Thursday, September 29, 2011

My first tatttoo

My first tattoo in rememberance of my son, Aiden James Reed. It hurt badly but it was so worth it. The picture isn't the best but I wanted to show it off. I will try to take a better picture and post later. Thanks:)

Tuesday, September 20, 2011

A poem I love........

What a Grieving Mother Really Thinks

Hello, Old Friend,
Oh, yes, you know
I lost my child a while ago.
No, no please
Don’t look away
And change the subject
It’s ok.
You see, at first I couldn’t feel,
It took so long, but now it’s real.
I hurt so much inside you see
I need to talk,
Come sit with me?
You see, I was numb for so very long,
And people said, “My, she is so strong.”
They did not know I couldn’t feel,
My broken heart made all unreal.
But then one day, as I awoke
I clutched my chest, began to choke,
Such a scream, such a wail,
Broke from me…
My child! My child!
The horror of reality.
But everyone has moved on, you see,
everyone except for me.
Now, when I need friends most of all,
Between us there now stands a wall.
My pain is more than they can bear,
When I mention my child,
I see their blank stare.
“But I thought you were over it,”
Their eyes seem to say,
No, no, I can’t listen to this, not today.
So I smile and pretend, and say, “Oh, I’m ok”.
But inside I am crying, as I turn away.
And so my old friend, I shall paint on a smile,
As I have from the start,
You never knowing all the while,
All I’ve just said to you in my heart.
~Kelly Cummings

Tuesday, September 13, 2011

My Wish List

I borrowed this from a blog that I read who borrowed it from Cherubs literature called “Wish List for Bereaved Parents” I modified some of it with my own words.

1. I wish Aiden hadn't died. I wish I had him back. If there is a way to get him back in my arms, I’ll find it. I don’t really believe he’s gone.
2. I wish you wouldn't be afraid to say “Aiden”. He lived and was very important to me. I need to hear that he was important to you as well.
3. If I cry and get emotional when you talk about Aiden, I wish you knew that it isn't because you have hurt me. I never stop thinking about him, you didn’t remind me he’s gone. His death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.
5. Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you more than ever, even if I’m harder then ever to deal with.
6. I need diversions, so I do want to hear about you; but I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about Aiden and Cole the weather and anything else.
7. I know that you think of and pray for me often. I also know that my child's death pains you, too. I wish you would let me know things through a phone call, a card or a note, or a real big hug. I’m so grateful for each and every time someone has reached out to us.
8. I wish you wouldn't expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of Aiden until the day I die.
9. I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss Aiden, and I will always grieve that he is dead.
10. I wish you wouldn't expect me "not to think about it" or to "be happy". Neither will happen for a very long time.
11. I don't want to have a "pity party," but I do wish you would let me grieve. I must hurt before I can heal. Sometimes that means I’ll say things I don’t mean or are irrational. Thank you for letting me say them anyway and not taking it personally.
12. I wish you understood how my life has shattered. I know it is miserable for you to be around me when I'm feeling miserable. Please be as patient with me as I am with you.
13. When I say, "I'm doing okay," I wish you could understand that I don't feel okay and that I struggle each minute to get through the day. And I hate that my life is just “trying to get through”
14. I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I'm quiet and withdrawn or irritable and cranky.  Expressing myself, even if you did something to bring out my worst emotions, isn't meant to be an attack on you.
15. Your advice to "take one day at a time" is excellent. I wish you could understand that I'm doing good to handle it at an hour at a time.
16. I wish you understood that grief changes people. When Aiden died, a big part of me died with him. I am not the same person I was before he died, and I will never be that person again.
17. I wish very much that you could understand - understand my loss and my grief, my silence and my tears, my void and my pain. But I pray daily that you will never understand.

Tuesday, September 6, 2011

Aiden's Final Days

Monday, August 22nd.................Aiden, Greg and I had a rough weekend. Over the weekend, the doctors tried to trial Aiden off ECMO again and after only 35 minutes his oxygen levels (postductals) were in the 20's. Oxygen levels should be in the 100's. Aiden was shunting.....Pulmonary shunting causes the blood supply leaving a shunted area of the lung to have lower levels of oxygen and higher levels of carbon dioxide (i.e., the normal gas exchange does not occur). We were called over by the hospital to come be by Aiden's side. Greg and I both had extreme anxiety as we ran over to the hospital because we were not sure what we were walking into. It was not a good day. Aiden's was unstable all day. He was not happy at all. On Sunday, Aiden was very cranky and did not want to be touched because of the Saturday trial. All day long his blood pressure was high and then it would drop drastically. Greg and I grew restless with the doctor's plans and wanted to know what the next steps would be for our baby. Greg and I called for a meeting for Monday and we had it set-up for 2pm with the a list of doctors that we requested be present: Dr. Ruiz (Pediatric Surgeon) Dr. Myalischka (Pediatric Surgeon), Dr.Thatch (Fellow Pediatric Surgeon) ChistyAnn (Physician's Assistant), Jeannie (Prenatal Coordinator),  and Janet (social worker). There were a couple of attendees present as well as one of our primary nurses, Julie. Greg and I had a list of questions to ask the team of doctors so that we could figure out the next step in Aiden's care. Before the meeting, Dr. Myalishka found Greg and I at Aiden's bedside and the look on his face was not his usual "happy" one. I felt a pit in my stomach before we sat down for our meeting. Dr. Ruiz did most of the talking and we never made it to our questions because we were told at the meeting that after all that they had done thus far for Aiden that nothing was working and that there was nothing else that they could do for Aiden. We were told that Aiden was no longer making progress and and that we were prolonging the inevitable. Aiden would never come off ECMO because his pulmonary hypertension was so severe and there was nothing else they could offer him. The PPHN was severely affecting his lungs and heart and they had no other options. I don't think I heard half of what she said but Greg repeated it all back to me. I don't think I would have believed Dr. Ruiz unless Dr. Myalishka did not repeat the same words to me "prolonging the inevitable". Dr. Myalishka was the Pediatric Surgeon that Greg and I met with on our first meeting at the University of Michigan to discuss which hospital we were going to come to to give birth to Aiden. He is an amazing surgeon and won us over. I knew it was bad when not only Greg and I were crying but also our primary nurse and the prenatal coordinator too. Greg and I left the meeting numb and left the hospital to figure out what we were going to do and try to digest the information. We took a long walk in the gardens next to the Ronald McDonald House and thought about our lives without Aiden. I called my family and asked them to come down to say good-bye to Aiden. We talked with the doctors and nursing staff about our plan for Aiden and that we wanted to hold him while he passed. We spent the rest of the evening with Aiden and I sang him songs and read him books. We had him baptised by the Chaplain. The nursing staff closed off our section of the NICU space and gave us privacy to hold Aiden as he passed. We took so many pictures of our sweet baby boy. It was the most difficult time in both of our lives and I will never forget being able to sing to him and hold him tight as he made his way to Heaven. As he was placed into my arms that night he looked like he was in pain and as soon as I held him it was as if he was in the place he had always wanted to be...in his mommy and daddy's arms. Greg and I held him for hours and then at 12:41am on Tuesday August 23rd Aiden James Reed passed away. I hope Aiden finds so much joy in Heaven and is doing all the things he could not do here on earth like laugh, cry, run, and jump. I hope Aiden is looking down on us and keeping his family safe.
We held a service for Aiden on Saturday August 27th. It was a day that I hope parents do not have to endure...planning a funeral for your three week old son. I know he is in a better place and he is no longer in pain but each day is a struggle. We have planted a tree (thanks Lindsay, Grant, and Jude) for Aiden in our backyard and put flowers, engraved stones, and angels for our memoir for Aiden. We also planted a Japanese Maple in our front yard as another tribute to Aiden.
Each night we tell Aiden we love him and miss him before we go to bed. Cole doesn't quite get that Aiden is never coming home and tells me that Aiden in still in Michigan when I ask him where his brother is. Sometimes he tells me he is in heaven but he doesn't understand what heaven is after we have talked about it and even read stories about it. If any other moms who have lost children that have other children have tips on how to explain this better to my three year old I am open to suggestions. Cole has started to tell me that he wants "another Aiden" to come home. We have put up pictures in the house and plan on dedicating a wall in our home to only Aiden. There isn't an hour that goes by that we don't think of Aiden and wish he was here and I am sure this will never change.

Thank you everyone for your support and prayers through all of this.