It was one of the first things we bought for her nursery and that alone was exciting to a new mother.
I remember the peace I felt folding her many freshly washed newborn onesies and placing them each neatly in the drawers. I remember the hopeful daydreaming about all the things she could do and become. Id fold her blankets and long for the weeks ahead when I could wrap her tiny perfect self in them and hold her close.
Maybe she will love to dance like me. Or perhaps love science like her father. Maybe she will play sports or become a writer or doctor or counselor.
All the potential she had in my dreams...
As she got older, hanging clothes was easier and one less thing to worry about so the dresser remained empty minus some of those old baby blankets.
There was a time a few years ago we gave away that dresser. A friend needed it and we did not so for a while it belonged to someone else. When they no longer needed it became ours again but Natalie didn't really have many clothes.... but we needed it.
I cried putting the medical supplies away. I cried like I did the first time we were told Natalie was different. I cried from a deep pain that I hadn't felt in so many years...
This dresser is for baby clothes that were bought for a child I never had. Natalie is nothing like the child I dreamt up. Its unlikely she will ever be a doctor or scientist and it pained me to remember how hopeful I was.
It hurt to see gauze and syringes where her "future ballerina" onesie use to be.
It hurt to be reminded that our lives are different and that it wasn't the plan.
But more than anything I felt pity and embarrassment for the person that I use to be.
Yes, grief is part of the process and I will admit openly I had some very dark days. I wasn't always the determined and positive mother Natalie needed and deserved me to be. Many days I put her down for a nap and spent the entire time during it crying, feeling sorry for both her and myself. This wasn't what any of us asked for and I was not looking forward to watching her struggle through life.
But time went by and I cried less and less. I began to appreciate things that many mothers don't notice about their children like extended eye contact and intentional gestures with individual body parts. I
started to realize that Natalie wasn't struggling through life, but dancing through it.
When I was finished unpacking the supplies, and finished with my crying, I put Natalie on my lap and told her I loved her and I know she understood me. she leaned into my arms for a hug and we just sat there while I appreciated everything about that moment. And it was truly lovely.
A while ago I took all the medical supplies out and was able to begin putting Natalie's freshly washed clothes into the drawers. She has been in remission for 175 days and we are enjoying every single second of it. I'm so thankful for her life exactly how it is. Remission, Angelman Syndrome, Craniosynostosis.... She been given a second chance, thanks to St Jude, and as I folded her not so tiny clothes I allowed myself for the first time since she was diagnosed to daydream about all the things she could become.
I could accurately describe the last year and half as the season I cried myself to sleep. Cancer treatment is a fight for life & there is nothing like watching your child struggle through it. If that statement sounds like the start of a whimsical, heartfelt poem, I can assure you it isn't.
During Natalie's treatment there were a few things I kept track of that Id like to share with you. Its been a long road and part of the joy of seeing her come through the other side is the memory of where that road took us.
From diagnosis day to remission day 1 was 544 days.
Natalie received 325 doses of chemotherapy in that time. If that doesn't seem like that much, I will put the toxicity of these treatments into perspective for you.
It took a regular regimen of 27 different medications, not counting the actual chemotherapy drugs, to counter the MANY side effects of her treatment. From stomach problems (which we are still dealing with and will for a long time) all the way to severe skin rashes that looked like her flesh was burning away from the inside.
At one point she got an extremely complicated infection that took months of daily injections to counter. 430 hours worth of injections to be exact.
Those antibiotics and other medications would wreck her body and cause her to develop C-Diff 11 times. If you don't know what that is, do yourself a favor and NOT google it. Its pretty gross.
In her time at St Jude Natalie was admitted into the hospital for a total of 181 nights. (most of the treatment is outpatient treatment and we go back to housing at the end of the day unless there is a problem) The longest stretch being 29 days at the worst of her infection. It was during that time that she lost her ability to walk, sit up unsupported, eat and drink or make any sounds verbally.
Natalie went through 28 days of radiation to her entire abdomen and was sedated 39 times.
She received blood/platelets approximately 48 times. This is not counting any blood she was given during her 3 surgeries, because we were not told the amount given, just that it was necessary.
Natalie is still on medications to counter some of the longer lasting side effects & we have been given the lengthy and depressing list of things Natalie will have to deal with forever.
But, its just the price you pay.... Her life is so valuable...
Every child's treatment is different and even though Natalie's was relatively long, there are children who have double, even triple (or more) the days. Everyday I think about the people we left behind in Memphis. Friends who still fight. Who still pray more than they do anything else. People who are waiting for a miracle... Parents who we grew to love that are now and forever grieving the loss of their precious child... People who are walking into the hospital for the first time... Who are breathless from the same anxiety, the same gut-punching fear that we felt for so long.
Some days were good. Some days were not. All bad days had moments of joy & all good days had moments of stress, fear and sadness. Some days I felt numb. There were many times I just had to take a second, with my hand on my heart, to tell myself I could keep going as long as my heart was still beating, even on the days that same heart was breaking. For this child I will do anything.
The moment we found out Natalie no longer had any evidence of disease... I lost my composure. I stomped my foot several times and clapped as I whimpered "Oh God Yes" in a way that is not at all a reflection of the strong woman I have painstakingly become. But, I think God is honored by those honest moments. The many, many times when complete and well formed sentences were replaced by pure emotion. Sometimes agony. Sometimes joy. Sometimes a weird combination of the 2... There are no words to accurately describe those feelings.
It was hard to leave. We hugged everyone on her Oncology team and said our goodbyes the same day. A hug just seemed so anticlimactic. How do you just say goodbye to the people who worked so hard to save your daughters life? How do you thank them and it be enough? How do you move on from that miracle?
Its been 3 weeks.
Natalies hair is growing so quickly and she is getting a little weight back on her body.
She moves with a spark, and we are all enjoying being able to breathe again.
3 weeks down. A lifetime left to go.
...the end of the treatment we set in place a year and half ago.
Natalie has scans scheduled for the 10th of February and we hope to receive the all clear. We don't really know what will happen if that's not the case...
I remember when we set this plan up. I remember every second. Every fear. Every crack in my heart. I remember asking no less than 40 questions and Mike doing the same. I remember feeling things I couldn't explain with words.
I remember when our 6 month plan turned to almost 2 years. I remember when Natalie almost died of sickness only 3 months into treatment.
I remember the tough choice we made to put Natalie on anxiety medication because she was so stressed she would freak out if someone so much as uncrossed their legs while watching TV.
I remember there was a moment when I looked at Mike and realized I was angry with him. I was angry that he couldn't fix this. I was angry that we were so powerless. I was angry so... that I didn't have to be sad... and as soon as I realized how irrational that was, and I let it go, I cried for hours. That deep ugly cry that no movie scene can ever seem to do justice.
I still cry like that sometimes.
I cried like that the first time we lost a cancer friend.
And the second time... and third... and too many more times after that.
These strangers became family living together in housing for over a year. I don't know what survivors guilt is suppose to feel like but, I imagine its something like this. Like watching amazing, innocent little kids get sicker and sicker while watching yours get better. Knowing you would give your life for theirs in a heartbeat, but also being so grateful for every single second you have with your own precious child. Thinking..."that could have been my baby..."
I remember when Natalie got vocal paralysis over night While she was still healing from surgery. We didn't know she had completely lost her voice. She was fine the night before... Late morning I check on her thinking she is still asleep; chemo makes her tired. I go in and find her soaked from tears, lip quivering, eyes scared, and her in obvious pain. She must have been like that for hours. But she made no noise, so I let her rest. She wouldn't even come to me. I had let her down and she didn't want my comfort. I have never in my life felt more pain than in that moment, and thinking about it now makes me physically sick. She was afraid and confused, trying to scream out for me but nothing would come. Like watching a movie with the sound on mute.
And now I'm shaking.
I remember in the first week I saw a girl a little older than Natalie playing with her siblings in the play area. She looked so happy and joyful playing there almost as if everything were normal. Then she paused her playing, took out a green bag and threw up for several minutes, then went right back to playing. No one flinched. Her parents didn't jump out of their seats. She didn't cry. I remember realizing that day that we had a new normal. sometimes I think about that little girl, probably 8 or 9 years old, when I hear a child complain about something like putting their shoes on...
...maybe I'm a little jaded.
I remember all these things and more because I have nightmares about them. I sometimes have dreams that Natalie is throwing up and I wake up and in my sleepy state I don't know if its a dream or if I only woke up because I heard Natalie, on the baby monitor, actually throwing up. Mike has mumbled many things in his sleep like... "are you checking on Natalie?" or "did she get sick?" when I roll over in the bed. I can't remember the last time either of us really slept.
Every sniffle is a cause for hourly temperature monitoring, a warm bath and a call to the Dr.
I wonder if it will always be like this. Does the stress and anxiety ever go away?
As a Christian, people often tell me not to worry about the future. God has a plan for goodness. Have faith.... and I do. I have faith that Gods plan will turn out to be bigger and greater than anything I could have imagined. I know all things work for the good of us who believe in Him. I know I should laugh without fear of the future and all that other Proverbs stuff.
But here is the thing....
Knowing the future is in Gods hands, and knowing Heaven is real and believing with my whole heart that He loves my family and that he wants good things for us.... it doesn't mean the path to that wonderful future isn't going to hurt. Because it does. It hurts.
It hurts so much...
I had said I'd want to know
I would want to be able to say goodbye
I wanted to spend the last few days together....
It was probably a tumor.
She was right.
Trying to be brave for Natalie.
Here is a photo of the side by side CT scans.
To someone like myself who cannot "read" imaging very well, the one on the right LOOKS clearer but, that's just because the tumors were blocking all the organs and bowels (etc.) from view. Some were even sort or squished to the sides because the tumors had claimed the space as their own.
The difference is astonishing...
Im not sure what made you think it was ok to storm into our lives this way but its time for you to go. Leave and never come back. If it seems like Im angry, its because I am.
When you leave you will take nothing from me. You will take nothing from my family.
You will not take the joy from our household. You will not take laughter or smiles from our faces. You will not take memories that would be happy and make them sad. You will not take our faith. You will not take away our friendships. You will not take away our bond. You will not deny my child an education. You will not steel hope away & you will not take my daughter.
I just met you, cancer, and I hate you. Truly, I do. It would be much easier for you to leave quietly, because my daughter is a fighter. You will lose cancer. You will lose. In the name of Jesus, you will lose.
-the angry mommy