This blog has been on my mind for weeks. One Sunday morning right before the New Year (2014) began, Mike and I shared at our Church, we talked about how this had been the HARDEST year of our life and how thankful we are for the support, care and Love we receive from all those that walk side by side in prayer, practically, care, love and friendship. That the Grace and Faithfulness of God overwhelms us in the midst of the deepest places of whirlwind life and heartache.
So yep. When I said out loud this was the hardest year of our life, it was like something burst open. I unlocked some secret vault that I had locked with bolt and key to just get through the last few months. Let's call that Vault PROCESSING and Reality. You see sometimes in the midst of juggling surgery, Dr.'s Appointments, Mike's schooling, Working and the day to day of our darlings. I forget that I matter and that our life is Distinctly different. Crazy right. I think our life is just like everyone Else's. I KNOW!!! My closest remind me again and again it's not, but I forget, because it is my Normal. I also live in a place of seeing that all of us face challenging days, life circumstances and juggling, and never ever want to compare or make lesser of that reality.
ALL of that to say, from November of 2012 till December of 2013, we balanced multiple specialists appointments {2-3x a week 2-4 hrs at a time}, unknowns and craziness during my pregnancy, on top of Phoenix appointments {therapy 4x a week and Dr's apptionments. in Milwaukee at least 2x a month}. All while running a business and Mike being a full time student. YESS. the GRACE of God is sufficient. Then in February of 2013, our darling Genevieve graced our worlds, but this opened another layer of Specialists and Dr's and Surgery and therapies. We never Fully adjusted to the fact that Veve is "Special Needs" and though we have experience with Congenital Heart Defects and Spina Bifida, this is a whole new world in SO many ways.
Ohhh, but wait, after regrouping from the 3 surgeries after birth for Veve, as we were adjusting to juggling it all and falling apart and juggling again. Around the 6 month mark of Veve's life here, Penelope was in intense pain... Which then led to her Emergency stay and Surgery... Then Survival Mode took over. We just juggled, reached to others, moved, cried, gasped, PRAYED, carried on through it all. From a shunt revision at 5 month for Veve to heart surgery intermixed in 2 surgeries for Penelope. Yep we spent a total of 25 days in 5 months living at the hospital and that was not including all the appointments that are included in prep, follow up, routine, the list goes on. WHIRLWIND!!! How on earth, when I see it all written out, I Can not believe it.
A dear, dear friend {more like a sister}Erin came from Arizona, to help in November (caring for my house, kids, laundry, insane amount of unorganized piles in my house...) during Penelope's second surgery. We've been friends for 14 years, she came when I gave birth and lost our first precious Son Evan, almost 8 years ago. She cares well. Loves deep and wide and always brings the compassion of Jesus to my life, with the Wisdom of a seriously gifted Administrator. Believe me when I say, the gift of her friendship and the timing of God to bring her into my life to SEE what it all looks like and to listen to me sort through it all was incredibly spot on.
Every night I would come home from the hospital {Mike was staying with Penelope at the hospital, I was going back and forth 2x a day}and debrief with her, she's an amazing question asker and listener. I have the MOST AMAZINGLY given, generous, kind friends and family. They love us deep and Wide and I am Overwhelmingly Thankful for that gift! But this season of life required someone whom watched from afar to come into our daily life, (because I didn't even have time to process through and touch those deep locked places, the ones that chose Survival mode {which includes continuing forward to the best of my ability and clinging to God's Faithfulness and hearing him at each and every turn} out of sheer necessity. I am a processor by nature, this is why I connect well with writing and people, I barely had time to catch a breath (let alone a shower) most days, let alone a secret space to Process in. That was ok, cause I feel like once Pandora's box was opened, oh boy it was opened! I cried A LOT and TALKED A LOT!!! I processed through 7 years of growing together, with Mike, our Church family and all you dear dear friends. I celebrated in my heart How much I have changed, how much you all have changed, how my children have taught us all to LOVE this day, This moment and take NOTHING for granted! I confessed all the lonely untouched places, all the deep dark realities of attempting to carry the day to day with now 3 medically complicated children. How we never even had a chance to Stop and realize we want from 1 Special needs to essentially 3 in a matter of weeks. Yep, there is a process, always a process, beautifully painful and life changing!
Then at the end of the week, there was literally the deepest places of resolve and awareness. That it was time, time for a plan, time to Reach to those who have walked, prayed and loved us for all these years. Time to say WE NEED YOU!! Time to see that our life requires outsiders coming in and lifting the weight of all our household demands, living and daily to do's. At this same time, many people whom love us began to ask, began to want to make new plans and lists to help lift the daily weight and to meet our needs. Sure do love the timing of God. Then Erin, my darling friend from above told me she had taken notes all week of our conversations, of things she would delegate to others if I would be ok with it. YES PLEASE. At the very same time dear friends of ours and leaders in our church whom care for us, asked us to compose a email list of all the roads/ time frames of upcoming surgery for our kids, so that everyone could be on the same page.
So the emails and lists began, Mike and I were blown away in this process for many reasons. We saw how little time we took for ourselves, taking a shower became a luxury for me ( I won't even tell you how long it was sometimes, GROSS I know), spending time with friends became a luxury as well, which led to some of the breakdown in what life really looked like. We have been so concerned for so long with not wanting to be a burden to anyone and not wanting our life to be defined by the "medical realities". I know most of you are thinking we are crazy, but really, we just LOVE people so much and never want to be too consumed by our life to value, care and love others in this life. Because of that in so many ways has kept us from painting the TRUE picture of what day to day life is, because we don't want to talk about it all the time and every time someone asks a question, there are 5 different ways we could answer and it will always be too much information medically for anyone to process.
Also, I don't think it's necessary for us to focus on the realities of the day to day, for there are so many realities of your day to day that I'll never know and that's ok, it doesn't make me know or understand you less or better. SO we've leaned on the side of keeping it short and simple. But this has been the determent of our Children, because so many don't understand what Spina Bifida or Congenital Heart Defects are, because we haven't found or taken the time to teach you or to give you the tools to understand. Time will make us better together and will enable us all to Grow.
I am passionate about Educating and Advocating, because I want us to embrace these precious children and to empower them with our smiles, words and encouragement: that they are incredible and Valued Humans. I want there to be One Prom that includes every spectrum of needs, from wheelchair bound to Autism and everyone in between, and everyone to intermingle (not Awkwardly but lovingly and naturally). I want parents to feel Cheered on, understood and encouraged through the heartache and beauty of caring for "special" and "normal" children. I want my children to become Whatever profession they want, from Dr's to Missionaries. I want to raise a generation of adults and children that embrace Diversity in the REAL way! From "special needs to socially awkward"... You know how this happens? Taking time to read, to care, to Advocate, to reach to your friend who is struggling through caring for a "special" child. And not just us Reuwer's, there is LOTS of them in your circle of influence and you can chose to encourage, ask questions and value them instead of Awkwardness.
That is a side not that is burning in my head as I process all that has come and gone. I really am grateful for all of you that love us well and have grown and learned to walk through it all with us, the honor it all is to now carry it to others and teach others how to embrace God's great plans and design.
So here we stand on the other side of the Hardest YEAR of our life. Thanking God it's over and BREATHING, feeling humbled and amazed that people will come over and fold our laundry, clean our house, love our kids and lift the weight of it all to help us just be given to "our family". This year is focused on the few things we can give our energy to as we hope for less surgeries and more progress! I am happy to send any of you the breakdown of our years to come in surgery and reality terms. And I hope that more Writing is in this year for me, it is part of my PROCESSING and honestly one of the greatest places of beauty unfolding, to me.
In light of this year; I love you all more, I LOVE God more than ever, and I am Amazingly thankful for the Beautiful gift of Mike and our darling babes, whom change me in the deepest places. Thank you, thank you thank you for loving us, serving us, praying for us and celebrating us!!
On a side note, I will give an update on the kids soon too. Currently we are juggling 2x a week trips to Children's hospital in Milwaukee, between follow up for Phoenix, Genevieve and Penelope, amongst diet changes and .... But all that to say everyone is in Recovery and almost rest mode. You can pray for these current realities; Phoenix has a Femur break that happened on January 1st, it's healing but the straight cast complicates much of his usual activity...Genevieve needs to gain weight, she only gained 6 oz. in 3 months, they believe it's mainly a Spina Bifida issue (because Phoenix was tiny like her too), Penelope is doing much better, no pain episodes in 3 weeks (we went Grain free diet wise for her gut to heal), Rowan is a star, such a strong, sweet boy, but he;s definitely been recovering from this last whirlwind year too.
Seriously long, thanks for reading!
