away from household chores, so be it. Hannah gets what Hannah wants, right then, right there.
We continue with all her therapies because we want her to improve as much as she can before it is taken away. For most people, therapy is a means to learn skills to adjust to the future. Therapy, for us, is solely for us to have Hannah learn as much as she can before it can be taken away by the neurodegenerative brain portion of this disease. The more skills Hannah can learn now in terms of physical, occupational, and speech therapy, the longer it will take to lose them, and the longer we can keep her with us in hopes of finding a treatment.
If Hannah’s condition changes, and God I hope it does, then we will start teaching her to fall asleep by herself, etc. It will be harder to do at an older age than it would at this age, but heck, I will take on that role in a heartbeat! I would absolutely deal with cries and tears because she is made she has to sleep alone to fall asleep if that meant she would be able to be here with us for a longer time.
My husband and I both agree that our role as parents for Hannah is to keep her happy and keep her comfortable (and to leave no stone unturned in trying to find a treatment). That’s it. We aren’t going to plan for her future, because when the truth stares in our face, it breaks our heart. We don’t want to plan for THAT future. Unfortunately, that is the future that this disease brings.
So yes, we will continue to raise Hannah differently than Abigail and Ethan. In our hearts, we would love to raise them the same. Reality isn’t giving us that option.
Carrie- you know how to handle your own life situations in the way that works for you and your family. DO NOT let somebody tell you that what you’re doing is wrong. I don’t have any other kids but with Josslyn alone I parent her in similar ways that you do to Hannah. Our time is limited with our little girls and personally, I don’t want to have any more seconds taken away from us than we have to and I want more great moments than bad.
Keep doing what you’re doing mama! 🙂
<3 Lindsey
Dear Carrie,
Good for you! When I read your comment I thought “wow” how can anybody have an opinion on that. In your post you are expressing my thoughts too. To this day I always tell everybody that I do raise my kids differently. Victoria has more needs and like you all I want for her is to be happy as long as she is here with us. Yes, I spoil her to death, and yes she knows it too. But I don’t care what anybody says. I know that I wouldn’t do it any different. Like you, and she is 14 now, but if she needs me to hold her because she feels sick or just emotional, I don’t do anything but hold her. She goes first. Let the rest of the world think whatever they want to think. I am with you, and like always I will continue to pray for you all.
First of all, you don’t know me…But I pray for your little Hannah daily. I believe you are a strong woman with a strong family supporting your little girl.
Now to the people that criticize you and how you are raising your children…I wonder how they are raising their child that has Gaucher Disease, or any disease for that matter. If they don’t let them sleep with them or not worry about feedings. How are they raising their sick child? Or do they have to worry about that? Make them walk a mile in your shoes and see what they have to say then.
You are a strong and beautiful woman with more strength and courage than I can even imagine.
You and your family are always in my thoughts.
As parents, some are called to raise their children to be adults. And some of us are called quite differently, to raise our children for what seems to be a small and tiny purpose, in a miniscule amount of time. But our work is no less important.
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There is absolutely nothing wrong with living in reality and there isn’t a person on this planet that has the right to tell you otherwise. It’s sad that some people have the nerve to judge you or tell you what you should be doing with your child’s future. Incredible.
I have recently had a few critics myself, and I did the exact same thing you did…addressed them publicly. For those of us who put ourselves out there online with pure honesty, we’re bound to run into a few nay-sayers. I let them get to me at first, but by the third message I was laughing my butt off. They are so not worth it, and I was sure to let them know that if they didn’t agree with my honesty, they know where that little “X” is in the top right hand of their screen.
I apologize for not checking in for a while…been crazy lately. I still have her badge on my blog and I see that people click on it fairly often. God bless and best wishes to you and little miss Hannah.
It makes me physically ill to think that there is a person out there that would dare to question how you parent Hannah. My goodness, you go all out in seeking treatment for her and other kids, you love her with your entire heart. People are just stupid hon…. don’t let them get to you!
People are stupid. Even on a site that showcases how hard a mother is working to save her daughter’s life, that shows just how much she hasn’t given up on her daughter, some idiot will read one sentence or two and think they have the right to tell their ridiculous opinions.
I’ll help you get a pissed off mommy posse together and give this person a good smackdown.
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I LOVE your entry…I have been there and done that and it was worth every second I spent holding loving and cuddling my angels!!!!!!! I wouldn’t change it for anything. We are the ones who hae to live with how we care for our children, especially when we know that there time is limited! It doesn’t mean I love my others any less, they still had their time with me and they know they are loved just as much as ^Kenzie and Spencer^ were and are!
Heidi
Carrie,
Don’t even waste your time on explaining yourself to this person. And to the person that degraded Carrie’s parenting…… shame on you! NO ONE has the right to question you Carrie. One thing I learned from Greyson….. don’t judge others….. you just never know. You do what you have to, to survive during a child’s illness, PERIOD.
To the person that you made mad…… I think that person….. owes YOU an apology.
Keep your chin up!
Some people are absolutely un-believable! How stupid can they get? (Don’t answer that. Every time I ask it I find out that people are dumber than I give them credit for) How dare anyone question how you parent any of your children! I have 4 kids and I parent each and every one of them differently, and you want to know why? Because they are all different people! Parenting isn’t about cookie-cutter actions and pre-programmed training. It’s about being there in the trenches with our kids, learning who they are and helping to direct them to be the best they can be. It’s about adjusting to each child in each situation and doing the best we can. You have been dealt a blow that very few other people can even imagine and to be judged for the way you are handling it? Whoever made that comment should be ashamed of themselves. Deeply ashamed!
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Carrie, I am sorry that some people are so heartless and cruel as to judge you in carring out the most important task you have, loving your children. I think that all 3 of your children are exceptionally lucky to have you for their mom!
Hey, Carrie, we’re back!
Between your post on how you deal with strangers and this post, it’s like, WOW, Matt and I were JUST having these conversations! Great minds and all that. 😉
I think the fact that our kids LOOK normal throw people off. People wouldn’t criticize the parent of a Downs child for shifting from their expectation that their child will become a neurosurgeon like daddy someday. But, when we come to the same conclusion, we get flack?
We support our children–we mitigate their weaknesses and emphasize their strengths. We work every single day. We tirelessly search for treatments, even if cures are no longer open to us. We make our kids happy!
To me, helping your child be all they can be, *that’s* good parenting. And, you get an A+++ in my book.
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I wouldn’t be doing anything differently if I was in your situation. Love her love her love her and do the best you can for her with the situation you were handled. And as you say – if a cure or treatment can be found – deal with the hard changes then…you would be happy to have them as you say!
xoxoxoxo
You know your daughter best, and I know you will choice the best for her always. You are a wonderful parent, and don’t let anyone tell you otherwise.
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I am a mom of three children too. None of them is facing any signficiant health concerns and I have no reason to expect that they’ll lead anything but typical lives. And guess what: I parent them differently. My daughter has an anxious personality. She NEEDS extra physical contact, coddling at times of separation, reassurance at times of stress. My oldest son is a firecracker with a sensitive soul. He NEEDS reigning in, but recoils if I lose my cool. Kid gloves are on with the correction of that one. And then there’s my baby. He’s four, but he NEEDS me to rock him and allow him his blankie when he’s physically hurt. He can’t get through sometimes without a nap on my shoulder.
I personally think that any parent who doesn’t feed to the individual needs of their individual children should re-evaluate his or her approach.
AMEN SISTER!!!
Hi there,
God bless you for all you do your family. I wouldn’t do a thing different then you do. My daughter and I are very close most people are shocked at just how close we are. I breastfeed my daughter until she was 3 1/2 and I don’t give a darn what anyone thinks about it. She’s my daughter and I did what I had to. Granted when she got older she would only nurse at night. It was her comfort. I totally understand that you have differences in your children. Parents raise there kids differently because each child has individual needs so you have to meet those needs. Keep doing what you feel is best because that’s all that matters. You can say you fought for Hannah and gave her ALL the love she needs.
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You are such a good mama. You are loving and are giving Hannah what she needs. People who judge you have never held their baby through the night after a scary or painful medical procedure, have never lived the life of a mother who has to fight every single day to give her baby as good of a life as she possibly can. You fight the good fight, and provide inspiration to mothers who have children with rare diseases everywhere.
I agree with everyone else that everyone needs to parent each child differently. In your case with Hannah, there may not be as much time with her as the others–so of course you will want to spend every SECOND with her. No one has the right to criticize you for your parenting. You are a loving mom to all your children and that is what counts.
I must agree with the others. I parent my two children at times very differently, and I hope/expect both of them to live to adulthood. However, their personalities demand me to parent them differently to help them achieve what they are developing at any given point.
Personally, even if Hannah didn’t have a life limiting disease, I don’t see what is wrong with cuddling, holding, rocking, and responding to her needs. She is a baby, not even a year old. Personally, I don’t care even if my “normal” kids need me to fall asleep at night. I like the quiet time with them, and with my older one, I get to hear a lot of his views of life then that he normally doesn’t speak up about during the day.
Very well put. I am surprised and appalled that someone would say that to you. Of course everyone is entitled to their own opinion, but they should not insert their beliefs into your life because only you, your husband and God knows what’s best for little Hannah. I think you’re doing a fabulous job and you are planning in the way you should.
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I think your family’s views are realistic and loving. When you have a child with special needs, I am sorry but you live day by day. You are doing a great job of that. Hannah is beautiful and happy and well taken care of. You and your family are to thank for that. Keep it up. It is the small things. They mean so much–I am remind of this (as a stranger to your family) when I look at Hannah’s smile. You are a wonderful parent that is trying to find a cure and sharing and providing awareness. Keep it up! “Boo” to all the rest!!!!!!