Answers and Prayers

I know it's been way too long since I've posted.  Don't really even know where to start.  I guess I thought that after we made it to Kelsey's first birthday that maybe things would get easier.  But some days the pain feels as sharp as it did the day he left us.  Sometimes it's just his memory that pops up, or maybe an invitation to someone's baby shower for their little boy.  I never know when it is going to hit.  A couple of weeks ago, our world was rocked.  I had been following the story of a senator from another state.  She had made an announcement that her unborn child had been diagnosed with Potters Syndrome...the same thing Kelsey had.  She is a pro-life advocate in congress and opted to continue her pregnancy like we did.  So my fellow Potters moms and I followed her story.  A couple of weeks ago, she and her husband, along with her doctors at Johns Hopkins Hospital announce that her baby girl was two weeks old!  Supposedly the first known living survivor of Potters.  And even crazier than that, the treatment that she received was something that some potters mothers that I have met over the past year and a half had asked for but were denied because it supposedly wouldn't do any good.  So imagine our grief and devastation when we were told that a "senator's baby" was given a treatment that others were denied, and she lived.  This caused major hysteria in the Potters community.  Many of us questioned whether or not we pushed hard enough for our babies.  Did we do everything possible to give our babies the best shot at survival?  Why did the senator get this treatment that others were not given even at that same hospital?  It was also just a stab in the heart to think that a cure was soooo close for Kelsey but yet so far away.  So after a couple of days of serious self-doubting, many, many tears, and a major flow of emotions that had become somewhat controlled, a friend of mine contacted the doctors at the University of Iowa who are the only Potters researchers that we know of.  We couldn't understand how, if this treatment was so simple (and had actually been around for a while even though her doctors claimed it was new), then why hadn't they already figured it out?  One of the doctors' response to our questions was the following (paraphrased in my own words).  Basically what he said was, of course, that he couldn't make a definite statement without knowing all the details of her case.  But he did say that in true cases of Potters Syndrome, there are no kidneys.  But there is also no renal tissue at all.  In order for the senator's baby to be able to produce urine and have a surgery to put her on dialysis, she had to have some renal tissue.  Therefore, the doctors probably misdiagnosed her from the beginning.  Of course, you and I both know that they will probably never admit that they were wrong.  And probably will never apologize for causing so much anguish in the Potters community.  But I am very thankful for the awesome doctors/researchers at U of I who are willing to take time out of their busy lives to answer the emails of distraught parents.  While I am very thankful that the senator's baby girl is a survivor and is expected to probably go on to live a long, productive life, I just wish that the doctors would take the time and have the humility to admit they were wrong.  There's no telling how many Potters parents are still second-guessing themselves because they didn't know that they could contact the researchers for answers and reassurance.  It is my hope that maybe some of them will see this blog and be comforted by knowing that they did all they could for their babies.

On another note, I would like to ask for your continued prayers.  I have been experiencing some health issues.  Nothing that I will go into details about today.  But I really would appreciate your prayers.  They have gotten us through this far, and I know that we will continue to receive strength from them now.  Also, I have an even more pressing prayer request.  A dear friend of mine lost her precious grandson this weekend.  Her daughter-in-law was five months pregnant.  Please pray for this precious family as they say goodbye to a sweet little angel.  Losing a child, I believe, is the hardest thing a person could ever have to go through.  They are going to need many, many prayers to get through this week and the coming months and even years.  I pray that God will give them the love and support that I received during our trial.  Without His strength and love, I would not be standing today.  I am so thankful that He chose to love someone such as me who never deserved His love to begin with.

Thank you for all of your love and support that you all have shown us over the past year and a half.  You will never know how much your prayers, love, and generous acts of kindness mean to me.  I will forever be grateful for those who have stood beside us, held us as we cried, prayed for and with us, and held us up when we didn't have the strength to stand on our own.  You are such a blessing.  Until next time...(and maybe not so long this time :))  Love and Prayers!