So you just found out your child has special needs. You probably think your world will never be the same...and you're right. It won't.
It might feel like the end of the world right now. It isn't. You will adjust, in time. Disability does not equal tragedy...though society may have told you so. In time, you will know different.
You may feel like you are on an emotional roller coaster. One day up, another down. That's natural. You're not going crazy. Enjoy the view from the top and when you're on the downside, be patient and wait it out. Be good to yourself. Call a friend who will listen and let you cry.
Your child will surprise you every day. He or she will bring you more joy than you can imagine right now when you are in this dark place. Believe it.
You will need to be strong for your child, but not right now. Right now it's OK to be vulnerable and feel the pain you're feeling. Though you'll always have your sad moments, they will grow fewer and farther between.
Hold your child as much as you can, but if you can't right now, hold your partner. Lean on each other. You'll find that you will take turns having your up and down moments. Be strong for your partner when you can, and when you can't let him or her be strong for you. Draw closer. You will learn more about just who your partner is than at any other time of your relationship. Pay attention. Love each other. Be patient with each other.
Tomorrow will be a brighter day...or maybe the day after. Give yourself a chance to grieve. Give yourself a chance to adjust.
What thoughts do you have for new parents?
8 comments:
Take what you research on the internet with a grain of salt. Every child is different so the outcomes will all be different. Don't be afraid to ask the doctors and nurses questions they are not mystical people with all the medical knowledge in the world. They are human beings just like you who don't know everything.
That is a great photo. Is it Kellen? He was a really cute baby.
My only advice to new parents is to not let therapy rule your life.
Great post. When Ellie was a baby at one point I thought, better enjoy this because it's the most normal it will ever be - meaning that in the baby phase I was doing all the things mothers of normal babies do (and then some). We had all these medical predictions of horrible outcomes before us and I was afraid of losing my beautiful baby to a disabled child I couldn't relate to. Then one day, another mother of a preemie who also sustained multilple disabilities said, "It's not like Ellie will turn into a monster. She will always be your Ellie." And so it is. I have grown in my ability to deal with our situation and understand it as she has grown. We have kept pace with each other and I, as I tell her daily, she's the best daughter a mother could want.
I also have to say, that after having survived Ellie's babyhood when she was on the brink of death a lot - it has gotten much easier. I hope it will for you too if you are a parent of a child who has had a rough start.
All good things, all good thoughts. I wish I had had someone tell me them when I was a new parent, and this: I wonder if I would have believed them. I think when you have a fresh Dx, you are experiencing a kind of shock, like the world as you know it isn't the place you are now living, and why should you beleive anything ever again?
But in time, these feelings settle, and you get your bearings. I often wonder how I could have had an easier adjustment, and if those things would help another parent. I don't know...I think much of this journey is personal, and individual. But putting the words out there, offering the good advice, being ready to help if another parent asks, these are all good, good things.
Thank you for the good work, Jodi! (Oh and I didn't respond to the posts about advocacy and education because I am out of my league there...but I was reading, and filing the info away for when we need it!)
Whether your child has a diagnosis or not, I remember stumbling around in a fog of sleep deprivation in those early days.
Yes, with a newborn, you are prepared to do everything for your child. It is only as the child continues to be totally dependent, or significantly dependent that the grief returns to haunt you.
Maybe you go through stages of grieving, as described by Kubler-Ross. One is denial. Another stage is bargaining. One is anger. Finally, you are supposed to get to acceptance. But I find I spiral down, again and again, into what I call "chronic grieving". The cycles are longer and longer these days--my son is now 12. He is an ex-preemie. He has some significant physical issues--hydrocephalus and asthma, but mainly he has cognitive disability.
Without a support system, you are a goner. Sometimes the daycare won't take a kiddo with disabilities, and your career is in serious jeopardy. These are big things to work out.
I think if you and your partner are NOT on the same page, it is a serious threat (see The Preemie Experiment blogspot post today, March 30.) You may have to adjust your marriage, even as you are adjusting your parenting style, hopes and dreams . . . Or you may need to split or see a counselor.
More grieving. Or anger . . .
Here is a technique I have that works for everything. I sit in a rocker, in the dim light or in a dark room. I am rocking myself and/or my kiddo. I ask myself:
If I were alone on a desert island, what would I do? That is, no other influences, no family influences, nor cultural influences, nor what-do-the-neighbors-think? It is just me--MY decision only. When I do this, I get in touch with my values and feelings, and get somewhat closer to a decision--a decision about how I feel, what I want to do, what plans I want to make or unmake.
Chris and Vic
I love the phrase: "Disability does not equal tragedy".
Seek out other parents and share your true feelings, your fears and worries, your triumphs and joys. I used to have this habit of sharing only the positive stuff; now I share everything, good and bad, because it's all part of the journey.
Heesun
Love, LOVE this post! Just as much as I am in love with the little fella in the bathtub :) Is it Kellen?
Advice? But yours is so good...and so eloquent!
Ummm...maybe this isn't an issue for anybody but me, but I don't recommend wailing like a banshee when your husband (maybe not in the most sensitive way) reminds you that it isn't about what is best for you, but what is best for the baby, and then trying to symbolically divorce him by furiously pulling at your wedding ring. At this point you'll probably discover it is stuck on your post partum, whale-like fingers of swollen blubber, and if you are lucky (like moi) you'll get to wear the scab sheepishly around for a week as a remembrance of your own childishness. But that is probably just me - LOL!
Note to new parents - everything worked out just fine :) Marriage and all.
No, I confess, that is not Kellen in the sink, that is baby Sebastian. The same cutie pie who is on the cover of the "Gifts" book. He is the most photogenic kiddo I know. Kellen at this age was full of scars and had a colostomy bag...not so pretty for pictures. Emily Elizabeth, your comment cracked me up!
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