You. Yeah you. I'm talking to you - the parent of a special needs child, or the people around them who know/love/care about them. It's extremely difficult as we juggle nursing schedules, therapy appointments, specialists, medical testing, meetings with teachers and the exhausting care our children require - to just take a TIME OUT. Time to breathe, relax, reflect. When you are in the middle of the chaos and hectic nature of our lives, it can be tough to appreciate just how far your family or child has come in a year. It's so hard to see growth, new things they do, progress in their education or physical therapy. Thank goodness for those around us who help remind us of these things. I'm a little wiser this year, and there a few things I'd like to share with you.
1. APPRECIATE THE BEAUTY THAT SURROUNDS YOU. Take time to just be thankful for the blessings you've been given. Sometimes amidst busy schedule, piling bills and stressful situations it can be difficult. Just when I had convinced myself my son would never do anything "NEW", as his medical involvement begins to mount and we address more medical difficulties... the blessings began to show up. Braden lost his first teeth, he is trying to sit up more on his own, he is raising his arms to stretch (along with the leg shaking as he stretches them), he began making direct eye contact (something he hasn't done since he was only a week old) and he began having more immediate response by starting to "talk" back soon into interaction with him. Take time to give thanks for the little things, and sometimes God will bless you with bigger things. The eye contact & "discussions" we now have are BIG THINGS to me - it's like he actually is trying to "talk" to us. Amazing, thank you Jesus.
2. GOD DOESN'T GIVE YOU MORE THAN YOU CAN HANDLE This little quote, while shared by some of the most well-intentioned people meant to offer comfort, still has that little double meaning. In my head, I know it's also a little piece that's also meant to offer themselves a moment of relief as if to say "Thank God it's you and not me". That's OK. Really. I'm sure I might try to offer the same sentiment to others, and yes - even mean that second part too. I get it. This life is not easy, and I don't expect a single soul to somehow be jealous of the life we've been given. Over the past few years, however, I've been close enough to others who have gone through some very difficult circumstances. And I've seen first-hand how some people, really CAN'T handle everything God puts in your path. I've seen people shut down completely and barely be able to do life after such tragedy. It has been in these moments that I've come to understand why God chose us to be Braden's parents. For as long as our precious child chooses to fight for life, we don't have a choice but to keep fighting for him!! We cannot let him down!
3. SOMEBODY STOLE MY SUPERWOMAN CAPE, BUT I DON'T KNOW THAT I WANT IT BACK. Probably my greatest joy in life is doing things for others. That takes time. I've come to realize that Superwoman probably doesn't need 8 or 6 or even 4 hours of sleep like I do, which is why she can do it all. I can't. I've tried to keep up with the things I liked to do before I had Braden, or even the things i've somehow managed to keep up with over the past few years... but this year, I took time for ME. I used to feel SO MUCH GUILT for doing anything for myself, like somehow that made me a bad mom. But I've come to realize how much better I feel about myself, and how much that energizes me to give even more of myself to Braden. So the things that fell off of my perfect record this year were things like birthday cards not getting mailed, frozen meals not being taken to other families in need, not having time to "be there" for others facing life drama, not serving on as many volunteer committees as I'd like to, etc. But my New Year's resolution is to cut myself some slack. In the end, it's my own family that needs me more than anyone else does and they deserve the best of my attention. So to you mother's who think you need to live a perfect "Pinterest" or "Good Housekeeping" life... cut yourself some slack too. Be the best YOU for those who deserve the best of you - INCLUDING yourself:-)
THIS YEAR: 2013 We are praying for some things for our family and we will just keep praying for direction. As we put together holiday cards, the family always asks about when we will be celebrating Braden's birthday and what it will be like (because you know we always have a big party & a theme to each one). It always catches me off guard, and I get more emotional than I usually do. I realized that we are planning a SEVENTH birthday party for Braden. Wow. Let me allow that to sink in. Our doctors told us at 2 1/2 that Braden was already on borrowed time and that any time we get with him past 2 is a blessing. SEVEN is a Godly number, and i truly hope we get to celebrate the life of this little child God has blessed us with. We never take a day for granted, and some days I'm overwhelmed by the time we've been given, and even afraid of how close we may be to the end. That's a truly honest reflection of the emotions that accompany raising a terminally ill child. I know I've shared this link before (on Facebook), but wanted to share it again here as a reminder, and as a piece of perspective for those looking to relate to those of us raising special needs children. http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html
I hope your 2013 brings you many wonderful blessings. Thanks for taking the time to read this LONG post! The Wilson family: Kodi, Brad, Braden