As a Mom it is a daily struggle to know you cannot fix it.. My girls are my world.. My prayer today.. Please Give me strength.. I feel so lost and hopeless.
It has been 6 years... 6 years( or is it five) since our journey... I struggle to post because people see it as over. It is not over. Madi is 16 and I no longer feel comfortable sharing because it is her story now. But it has been hard and the struggle with cancer did not end at NED. (No Evidence of Disease). It has been hard and sad and hard. My girls life and the path is was suppose to take changed forever. I no longer know if it was the cancer or adolescence that has caused struggle. I feel like I have failed, and succeeded in the same moment. I tried not to make cancer define her and yet, there is so much of it that did. I miss the Madi I knew and also love the Madi I have. We two, we are a team... but at what cost? Am I helping or enabling? Am I being supportive or enabling? Am I doing the right thing? Every day is a struggle. She is beautiful inside and out, she shines and doesn't even see it, she is so strong and yet she sees herself as weak. My heart hurts. I love my Madi and I wish nothing other than that she can see herself through others eyes. She is working on that... she is working harder than anyone I know, but ...
As a Mom it is a daily struggle to know you cannot fix it.. My girls are my world.. My prayer today.. Please Give me strength.. I feel so lost and hopeless.
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Today marks three years before our lives were changed forever. Today marks a moment in time that is burned in our hearts. Today is a day I wish to ignore and not give power to. Today is a day that should be like any other.
Jason and I were talking the other day about how we have not let cancer define Madi or us. How we strive to focus on the great as best we can and roll with the punches of the not so great. Madi is doing really well this year. Well, she is not a huge fan of 7th grade homework... nor am I. But she has been healthy for the most part minus the normal cold and yearly strep diagnoses. She has begun to play year-round soccer for Westside Timbers and is loving being back in the game. We have been meeting with the endocrinologist about starting growth hormones for Madi. There is no good answer for this. I continue to pray and know that I need to decide one way or another how to move forward in the next week or two. The window is small so if we want to give them a try, we need to start soon. Today I will try to live like it is any other day... the crazy of work, school, dinner, soccer dance and homework will keep us busy. Today I wish to thank all of you who have been on this journey with us. We are forever blessed with friends and family who are by our side in this crazy life. We got this... Good news...
We have moved to having our MRI's every 6 months instead of every four. Reality: MRI day sucks! As does the next two days after. I stare at my phone... waiting... waiting to see if our wold will once again change. My sweet friend Pam at work said "don't think like that" She is right, I shouldn't. But the reality is, our reality is, we can't help but brace ourselves. Christmas... This year is the first year in awhile that we have felt the spirit for reals. We are excited to decorate, to be together, to create memories. We are so thankful for health, family, friends and each other. We feel blessed and good about the ending of the year. So, for today, no call was a good thing. At the close of business tomorrow if we have not received a call I feel secure in saying all is well. So for now.. I will sleep tonight and pray that sleep and comfort is on the schedule for tomorrow. Love your family, this time of year is hard, joyful, and filled with emotions. Be sensitive and kind. Be patient, we all have things to get done. We all are just trying our best. Smile, open a door, forgive others for cutting you off in traffic, cutting in line and not smiling. Smile anyways and wish them joy. Love to you all... #wegotthis YAHOO!!! The knee is bending!!! We went into Hotel D on Tuesday as scheduled - The procedure went VERY WELL!!! The Dr. did not have to cut AT ALL!!! YAHOO!!! Madi's knee bent 140 degrees while she was "asleep" ... YAHOO!!! AND we were able to head home with our CPM machine (it has her knee bending and straightening for 8 hours a day) on Thursday IN TIME for me to make it to open house!! - YAHOO x's 3... or is is 4??? HAHAHAHA
Madi is doing her PT and machine daily and while she doesn't love it, she knows she can do it and she is pushing herself more and more each day. I am so proud of our little one. She amazes me each and every day. NOW... for a Ashlyn celebration! She receives the BEST SISTER EVER award... while the girls don't always get along (hahahah... think fighting over who sits in the front seat, who gets to shower first, who is being the meanest...) Ashlyn has the privilege of being a WEB Leader at Twality this year, as a leader she had to go to 2 full day trainings and prepare for the 6th graders to come to school. She came home and shared how she spoke about Madi, made sure she found out who Madi's WEB Leader was and touched base with her to make sure she understood Madi's needs. My heart melted as she shared about her concerns that she shared. I am so thankful Madi and her have each other. Ashlyn truly loves her and does so much to protect her... she can mess with Madi - but NO ONE else better even try. Both girls will be at Middle School this year and we are so grateful for an AWESOME year - Fingers crossed, prayers accepted!!! Thank you so much to our friends, family and EVERY SINGLE one of you who continue to cheer with us and stick by us through this journey. #wegotthis... On Tuesday, August 30, 2016 we will go in for a third knee surgery for our sweet Madi. Her knee is not healing as it should have so they are going to go in and remove scar tissue and bend it. This will be a painful recovery as we will be pushing Madi daily to get that knee moving. We will be in the hospital for 3-4 days. We are sad, and scared and so over this.
I want my girl to start her year off right. She will be in school and leave at the end of the day to go to daily physical therapy. I am going to be working half time to allow me to get her to physical therapy daily. It is hard.. I head in today to get my room ready and cram a weeks worth of work into two days. I am thankful my friend Carol has agreed to work in the classroom with me as a co-teacher. For now, I am overwhelmed, anxious and sad. Madi, my sweet Madi with "alligator tears" running down her face does not want to endure this again. It's not fair and she is scared. Once again my heart hurts and I know I cannot do anything but hold her hand through this and push her to recovery. Prayers accepted. #wegoththis... This past week has been amazing, we have made lifelong friends and are blessed beyond measure for that. I first reached out to Tara after I found out her daughter, Cadence was diagnosed 6 months after Madi with pure germinoma. The girls are a year apart and their story is so similar. There were messages, late night calls (someone in Portland forgets that Georgia is 3 hours ahead when calling ha!). About a month ago I asked Jason if we had the funds to fly Tara and Cadence out here for a visit. He made it happen... he is my knight in shinning armor.
We had never met, we flew them across the US and hoped everyone got along. From the time we got them at the airport it was like we had all knows each other for a lifetime. Watching Madi and Cadence talk, laugh and play together has been, well... there are no words but man, these girls are friends for life. Tara was a friend I have known my whole life. Ashlyn is more than exited for the next trip as we promised we will get Isabella (Cadence's older sister) out here too. It was freeing to have someone who knew the story, who would talk and listen about all the fears, joys and trials we have had since cancer changed our family forever. This week is something I cannot put into words, it was healing and wonderful. Thank you Tara and Cadence for letting us take you all around the state and pushing us to even be places I have never been. I have a new respect for the beauty our state shares with us. Our whole family was blessed by your visit, Jason, Ashlyn, Madi and I are forever changed having met you.. and now, now you are stuck with us. :) #wegotthis... We are heading into the start of the school year. Madi's knee is still at only 70% movement so we are looking at a potential third surgery with daily PT to get it back to "normal". I have emails and phone calls into the Dr's. Our apt is August 22. I am also pursuing Madi getting counseling because quite frankly this little one is weary. August 22-26 Cadence and her Mom, Tara are coming for a visit. I am so thankful these little girls get to meet each other and bond face to face.
Daily I feel the need to put phone calls in to specialists and get things in line. It can be overwhelming. Well not "can be" it is. I too am weary. I want my little girl to start this school year off right, I want her life to be "normal". I want to hit pause. Pause: Rewind to life before cancer Rewind to life before broken bones Rewind to life before PT Rewind, rewind, rewind. Prayers accepted that the Dr. gets back to me ASAP. Preyers accepted that the Dr. can get her leg moving. Prayers accepted that Madi can play soccer again, because it is her passion Prayers accepted that I can do the right thing by her and our family. Prayers accepted for strength. #wegotthis Today Madi had her follow up, we are now moving to 6 month MRI's... Dr. Lamkin feels there is no reason to worry about the tumors returning. We need to breath and thank God.
This has been a rough two years with so much pain, struggle and loss, but it has also been amazing to see what a wonderful village we have around us. Yesterday we played our first kickball game in honor of our dear friend Courtney. The loss of him haunts me. He loved on my girls from day one. When Madi was going through treatment he would show up with breakfast for us out of the blue. He didn't have money, he just gave, from the heart. He was such a good soul. Telling my girls he was gone was so very hard, he is so very young and they loved him. Summers off to me for so long meant coming here to PDX and hanging out with Pops for the day while JB worked. The void is huge. But... there is always a but... I have seen my love stop being angry, sad and frustrated and appreciate the life we have. His feelings and mine of sadness are real and reasonable. Looking though and seeing that we are all so blessed has been a reminder that we need to live in the wonderful, small, amazing moments we have each day. I asked Madi a couple of weeks ago if she ever gets mad about her cancer diagnoses. Her reply: "No, because we got to see so much good out of it..." um.. she is 11... she blows my mind. Both my girls do, they are strong, wise, loving and amazing. How do they do it?, I will never know. As we enter another summer my wish is for a year of health and peace. Thank you to our village, you are all so amazing and we are so thankful for all you do. We got this.... Thank you all for your prayers and kind thoughts...
IT WORKED!!!! Madi even did so well we were able to come home. She just finished her milkshake and is sleeping now. SO thankful and SO happy to be posting great news. YAHOO! We got this... Tomorrow is knee surgery take 2.
We have a plan... It is scary for us, but we feel confident that there is a plan in place. Sooo... at 6:00 am Madi and I will arrive at Hotel D and head to the 8th floor for her surgery. We are staying overnight this time to have help with pain management for the first 24hrs. The last time we visited the 8th floor was to confirm that her cancer was in fact, pure germinoma... I don't want to go back... I am SURE Madi does not either... although.. in true Madi form, she smiled and said: "Great we will get to see people we know!" I reminded her we would probably not be on the 10th floor for recovery, but I assured her if she was up to it she could come say hello to the nurses and Hannah our favorite care life specialist. :) Panic attacks are back daily for me and all of us are struggling with sleeping. My little girl is having a hard time, her heart must be hurting and I cannot even imagine what is truly going on inside her mind. This makes my heart hurt... I strive to be positive for all of them, Madi, Ashlyn and Jason. But I am weary. I was literally up all night last night and I prayed and prayed (not something I have been great at for myself in the last 8 years). I can pray for others, but for me, I know I fall short so I struggle to ask. My prayers are for my Madi, but they are also for me... my heart is broken and scared and I am so so done with this race. But, for her, for Ashlyn and for Jason I will keep running. Please keep our little Madi Moo in your hearts tomorrow, surgery is at 7:30. Love and many thanks to all of you for all you do for our family. We got this... |
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