But we have been living life and that is all that I have time for most days.
We survived double hip surgery. There were actually two procedures with very formal names that I once had memorized....but now I just am thankful we are past that and over that mountain. It did feel like a formidable mountain. The first week was really tough. Figuring out the right medicine cocktail to control the pain. Then 5 weeks in a spica cast from her belly button to her toes was actually shorter than expected. She did so well, but it was hard. Uncomfortable for her and so boring for her.
She regressed. We knew to expect it, but it was disheartening when she stopped using any words and was so quiet and sad. But she is doing SO great now! She is happy and feisty and bearing weight on her legs daily! We are back in private physical therapy twice a week - once in the water, private speech therapy twice a week and occupational therapy once a week. We are back in full swing.
She has grown so much; both physically and emotionally. We still really, really struggle with communication though. When we brought Suubi home I knew that I would be her momma, her advocate and her biggest cheerleader, but I didn't truly understood that also meant I would be her voice. Which means I need to be able to understand what she is saying, what she wants and needs.
That is hard. Really hard.
What an awesome and humbling responsibility to be someone's voice. And also in a way to be their window to the world. Suubi hears very well and often amazes us with her receptive language, however I still most of the time need to explain to her what is going on and help her understand if possible. She does have a few words and can be prompted to use them, however it is hit or miss if she will use them before prompting. I think she may have apraxia, but I don't even know how to go about getting her diagnosed and even if I did, I'm not sure what that would change right now.
Some children with cerebral palsy that are non-verbal are able to communicate using their eyes to control adaptive communication devices. Suubi is blind though so she cannot use one. I'm convinced someone somewhere has suggestions and a way to help her communicate. I just have to find that person!
In the meantime, it is up to me. It is up to me to observe and stay focused and read her body language to determine what she is thinking and feeling. She tries so hard and is so patient but usually at least once a day she gets upset because I just don't get it. I won't understand what she is trying to communicate. My sweet girl has opinions and knows what she wants and feels compassion toward others and gets scared and tired and hungry and bored....and she wants to be able to share that with us...but can't.
So I have had to learn to slow down. To be intentional with my focus and be attentive. In this day and age of smart phones and instant information at our fingertips it is easy to lose my focus. I can't google "what is Suubi thinking" though. It is up to me understand her well enough to be her voice.
It can be especially hard because Suubi can go from here:
to here....in a matter of seconds!
Suubi's needs did not get met the way she needed when she was an infant. So when she has a need that is not being fulfilled now it often immediately sends her into panic/meltdown mode! We try to meet her needs quickly so this doesn't happen, but if I am not tuned in to her then I miss the cues and we reach meltdown!
I have to take the time to sit with her and communicate. To listen with my ears, my eyes, my heart. But that is SO hard when there are so many other needs around me. We are so thankful and so blessed and Suubi girl has come so far....but...
I would be pretending if I wasn't truthful about how some days are just really, really hard. Exhausting. Some days I truthfully think I was a better parent before the adoption. I feel like I was able to spread myself around better, relax more, keep my house cleaner, plan Family Nights, stay up later reading to the boys, more patient, healthier because I took the time to exercise...
I'm hard on myself.
Parenting a child with multiple disabilities has changed me. I have had to lower some of my self-imposed expectations. I have had to step away from perfectionism. My house just doesn't get cleaned very often. My bathroom stays dirty much longer than it used to. Family night is a win now if we get pizza (gluten free included) and a movie together. "Me" time has changed dramatically. Face to face time with my husband does not come as often. Dying to myself and my own selfishness has to happen many, many times a day. It isn't pretty. I mess up WAY more than I used to...by being impatient....giving a sharp answer....struggling not to choose the easy way....missing the intentional moments I used to relish....being disappointed in myself....checking out by looking at my phone instead of my children's faces.
BUT....there is always a big butt:)
I must remind myself that coming face to face with my own sin and selfishness is quite a gift. I realize that I am broken and only Jesus can fix this mess. Only He can give me the strength to pour out when I feel like I have nothing left to give. He ALWAYS sends someone with a hand to help or encouragement at just the right moment. But I realize He also intentionally allows me to come to the end of my strength so I will finally let HIM be my strength.
I feel like so often people see the pretty side of our journey but I need to be honest about the hard. I'm such a work in progress and I desperately want to be the best mom for my kids, all of them. But I also want to be a good wife and most of all a good Christ follower. Most days I feel like I do only one well at a time.
I'm believing that He covers my mistakes with His grace and I pray that my children remember the good not the bad. And there are moments every day that absolutely make all my tired worth it. When sweet girl leans in for some love or remembers to say eat instead of screaming. When the boys insist on kissing their sister before leaving for school, when her face absolutely lights up when she hears her Daddy is home, when the boys automatically know what to sing to calm her down in the middle of a meltdown, when the boys' friends come over instinctively to greet Suubi and play with her, when I see my boys comfortable around other children in wheel chairs that are also nonverbal, when people in our many doctors' offices greet us with a smile and give lots of grace for our crazy, when I meet people around town that somehow know me as Suubi's mom.
And of course this:)
I get to be a tiny part of this beautiful thing Jesus is doing through my sweet girl's life. He uses it all, the good, the bad, the hard, the ugly....to grow us. Change us. Mold us. Create in us something beautiful.
If it isn't hard, it isn't worth it, right? And it really isn't so much about just Suubi, but what He is doing in ALL of us that long-term has significance. It is so much bigger than the frustration of the moment....not knowing why she is screaming, not having time to accomplish it all, not ever feeling like I have it all together.
I'm holding onto this:
"being confident of this, that He who began a good work in you will carry it on to completion until the day of Christ Jesus." Philippians 1:6
He = Jesus This is a good work. A hard work but a good work that HE is doing in us. My prayer every day is that it will bring Him big glory, despite my failings. Can you relate?
Sometimes I just have to write it all down to remind myself of some of these truths. Thanks for reading along with me.