NOT the first time he has been a huge mess
Thursday, August 12, 2010
A List of Firsts...
Tuesday, August 3, 2010
Acute
Acute is no longer a memory of Mr. Davis' class in ninth grade. No, it is something much more profound, much more difficult to comprehend. Acute is not a word that a parent wants to hear or for that matter, feel. When I hear the word acute, I cringe.
Medically, I have heard acute many times. It is as if it is "the queen mother of dirty words" (to quote A Christmas Story) in the medical field. No parent ever wants to hear of their child having acute pain or that he is in acute distress. It's just not natural.
This post is not about the word acute in terms of medicine. It is actually about the acute emotional pain that I still feel at times. The pain that is so difficult at times, so unbearable, that only tears can make it go away. I understand why we lost Luke: he was very sick. I understand that he is much better off where he is than what he may have endured here on earth. Although I can comprehend the bigger plan of Luke's life, it doesn't make it easier to accept the fact that Tommy and I lost our child. He is no longer with us. The acute pain of losing him will always be there.
In the blog world, you can find a lot of people just like you: stay-at-home moms, bakers, political junkies, and yes, mothers who have lost a child. I have been fortunate enough to find some amazing moms online who share membership in the same club as I do: those who have lost a baby due to a CHD. I have been able to share my acute pain with them and vice-versa. I have cried with them, vented with them, and have shared my most precious memories of Luke with them. I have found camaraderie with these women and I thank God I have found them.
One thing that I admire about my fellow angel moms is their uncanny ability to be brutally honest on their blogs. I have tried to be as candid as possible on this blog, but many times I have failed. Am I always truthful? Yes. Are there things that I have wanted to say, but haven't had enough courage to do so? Definitely. So, here I am, trying to be Brutally Honest Bernie, praying that I do not offend anyone.
The truth? The truth is that much of this acute pain is due to hurt that I feel has hardened me over the past 2 1/2 years. Don't get me wrong, losing Luke changed me more than I could have ever imagined. But it is what happened after we lost Luke that I believe has hurt me even more. It was the person who would go out of her way not to talk to me so that she wouldn't have to talk about my baby boy. It was the one who told me that the reason she didn't come to his funeral was because it would have been too difficult for her. It was the woman who questioned why we had an open casket and if I saw him take his last breath. It was the priest who didn't call after we lost him, even though I was his employee. It was the person who told my dear friend that I would be alright because I had other children. It was the very pregnant woman smoking at the outlet mall. It was the teenage mother who stabbed her newborn to death so that no one would find out. It was the countless number of babies who are given a death sentence because they are not perfectly formed. It was and continues to be those closest to us who refuse to acknowledge the fact that he lived and died. He lived. He died. I pray that one day they understand that fact and show compassion to us. That they can put aside their self absorption and understand what we face each day: our baby is gone.
Whew! See? Acute emotional pain. I've got it and until I can release it, it will stick with me. I pray that all of you are braver than I am and that you are not holding onto to any acute pain, whether it be physical or emotional. May God bless you all and thank you for letting me vent!
Monday, July 26, 2010
Miracles
I love that this sister took James to the altar and blessed him. What a treat! Emily was pretty impressed, too. :)
I was reminded of another miracle today. I have spoken ab0ut my dear friend, Jill, in the blog a few times. Jill and I have been friends since 6th grade. Jill had long, curly, blonde hair and we were all envious of it. She was smart and musically talented. Naturally, I wanted to be friends with her. We remained friends through high school, through my move to Argentina, and even managed to share a room during all four years of college. Jill is also very faithful and I love that we can share our faith. Today, Jill and I were talking about our visit to see Mother Teresa's relics and she said, "you may think this is crazy, but I think you did experience a miracle last week".
So now you need some background...Tommy and I have decided to participate in a research study about left-sided heart defects and their genetics (shout out to Blake's mom Christie Huggins for sharing the info.). As such, we thought it would be good to have everyone's hearts checked via echo cardiogram. Luckily, Emily and Matthew's hearts were perfect (James' was checked before and after birth). Mine was also perfect. Then, Tommy received a call from the cardiologist. They told him that his echo came back abnormal. They performed a special test on him called a bubble test as his EKG was abnormal. The bubble test is an echo where saline is injected into the vein and it is watched as the saline goes through the heart. If the saline bubbles, it indicates a possible hole. Tommy met with the cardiologist and she told him that the tests indicated a possible ASD or PFO and that he would need a TEE (where they put a tube down his esophagus and look at the heart via echo from the inside). Tommy has always had a murmur, so we weren't too surprised that the echo was abnormal. Sooooo, the TEE was last week. When the cardiologist came out (Tommy had to be sedated), he told me that Tommy's heart was "perfect". What? Perfect? No ASD? No PFO? WOW!
So this is what Jill meant by our miracle. She shared that God knew we wouldn't be able to handle another heart defect. That He knew how to heal Tommy's heart. Tommy saw the bubbles as they crossed over his septum. The cardiologist showed him the bubble test. God heals and God healed. Thank you, Jill, for sharing this. God put you in my life so long ago for a reason. You are a miracle to me.
Other miracles are still happening, not only in our lives, but in the lives of others. There are so many miracles who are born each day, fighting for their lives. Thank you for your constant prayers for these children and their families. God bless you all and check the site soon for pics from our summer trip!
Monday, June 14, 2010
Dream Night
Tomorrow the kids and I will head to Le Bonheur for the grand opening celebration of the new hospital. I am making a sign tonight and I will post pics soon. I am so excited as Gordon and Maria from Sesame Street will be the special guests. I think they have lived on Sesame Street since I was a kid! Emily and Matthew asked if Elmo would be there as James LOVES him, but I found out today that he will not be in attendance!
Please continue to pray for sweet Blake Huggins. He will need a pacemaker placed this week and Christie and Kyle are (understandably) nervous about it all. Hopefully this will resolve his rhythm issues and he will get home SOON! Christie tells me when you all write to her and she is so appreciative. I actually spoke to her a few days ago and she sounds so strong and hopeful. It is great to hear that in her voice.
God bless you all and thanks for checking in on us--you have no idea how much we appreciate your kind words and prayers.
Sunday, June 6, 2010
"You look beautiful Emily."
"Matthew, give Emily a kiss." Poor Matt.
URGENT Prayer Request...
Wednesday, June 2, 2010
Prayer Requests
I am writing tonight to ask a few prayer requests for other families tonight. I think we have hit our limit for a little bit! These are BIG prayer requests and I ask that you help these families...
A few weeks ago, I wrote about the Huggins Family. Kyle and Christie have three children (Lauren, Blake, and Tristan). Tristan passed away a month ago of complications from HLHS. He was born at 25 weeks gestation and lived for 23 minutes with his mommy and daddy. Blake also has HLHS and is going into surgery tomorrow for the final stage of HLHS repair, the Fontan. Blake's heart function should improve greatly after this surgery, but it is always scary when your child has surgery, especially open heart surgery. Please pray that Blake recovers quickly so that this sweet family can be together at home soon. Christie and I talked for a long while a few weeks back and I was amazed at her strength and faith. If you have a minute, please visit http://www.kyleandchristieplus3.blogspot.com/ and leave Kyle and Christie a note of encouragement--I know they would really appreciate it.
Another quick prayer request is for sweet Baby Asher. If you remember, I have spoken of Asher in the past. He is another sweet HLHS baby who has been through SOOOOO much. He also had a stroke and is learning to use his right arm like a wild man! Asher's mom and dad (Charity and Wallace) are so in love with this little boy and he is just the cutest little chunk. Asher had an echo cardiogram the other day and it showed decreased heart function. So...Asher will have a cath soon in hopes of widening his aorta. If it works, awesome. If it doesn't work, it most likely means a heart transplant. This really scares Charity, but she is so strong and has faith that the cath will work. You can visit their blog at http://www.arocksurvivorman09.blogspot.com/. Please take the time to read Asher's story--this kid has been through A LOT! I know that Charity and Wallace would love to read any comments.
Another quick prayer request for my sister's work friend. He and his wife lost a baby girl today. I don't know the details, but any time a child is lost breaks my heart. Please join me in praying that this family finds peace in their grief.
I hope I am not being too much of a bummer tonight. These kiddos are amazing and I just want to make sure that they get all of the support they can get. They are big fighters and I know they will do great. May God bless you all!
