Seven Secrets of A Special Needs Parent
I think many times I write about the ups and downs of Celia's and/or Gianna's medical issues, and I fail to mention the most AMAZING things I have learned from having two special needs kiddos.
So here goes nothin'....
1) We PAAARRTAY often.
Yes, I am a middle aged party-girl.
Who knew?!?
Ahem.... No comments boys!
From pre-surgery guacamole fests, to, "You held your head up for 30 seconds" or, "Let's make ourselves completely insane and buy a puppy for surgery #10"..... we see life's joys just a tad differently and we CELEBRATE.
I just love the spontaneous trips for ice cream, the stay up late giggle parties and the princess parades that we have to celebrate milestones that no one else would think of.
And don't worry- our healthy kids give us lots of "normal" milestones that we celebrate too.
Add it all together, and well, we PARTY!
2) We aren't in a rush.
In fact, I wish time would stand still.
To be honest, I don't want the girls (any of them!) to grow up. Since we know all too well that tomorrow isn't guaranteed, we tend to focus on the good in today. While I am excited about our Disney trip next year, and other special family gatherings, to be honest, I really had a great day today reading to the twins and singing to them at bedtime. I know they are growing into beautiful young ladies, but I'm not in a hurry for that to happen.
We also have learned not to rush, well..... anywhere. With oxygen, g-tube supplies, diapers, wheelchairs, changes of clothes, and emergency medical supplies, we just can't be in a hurry or we will forget SOMETHING.
I have (mostly) given up the stress of rushing out the door. Let's face it.... It AIN'T GONNA HAPPEN!! So why freak out? We start early, and leave home early and deal with the unexpected bodily fluids in due time.
Remind me of this tomorrow would ya? HA!
3) We don't care.
Well, we don't but we do.
How's that for confusing??
While the stares sometimes annoy, and a few comments bring me to tears, (A total stranger who used to be a PT told me a few weeks ago, "You know how this is going to end, don't you?)
Yeah, that stings.
But otherwise, I have ceased to worry about the rude stares and comments. I really used to be a people person, so this is a milestone step for me.
Yes, we have cords, CORDS everywhere, and I understand why people are curious. I would be too if I didn't understand why she needed all the stuff she does.
I'm totally okay with curious.
It's the "I'm so sorry" sympathy stares that don't bother me anymore.
And that's a REALLY GOOD thing.
4) We measure gratitude by a different measuring stick.
A medically good day, a HAPPY GIRL day, or a healing incision all make my heart bubble over in gratitude to my Lord.
It don't take diamonds to make me happy- just give me a healthy day with my kids.
(But feel free to get them for me anyway Honey!)
5) We have met some incredibly AMAZING people. Celia's teachers and therapists. Gianna's anesthesiologist, Lucy's parents,the children in the hospital beds next to us,ballet teachers,Doctors, Nurses and our family members who care for us and our girls EVERY. SINGLE. DAY.
I often think that Gianna and Celia have opened our eyes to a WHOLE NEW WORLD via hospitals and Doctors.
Before I had special needs sweeties, I never realized that sick kids and their families are really AWESOME people to be around.
I feel so blessed to know some really amazing people who love and care for these precious babies like their own. And who can totally see past the physical limitations to the person inside.
6) My children, ALL of my children are heroes in their own special way.
A big brother and sister who search for sensory toy stores for just the perfect gift for a sister who plays only with her toes.
A grown son who tells me that when he wants to give up at anything, he thinks of Celia for the motivation to keep going.
A big sister who makes special crafts and writes poetry to her sisters who aren't healthy like she is.
A girl who has never had one medical issue and yet, lovingly knows how to comfort beyond her years.
A little girl who faces each and every surgery with bravery and calm.
A little bundle of SUNSHINE who is JOYFUL daily when her body does nothing she wills it to do.
A brother and sister who have made it their job to know the ins and outs of Celia's medical routine to help care for her so we can get a much needed break.
A twin sister who will ALWAYS get down on her level. Laying on the floor to be near Celia, she talks for her twin to tell us what she thinks Celia wants but cannot say.
I think these special needs sweeties have brought out the good in all of us.
No, I KNOW they have.
7) We have a BIG SECRET that I never knew existed before God blessed me with my special needs darlings.
And, I'll share it with you.
Beyond the flopping head, and the drool, and the wheelchair with the IV pole dripping formula into her tummy, and past the tape on her face holding oxygen cords, there is a beautiful little girl who has SPUNK and ATTITUDE and JOY.
A little girl who loves the color pink, and squeals when she sees the pool, and who loves her Daddy and pines for him when he is not at her beck and call. A girl who warbles and chatters to herself, and who is pretty amazing using her feet to do what her arms cannot.
A little girl who, in her tiny little hands, has gripped each person's heart who has dared to look past her physical limitations and see the beautiful child inside.
My life is RICHER because I have these precious babies to teach me daily life lessons that I would never have had the privilege of learning.
And so,the big secret is this:
When I get the "I'm so sorry" looks, I can give it right back.
Because they obviously don't know what I now know.
"I thank God for my handicaps. For there I have found myself. My work. And my God."
~Helen Keller
So here goes nothin'....
1) We PAAARRTAY often.
Yes, I am a middle aged party-girl.
Who knew?!?
Ahem.... No comments boys!
I just love the spontaneous trips for ice cream, the stay up late giggle parties and the princess parades that we have to celebrate milestones that no one else would think of.
And don't worry- our healthy kids give us lots of "normal" milestones that we celebrate too.
Add it all together, and well, we PARTY!
2) We aren't in a rush.
In fact, I wish time would stand still.
To be honest, I don't want the girls (any of them!) to grow up. Since we know all too well that tomorrow isn't guaranteed, we tend to focus on the good in today. While I am excited about our Disney trip next year, and other special family gatherings, to be honest, I really had a great day today reading to the twins and singing to them at bedtime. I know they are growing into beautiful young ladies, but I'm not in a hurry for that to happen.
We also have learned not to rush, well..... anywhere. With oxygen, g-tube supplies, diapers, wheelchairs, changes of clothes, and emergency medical supplies, we just can't be in a hurry or we will forget SOMETHING.
I have (mostly) given up the stress of rushing out the door. Let's face it.... It AIN'T GONNA HAPPEN!! So why freak out? We start early, and leave home early and deal with the unexpected bodily fluids in due time.
Remind me of this tomorrow would ya? HA!
3) We don't care.
Well, we don't but we do.
How's that for confusing??
While the stares sometimes annoy, and a few comments bring me to tears, (A total stranger who used to be a PT told me a few weeks ago, "You know how this is going to end, don't you?)
Yeah, that stings.
But otherwise, I have ceased to worry about the rude stares and comments. I really used to be a people person, so this is a milestone step for me.
Yes, we have cords, CORDS everywhere, and I understand why people are curious. I would be too if I didn't understand why she needed all the stuff she does.
I'm totally okay with curious.
It's the "I'm so sorry" sympathy stares that don't bother me anymore.
And that's a REALLY GOOD thing.
4) We measure gratitude by a different measuring stick.
A medically good day, a HAPPY GIRL day, or a healing incision all make my heart bubble over in gratitude to my Lord.
It don't take diamonds to make me happy- just give me a healthy day with my kids.
(But feel free to get them for me anyway Honey!)
5) We have met some incredibly AMAZING people. Celia's teachers and therapists. Gianna's anesthesiologist, Lucy's parents,the children in the hospital beds next to us,ballet teachers,Doctors, Nurses and our family members who care for us and our girls EVERY. SINGLE. DAY.
I often think that Gianna and Celia have opened our eyes to a WHOLE NEW WORLD via hospitals and Doctors.
Before I had special needs sweeties, I never realized that sick kids and their families are really AWESOME people to be around.
I feel so blessed to know some really amazing people who love and care for these precious babies like their own. And who can totally see past the physical limitations to the person inside.
6) My children, ALL of my children are heroes in their own special way.
A big brother and sister who search for sensory toy stores for just the perfect gift for a sister who plays only with her toes.
A grown son who tells me that when he wants to give up at anything, he thinks of Celia for the motivation to keep going.
A big sister who makes special crafts and writes poetry to her sisters who aren't healthy like she is.
A girl who has never had one medical issue and yet, lovingly knows how to comfort beyond her years.
A little girl who faces each and every surgery with bravery and calm.
A little bundle of SUNSHINE who is JOYFUL daily when her body does nothing she wills it to do.
A brother and sister who have made it their job to know the ins and outs of Celia's medical routine to help care for her so we can get a much needed break.
A twin sister who will ALWAYS get down on her level. Laying on the floor to be near Celia, she talks for her twin to tell us what she thinks Celia wants but cannot say.
I think these special needs sweeties have brought out the good in all of us.
No, I KNOW they have.
7) We have a BIG SECRET that I never knew existed before God blessed me with my special needs darlings.
And, I'll share it with you.
Beyond the flopping head, and the drool, and the wheelchair with the IV pole dripping formula into her tummy, and past the tape on her face holding oxygen cords, there is a beautiful little girl who has SPUNK and ATTITUDE and JOY.
A little girl who loves the color pink, and squeals when she sees the pool, and who loves her Daddy and pines for him when he is not at her beck and call. A girl who warbles and chatters to herself, and who is pretty amazing using her feet to do what her arms cannot.
A little girl who, in her tiny little hands, has gripped each person's heart who has dared to look past her physical limitations and see the beautiful child inside.
My life is RICHER because I have these precious babies to teach me daily life lessons that I would never have had the privilege of learning.
And so,the big secret is this:
When I get the "I'm so sorry" looks, I can give it right back.
Because they obviously don't know what I now know.
"I thank God for my handicaps. For there I have found myself. My work. And my God."
~Helen Keller
What a wonderful post. So true and it is amazing how God shows us things we never thought was possible.
ReplyDeleteYou are so right! Godbless u guys!
ReplyDeleteLove you and your whole family...always have, always will :)
ReplyDeleteAnd the pictures in the post below are awesome :)
I commenting on this again because I thought I had your email address, which I don't. This was the only other way I thought I could email you. Thank you so much for the great comment on my blog. A dear friend of my posted a comment to your comment that I thought you would like to read. God bless you.
ReplyDeleteLove that picture SO happy!! You are one incredible mommy :)
ReplyDeleteYou allowed the rest of the world see your heart this day, thank you for that because it is truly a gift!!! Special needs kids and parents of special need kids unwittingly provide special blessings to the rest of the world as we observe what God is doing through the incredible love and care you bestow upon one another. We are, indeed, blessed (not to mention thankful and proud!) grandparents.
ReplyDelete