Sunday, October 5, 2014

Unexpected gifts

The last two weeks have been a whirlwind. McCall was very sick for almost two weeks with some kind of crazy strep/stomach bug. So while I was trying to prepare for Suubi's surgery I was also trying to figure out what the heck was wrong with McCall. On one hand it kept me from obsessing and worrying about the surgery but it also wore all of us flat out!

Jesus is so good though the way He brings friends alongside us to keep us walking. They helped me prepare, encouraged and checked in on us. Set up a meal train for the time when we get home and planned to stock our pantry.  Everyone has been so kind and supportive.

So now McCall should return to school Monday and get started on homebound hours after school also to help him catch up on the 10 days he missed. During the past two weeks I also set up the paper trail to get Suubi on homebound status when she comes home. She may be home anywhere from 6-12 weeks. I also fought with discussed in depth some options for her in-home care with the local agency that matches us with an aid. We hopefully will continue to use the same aid we have been using for the majority of the hours. Thankfully we are on the medically complex child waiver through the state that allows us to have a trained aid come in for a certain number of hours per week to help with Suubi's care. After surgery those hours should be increased to allow someone to come while I work in the mornings and possibly for someone to come in the evenings when Mark and/or I may need to take the boys to practices,etc. We are so thankful for this help! It allows us to still function fairly close to normal, which we feel is important for the boys, especially.

I also found out that we should be eligible to be part of a program through the health department that would help us obtain high calorie pediasure that Suubi currently drinks and may need to be more dependent on for a time post surgery. So each of these tasks actually requires multiple phone calls, face-to-face meetings, emails and prayers:) Throw in an extra IEP meeting and a couple of events at school and the preschool where I work....well we have been on the crazy train!

So I can hardly believe we are actually here! We will get Suubi up tomorrow at 5 am, give her some meds and wash her in a special antibacterial solution. We have to be downstairs ready for check-in at 6 am. We are staying in one of the family rooms at the Shriners hospital. They are so welcoming and we are so thankful to be here.  The surgery should start at 8 am and last around 4 hours.

At pre-op last Friday the doctors and nurses just kept reiterating, "this is a big surgery" and "don't expect her to return to baseline for 6-9 months". I kinda knew this, but hearing it from the surgeon made it real and a bit sobering. They are doing a bilateral VDRO and left dega. (I hope I got that right.) Basically they are taking a piece of bone like a wedge out of both of her legs near the ball of the top part of the leg. The will then put plates and screws in and position the ball part back into the hip socket at the correct angle. On the left side they will take the wedge of bone that they removed and place it into a cut they will make in the lip of the socket. They will bend the socket to make it form correctly the pocket. Very poor description but that is how I understand it:)

Pretty amazing actually! They will do the left side first and if she loses too much blood then they will close her back up and we will need to come back 6-8 weeks later to do the right side. They want to avoid a blood transfusion. So if you would pray with me that they can safely do both sides tomorrow?  She will be under general anesthesia as well as have an epidural.  Of course there are all kinds of fun risks with that too but we want her to be as comfortable as possibly, particularly since she is nonverbal and won't understand what is happening.

During surgery, Dr. Gibson will decide if he wants to put Suubi in a spica cast or if he wants to do knee immobilizers and a wedge between her legs. So, we will see! We will be at Shriners until Thursday, at least that is the plan! We know we are in very good hands here and are truly thankful to be surrounded by so many doctors and nurses that are so capable.

Am I scared? Heck, yeah! But we do things scared:) It kinda feels like when you are driving during the summer and all of a sudden you see ahead of you one of those huge dark rainstorms. And you know you have to drive through it. You know somewhere ahead on the other side the sun is out and it is only temporary..but golly...when you are driving through it you white knuckle the steering wheel and pray out loud and go really slowly, keeping your eyes on the road ahead of you!

He is with us and He has made that abundantly clear. He walked with Suubi way before I came on the scene:) This is important for Suubi's quality of life. Yes it may help her bear weight and eventually be able to walk. We hope and pray that happens, but if not, it will also help her avoid or at least prolong arthritis in her hips and her hips becoming dislocated, both very painful things to deal with.

There are lots of things I wish could be different for my girl. One of my favorite things in the world is to read. I read to Suubi, but last week we had a book fair at the preschool and every day it sunk in more that no matter how excited I was about some of those beautiful books with beautiful pictures...Suubi couldn't enjoy them the way I did. It did make me sad for a few days. But there are other things that Suubi finds amazing and beautiful that I can learn to appreciate and enjoy with her....the thrill of being upside down, hearing the people she loves sing to her, listening to her brothers laugh, the excitement of when a crowd cheers, the birds in our neighborhood, hearing a ball bounce on our hardwood floors. I get the gift of seeing and experiencing the world through a whole new lens as Suubi's momma. That is an amazing gift!

God could have chosen anyone to be her adoptive momma, but He let me be the one. I get to try to comfort her when she doesn't understand what is going on tomorrow. I get to sing to her and attempt to make her comfortable. I get the privilege of advocating for her and explaining to the nurses when I think she is cold or in pain or hungry. I get to be the one she leans her head toward and makes a kissing sound to when she feels content. I get to watch her daddy get wrapped more tightly around her little finger with each smile. This crazy ride isn't what I expected....but it is beyond my wildest dreams:) Jesus is indeed taking me into deeper waters and calling me out to the unknown. The waves are scary, but I'm also very aware of how blessed I am to even be in these waters and I want to faithfully keep my eyes on the One who will keep me afloat! So here we go friends! Pray with us please!

Sunday, September 21, 2014

I don't know what I'm doing...

For about two weeks I’ve felt compelled to blog about this thought…

I don’t know what I’m doing….

Odd yes, yet this is the reoccurring thought that runs through my mind so consistently throughout the day.

Should I take my son in to the doctor for that strange rash? Will I have enough in the bank account on Friday to make that next payment? How many times have I done Suubi’s oral Beckman exercises today? Am I being too strict with my 13 year old when it comes to social media or not strict enough?  Why does my 10 year old melt down when “this” happens?  Did I really make eye contact for a meaningful conversation with my spouse today? What kind of clothes will Suubi be able to wear with her spica cast? How much extra money will food cost next month? When can I possibly exercise this month? Am I a horrible mom because I don’t stay for soccer practice? Should I feel guilty that I have not volunteered for ANYTHING in my kids’ classrooms this year? Did I write them a thank you note….probably not? When was the last time I washed the boys’ sheets???

Perhaps you don’t have neurotic, insecure thoughts like these. But I do. A lot. I’m way out of my playing field, weight category, ability level. I love my life and my family, however, let me make it clear that I truly,

I hope I don’t look like I’m trying to appear like I’m altogether. I’m not trying to look like a hot mess either, but inside most of the time I feel like it:) That is why it is so essential….really, like it is life or death...that I get time with Jesus each day. Because honestly He is the only way things stay together around here. I love my children fiercely but I don’t have what it takes in and of myself to raise them and love them the way they deserve. I’m the most blessed woman in the world to be married to my man… but without Jesus there is no way I can love and serve Mark the way he needs and deserves. Which is why it is 11:24pm and I have no business being up b/c my day starts way too early to be up this late!

I don’t know why but I just couldn’t rest until I put this out there. I don’t want to be a poser. We are surviving and thriving #1 because of Jesus. I gotta have Him. I’m a hot mess without Him. When I tread out on that water on my own, I just don’t do well.  For whatever reason He keeps me in this place where I am painfully aware that I don’t have the wisdom, grace, patience or ability without Him to live this life.

#2, He has surrounded us with amazing support and love through our family, friends, church and community. We are beyond blessed and they truly keep us moving and surviving with the way they (y’all) love on us and help us. I couldn’t do it without my face to face friends and online friends that encourage us and pray for us.  It takes a village people, for real!

People have asked me recently if I’m overwhelmed thinking of Suubi’s surgery and planning for the next few months. I am, but honestly not much more overwhelmed than normal. I guess because so much of my life is way beyond my control. I am slowly learning to live with an open hand and eyes focused up because I know that I can’t do this on my own. I am going to mess up and come up short but I’m realizing more and more that is what grace is all about. I’ve tried for so long to not need grace. That honestly now sounds hilarious!

Every time we get to a new feeling of balance I realize that He is about to walk us into the next wave of deeper waters where we will simply need Him more!! And that is okay!! So next time you see me and I truly look like a hot mess, don’t feel sorry for me:) It’s okay, I am!

Saturday, September 13, 2014

Starting again....

So here we go again. During our adoption process I was fairly faithful to blog, partly because I wanted to document all the Lord did during that long season:) and also because so many friends and family were following along and in the trenches with us. While in Uganda I moved to using a private facebook page in order to keep things, well, more private. The process in country can be a bit sticky at times and it is wise to not have your info pasted all over the internet.

During our three year journey to Suubi I spent hours and hours and hours reading blogs of families that adopted. I was so thankful they let us in to their lives to learn and rejoice with them and at times grieve with them.  I learned SO much that was invaluable in preparing me for the hard and the uncertainty.  I learned things like what to expect at the guest house in Uganda, but then also important information about culture and how children that have been in institutional care process change.

When we learned that Suubi was blind and quite obviously had developmental delays, to what extent we were uncertain....this momma once again searched for every blog I could find that might give me some insight into what our future might look like. I just wanted to feel as informed as possible and to see some of what other families experienced. While nothing can truly prepare you for your own journey, these blogs really did help me and actually connecting with some of these families online and even later in person has been a tremendous blessing!

Once we arrived home we faced a whole new world. We didn't truly expect a diagnosis of cerebral palsy for our sweet girl but after loving on her for a few weeks it was not surprising. I had not prepared for that or researched it! All of a sudden I wanted to find a blog written by a family with an internationally adopted with with cp and vision impairment. I still haven't found that:)

We have to walk out our own journey and in His own amazing way the loving Creator of me and our girl, has placed people in our path at each juncture to help us navigate wisely. However, I can't shake the feeling that sharing some of these adventures and challenges might someday help another momma find her way a bit more easily.

So here we go....

I can't promise I will be faithful to blog often, although I'll try! I'm going to share the good, the bad and the ugly. I realize that I needed a clear picture of what was ahead. I do promise though that I will always shout...
because that is the Truth. There is always hope...that is what I hang onto...what keeps me going....what allows me to face each day.  He fills us with hope for our kids, for our future, for their future and the ability to trust His plan for our family.

The mountain that is currently ahead of us is surgery. We knew Suubi would need hip surgery but we were on a waiting list and we thought we might get a date in the late spring. We recently found out that Suubi will be having reconstructive surgery on both hips at Greenville Shriners Hospital on October 6th. We have never faced surgery with our kids before. This is a new kind of cliff jump for me.

We will have to go for preop for two days the week before then have the weekend at home and then Mark and I will take her to Greenville for at least Mon-Thur. She will most likely have a spica cast, which will most likely look like some variation of this, for anywhere from 4-12 weeks.

We are definitely hoping and praying that it will be more like 6-8 weeks. Life will be hard interesting between now and the New Year:) Thankfully Suubi is on the medically complex child waiver and Medicaid enables us to have an aid for her. They will increase the hours we have the aid during this time and we are in the midst of lining up trustworthy caregivers to help with her care while I am at work in the mornings and then to help some in the afternoons when I need to run the boys here and there.

Our wonderful family in Florence will take good care of the boys while we are with Suubi in Greenville and then we will need to rely more on them and on our amazing friends that make up Team Suubi while she recovers.  There are lots of details to work out like renting a different wheelchair during this time and possibly figuring out adaptations to her bed.  We need to figure out homebound for her while she is out of school and adjusting therapies, as long as seeking out what kind of in-home services she can receive while she is recovering.

We are talking to a nutritionist at the Health Department to see about getting help with high calorie pediasure during this time since her appetite may decrease and after working so hard to gain some weight we don't want her to drop a lot of weight.  There are just lots of things I have never thought of, but I am learning a lot! 

So a new adventure, a new mountain to climb. However, we have had so much joy over the last three weeks watching Suubi discover that she can roll and actually make herself go places. She doesn't like sitting still for long anymore because she realizes she can move! Without this surgery she most likely would not be able to bear her own weight as she grows. So for her to ever be able to walk she has to have this surgery and the sooner the better. We are so thankful that we have such a strong team of therapists that adore our girl and are willing to walk with us every step of the way.

Thanks for your prayers and if any momma new to this world stumbles upon this blog and wants to reach out and ask a question, please contact me!

Or is any momma that has already been through this has some sage advice, then please holler!!!