Mother's Day

Treatment is going well.. Annabelle is taking the Pulmicort Slurry better than she did last year and isn't having nearly as rough side-affects as she once did. Prednisone usually makes her very antsy and uncomfortable, unable to sleep but exhausted - I call it Baby-Roid-Rage. She's doing alright for now though.. I can't wait to see when the double and triple chins start to appear, so cute (sarcasm).

The best part of the last several days since getting our test results, is that she has been an absolute champ about wearing her face mask! I am unbelievably shocked at how well she's taking it. She knows that she cannot go outside without it on and wears it without a fight about 99% of the time. As hot as it's been outside lately, I know wearing a mask over your face must be miserable. Her little cheeks get so bright red and she's sweaty but she does it without a fight. She occassionally asks to take it off, or for mommy / daddy / sister to wear it instead.... I just pull another out of our bag and before you know it, our entire family is wearing a face mask while riding bikes and playing. She giggles and knows we are doing it for her. She points to laugh "Mommy wear mask - sister wears mask - Annabelle wear mask, too!"

I can't be more thankful for the way she is handling things this time. I don't know whether to be grateful for the age of finally being able to understand what I am explaining to her, or the experiences in her short time that have made medical necessities part of our families norm so she doesn't fight any longer. Either way, life has gotten a fraction easier with each curve ball. We are learning the avenues of dealing with each upset and how to manage the next bump in the road. Not a proud achievement, but it's one we celebrate.

Madelynne is understanding with much more clarity that her sissy is sick and she's fully understanding why. She doesn't ask daily if she's going to die anymore, she just focuses on making sure we all have a great day and are happy before we go to bed. Sunday night as her and I cuddled in bed together she looked up at me, "ya know mommy, I think Annabelle had a lot of fun today. That's good right? She laughed a lot and liked playing with me.." I hate that my 5yo carries these worries and weight, but she does so with such a passion and genuine love and care that I cannot take that away from her. I see so much of myself in her soft words and I am so very proud of that. There are many many things that I hope my children don't get from me, but this part that Madelynne has embraced of her mommy - that's one of the most important qualities that I pray both my children carry. 

Annabelle is learning and beginning to ask questions about her boo-boo's. Twice now she asked where Annabelle's boo-boo's are, I pointed and told her "Inside your tummy, here. Inside your chest, here and inside your mouth, right here - ahhhhh" She confirmed all the places and agreed, then looked back at me "Why mommy?"

I wasn't ready for that question. But we don't lie to our children. I will never lie to them... My parents never lied to me about sick kids, but to be honest, until my daughter was sick - I never really knew or realized that CHILDREN DIE. All the time they do. Babies die. Children die. Cancer is a nasty, horrible visicious nightmare that isn't only for adults. Accidents happen. Unexplained medical disorders are everywhere. Children left and right have feeding tubes, traches, floods of medications and silent/invisible illnesses that they fight and we know nothing about. I don't want my children to be burdened with this reality about life, but I do want to raise them realistically that these things happen. In our world, in our life forever moving forward, Annabelle will be one of those kids, Madelynne will always be the older sister to a kid with a feeding tube and surgeries. I want my children to look at one another as sisters and people, and also look past all the others with disabillities and also know they are people too - kids, children, sisters, daughters, brothers, etc that just because they may look unique, travel in a wheelchair or wear a face mask, that it doesn't mean they aren't someone with an absolute amazing personality. I want to raise those children, I will, and we are.

Mother's Day turned out well. We had beautiful weather and a family cookout surrounded by all the hardworking, loving and compassionate mothers that we're blessed to have in our families. I looked around a hundred times and watched my girls playing with all their cousins and literally felt my stomach drop repeatedly. I was an emotional wreck on Mother's Day. This was a year from the holiday last year that Annabelle was diagnosed and this year she is running around, appearing much happier and healthier than last, but she's wearing a mask. She's also sporting a tube and can't eat the things on her cousins plates sitting next to her. But you know what? Annabelle's cousin couldn't eat some of the things on Annabelle's plate, just as Belle has certain rules we follow for her disability - her cousins have others too. Most importantly, every part of our family smiled the same smile as I was, we all enjoyed a holiday watching the children PLAY. We have all evolved over this past year. No one payed an ounce of attention to Annabelle's new sporting mask, no one cared that I had to pause playtime to vent / feed Annabelle. Her cousin, that is only days older than Annabelle always peaks curiousity when we're working with her tube.. I love it, she's 2 1/2 and is simply full of innocent curiousity. She's seen her tubey a lot by now and it's becoming nothing new to all the kids in the family. In fact, she was proud to help flush Annabelle's tubing, a high-five and off they were to play again!

As a mother, the hardest thing I have had to do on this entire journey is mourn and bury all my dreams of who I thought Annabelle was going to be. Those are little words but the meaning of them has truly consumed me for years.. it's a battle I may always fight, but one that I am newly working to find peace with. I lost my Annabelle Grace, the one I dreamed of before she was even born.

I knew she would be a handful, and I was right. I prayed she would have curly hair - or at least SOMETHING fun about her hair, since Mady's is so fine. And I got a little girl with a mop on her head full of it's own daily opinion. I hoped she would be as smart as her sissy and have a heart full of sincerity. I dreamed she would be her own kind of beautiful and I was right. All those visions were everything I have in Annabelle. The moment I got pregnant though, after numerous miscarriages, I prayed with every single thing I had that she would be healthy. That I would carry her and cook that child the best I could. I just knew that God wouldn't give me a child that .................. was like Annabelle :'(

When she was born I mourned the failure of my pregnancy. When I laid on the OR table, I mourned the loss of my hard work, planned and prepared for natural birth. As she slept in the NICU, I mourned the distance of not having my newborn in my room / breastfeeding / going home from the hospital together. When the specialist visits started at 2 months old, I mourned the goodbye of normal doctors visits. When her cousin began accomplishing developmental milestones, I mourned every bit of delayed that my daughter clearly demonstrated... and then I hit denial. I put my head in the sand for over a year and pushed her. I pushed our family, I pushed myself as her mother, I pushed her daddy and my other daughter... We pushed together for everything I thought our family was supossed to become until I hit a brick wall. The lies fell all around me and I found myself in yet another specialists office and couldn't answer his questions. I broke down - terribly, and ugly, I broke down "Something is wrong... I know there is and I am so so sorry..... something isn't ok with my baby and I am scared to death".

Since Annabelle was born I have mourned. For the last year I haven't had a moment to thank about all our losses with the child I once believed I would have, I have purely focused on moving forward one day, step, milestone, curve ball, bump in the road, surgery, procedure, pharmacy visit, over-due medical bills, sleepless nights, nurse interviews, record keeping and still finding an ounce of normalcy and the groove for our 'newly embraced' family. We've pushed forward, full steem ahead - and most times with very little support and understanding from all the ones around us. It's hard to see, believe and understand a silent disease. It's hard for anyone that doesn't live, breath and walk in our families steps to accept that beneath Annabelle's sweet smile is a very sick little girl. But this Mother's Day was exactly what I needed. I needed the surrounding love from all our family to watch all the kids just play, live, laugh, giggle, run and PLAY. I needed a reason to stand back and smile and just soak in where we've come in this life. This may have been my best Mother's Day for the most sad reasons. This year I felt the most fufilling and confident as a mother as I ever have. I know my place and my destiny in this life as both of these girls mother. Sunday I stopped asking "Why has this child been given to me" and I confidently embraced "Thank you God, for giving these children to me.. this is what I was placed on this earth to do and I am so grateful".

I read the most moving article that evening. Laying in bed, reminiscing and looking ahead at this life's ride we are on.. I read with tears streaming down my face. The words could have been pulled directly from my heart and daily thoughts, this article is based on my life and it's beautiful. I hope you'll also enjoy.  

http://www.kevinmd.com/blog/2014/05/remember-mothers-sick-children.html