As painful as it is to remember, today I reflect on how far our family has travelled on our journey since bacterial meningitis threatened my baby's life one year ago today...
My Facebook entries documenting our experience that began one year ago today:
May 15, 2010 at 6:28pm:
Please pray for my sick baby boy. My heart is dying. We need a miracle.
May 16, 2010 at 7:26am
My heart aches, holding my son's teeny hand as he fights for his life. But he is fighting! I have faith that the Lord hears our prayers and I will continue to plead for a miracle. Please pray for Ben.
May 16, 2010 at 11:13am
Ben's evaluation from the picu doctor this morning: "I think he will survive." We have hope. Fresh courage take.
May 16, 2010 at 10:26 pm
In my worst nightmares I never imagined my five week old son would be in a battle for his life. As his mother, I feel pain and anguish that can't be described. But, I choose to have faith. I know the Lord is mindful of our family and I will continue to pray for our miracle. Please pray for my baby. Pray hard.
May 17, 2010 at 2:39 pm
My body is exhausted, my mind is numb, my heart is drained, but my spirit is strong. Ben needs a perfect miracle so I am determined to have perfect faith. Please pray as Ben is in his MRI now--please let there be good news.
May 18, 2010 at 7:05 am
My goal for today: breathe. My heart is heavy. I am praying for the faith and courage to stand before this aweful trial for one more day.
May 19, 2010 at 9:17 am
Happy 6 weeks Ben. It is a priviledge to be your mother. I love you infinitely and unconditionally.
May 19, 2010 at 9:27 am
The only light in this awful darkness and despair is my faith in the Lord. Please pray that we might be able to put our trust in His will and find peace in our hearts.
May 20, 2010 at 10:55 am
Each day is a rollercoaster of events and emotions. I cannot return to the past, the present is misery, and the future itself is uncertain. The only thing I can trust is that, come what may, the Lord's will be done. My faith in His plan is the only thing that lightens my heavy burden. I CAN do this.
May 20, 2010 at 11:05 pm
We are closely monitoring Ben's breathing as the slightest stimulation causes his respirations to crash. He is unable to tolerate nutrition at this time. He has coughed, cried, and yawned on his own--but he is yet to "wake up." We must now wait...nothing is certain at this time. We are continuing to pray for a healing, but are determined to submit to the will of the Lord.
May 21, 2010 at 7:20 pm
Best moment of the day: holding my precious son and comforting him with primary songs. Second best: Hank and Max visiting at the hospital and Hank telling me out of the blue that my tummy isn't big anymore. ..... Praying to find joy in my journey.
May 22, 2010 at 11:36 pm
Ben is like a little leaky boat and the doctors try their best to bail him out with teaspoons. Today was a good day--no new holes to plug. Thank you for your thoughts and prayers. Words can't express the gratitude we feel for the countless small kindnesses we have received. Please continue to pray for my son.
May 23, 2010 at 7:15 pm
Ben sucks! Literally. Ben demonstrated huge steps in his recovery by sucking on his binky this afternoon. Sucking = swallowing = eating....hopefully. Thank you so much for remembering our family in your prayers.
May 24, 2010 at 7:39 pm
Let's see...wake up, eat breakfast, hang out, watch my baby's brain surgery....yep, average Monday. CT scan today showed excessive fluid in Ben's head and a blood clot in a vein in his brain. Bad news. It's a good thing Ben is a fighter. I'm so proud of him. Praying for Ben to hang in there.
May 25, 2010 at 7:18 pm
Just a little icing on the cake: doctors are thinking Ben has pnuemonia. More medication, back on oxygen, another CT tomorrow, and new picc line. We will not give up.....we have never felt the hand of the Lord in our lives more strongly.
May 26, 2010 at 8:44 pm
This rollercoaster is making me feel sick and I think I want to get off. Highs: today's ct scan was nuetral and Ben opened his eyes for nearly an hour. Lows: Ben is having heart issues after receiving sedation for his picc line.... EKG today and an echo tomorrow. Ben is so tired--hopefully tomorrow's ride will be smooth.
May 27, 2010 at 7:16 pm
Today was just what we needed--slow, quiet, boring....no new bad news! I am hopeful that we may have finally bottomed out and can start recovery mode now. Praying for a speedy, full recovery and trusting in the Lord and His plan for us. Thank you, thank you for your prayers--it means the world to us.
May 28, 2010 at 6:54 am
Disturbing events this a.m.: twice Ben "forgot to breathe" and had to be revived. Absolutely terrifying. Doctors don't have any explanations yet. Today is not off to a good start. Please, please keep a prayer in your heart for Ben.
May 28, 2010 at 8:49 am
Back to ICU....
May 28, 2010 at 7:16 pm
After an intense day in the PICU in which Ben repeatedly stopped breathing until he was gray in the face, it was determined that his apneaic spells were the result of seizures. Hopefully we'll be able to adjust his anti-convulsant meds and patch this little hole in the leaky boat. Aaron and I are exhausted after a high drama day, but so relieved that Ben is hanging on. So proud of that boy.
May 29, 2010 at 9:36 pm
For the first time in weeks, it felt like the old baby Ben was back. Although we can't be sure, we think Ben can hear and possibly see! Best of all, Ben gave me a great big dimpled smile today! Yesterday we weren't sure Ben was going to make it and today was his best day yet! What a difference one day can make. So, so, so grateful for the many prayers offered on behalf of little Ben. Keep them coming--it's working!
May 30, 2010 at 6:55 pm
It's a record! Two good days in a row! I'm liking this new trend. In order for Ben to come home, he needs to work really hard this week. Please pray that Ben will have the strength and ability to pass some very important tests. He's come so far already...you can do it Ben!!!
May 31, 2010 at 7:41 pm
One more day down and one more day closer to bringing our baby home and bringing our family back together. Today was a slow day at the hospital--hopefully Ben got enough rest to pass his skills tests later this week. We've come so far but we still have so far left to go. Saying my prayers of thanks and living one day at a time.
June 1, 2010 at 12:48 pm
At 4, Ben will be taking a swallow test to determine if he is able to feed orally, or have to continue receiving nutrition through a tube. I wouldn't be any more nerveous for this test than I would be if he were taking the LSATs. This morning Ben was given his first bottle ever, and his first oral feeding in over 2 weeks (to qualify for the test)...he drained it! Yes! Please keep Ben in your prayers this afternoon:)
June 1, 2010 at 7:17 pm
Cheers to Ben! Ben is about to get his grub on....we got the go ahead to start feeding Ben with a bottle! This boy continues to amaze me. I can't thank you enough for your prayers.
June 1, 2010 at 8:58 pm
I don't have the words to express my appreciation for the outpouring of prayers, love, and service rendered on my family's behalf. I will never be able to repay all of the acts of kindness that we have received...but I will do my best to pay it forward. Love to you all.
June 2, 2010 at 8:57 am
Ben just finished his morning bottle--not sure if he was more happy to drink it or if I was more happy to be able to feed him. Hearing test this afternoon.....praying constantly.
June 2, 2010 at 6:24 pm
Miracles happen: my baby can HEAR!
June 5, 2010 at 3:01pm
Two very exciting things to celebrate today: Hank's 4th birthday and the news that Ben will be coming home in a few days!
June 7, 2010 at 12:07 pm
Waiting for a few more of Ben's doctors to give us the green light to be discharged....then it'll be home sweet home tomorrow!
June 9, 2010 at 7:43 pm
After 4 weeks in the hospital, my head is spinning from playing nurse to Ben, but I won't complain because it feels so good to be back home.
If I had the choice, I'd give back this trial in a heartbeat. But, I can't deny the profound impact that Ben's illness and subsequent road to recovery has had in drawing our family closer together, deepening my appreciation for our friends and family, increasing my faith in the Lord and His tender mercies, sewing my testimony of my Savior to the walls of my soul, solidifying my testimony of the power of prayer and priesthood blessings, and confirming my unconditional love for my sweet children.
I am so proud of how far Ben has come in just one year and I'm excited to see what amazing miracles are in store for this boy in the journey ahead!