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4 lads mom
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| Posted: Jan 05 2010 at 8:12am | IP Logged
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I wrote a post on my blog about balancing your emotions with the work at hand in managing the care of a special needs child.
Do you struggle at times with balancing those emotions of grief and such with the work at hand? I am much better at it than I used to be....and finding joy in the midst of trials. I am not perfect, but am curious if others stand back sometimes and go, “Gosh, this is a lot to deal with!!” and try not to stuff those emotions, but at the same time maintain a healthy balance. Meditating on Mary, and her Sorrows and struggles.....but her peace and joy...the end game, the purpose.....that all helps.
Is this clear as mud? 
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Mom of four brave lads and one sweet lassie
Scenes From This and That
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Nina Murphy
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| Posted: Jan 05 2010 at 10:02am | IP Logged
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Exactly. But Mine tend to go in one direction or another at one time (and stay in a scary "fixed" emotion of dread or conversely, a general spaced feeling of "what's the big deal") until things get off on to another pertinent subject at hand in the family.
In a word, a true blessing at these times to have a large, large family. I think it is the best thing, as counterintuitive as it seems to most people, for special needs children, their mothers, and their families....to keep having children and be surrounded by others with very real needs, as well. It is one of the most difficult things in the CF world (in terms of relating to the medical and online community) that most people stop bearing children after the diagnosis. It is considered cruel, or crazy.
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God bless,
~~Nina
mother of 9 on earth,
and 2 yet-to-be-met
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4 lads mom
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| Posted: Jan 05 2010 at 1:07pm | IP Logged
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So beautifully put, Nina....I really, really get that. I have been asked so many times, “So....did you know she had problems before she as born?” It might be asked in a seemingly innocent way, but the message is clear. 
A lot of our providers have raised their eyebrows at our large brood, with multi involved kids..but when they get to know us, they love my kids and aren’t so judgmental.
Thanks for sharing...
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Mom of four brave lads and one sweet lassie
Scenes From This and That
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drmommy
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| Posted: Jan 06 2010 at 10:07am | IP Logged
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I will post more later, but I just read your poem on your web page. Beautiful, and explains everything so well, the feelings and emotions.
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Waverley
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| Posted: Jan 06 2010 at 1:35pm | IP Logged
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I too really enjoyed your blog post. Your poem sums it up so well.
And Nina, I agree there are tremendous benefits in having special needs children in large families - benefits for the special needs child and for the typical siblings as well.
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Waverley
wife to Dh for 19 years, dd (16), dd (11), dd (8), ds (6), dd (4), dd (9-13-1996)
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melanie
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Oh, absolutely...absolutely. Especially when I get bogged down in thoughts of the future, what will happen to this child or that one as they grow up, will they have a "normal" life, what if they can't, etc....our most significant issues at the moment are with our autistic 5yo, and I handle it well most of the time,,,I just think he's great! He's such an awesome kid, and even his "symptoms" are some of his most endearing traits. But then I'll be laying next to him when he's falling asleep and obsess about such thoughts...what would he be like if he were "normal"? Was he born this way? If not, when did things change, why didn't we notice sooner? And how unfair it is for him that his life will be defined by the limits of this? Anyway...you get the picture... 
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Melanie
homeschooling Maria (13yo), Kain (10yo), Jack (5yo), Tess (2yo), and our newest blessing, Henry Robert, born 4/23!
slightlycrunchycatholic.blogspot.com
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drmommy
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| Posted: Jan 06 2010 at 10:07pm | IP Logged
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Yes, I do get sad sometimes, especially when I think about Mary's future. Her lifespan is not long, and it is 90% chance she will have seizures. I get overwhelmed with the paperwork and doctor visits (esp when I have two days off only to book them), let alone homeschooling a little one who is developmentally delayed. Then, because her condition is rare, fighting with everyone trying to get her services.
I get a little sad when hubby doesn't have the same level of patience as me, or when my friends just don't "get" the amount of time I have to spend with her in schooling and life lessons.
So, yes, it is difficult to balance all the emotions and all the extra work and grief. It truly wears on your heart and mind. I get overwhelmed a lot, but keep going on...plugging through. I always feel like I have to be strong for her and for my other children.
After I had her, I couldn't even pray. But, I did finally manage to pray for strength. That's it. Now I look back and I can't believe how strong I used to be, or the perserverence I had! Wow! THAT was the Holy Spirit!!
She is now 7, looks and talks like she is 4, but such a sweet and loving child. She keeps me focused on what is true and real in life. Yes, I still pray for continued strength, especially when I see a "normal" 7 year old...I am floored! It sometimes gets hard. Or when others say, "she seems ok to me!". That sometimes bothers me, because I feel like people are trying to make me feel better, but I DO know my child! Others forget she is 7. Well, I can go on and on.
But, I do get sad a lot, and it is usually when I leave the doctors' offices, because the doctors do not want to say too much to me; most doctors do not know anything about her diagnosis, and I truly don't have the time to do research, or to drive to UCLA for some specialist.
I just take one day at a time...really. In fact, I hate it when people ask me about things next week, because I have no idea unless I look at my calendar. So, one day at a time...lots and lots of prayer and fasting....lots and lots of patience, strength, perserverence, and peace. Lots of Rosaries. And, lots of prudence when talking to others.
As time goes on and she gets older, I am getting better about the sadness. I just am afraid I will freak out if another huge cross is added to my collection!! But, I figure the Lord knows what we can handle...man, He trusts me more than I trust myself!
Oh, and yes, I sometimes do take a step back and say, "wow...this is a lot to deal with...can't believe I am doing it". Trust me, I am a lot more easy going than I used to be...just a side blessing from dealing with her disability.
Hang in there. Humor helps me a lot. I don't want my children to remember me as a sad, mad, and angry, depressed Mom!
God bless you.
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stellamaris
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| Posted: Jan 07 2010 at 2:41am | IP Logged
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sometimes I get scared, sometimes sad, sometimes even angry...your poem says it all so well
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In Christ,
Caroline
Wife to  dh 30+ yrs,ds's 83,85,89,dd's 91,95,ds's 01,01,02,grammy to 4
Flowing Streams
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SimplyMom
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| Posted: Jan 08 2010 at 10:52am | IP Logged
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I think one of the important things to remember about being the parent of a child with struggles beyond the norm is to keep feeling your emotions and dealing with them instead of letting the stack up.
I know there have been times when I have shut down to my own emotions and it always catches up to me in the end. Support groups really aren't my thing, but I know they work for some people. For me journaling helps me deal with the emotions so I can continue to work in action, thought and prayer.
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Darcee
SimplyMom from Simply Catholic
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Nina Murphy
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| Posted: Jan 10 2010 at 11:56pm | IP Logged
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SimplyMom wrote:
I think one of the important things to remember about being the parent of a child with struggles beyond the norm is to keep feeling your emotions and dealing with them instead of letting the stack up.
I know there have been times when I have shut down to my own emotions and it always catches up to me in the end. Support groups really aren't my thing, but I know they work for some people. For me journaling helps me deal with the emotions so I can continue to work in action, thought and prayer. |
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Thank you for reminding us of this. 
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God bless,
~~Nina
mother of 9 on earth,
and 2 yet-to-be-met
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4Real Forums : Special Blessings
Topic: Do you ever feel like this?
