Colby and Ellen

We are on day one of an intense sleep training program and (conveniently) Colby already had a Men’s Prayer Breakfast commitment this morning, so I’m writing to try to drown out my breaking heart over my little man “crying it out” at the first nap time

I’ve been holding out on the blog world, avoiding writing and (as usual) mostly because I want people to think I’m doing so well that I just don’t feel the need to write about all my struggles…not true!  I’ll admit it, I’m a fraud.  Even after 9 precious months with our boy, we still have little battles everyday.  Now, I realize this is true for every parent, but ours just look a little different.  I’m tired.  And while that could have something to do with the fact that I am fast approaching my 27th week of pregnancy, and therefore, my third and final trimester, I’m tired.  It’s hard to work three 12 hour shifts a week only to come home to appointments with our regular pediatrician, specialists and therapists.  We are still struggling with our insurance company to cover what our policy states they should cover for his hospitalization at Children’s…almost 8 months later!  It’s hard to watch other babies reaching milestones effortlessly, only to watch Judah struggle and fight for each of his.  The big one right now is eating solids.  We’ve been working for a couple months and had advice from his pediatrician and special mouth exercises prescribed by his OT and have yet to get down a whole bowl of any type of veggie mush, so yesterday we were referred to an Oral Motor Therapist.

People are so sweet and I hear all the time, “He’s going to be fine and do everything a normal baby would, just in his own time.”  And while I know this to be true more than anyone (I’ve got one stubbornly determined little boy!) and appreciate the concern and comfort, it’s hard to be the mom and dad.  It’s hard to battle guilt and struggle with striking a balance over letting him play independently vs. working with him on exercising his core for balance since his arms don’t help with this, or feeling defeated after only two tiny bites of food, or letting him “cry it out” at nap time/night time when we’ve had to be so careful about getting the max amount of calories in him for so long.  (Which P.S. he’s just fallen asleep after only 22 minutes of crying…go Judah!)  I KNOW he’s going to get there, but the journey is hard!  On the flip side, each little milestone seems like we’ve just summited Everest.  So many friends posting such cute and sweet photos of there little people sitting with hands in front in the “tripod” position with captions like, “Look who’s sitting up by themselves!” and I know that they must be proud, but there is no way I could express the pride in seeing Judah’s proud little face when he (finally!) sat up independently using only his rock hard abs for balance!  All the OT appointments and “therapeutic” playtimes seem worth it all and even if it is not true or not even fair to make this judgement, I feel like I must be the proudest mother on Earth.

A little stripe of anger came out yesterday that sort of surprised me…still moving through coping stages, I suppose.  CAUTION:  I’m about to delve into a topic that, while I have strong feelings about, I normally would not write about, but I just couldn’t help it.  In the last few weeks, I’ve run across several articles that address the issue of terminating a pregnancy on the basis of a genetic syndrome diagnosis, even if it is known that the syndrome would not be life threatening.  Here’s a quote from one of those articles from the New York Times:

“I couldn’t have imagined reducing twins for nonmedical reasons,” she said, “but I had an amnio and would have had an abortion if I found out that one of the babies had an anomaly, even if it wasn’t life-threatening. I didn’t want to raise a handicapped child. Some people would call that selfish, but I wouldn’t. Parents who abort for an anomaly just don’t want that life for themselves, and it’s their prerogative to fashion their lives how they want.”

WHAT?!  I feel like I’m in a strange “no man’s land” on such a delicate issue because I feel like my frustrations are coming from two directions.  The first is pretty obvious…it hurts to hear someone say that about a handicapped child, as if they are too good and too intelligent to raise a child just as they were created because it would somehow be “inconvenient” and those that do make that choice are just too ignorant or “under evolved”.  The second, not so obvious.  I feel like as one coming from a Christian worldview, it is so easy to demonize a person with this viewpoint and aimlessly rant into the blogosphere about how terrible our society is and God’s judgment (which I believe strongly in!) and so on, but I feel like these rants to people they will never meet or see and also will not be seen by those they may offend must be the easy way out!  Being in the field that I’m in (and the geographic location) I come face to face with ethical issues like this on a somewhat regular basis with patients.  Although I will never understand this type of logic, I can reason that people who make choices like this see the world through a different viewpoint than my Christian worldview, and I am a medical professional.  So with much prayer and continual asking for humility, I can honestly say I really don’t judge patients who have made such choices, although I cannot understand them.  Several weeks ago I was sitting in the break room in Labor and Delivery after a “team meeting” chatting with one of the nurses who I know professionally, but not very personally.  Somehow we got on the topic of babies with “anomalies” and she was saying that with her fourth child, she told her mother, “If there is anything wrong with this baby, we are just going to tell people that I had a miscarriage because I just can’t deal with the idea of raising a special needs child.”  Ouch, this was a little more personal.  I squelched the fleshly temptation to lash out in anger and hurt and simply told her of Judah’s story and that our first impression was that he may not even live or have a severe mental and physical handicap, and although it was not easy, that he is the biggest blessing anyone could ever ask or hope for.  Rather than talk (because talk alone is cheap, of course) I am trying and struggling to live the lovingkindness and endless long-suffering of our Savior King out on my sleeve daily…and boy is it hard!  It’s hard to swallow anger after hearing comments like those.  It’s hard to hold my head up high and not feel I owe the world an explanation when I can see them staring at Judah.  It’s hard to keep saying, “No, not yet.” to a long list of developmental milestone questions at the doctor’s office.  It’s hard to live in a world broken by sin awaiting the return of Christ when those who know him will be given a fully restored body, but I am determined to let my life, my family’s life and the life of my son to testify “against the grain” and new expectations of the culture we live in so that the Name of Jesus may be glorified.

I challenge others who share a Christian worldview with me to also be unsettled by mere talk and do something!  Offer to babysit for a family with a special needs child (even if their “baby” is an adult!).  Don’t give in to the temptation to avoid families with special kids, therefore isolating them, be bold and (kindly!) ask them about their child…trust me, they are proud of them and would love to brag!  Does your church have a special needs ministry?  If no…then why not?  I feel the need to challenge folks to put the energy that is currently being used as anger towards people who chose not to keep their kids and use it to love and support those who did! We love our kids just as they are, but we need the Body of Christ to do the same because it can be tiring and sometimes, we just need a break.

(FYI: Colby and I feel so blessed to go to a church where Judah has been loved and accepted just as he is since day one.  FBCSF family, it has meant the world to us that there is always a place we can go knowing he is loved and accepted, without explanation or exception.  I look forward to the future growth of our special needs ministry

Whoa, was that ever a mouthful!  (I feel a bit hypocritical talking about ranting blogs in the middle of a rant in my own blog!)  I feel better, though.  It’s something I’ve wanted to write about for quite some time but just didn’t know how to start.  If you are interested in getting involved in a Special Needs Ministry, shoot me an e-mail!  For those in the Bay Area, First Baptist SF has a respite care program that always needs volunteers and for those in Georgia, my sister, Jacque Daniel is the president of a non-profit organization for children and adults with Special Needs and has a lot of networking for a place where you could get involved or start your own ministry!

I hope this entry will be received well as an encouragement, not as a chastisement.  I have nothing but love in my heart for my readers (whoever and however many -or few of you!- there are) but I am willingly admitting that I’m just not 100% ok all the time.  In addition to the highest heights of joy, love, praise and thankfulness, I also walk through valleys of sadness, anger, frustration and loneliness.  Thanks for lending me your ear- I feel better already