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Special Needs
Grieving seems wrong but it's what I'm doing
My 10 month old daughter, M, is horribly delayed in all areas except her social development. Like at the 2-4 month level in all areas.
She was diagnosed with microcephaly. We're in the process of finding out if it's primary or secondary. She had an MRI today, she has had an EEG and we have a genetic blood panel out.
My H is grieving for the daughter he'll never have (in terms of the dreams he's had for her), and trying to see passed all of the negatives to the postives in her. He adores her and it's clear in everything he does but he's so devistated by this.
I'm grieving the the future we don't know. I'm so scared that she'll never know what it is to fall in love or be with someone. That she won't have her own family. That she'll never do all of the things i have imagined her doing.
She is the light of my life. She's wonderful, adorable, sweet, charming, and makes everyone around her smile. I'm trying to hang on to that and only that.
On top of it all, I lost my dad 2 weeks ago.
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Re: Grieving seems wrong but it's what I'm doing
***Work it Mama***
It is completely normal, you would surprised how many emotions you will go through, and how you end up back at grief.
As i'm sure you know the range of how your daughter will be affected is so large, you really shouldn't feel like all hope for her future is lost, just yet.
At only 10 months old, she is still at a very good age for early intervention.
Nothing at this age is cut and dry, we were told Peyton would never walk, and she does. Morgan doesn't have CP but she's on a 4 month gross motor level, none of it makes sense, but you have to have some hope you can find a happy medium between her diagnosis and her future possibilities.
The parents who refuse to except defeat, are often the ones who push their children the hardest and farther than any others.
My main piece of advice would be to never feel like you can't second guess your doctor(s), sometimes a second opinion is completely necessary so don't feel like you are 'cheating' on the doctor, or anything like that. You are the only advocate for your little girl, so always feel 100% with what you are doing to help her.
Im sorry you have to go through this, please let us know what the MRI says,and hugs.
I'm also sorry for the loss of your father.
PS (the thing about her never having her own family, etc. I worry about that everyday for Peyton, i've actually found a little boy who has some of the same bladder problems that she does, and he is 4, so it does give me hope to know that their is a little boy out there, who would understand her, and love her for who she is).
We're in the same boat you are. DS has microcephaly and an x-linked genetic disorder, hypertonia and associated movement. He's delayed in every aspect.
Grief is normal. It's healthy. It's what you're supposed to be doing. It's a process that takes time, and you're going to go from being angry to depressed to almost accepting. Then something will happen and you go right back to the beginning. It's one of those 1 step forward 2 steps back kind of thing. But then, all of a sudden you'll notice that the delays and difficulties take a back seat to life and love. You'll realize you're made it through to the other side of grief (acceptance), not unscathed, but better than you were when you started.
If you notice that the grief, depression, anger are getting in the way of caring for you or your child please talk to someone, a friend, counselor, or your doctor.
We've all been in your shoes. Some of us are in your stage right now, and others are trudging their way through the special needs muck. If you ever need someone to listen the ladies on this board are some of the most accepting, understanding, and kind women I've ever talked to.
I also found it to be true that men take longer to get through grief. Maybe it's their lack of estrogen, but they seem to get stuck on the physical aspects much longer than women do. Give him time. My DH (as I was too) was devestated by all of the issues with DS. But in time (I would say it took about a year) he's where I am, accepting and just hopeful for the future.
There is a plus side to special needs...It's amazing to watch your child accomplish something the doctors say they would never do. You'll revel and celebrate tiny little accomplishments and milestones. The ones that parents of typical children browse right over. (The day DS picked up the remote and stuck it in his mouth! I think we bought a cake...okay not really but I felt like it).
Just know, you're not alone and please allow yourself to grieve and cry. We're human. It's hard to change yourself let alone all the hopes and dreams and expectations we have for our children.
My daughter was diagnosed with Schizencephaly and septo-optic dysplasia at 30 weeks pregnant. We were told she would be born very limp and possibly need help breathing and eating. That she would have a form of mental retardation and never be able to do things on her own. This absolutely killed me.
She is now 1 month and 4 days, she was perfect when born and still is. We had a recent MRI and EEG, still the same findings we first saw in utero. Neurologist said she may have a hard time with simple things as holding her head up and sitting up, which she is already starting to do.
My point is, the doctors DONT know. The human brain is capable of so much and no science can say what WILL happen. We have prayed and prayed for our daughter and thats all you can do along with believing in them and loving them. Your daughter is still so young and she will continue to grown and develop. I learned not to even think about her diagnosis. And look at her like any other child without a diagnosis. Its very hard sometimes especially when we have to talk to the doctors.
I recommend early intervention. At least you know what the diagnosis is early so you can do everything to help her along.
Dont give up hope on her, the mind is an amazing thing. And with caring loving parents she is sure to have a great life ahead of her. Try not to think of what she MAY not be able to do in the future ( I still do that sometimes ill admit ) its scary and no one wants that for their child. But you need to be strong for her, take it one day at a time. Dont grieve about something you dont even know will happen. If you need someone to talk to you can inbox me. Also if you are on FB there is a group called Parents of kids with neurological disorders. They are so supportive and informational and have doctors within the group to talk to as well. Its helped me alot.