Monday, October 21, 2013

Teaching and empowering our Children to LOVE !!

A friend asked, " How do I teach my children to talk with Phoenix, and enable them to be his friend instead of being awkward?" I have thought about this post for a few days now. I love time to process what is the BEST way to teach others espiecially our children how to embrace others with wide open arms and still be true to the thoughts and questions they have.

I would answer this question differently than some, but here it goes. Phoenix is a Gift, just like your child is a gift. He is a little boy and can be treated just like any little boy when interacting. Get down on his level if you want, don't if you feel more awkward. Ask your questions, let your child ask theirs (awkward, unsure or even seemingly rude, I love a childs mind and I have really THICK skin) I so value these moments as oppurtunities to learn together and grow together in loving eachother. Children want to talk about there day and what they Love and how they are doing. Phoenix LOVES to chat it up and engaging him is a delight to him and us! Maybe one day you'll meet a family who aren't open and seem cold, I would say still be warm and kind and give words of Courage ( you are a beautiful family, what a treasure your child is, amazing how you love and care for him/ her) believe me for every kind word, there are probably 50 not so kind words, stares or questions they have received, that hurt. Please don't whisper, glare, point, stare a little too long or fear him or us. That only makes us all feel seperated and divided in our differences an opens no new doors of conversation or understanding.

I want to say that I believe Children to be tender and curious and that they are honest in there questions and I have not yet found this to be offensive, but beautiful and leaves me with oppurtuities to love them and my children so much more. I have found that often us as adults are the ones who struggle more with the whys and hows and Awkwardness. Even I, a seasoned, Compassionate Momma feel overwhelmed or unsure of  how to handle a Momma in a delicate medical situation or diagnosis. I analyze ( I don't want to come across overly positive or negative or make them feel like I am pitying there child) on elevators and miss the oppurtunity to bring hope or joy often.These are ALL reactions I have felt and swam through.. I am learning and growing and stepping out even if I fail and I have found some of the richest, most satisfying moments in just loving others and encouraging them that they are doing a great job loving there precious babies and some of the dearest friendships have formed in these dark moments of sharing life at a hospital.

Let's be people who advocate for the Beauty of God's perfect knitting together (perfection is not a child who can do everything we value on this earth, like running and talking and....), as all of you know from our Families life, God's ways are not ours, but much more Beautifully Purposeful. I would not trade out my darlings for anything, oh how they have made me a much better Woman and Momma, and how they are making you a better lover/giver/ friend of one another! God is Brillant indeed and His plans so far reaching!

Tuesday, October 8, 2013

What is Spina Bifida??

Since I have renamed October (see FB post if you are not sure) and want to help answer questions and help others understand what Spina Bifida means in our family. I thought where better to start than with what is SB?!! I found this snippet  attached at the bottom, but before you read that  here's a little note from Phoe.

Hi, I am Phoenix, I am 4 years old. I love my family, BIG, I can't stop wanting to be with them and a part of everything they are doing. I love conversation and Music, ohh I love Music, especially fixated on guitar these days. I watch music videos and try to mirror the guitarist's fingers on my Papa's ginormous guitar. I LOVE my Papa, he is my legs and my goofy, anchoring and understanding confidant. I light up when new people make time for me, I have a Fabulous smile and the Best laugh, that's what others tell me. I am super sensitive in my heart. And sensory sensitivr when others are too loud or make sudden unexpected noises. I work hard everyday to do life and some days I am emotionally drained from simple things like moving my wheelchair. On those days I whine and cry A LOT. I have breaks to recollect myself and snuggles help too... Really I am just like you, our differences are many, but none are big enough to not Celebrate each other! I just have a lot of extra people in my life on a weekly and monthly basis (6+ specialists, 1 Physical Therapist and 1 Occupational Therapist), some surgeries and some life long medical challenges. This is just my body and it can't do everything yours can, but the heart and spirit of me are strong and beautifully complex (just like you).

Oh and I have a pretty special Sister, her name is Baby Genevieve and she has Spina Bifida too. I think she'll walk one day and I LOVE HER! I am always wanting to hold her and protect her. I know we'll bring each other great joy and in sharing the challenges of Spina Bifida we'll be able to cheer eachother on. You'll love her too, she's a little bit like me.

What is spina bifida?

Spina bifida is the most common neural tube defect (NTD),
a birth defect of the brain and spinal cord. The most severe
form of spina bifida, known as myelomeningocele, results
in a sac-like lesion along the spine where the spinal cord
and the nerves are open and exposed; there is no protective
skin or backbone covering. The less serious forms of spina
bifida are meningocele, in which the spinal cord itself is
not damaged but its protective covering is exposed, and
spina bifida occulta, in which only the bones of the spine
are malformed but the nerves and spinal cord are normal
and covered by skin. Throughout this information sheet,
the discussion of spina bifida will be largely focused on
myelomeningocele, the most severe form of the condition.
The damage caused by spina bifida varies, depending on
its location along the spinal column and to what extent
the spinal nerves are affected. About 80% of spina bifida
lesions are on the lower back.

Spina bifida can be surgically repaired after birth, but the
nerve damage is permanent, and can result in paralysis,
sensory loss, learning disabilities, difficulty with bowel and
bladder control, orthopedic problems, and hydrocephalus,
an accumulation of the fluid that is produced by the brain.

Next up will be how to talk with your kids and help them and (you ;) know the Best way to love those who have Spina Bifida or anyone "different outwardly" really!