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!
Monday, August 5, 2013

New every morning! Those Mercies sure sweep me up!

Since being home I was struggling with Exhaustion and the internal battle of having what it takes to walk this road all over again with our children. The hospital stay made me AWARE, too aware for my heart and minds capacity. I have learned to live in the moment, for the sake of protecting my mind and heart. If I think to far ahead it is to much to carry. 

If I stay in today, sometimes breath by breath I am a much more loving, compassionate and aware of others. In the medical world you can't live that way, everyone wants to remind you what's going on. For example, every nurse we had was baffled and wanted to talk about how on earth Genevieve was so functional as a "heart baby". How has she been at home with no machines or oxygen up into this point and then they insert a story with how there experiences with babies with a similar defect lived in the hospital. Or ultimately had a transplant or died. Yep, they are that Honest, I mean come on people, help a Mommas heart out! I know from experience in this world that Heart babies are some of the sickest and fussiest, that there quality of life is limited at best and that there parents live a VERY medically driven life. 

Well this is when I get to tell them about all of you praying and Believing for Genevieve and when I get to tell them about the promises I know whispered to my heart over her life. That she will live and that she will be "a woman of the people". To me she has become that, in her short little 5 months, she loves people, she would rather stare into someones eyes than watch any toy. Darling little heart winner indeed! 

So at home I struggled through and yesterday was exceptionally rough, Genevieve was unhappy, fussy and throwing up (which are all signs of shunt issues). So after figuring out the logistics we headed up to Children's Emergency Department and got her checked out. They did a shunt series, which x-rays and ct scans and everything looked good. Then they did a shunt Tap, which is where they take fluid out of the shunt to test for infection. They admitted us to wait on that culture growing and give her IV fluids and make sure she was not continuing to vomit. 

On the good side, she did well overnight and the cultures thus far have come back negative. The Neuro and Cardiology team are summing it up to post op drug rejecting, or a virus, that came and went fast. I am hoping and praying that is the case. We were up every hour snuggling, so sleep deprivation is in full effect again.

Somewhere in the process, between time with Mike on the way to the ER (so sad but true, where valuable time gets found in our lives), friends praying for me, a chat with a heart friend (who laughs with me at Hospital life, cause she currently is living here), and the perspective that Genevieve is Alive and that is in itself ENOUGH to Celebrate and remember daily. I have found breakthrough this morning in my heart. Time with people I love usually does that! You think I would know that about myself, still learning myself and learning to Believe in who I am in some ways too (whole other topic)!

I woke up with this verse on my heart and mind. I love it because it is true. When I can feel consumed by the overwhelming world of medical life, I am met just in time By God's intimate love, compassion and Amazing Faithfulness to help me again and again.

"Because of the Lord’s great love we are not consumed,
  for his compassions or mercies never fail.
23 They are new every morning;great is your faithfulness" Lamentation 3:23

Keep those prayers coming as this month is FULL of appointments and Dr.'s and we need time to prep in our house and mentally for this upcoming stint of me being away from home with Veve! Love to you all!
Wednesday, July 31, 2013

Nothing is as it seems. The LONG and short of it all...

Quickly trying to compose my thoughts into a post. The last few weeks were Crazy and hard. Not because of the multiple appointments we had but because of all the other details of relationships,emotions,good reports, sick kiddos, work and life that come at us and take us by surprise. Also, that I tend to run myself into the ground sometimes, at a pace that may be a little bit manic. Juggling all of life's different roles.

 I always say it's the little things that undue me, but the Truth is that I am undone much more often than I let on. Not because I don't want anyone to know, but more because in the day to day of life, what am I going to do?? Stop and call all those whom love me and tell them how many times I cried that week and why.
Well, those would be Lenghthy converstaions and would require all my energy and so much explaination of the many dynamics involved in a day here in my life. Also, they probably wouldn't benefit anyone, leave me and you feeling overwhelmed by the mountain of life and it's challenges and unknowns.

 I do want you all to know the honest parts of our life, I want my friends and family to really understand Spina Bifida and what that really looks like for our family and Congenital Heart Defects and how BIG it really is that our girls are living life instead of waiting on a list for another babies heart. Yet, I don't know how to do that, so bear with me as I figure it all out. Mike and I are met with questions all the time that seem simple by the person asked but in true reality are as long and and deep and wide as many things in this world. Medical lives are not black and white, they are very full of lots and lots of grey and maybe a splash of pink here or there ;) I want to answer them simply, but end up feeling like I have lost most people with in 2 sentences... SO I am going to add in info., to each of my blog posts and let your learn how you will with reading!

 But really here I am at the hospital and finally finishing up a blog post I started and saved in May. I can't find the energy or time for this in the midst of appointments, 4 beauiful darling babes, church life, 2 jobs and endless day to days of to do's. But I miss it so much. Here's the update for all the time I have been away!

Genevieve has been doing well overall, last week we had a Cardiology follow up appointment and her Saturations (oxygenated blood) was in the low 70's, this was a deep decrease from 3 weeks ago, she was in the high 80's- 90's . They have no sure answers but wanted me to return this week for another monitoring session, to decide if and how soon we need to move the surgery date. The consensus is a new date will be made. Cardiothorasic surgery will be calling to give me the new date today. Veve's first heart surgery is called the Glenn Procedure, the diagnosis is not (HLHS), but the surgery is the same.

While we were here for a visit, Mike requested that Neurosurgery set- up a head ultrasound, he had suspicion the last 3 weeks that Veve's shunt was not working to full par. She has been a bit fussier than usual, but it would be difficult for us to know what that is related to. Her head scan revealed that her ventricles were fuller than they should be, which means that she has too much fluid on her brain. Resulting in the Neurosurgeoun admitting us and surgery being scheduled for this morning.

So here I am on the other side of a sleepless night. Hospital stays are full of interruptions, beeps, questions, shift changes.... Then a little baby who can't eat for 6-8 hours makes for a Long night for sweet baby girl and Momma. However, though challenging, she did overall really well and surgery went great and now onto more decisions for the Dr.'s. Please keep praying for our little doll baby as the days draw nearer for the first heart surgery.

I feel prepped in my heart, which only means, I can wrap my head around it being the time close at hand. Here at the Pediatric ICU they are baffled that she has made it this long without the surgery! A little miracle indeed, keep those prayers coming. Specifically for the upcoming heart surgery and all the possible complications, specifically her lungs to cooperate, so that we will not live hospital life long. Stay tuned, hoping to have more answers in the Am, as to a specific date.

Thank you all we love and value your prayers and love. Snuggle those you love, appreciate the beauty of this moment, and Breathe deeper and let it go, whatever you are holding onto that is Stressing you out or Holding you back.