Sunday, September 27, 2009

Emotional days...

Summing up the last 10 or so days, the details of Phoenix's issues are too complex and even if I launch into them it is nearly impossible to understand the magnitude of it. That is ok, I understand that this would/ has been the same for me in similar situations for people I love, watching them walk through complex medical issues. It jsut gets difficult at times to never have answers you really want and desperately need.

But the Truth is life is full of unknowns for all of us and we need to focus on the knowns and do our best to Trust God with the unknowns. It has been a challenging time, I have just come out of an emotional few days and every little thing, set back would break me into a sobbing mess. I can't explain it, which is probably the hardest part. Not knowing all that I am feeling, but feeling it immensely is hard for me.

In a nut shell Phoenix back was flaring up and we got a hard report from the ophthamologist. Phoenix's optical nerves are premature, that means they will not mature, so we know that he see's, just not how well. Since they didn't develop correctly, outside a miracle, these nerves will only continue to deteriorate. These are moments when I feel the most blindsided and heartbroken for him, not only will he already not have a normal life, of walking and running and all the many many life passions that are associated with this, but he will always have issues with his spine and now his eyes. As a Mother, I feel like I can handle a lot, but these things sometimes just knock the wind out of me and I feel broken for him. Then I come back to the question of what will normal look like for him and what if our definition of normal is wrong?

God knit him together just as he is and I don't believe he makes mistakes, so he must have so much to teach me through his life. Already I have seen and understood so much, and this journey has only begun. It is lifelong for us as a family, you as my friends and for strangers as onlookers. Amazing that one life can affect so many others with such magnitude. It is these truths that I have to find rest in or the road is too challenging to walk.

I am feeling better these last few days and the emotions that I was so intensely feeling have passed, yet the heartache as I write remains. I continue to ask, seek and knock, hoping that I can continue to see God in each of these times and know what he is saying and doing.

Mike is doing great in school, and we as a family are falling into a groove for the most part. Rowan has the hardest time with my 5 appointment weeks, which I understand, because they are hard on me as well. He is growing so much in his vocabulary and adorableness, we are enjoying him. We are looking forward to the Fighting For Phoenix benefit that my friends in Chicago have been planning, it is only less than 2 weeks away. Mike is thrilled that he gets to see all of his friends as he has not seen many of them for 10 months now. I am thrilled to see everyone, celebrate Phoenix, watch Rowan and Olivia see eachother again, and have a break from specialist appointments.

Love to you all and thank you for staying a part of our lives.your love and prayers give us strength daily.
Monday, September 14, 2009


Since last time, we had an intense couple of weeks. 5 appointments 2 weeks ago and 5 new specialists added to our life. I was tightly wond that week between the mess of our house, appointments, Rowan's melt down's and the anticipation/fear and many emotions with Mike returning to school.These times are revealing , about how and what I turn to in stress filled times. I wish that it was God more and outward controls less, but we are always learning and growing aren't we??? Needlesss to say come to the end of the weekend, our house was in order, Rowan was/ is more adjusted, he staerted to request to hold his baby brother, appointments were full of purpose and I was beginning to feel encouraged and ready for the week ahead. Thank God for Labor day =)

Phoenix had his first Dr. appointment at the military hospital, since we've been using the hospital that he was transferred to after birth. OVERWHELMING, but super helpful and efficient use of three and a half hours. Basically we met with a head Dr. who overlooks all his care and all his needs and he connects us with the right specialists and gets the appointments set up. So in addition to our Neurosurgeoun, Plastic surgeoun, Occupational therapist and physical therapists, is a neonatologist (oversees hois development beyond a peditrician's care, looking for all the problems related to Phoenix's diagnosis and the fact that he was a preemie), Opthamologist ( children with Mylemogincele tend to have issues with their eyes), Genecist (which we already saw and cleared him of any genetic/ chromosomal issues, thank God!!!), Peditrician, Urologist (they are re-evaluating Phoenix beginning to be catheridized, he has developed a kidney infection, which is a sign of him needing help draining his bladder sooner than his body is naturally)and a pediatric orthopedic ( to over see his progression of his feet and hips.

Phoenix encourages me daily at these appointments, he is so content and flexible. Making it so much easier and peace filled for me. We also had an ultra sound on his kidneys and hips two weeks ago, which is how they found out about the kidney infection. No news on whether his hips are still bilaterally dislocated still or not, the orthopedic doctor will go over that with me.

This past week was surprisingly great, it was the first week of me being a full time Momma without the stress of Mike being gone (boot camp) and me being pregnant. Let me say I LOVE being a Momma. It has been FULL of the Grace of God, I know that. And I am amazed at the fruti of all the prayers invested in our family. I have been able to enjoy the boys and feel on top of the house, which is a miracle for me, seriously. Pregnancy took a toll on me being the best me and once again I am left soooooo thankful for Grace and God's timing being perfect. I feared this past week and realized that we often fear the new seasons of life, but God is never too eartly or late when he releases a fresh ability to walk that new season out Triumphantly. I feel so triumphant and I love it. The challenges that I am facing on a daily basis become more a part of my life and less a stressful mountain to climb.

Rowan and I played in the rain, three days in a row and he loves it, so do I. Also I found an Elmo doll at a rummage sale and that is his new best friend, he treats him like Phoenix, laying him doen and covering him up as we do with phoenix and feeding him a bottle and snuggling with him, it's so endearing. He is a joy. These are the pictures I included.

In the moments this week that have felt like i just can't do it, I step back and ask for help. Help always comes, whether it is just a change in my selfish thinking or a readjustment of my heart, to remembering that Mothering and taking care of a home is a gift. Challenging as it is, I can still find joy and triump in every day if I chose to. My fondest memories of childhood were just being at home with my brothers and My mom being there, playing with us and overseeing life with us. Just the simple day to day that I can get so bogged down by, relationship is always the priority, not busyness. I want my kids to feel that way when they look back on their childhoods.

Love to you all and thank you for journeying with us in love, prayers and encouragement. It is an immeasurable gift to us.

If you are interested in coming to the benefit for Phoenix or would like to donate, here is the link with all the information. We will be there, which we are sooo excited about.

Tuesday, September 1, 2009

Life and LOVE, fitting them together...

Last week went by too FAST as they all do, and left me wondering how on earth me and the boys are gonna do the day to day without Mike around all day. We had five appointments this past week, all which were good reports but put a huge strain on Rowan and my relationship. He is having a hard time adjusting to all the changes that come with a new baby and one that requires so much of his Momma. We are experiencing multiple emotional meltdowns and covet your prayers, I find myself grasping for some Wisdom during all these outbursts and wonder how to meet his needs and still "do" all there is to "do".

Mike's parents were in town and they were great to be with and so helpful. Mike and I got much needed time together and attempted to gear up for this last week before he returns on Tuesday the 8th. Deep Breath, I do not know how it will all pan out, but I know the Grace of God covers me every moment of every day. That is Amazing!!!!

Phoenix's appointments went well, the biggest one was with the plastic surgeoun and much to my joy, we no longer have to bandage his back, fully closed and healed over. He still can not be on his back because of the risk of the bone breaking down the skin and coming through, which will always be a risk that we will have to monitor. We are working with our awesome Physical Therapist to figure out the right pillows and donuts to support him. Our boppy is working to prop him out without putting pressure on it for now. His feet are responding well to Physical therapy, I only have to tape and splint his right foot at night and his left (his club foot) is slowly progressing. And his shunt looks good, he'll have a head ultrasound in 3 weeks to confirm all the excess fluid is still draining correctly and their is no infection. He is slowly becoming a better sleeper, but I am amazed with how much he faces everyday and how well he does it, such a sweet and strong disposition.

This past week left me feeling overwhelmed and grasping for control by planning. That works for
people, but it always seems to be the unreachable for me, causing more stress in my heart and mind. God knows me sooo well and amidst all this I kept being reminded in my heart to take it one day at time and sometimes, one moment at a time. On sunday we were reminded by our Pastor, that life's one priority is LOVE and if we are living in love. Loving God first is our number one priority and everyone and everything else will be an overflow of that love. It seems too easy but it is sooo easy to get caught up in so many other "priorities" which only cause me stress. So taking a step back and focusing on what is important in this life one day at a time, LOVE.

Thank you for all your prayers, love and encouragement. We feel it everyday and thrive because of it.