Had a very significant multidisciplinary appointment for my nearly 11 y.o. daughter today where we were told, regardless of the outcome of the big surgery we thought she was having, she'll probably never walk independently. It rocked me and the grief is real. I think my expectations were a little too high, but I never saw this coming. Times like this I'm forced to go back to her traumatic birth and the very real moments where I held her and begged her to live. It's the only thing that gets me through these hard times. We didn't have to bury our tiny preemie. We got to bring her home. Perspective is necessary, but I will grieve for the future that will be so much more challenging for her than her peers. I grieve for the childhood that is starkly different than that of her classmates. This sucks, but she's alive.
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I am terribly sorry about this outcome. On the other hand, she is loved and cared for by a considerate and caring mother. As DeathofRats just posted, what is not possible now may be in the future.
My only comment is that there are hella smart people working in science and what’s not possible today might be possible in the not-too-distant future. Best wishes for her health and happiness.
I’m so sorry. Have you read the story about Italy Vs Holland.? It talks about how you dream, yearn for , save for Italy, but instead you get Holland. Holland is nice, beautiful , but it’s not Italy. Your daughter was given to you, because YOU are the parents’ she needs. With your guidance, determination, and love , she will accomplish amazing things, whether she is standing or sitting. I know it’s a heartache, we all want for our children, everything. You will give her everything SHE needs. I wish all of you great luck , joy and peace
That is really tough, and of course you will be grieving.
I know a couple who have twins, and one of them is fully abled and the other one is not. I'm sorry, I don't recall the name of the other girl's condition, but she is unable to walk or to speak. When these girls were about 4, I was at a birthday party for the girls' cousin, and some of the kids began chasing each other around the tables. Mom picked up the daughter who can't walk and they ran around the table chasing the other kids, and I will always remember that girl's screams of delight and giggles, and the look of joy on her face. Her life is different, but it is nonetheless joyful.
My adult son is profoundly autistic, and will need assistance for the rest of his life. We learned of his autism when he was about 18 months old, so I’ve had 26 years to grieve on his behalf. This does not qualify me to understand your situation, but I can say the following:
1. She’ll adapt better than you.
2. The grief will ease. Not completely, but it will be manageable.
3. There will be joy. I can never have a complex conversation with my son, but he still makes me smile. It’s what kids do.
I’m not gonna tell you it’s easy, just that it’s possible.
I am so sorry to hear that. Sending you and your daughter hugs and love.
I spent 10 years in a wheelchair unable to walk. My broken leg would not heal, no matter what they did.
She will be fine, she will adapt. Yeah there will be hurdles but we can overcome anything. I know it's a shock, my parents never talked to me about it, ever. I was treated exactly the same as before. But I used to get glimpses of their pain, in their expressions. I always thought it was harder on the people who loved me than it was on me. They had to watch, not knowing, where as living it seemed not as hard.
You've been hit with an awful shock, but it will get better. You still have her. And don't give up, one miraculous day my bones started growing again, who knows why.
My biggest hug!
I am so sorry, that must have been really hard to hear.
It is absolutely okay and valid that you are grieving what could have been. When we become parents, I think all of us have some vague idea of what we think their life (and by extension ours) will be like. And sometimes, it works out like that. Far too often though, it doesn't. So we need to adjust, we need to figure out what we need to do to minimize those challenges that we know our child is now going to face.
I have no doubt that you will take this in stride. It's very clear that you love your daughter and honestly, that's the best thing you can do. Love her for who she is and she will thrive no matter the challenges.
Plus medical science is advancing all the time. Maybe one day there will be a surgery or a technology that can help her walk independently. Remember, cochlear implants were once considered science-fiction and now they're pretty common.
Be kind to yourself. Try not to worry too much about what 'will be' and instead focus as much as you can on the present. We're all here for you and cheering you and your daughter on! You've got this.