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!

Kelsey's First Birthday in Heaven

Sometimes it seems like just yesterday we were anxiously awaiting the arrival of our precious Kelsey. And then everything happened so fast. It's funny...I've spent today looking back on this time last year, and I've remembered somethings that I didn't even realize or notice last year. Like how I actually remember the times I had my epidural or the Pitocin. Or that we buried him on St. Patrick's Day. It's crazy how your mind works in times of great stress and trauma. I guess it just takes in just what you need to get through the moment. There's still a lot of gaps in my memory from the time immediately before and after Kelsey was born. Maybe they'll gradually fill in like they have today, or maybe they won't. Who knows? I do know that I am so thankful for the time we had with Kelsey. I miss him so much that it takes my breathe away at times. But it's a comfort to know he is with my Heavenly Father. He is happy, and all he's ever known is love... Both on earth and now in Heaven. I would give anything to hold him again, to tell him I love him and see him grow. To see him have a blast with his smash cake and balloons and icecream. But since we can't, we did the next best thing, and released a butterfly birthday balloon. God blessed us with a beautiful day, and the balloon was very slow in rising out of sight. It gave me a little comfort that it hung around, almost as if Kelsey was saying I'm here. I'm ok. I know he is, but it just helped my heart a little to feel like he was near. I love you my angel. Happy first birthday!

A New Journey

I know it's been a long time since I posted. The past few months have been tough... Actually, at times it's seemed worse than when Kelsey left us. Going through the holidays, and even at times just the day to day life can be almost unbearable. You would think that the longer we go, the easier it would get, but that's just not the case. As Kelsey's first birthday approaches, I get more and more anxious...more uptight, as hard as I try not to. There are days when he is all I can think about. Sometimes that's a good thing...others it's not. Sometimes it's a day full of tears and longing and heartache. If I am honest with myself, and honest with you, I have to confess that there have been days where I've just wanted to give up. Not suicide...i don't believe in that. I've wanted to just pray for God to take me home. I've let myself go physically. Not eating right, not taking meds just like I should. I just haven't cared since we lost Kelsey. But I know that's just the human in me. And God keeps reminding me that I have a purpose here on this earth. That there are people here who love me and students who need me. So, starting today, I'm starting over. I realize that if we want to have another child, I need to take care of myself. I also know that God has a plan for me, even though it's hard to see right now. Things get pretty dark. Depression, yes I finally admitted it's there, is a dark, tiring place to be. Thankfully, when I feel like I'm going to completely drown, He rescues me. He gives me hope, and keeps me going. It is my prayer today that He will keep me going on this new journey to a healthier life...exercising, healthier eating, healthier relationships, and a stronger spiritual life. I share this with you to ask for your prayers and support. I have never been a fitness person or the most motivated in that area. I know it is going to take a lot of prayer and encouragement to stay on this journey. It is my hope that I can honor my God and my son through this endeavor. It terrifies me because I'm so afraid of failing. All past attempts have ended with just that...failure. But I know I have a precious little one and a loving Father looking down on me. Father, I pray for strength and peace. For endurance and motivation. I pray that you shine Your light through me for others to see. I've heard other angel mommies talk this week about the depression they're facing as well. Let me be a help to them Lord. This is a hard journey and a tough hand we've been dealt. Help us through it by your grace and mercy. Comfort us as only You can. Thank you for using my story to honor You and to honor my sweet Kelsey's short but oh so important life. I love You. In Jesus' name I pray, Amen.
I can't promise it won't be a while before I post again. I never know when the mood/message will strike. So until then, please pray for us. Thank you all for being there for us. We love you!