This kid...
this kid right here, has our hearts. This kid has captured several hearts. In fact, he pretty much captivates hearts wherever he goes. His smile is contagious. God's spirit, love, and joy all radiate from him. What we once thought looked bleak (early on in the suffering stage), looks sparkling with possibilities. He has grown, developed, persevered in ways we could never have imagined would have happened so early in his life. This little fella, our Mr. Max is going places :). We are so proud of him and can't contain our love for him...but can I let you in on a little secret...life with him is hard sometimes. It is just plain hard for this whole family at moments. What comes naturally and easily to kids, we have to teach. What takes kids a few hours, a few days, or a few months to learn, could take him years. And yes, we as a family persevere alongside him too because it's worth it to see his inch-stones develop. Right now, we are bubbling with joy because he is beginning to use his body more fully. He is pulling up on EVERYTHING and climbing on top of EVERYTHING...
which on one hand is super, duper exciting. But, on the other hand truthfully, is scary beyond belief because he has no body awareness. You know how infants who are starting to sit up just topple over without bracing themselves...well, that is exactly what Max does...except from really high places. You will often find him slinging himself around in Dad's chair, jumping on couches, climbing up on coffee tables or stairs...and it never fails, he always ends up falling. It may not seem like much to you, but it is actually dangerous for him because he has a shunt in his head that we have to protect. Even through the anxiety of trying to do simple things like cook dinner or help another kid while making sure Max doesn't injure himself (while he laughs hysterically I might add) is tough, but we do rejoice that he is finally at the stage where he is trying to stay vertical more than horizontal. Another excitement is that he is really trying to use his right hand more...
The botox injections have been phenomenal for him! Plus if you notice, we have a mimicker!!! I love, love to see him be aware of how Zoe is playing or how the kids go through their daily routines...
He still has a severe oral aversion and will only let us put food to his lips, but when I hand him his toothbrush he points to the water for me to turn on and then pats his lips! This is progress my friends, because he knows what to do...he just isn't quite ready yet...but he will be one day :). I get questions a lot about his oral aversion and feeding, so I thought I would share another area that can be difficult. We have to monitor his weight closely because he can get dangerously too thin and his digestive system has problems quite often, so we do everything to keep those calories on him. One of my daily care items is Max's mic-key button...
He basically has a hole in his stomach and the little tube stays in his body when the balloon (on the left) is filled with water. I have to change the button out every 6 months (on the right above), but sometimes they can come out on their own...which actually happened to me this summer. It's important that it stays in because it can close up within an hour and then he would have to have surgery all over again. I also have to constantly make sure the button stays closed because if it opens, his gastric acid will leak out and can burn his tummy...
I've shared before how often I have to clean him up from his diarrhea explosions that happen all the time due to his digestive problems. One new area that has really hit me hard these past few months is that Max has begun to play in his poop. He will smear it all over his bed, his clothes, his body, then suck his thumb and go to sleep. Can I just confess that I have been through a season of mourning on this one? This has really been hard for me because even though Daniel and I came to terms with having a special needs child from the beginning, you still have seasons where it hits you all over again. But then, you see this face...
and the pure joy that he brings to our lives...and we know that all the heartache, all the pushing through therapy, all the times I have to stand firm and not give in to his preciousness, all the times of sorrow and mourning is all worth it just to share my life with him. To have the opportunity to see him learn how to walk...
To see the relationship he is building with his siblings...
the way that he reveals God...this kid, his life...it's a gift. A cherished gift. If I could wish for one thing in his life, it would be to hear him speak. I love to hear him say mama or papa, but it is always prompted. I long for the day I can hear his heart...hear his mind...see what he's been thinking all these years. Recently, we are getting to see a glimpse of that, though not through words. We are finally getting to see him think through things and trying to figure out what he wants. We went through a season this summer where he was really angry and yelled at me quite a bit. After pushing through, he is finally at a place where he is trying to use his signs more and point/grunt gently with what he is wanting to do. I'm also loving that he has finally learned when he is being left out. For so long he just kinda did his own thing, but now he gets really mad and throws a fit if he thinks his siblings are getting to do something he isn't.
That's right, he is really developing a personality filled with likes and dislikes. I've enjoyed seeing him develop opinions...although I don't enjoy having to rebuttal some of those opinions :). I'm sorry if this blog post was too real, too open...but as I journey through this life with Max, I hope to share some transparency into our lives with a special needs child. Our family shares many, many highs together, but we also experience the lows...and this summer brought many difficult situations for me as a Mom. I'm glad to say we are working through them and with God's bright light shining on us we are rejoicing in the life of Max in our family!
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