It has been an absolutely crazy past few days. Last weekend Shane and Kaitlyn went up to Fayetteville to check on some things. I frantically called him back to Little Rock on Saturday night after I got a feeling that Avery was taking a turn for the worse. Since then, we have been going nonstop. Today is the first day that I have been able to have some quiet. Not sure if quiet is good or bad. I slept until noon, went through some paperwork, and sat outside with my brother.
Ever since we entered this adventure with Ave, the days fly. Even as I sit here now, I can't believe that it is 4pm. I am guessing there will be a time when there won't be as much to do and that those will be the hardest days. Eventually the medical bills will be organized, the endless list of phone calls will be completed, the thank you cards will be sent, and the house will be sold. Avery will still be gone and we will be left to wonder what life would have been like if she had had a different prognosis.
I personally am doing ok. I have no regrets. We did all we could for our sweet girl. Honestly, if medicine were not as advanced as it is, Avery would not have made it through the first day. We pushed our limits and gave her every chance possible. She died peacefully in my arms and I could not ask for a better way. It was not a shock and it was not rushed. It was beautiful in a way. This may be hard to understand, but in a way I never really had her in a normal way. I never held her, heard her cry, nursed her, changed her diaper, or took her for walks. She was always a bit distant. I loved her of course and spent every moment possible holding her hands and feet, kissing her nose, and lathering her up with lotion. I know she knew I was there and I know she knew we loved her. That for me is all that matters.
I look forward to the days when my smiles and laughter won't be so forced. It will take time I know, but for now I am grateful for the many tender moments Shane and I shared with Ave. I don't want to forget them or push them aside. I want to look at her pictures and smell her blankets. She is forever connected to both Shane and me in a unique way.
I hope you will continue to follow our story. You will have to forgive me, but I will likely use this blog in conjunction with counseling as my own personal therapy and processing. Although I realize that this makes me very vulnerable, I am comforted by the opportunity for release.
Carissa
Our Angel Baby, ^Avery^
Yours Truly
Shane, My Devoted Husband
Big Sister Kaitlyn
Morgan Rae
Can't Forget the Dog...Sadie
About Me
- Carissa
- My hope is that this experience will be an opportunity to share with all of you the adventures of my family. On a daily basis, I share my life with my beloved husband Shane, our daughter Kaitlyn (7),our angel baby Avery, and our third daughter, Morgan Rae.
I love you sweetheart. Avery is smiling down on you and her little hands are forever wrapped around your heart. You have done a brave thing in letting your little angel go home to heaven and your healing will come. God Bless all of you as you all try to learn how to live again!
ReplyDeleteWow...
ReplyDeleteAgain you always amaze me Carissa. And as I said earlier... "Whatever you need"
Wrapping you all in my thoughts and prayers...
Holli
Written by a Mommy who truly loves her little girl.
ReplyDeleteThe love you have for Avery shines through in every word you write. Your honesty is so sweet and appreciated. I'll still be here following your blog and hopefully in person sometimes too.
ReplyDeleteShe must be so happy to be with her Father and looking forward to seeing you when the time comes. My heart literally hurts. What a special little girl to have been blessed with you as her parents. As distant as it may seem now, I pray that with time you will see more and more how much she loved and knew you, even if it didn't seem as so.
ReplyDeleteWhat is normal, and how do you get back to it after this? Do you even want "the normal"...
ReplyDeleteI am a mother myself, of two healthy children. I have never walked in the shoes of those mothers who have lost a baby or a child... would not wish that on anyone.
My heart aches... I found your baby girl through the mooney's blog, after I fell in love with them. I just don't understand... I never heard of CDH until I read your blog, and started finding more and more blogs about other babies diagnosed with it. why are there so many babies with CDH, why can't they save all of them? Why are there some that make it and get to go home, live a life? Why is there so much pain and suffering? There are so many people out there that have children that don't even want them, or neglect / abuse them... they are truly gifts from god... and yet there are so many that don't make it...why?
I am devastated that Avery did not make it... I thought for sure she was going to make it. She overcame every obstacle within time.
As I read back through your blog, you were prepared the whole time to say goodbye to Avery. I just don't think I could have done it...
Carissa- Your third paragraph sums up exactly how I felt and still feel about my time with Maxton. I too have found it therapeutic for me to continue to write... although, i haven't dne much of it. I did start another blog where I write letters to Max. It helps me say things that I am not sure I should share with others. Hang in there and know I am here for you if you need to talk/vent/scream...
ReplyDeleteashley
I have followed your blog for the last few months, and I am so sorry for your loss. My heart aches for you and your family. Although you don't know me, your story has touched me very deeply. I will continue to keep you and your family in my thoughts and prayers as you walk this difficult journey.
ReplyDeleteRachel
I get all of this. i especially get your heart about having to force out smiles. I remember thinking not too long ago after looking at a picture taken at christmas..."am i always going to look like that sad woman who lost her baby?" I see loss when i look at myself in pictures. Granted, this is still our year of firsts. That's what i call it now. The first year...having to get thru the first bdays of ours, the holidays, the first next baby i'd hold, the next first baby girl i'd see or hold.
ReplyDeleteI remember passing strollers in the stores, and begging God to not let them be newborns..or if it had been 3 months, a 3 month old, etc. Today, i held a 9 month old baby boy. Grateful it was a boy..but a 9 month old nonetheless.
I promise to walk this journey with you. When you feel up to it, and you want to write this stranger, i'll be here. And i'll annoy you with posts that sound as if we've known each other for years..because i promised myself i would. :)
Remind yourself everyday if you have to, your suffering is not for nothing. Her life and death have purpose and I pray God reveals it to your heart as He wills it.
c.
I have followed since you were pregnant and prayed on my hands and knees for Miss Avery-I am glad that you find comfort in knowing that she is at peace and free from pain. She was a tough little girl and one that I myself look up to! I can't imagine what you are going through-but I find strength in your words...
ReplyDeleteDearest Carissa and Shane,
ReplyDeleteYou don't know me, I found out about baby Avery through Nayeli Nelsons blog. I just wanted you to know that although we have never met, we share a common bond. Twenty six years ago, my son was born with CDH and although he survived, I remember feeling the scared, anxious, terrifed feelings that you were feeling, while your beautiful little girl was fighting for her life. One thing I will never tell you is that I know how you feel right now..because I don't. But, I DO want you to know that we are ALL family..whether or not our children have survived, or grown their wings..we are here for each other..as shoulders to cry on, support to get you through any tough days..or just as a way to "let off steam" on days when you feel overwhelmed. You may email me any time at docjames415@aol.com.....Your daughters life had a purpose, albeit her life was brief..but as I have said to others, she made more of an impact in her short life, than some people will who live to be 100. There is a quote that I would love to share with you in hopes it may comfort you, at least a little. "Some people only dream of angels, you got to hold one in your arms". God bless you all and I pray for strength and peace for you all. Sincerely, Gail
with my experience it helps to blog and just get it out there..it is very therapeutic.. I still force smiles and laughs, and occasionally a real one slips through and I catch myself and think "wow, did that just happen?" I did have my daughter for almost 9 months, but I was so paranoid about sids or just always knew something was off, even before she was diagnosed.. it never seemed "normal" so I know what you mean..its hard to explain.. it does get harder it seems when things slow down again.. when the calls and visitors slow down and eventually stop.. I have to hope it gets easier..just take it day by day, hour to hour if you need to..
ReplyDeletepraying for you and your family!
My goodness I cried and cried with you. I prayed with you and I will stay with you through this. Your clarity and strength is inspiring.
ReplyDeleteGod Bless you and your family...you all are so amazing, and have been through so much. Your sweet baby Avery is heaven now, looking down on you, free of any tubes, wires, etc. God Bless you all as you find your way again...we will continue to follow your blog and pray for you all as you find you footing again...
ReplyDeleteStill here for you and always praying....with love, Susie
ReplyDeleteYou are an amazing and strong person, Carissa and so was your little girl, Avery Mae. I am so proud to have followed this story and so saddened by it all. We all uplift your family and Avery to the Lord and I will pray for you and your family through this time of need. Thank you again for sharing your story and I look forward to continuing to follow this blog.
ReplyDeleteIt's your blog so you write away, honey! We are all here following along and supporting you. So sorry for your loss.
ReplyDeleteI have never had the agony of losing a child, but I do know what it is to grieve. Just a couple of words I would share...
ReplyDeleteThere is no time line for your grief. Some days will feel okay and others you might fall apart, but in time, the bad moments will be fewer and farther between.
I sit here now 7 1/2 years after losing a dear friend and loved one. It has been a long journey, but it is part of me for better or worse. Having Avery as your daughter will always be a part of you. Losing her will be there too, but in time you will heal and grow from what has happened. Go at your own pace and learn what is healing for your soul. Don't feel that you have to answer to anyone.
Love, Rachael
Stranger Sister, I am praying for you with tears. God hold you.
ReplyDeleteForever thinking of you - today I bet Avery is chasing dragonflies and trying out her wings!
ReplyDeleteNichole
Cincinnati, Ohio
YOUR STILL IN MY PRAYERS. MY HUSBAND AND I HAVE FOLLOWED YOUR STORY AND 3 OTHER ONES SINCE WE FOUND OUT THAT OUR BABY WILL BE BORN WITH CDH. I CAN'T BELIEVE THAT IT HAS ENDED LIKE THIS BUT GOD HAS A BIGGER AND BETTER PLAN THEN WE'LL EVER KNOW OR UNDERSTAND. THE DR THINKS I'LL GO INTO LABOR THIS WEEK, BUT IF NOT 8 MORE DAYS AND THEY WILL INDUCE ME. YES YOUR STORY HAS SCARED THE HELL OUT OF ME BUT ALSO HAS MADE ME GET REAL. I FELT LIKE I KNEW AVERY AND I PRAYED FOR HER EVERYDAY....I DIDN'T WANT TO SEE HER IN PAIN.....GOD BLESS YOUR FAMILY. LOVE CANDICE
ReplyDeleteI've followed Avery's journey. How I wish things could have ended differently for you. I too lost my daughter to cdh (in February). I too feel blessed to have been chosen to be her mom. I'm feeling more at peace now. That is what I wish for you, peace in the coming days. Thinking of you and holding you close in prayers and love...
ReplyDeleteIn love and heartache,
Beth Houselog
Not one day has went by that i have not checked this blog for any updates. It would be an honor for us if you would continue to share with us. I told Sam that when you look at me, I know you don't have a clue who i am, but when i look at you, I feel as though you are my friend whom I have talked with everyday for months now. I continue to pray for You, Shane, and Kaitlyn daily, that yall will have peace because Avery now has peace, and that yall will have the stength to get through whatever the days ahead have in store for the Keirsey's. Please do keep us updated!
ReplyDeleteHannah Ray
The video is beautiful!! I have checked this blog several times a day for months now and agree with everyone else that I would like to see how things are going with you guys from here on. Blessings today and always for a very special family.
ReplyDeleteDeLynn
I just wanted to pass along my sympathy to your guys. I had the honor of taking care of Avery when she arrived at ACH the day she was born. I did not get to know you, as you were still in the hospital, but I did get to know Shane some. It was very evident from the moment Avery Mae was born she was surrounded in love. I am sorry that it was not a happier ending for you guys. Please know it was an honor to care for Avery and you.
ReplyDeleteNurse Amanda- NICU