Sunday, November 3, 2013
As a mom with a special needs baby, I know how important it is to have lots of support. I get support from my loving husband first and foremost but also from our immediate and extended family, and great friends. On top of that I am a part of several SB support groups, a few of which are online, or Facebook groups. For the most part the posts on these sites are encouraging and uplifting. However, the other day there was a sad exception. A woman who has an 20 something son with SB posted on the site. I won't quote but I will paraphrase. She wrote that she felt most new parents had too much hope, and for this reason she was concerned. She made it clear that there was little hope for our children, that it was a long hard road, that our marriages would fail, and before long our family and friends would abandon us. I was appalled that she had posted this on a support group website. I was disheartened, not because I believed what she had to say, but that others would read it and lose hope. I shared this post with Corbin and he responded with a new post to the site. It was such a beautiful post that I wanted to share it on our blog. So here it is.
"Forgive the direct and pointed nature of my comments...we are all parents of these beautiful children and each and every one of us deserves respect...and I give it to all of you freely. My intentions with regard to my comments on a few discussions here was to point out that discouraging talk is not helpful. I welcome stories of heartache and challenge...I know the realities of what our life may be like...and I don't mind preparing for it by utilizing the valuable insight from parents who have gone before me. What I don't tolerate quietly are comments directed at people here who may be vulnerable...scared...seeking hope and encouragement...I won't quietly tolerate comments that are entirely focused on the incorrect notion that hope is a wasted effort...that anticipation of a wonderful and happy future is a futile endeavor...that our hope makes us unrealistic and foolish. I won't stand for that because it is a lie...nobody knows for sure what anyone else here will face. But I can attest to you new parents...or those expecting...that life will only get better from here on out if you keep your focus on the positive...there is hope...your kids can and will make you happy...my daughter is the light of my life...and I celebrate every milestone...every small success...just as I did my other children. You DO have a future that is as bright at you choose to make it. Will you be tempted to get discouraged...to feel sorry for yourself...your circumstances...like some here have? Of course...but you will be as happy and fortunate as YOU CHOOSE to be...circumstance doesn't decide that...you do. I can tell you that our little girl is the most perfect child we could have ever hoped for...she is just packaged a little differently...we could never have imagined being so happy...and she is one of the toughest cases our providers have ever seen! 7 major surgeries in 16 months of life...much of what can go wrong has...my wife has revived her multiple times doing CPR. I tell you this so nobody thinks we're a family with an "easy" case...we aren't...but our life is bliss. Is our life what we "planned"? No...it's better. Our life may seem like chaos from the outside...but from where I stand...the view is clear, beautiful, and thrilling. I don't spend one moment wishing for something else for my life...I spend my time marveling in the truth of what it is...and what it may become thanks to this little girl. We choose to be made better through this blessing...some choose to be made worse. Truthfully...the sky is the limit for you. So please don't be down...don't fall victim to self pity...or worse...try to find a false comfort in bringing others down to join you in your self prescribed misery...don't speak of your child but with love and admiration...after all...they have SB...we don't. Don't speak of your life as if your state is static and the condition of your existence unalterable. Life is dynamic and can improv with every moment...so rise to the occasion...you have a beautiful child...which is so much more than many can say for themselves...and whether they grow to be independent and allow you your freedom...or whether they remain with you...they can be your freedom. Try to find joy in the journey and in the prospects of happiness...and you will see that above anyone else you know in this world...you are the most blessed. I am sorry some have taken offense at my comments in defense of hope...but I don't apologize for what I have said. I won't be back on this site...as my passionate feelings sometimes offend those with fragile sensibilities...and the last thing I want is to hurt someone...even if they are those who go about hurting others...but at least now you know my intentions were honorable and heartfelt...my wife may visit from time to time so please respect her thoughts and feelings should she ever decide to comment again. She was turned off by the attack on hope...but it seems those people are few and are confounded quickly...so long as people refuse to stand for those who spread or defend the spreading of hopelessness...I am excited for every one of you for what your future may hold. God bless. ...cheers, Corbin"
I really do feel I am lucky. Actually, I don't believe much in luck...I am truly blessed. Blessed to have Corbin and blessed to have the beautiful children that we have.