Saturday, January 26, 2013

Hug them a little tighter

I held him a little closer tonight. I took in everything I could about his hair, cherub cheeks, chubby gator paw hands, how sweet he looks when he’s asleep, and of course breathed every moment in while he sang to me for awhile. We have been blessed with so much “extra” time with him that in the day to day I can sometimes forget to be thankful in each moment. Tonight our reality hit close to home, and it feels like my heart is pounding right out of my chest – that it’s been ripped out, and I can only imagine the pain felt by the parents of our little friend who earned his angel wings today.

We were blessed to meet such a sweet family. Baby Lawson’s parents are sweet, kind, gentle, loving, graceful, courageous and just amazing people. Kyle & Mindy Herbert were gracious enough to open up and let us in on their journey with their son Lawson. I think about the day I got to hold him for like an hour, and I think about it often. That precious little face I got to look at up close and personal, and I know I was lucky to meet one of God’s special angels and hold him in my arms. I didn’t want them to leave. I just related to them so much, it felt like we were really “family”. It’s hard to understand the difficult choices we face as parents of a medically fragile child, even though we feel the love and empathy from those who care about us – to find someone who really does understand can be tough.

Mindy and I were texting back and forth when I found out Lawson was hospitalized for pneumonia. I knew I had to be there for them… I remember the first time we had to bring Braden “back” to the hospital after our NICU release. It was terrifying, confusing, exhausting and I just wanted to be there for them. I had training scheduled all weekend, so when we texted on Friday, we decided I would come to the PICU Saturday evening after training. Today I learned the value of every precious HOUR. Lawson would earn his wings before I could leave work today. My heart sunk when I got a text from her sister. I froze. I got numb. I got hot. I could barely breathe. I would not get to kiss that precious boy one more time. The guilt. I should have gone last night to see them, I should have just rearranged and gone. So I get mad, then another wave of guilt, another round of hot, searing tears. And I am reminded that for whatever the reason, I was not meant to be there.

My mind takes me back to the day I lost my friend Stacie. I got the call she finally succumbed to esophageal cancer a mere 15 minutes after I left her room at the hospital that morning. But God’s plan is perfect. Braden was in the hospital at the same time Stacie was in her last days – and I got to see her every day. I am SO grateful for that time and that chance to bid farewell to an amazing person. If Braden had not been that sick, I know I would not have gotten all that time with her in the end. It’s all in his plan and all for his purpose. Ecclesiastes 3:11 “He has made everything beautiful in it’s time”.

So I calm down again, breathe, and say another prayer for Kyle & Mindy. If my pain is this great, I cannot fathom what they are enduring at this moment. Then my own fears about our son kick in too. I can’t help it. I know that we too will be in the same “club” with Kyle & Mindy one day. Hopefully it will be later and not sooner, and that we will get to see Braden turn seven. Perhaps some of the grief I am feeling is for my own future loss. So I’m grieving really for two things at the same time. I think sometimes when you grieve, you also grieve the losses you’ve suffered before this moment too. It can be overwhelming. But then our friends pick us up and we try to put the pieces back together as best we can. Sometimes a minute at a time, then an hour, and soon enough you can find entire days where you are not overwhelmed by this loss.

Can I please ask a favor to those of you who will know of someone who has suffered a loss? Please give the family some time, a day, a few days if needed to let them process the loss and make their own announcement about it before posting your condolences on their pages? Please consider that announcements like that are typically made on their own pages after the entire family has been notified. It hurt me to see that other people wouldn’t consider something like that before posting. Please don’t misunderstand me – every kind word means the world to the person receiving it. But also understand that it is the place of the FAMILY to make that announcement publicly and sharing it via social media. Please give them this opportunity to share with the “world” when THEY are ready to do that. I couldn’t imagine how my own family would feel if a friend had called to check on us and I offered the information of a loss – and the friend went and posted condolences on our pages before family had been notified. Unless asked, it’s just not right, or your place to do that. Take a moment in this instant notification society, to consider what the family is going through, and everything that may need to take place on their end first, to respectfully notify their own family.

Let me end here… Savor the precious moments and memories. Say “I love you” before you get off the phone. Hug & kiss them goodbye – every time. Send them a text to tell them you are thinking of them. And certainly don’t waste an opportunity to leave things left unsaid when you care about someone. We know all too well how short and precious life can be. I hope we do our very best to make the most of the moments we are given. I hope the people in my life that are dear to me know just how special they are to me. I hope I gave my sincere effort to share with others loving kindness, humor & laughter, joy, appreciation of self, a positive perspective on our own circumstance, insight and discernment. Don’t wait for tomorrow.

Monday, January 21, 2013

3 Lessons I want to share with you

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.

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