"Meet little Miss Harmonee"Today is Monday which equates to CLINIC at Primary Children's. With our recent move our commute has been cut in half which is a nice perk for me being a Liver-Mum, Hospital-Mom, Medical-Mom...whatever you choose to call whatever it is I have been this last year. Her appointment was great-all is well with London. LuLu entertained/IMPRESSED everyone with her new skills, squawking, talking & walking. She worked the office between exams in her diaper, purple Mukluks (boots) and signature over sized bow. Everyone in that office knows LuLu and LuLu knows everyone. It feels like we are surrounded by our friends and family when we are there. We love Primarys and everyone in it. We are lucky, we are grateful and we are feeling more at PEACE every day.
Lu is well enough to start being seen every other Monday as well as labs every other week too. We will start going back into the real world a little bit as RSV and all the other yucky stuff is winding down. Wow, are we really here already? I'm eager to have play dates with friends. Lateovers with cousins sounds like a dream. I'm excited to go to the Zoo and see Batty with my kids (Ashley, our donors favorite @ Hogal Zoo). I'm looking forward to family functions and going to church again. We've been isolated for quite sometime but it's been in the name of LuLu, which makes it all worth it.
As we near the end (well sort of, it never really ends though) of our time in Liverland others are just starting, some are in the middle and one-by-one crossing the finish line with a life saving transplant. It would be ignorant of me not to remember that many don't make it. For some, time runs out waiting. Imagine that-watching your child die, your Mum die, your best friend or neighbor because there aren't enough organs available. P.L.E.A.S.E. consider being a donor if you are not. Please talk with your friends and family about it and your wishes. Dying someones hero, being someones Savior- what could be better than that? I'm grateful we didn't suffer the pain of losing a child.
Meet Lu's friend Miss HARMONEE, she is 1 of the many waiting. http://www.harmoneesliver.blogspot.com/ She is from Brigham City, Utah and has had quite the go lately. Back-and-forth, back-and-forth, long hospital stays and a lot of complications. I have anxiety just thinking about it. MuM Farrah is waiting for a call telling her they have a liver for her 6 month old baby who's has Biliary Atresia. This will be her second life saving surgery. Neither Mum nor Dad qualifies as a good living donor match for Harmonee. PS Dad is in the military and will most likely be deployed when she has her transplant. I can't even imagine for both of them how difficult this must be.
I met her about an hour before Harmonee's first surgery that took place the day after she was diagnosed with BA, talk about a whirlwind for them. During our admission in December I couldn't hold myself back from entering an obviously scared, heartbroken couples room whose Doctors name on the door was BOOK (you know--the Queen) I wondered...does that baby have Alpha-1 too? A beautiful friendship was instantly forged as it is with all Liver Mums. I had to let her know she wasn't alone, theoretically and physically. I was right down the hall in the middle of a month stay at Hotel Primarys. They needed to know there are other people dealing with similar issues and we're all here to help. I felt absolutely alone after London's diagnosis until I met some Liver Mums myself.
What great PERSPECTIVE we've been able to gain because of London. How lucky our little family has been to travel on this road. Sick child or not, and hopefully NOT- Perspective in all our lives is what we need to get through it happily. Figure out whats MOST important to you and yours, then focus. We have and it helps.
xoxo
lizzie
Alpha-1, Liver Mum
8 comments:
Liz and James, You are both great examples of being able to be strong in the face of adversity!!! We are very proud of you both. James...thanks for supporting the whole family in so many ways. Liz, I heard that Farrah's face lit up today when she saw you in the liver clinic. You have spread yourself very thin offering compasion to those in need. May you and your family be blessed in return. We love you, Mom and Dad
I am so glad to hear that London is doing so well and that you can soon break free to the outside world. We have already taken Eden to many places we probably shouldn't have. Shh don't tell Dr B, but so far so good. We went through all of this so she can have as normal a life as possible and I hope to give he that.
Thank you for Sharing Harmonee's story. She is a sweetheart.
What a great writer you are! I enjoyed finding out how you could help another family, I bet it helped them so much! Reading what you go through, helps me remember what is really important and be grateful for having a healthy boy. Thanks for keeping up the blog and for helping those around you and for being a wonderful example to all of us! Time sure does fly by!
love you and your family! xoxo april
Hey Liz, I check up on you guys often and am so happy to see that Lulu is looking so strong and healthy. She is such a miracle. Thanks for sharing your story with all of us.
Love you.
Thanking God for the "peace" that you and your family are being blessed with Lizzie! You all have been on a long hard journey and I cannot tell you how thrilled I am that things are now going so well! Also, you have obviously touched many lives along the way ... perhaps that was God's plan all along :) I am grateful to know about Lydia and now Harmonee and I thank you for sharing their stories as well :) Hugs to you today my dear :) LuLu and Jonah too!
I read your blog quite often and find it inspiring. I wrote once about my cousin's little girl Kai who too had BA and recieved a liver transplant 2 years ago. My cousin Jasmine is on a hunt for a little boy named Zach a new kidney. I was wondering if you could please post something on your site about donating for this child as well. the website is www.help-zachary.com. he is in dire need!
I am not sure if this will get to anyone, but I just found this site as an alpha-one mum, whose 16mth old daughter is also awaiting a liver transplant, as of recently. I couldn't believe my eyes when I saw beautiful Lulu, and thought, "that's our Kaiya". I cried with a lot of emotion knowing I had found a family going through what we have,and may also soon experience. We even have an older boy, like you. It was so reassuring to see the words and images familiar to our situation, and know that we aren't alone in the things we are going through. I hope this finds you or that we may somehow be able to follow your journey as we go through ours, and someday speak, even if only online, but for now, my thoughts will be with you and yours. Rita May, Kaiya, and family
Hi Rita! This is Lulu's Aunt Julia. I am the one that started this blog when she was first diagnosed with Alpha1. I'm so sorry to hear your little one is fighting the same fight. It's an excruciating experience. You can reach Lulu's mom, Lizzie, at elizabethbarnum@hotmail.com. Or you can friend her on Facebook (Lizzie Barnum-Badger). Sending my warmest wishes...
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