Monday, March 28, 2011

Round 2

We are revving up for chemo again.  I could not sleep, so I have been up since Chris left for work at 4am.  I went to bed last night upset and nervous, and it hasn't gone away.  We have to wait for the call that a bed is ready, so I am going to try to fill the day with errands to occupy my brain.  Unfortunately, I can't do much until the sun comes up.

It is a struggle to stay optimistic sometimes.  I try so hard to stay in the present, not worry about what may lie ahead, but the darkness creeps in sometimes.  We focus on how well she is doing now, but there are subtle reminders that her progress is still slow.  

I don't know if it is a universal thing, but I find that modern parenting in very milestone-focused.  We are constantly looking for what physical or developmental milestones our children are hitting, and use it as bragging rights among other parents when they are even slightly ahead of the curve.  The October baby message board that I am a member of is overwhelmingly full of moms boasting about their child's latest progress, so eager for their babies to be done with babyhood faster than their neighbors.  There are countless calenders and schedules for when babies should hit each mark, week-by-week points that we feel we should match. I have seen this as a teacher, too, as people push their kids to be more physically, emotionally or intellectually advanced than others, and don't understand why other kids can't do what theirs can.  This puts a huge amount of pressure on those whose kids don't fit the same schedule.

When your baby isn't following the charts, it is hard.  I catch myself feeling disappointed that she is not doing things that other even younger babies are doing.  I feel defensive, that I have to explain why she isn't "on track".  I watch her every day, looking for signs that she is changing or growing; it can be too much to process.  I stopped reading the "Your Baby This Week" lists, since they just don't apply to her.  Her progress is awesome for her, and she continues to recover and improve, but there is no chart for "What Your Baby With Brain Cancer Should Do This Week".  Even that would vary wildly. 

At every appointment, we talk about her development, what new "tricks" she is learning and how she is adapting to her own needs.  In the next few weeks, we hope to start regular physical therapy that will help to strengthen and loosen her muscles from weeks of laying in hospital beds.  I remind myself to be patient, that we can't do everything in a day.  She will do it at her own pace, when it is right for her.

38 comments:

Amanda said...

Thank you for these honest, heart-felt posts. I'm praying for a peace-filled day for you and little Scarlett.

Mia said...

Hang in there mama!! She will get there in her own time. I am a Sept BBC mom and hate those milestone posts too-too braggy for me. Your baby's progress medically is a miracle, and I don't doubt she'll be a star in other ways soon!!!

Anonymous said...

Your baby is a miracle!! And that is a milestone that she hits everyday.

Mommy-In-Waiting said...

I hope this next round goes well for Scarlett! Wishing you all the best!

Amanda said...

Scarlett is perfect just the way she is...she's on her own chart! You're doing a great job, mama.

Anonymous said...

I couldn't agree with you more...as a School Psychologist, I see it all the time in the schools...and now that I'm a new mom, everything is so milestone focused it drives me up a wall! In reality, there is such a huge developmental window that exists! But, we have it down to a weekly and even daily "chart" of what baby should be doing by such-and-such time! I'm glad I'm not the only one that gets aggravated by this :-)
Just know that, as long as she keeps developing in a positive direction, it is all important and meaningful! She is her own little lady and she will do as she pleases!
Good luck and I wish you peace of mind through this next round...give Scarlett a hug for all of us out in cyberland! :-)

Anonymous said...

I'm guessing that most of those babies (mine included) that can roll over, giggle, whatever, could not do what Scarlett is doing right now. Just saying...

Tiffany (babycenter June 2009) said...

I stopped reading the lists and milestone posts when my son was a few months old- they were stressing me out! It has been much more enjoyable to let him surprise me. I totally understand where your anxiety comes from, but those charts and lists aren't going to make you feel any better. I hope you and your family have a good day and that Scarlett does well with this next round of chemo.

aidensmommy297 said...

I'm from the October 2010 BBC board and I totally understand what you are saying! Since this is my 2nd baby I realized how much I was pushing my first to hit everything on time. I'm just enjoying my October baby and letting her develop at her own pace. Your little Scarlett is a absolute miracle and I am amazed at how well she is doing. You and Chris are amazing parents. Keep doing what you're doing mama!

snowbird said...

You are so right, we are always talking about what they should be doing instead of rejoicing in what they are doing. For your dear angel, everything she does is a wonder:) She has come so far and I am sure the doctors are amazed by her and other babies in her situation. You and your husband amaze me! No one knows what they would do or feel in your situation but we all fear being in a situation like yours. You remain in my prayers and my thoughts. When we sit at our computer it is Scarlett's beautiful face we see first, she is our screen saver. I am sending prayers your way for the next round of chemo. God bless you and your family.

Anonymous said...

My son was in the NICU for 2 weeks after he was born 5 weeks early and had to have an immediate blood transfusion. He not only doesn't hit the milestones for babies his age, but he barely hits any of them for his adjusted age. At 4 1/2 months we had him evaluated and he scored in the bottom 5% which gave him an age equivalence of 7 weeks. I cried and worked with him everyday for two weeks. But then I realized that he was perfect regardless how behind he is and it just lets me enjoy him being a baby a little bit longer. My son was busy fighting for his life for the first couple of weeks, became exhausted and slept the next couple of months, and is now 'waking'up and catching up at his own pace. The same goes for Scarlett. She is so busy fighting, she doesn't have time to worry about rolling over to get a toy. Any steps forward are giant steps for her. I am praying for her recovery and for you and Chris. I hope today is a good day for all 3 of you.

Anonymous said...

I totally agree with you! We base so much on time tables with our little ones, when really they are all diffrent. I have 2 little girls, and as someone above stated, with my fist I was watching the BBC milestones and so worried that she would be behind! Now, with my 16 month old, I let things come as they may; I don't care that she should be saying X amount of words, they will come when she is ready! The same thing with Scarlett, she will reach those points when she is ready! She is such a fighter! Getting through brain surgery and chemo is more of a milestone then any roll, crawl or step! Hang in there! You are amazing! Praying for Scarlett and your family daily!

Bonnie said...

Therapy will be great! My son has had that twice a week since birth (well, since after ECMO and his surgery) and I think it's really helped him along.

I think about your sweet little girl often, she is such an inspiration.

Bonnie
Mom to Elijah, CDH Survivor
fortunatefate.blogspot.com

Anonymous said...

We wish you so much love this week with the next round of chemo. As a mother of a 7 month old precious baby boy, I have come realize that it is ALL about the weekly milestones that will drive a mother crazy. I get the same questions all the time..is he walking, crawling, talking...and all I want to say is "Why, yes he is-all of it and he will start driving tomorrow and college in a month...wow is your baby there yet?" Babies aren’t allowed to be babies anymore and it is hard. But as a mom we can see that they get every moment out of every second and that they do hit the milestones when they are ready and celebrate them and remember then either as a pic in our head, on video or oh a camera. You are doing the most amazing job as a mother. Scarlett is triumphing along and for everything that she has gone thru is doing remarkable! She is one little fighter and she should be the poster child of what our children should aspire to with all her love, laughter, and strength. I know she has changed me just by following yours and her story. Its hard but you, Scarlett and Chris are inspiring! Sending love and prayers from the Cozza's in CT

Brandi said...

We have the best readers and commenters. Thanks, everyone. Your encouragement made me a little teary with this one. I appreciate it. We already got the call, so we're going in early this afternoon.

Sylvia said...

Oh Brandi, I am sitting here with tears running down my face - half because I can only imagine what you are feeling and the other half because of all the other Mommy's comments. They are so right on! Scarlett is in a class of her own - with you and Chris right there with her. She is an amazing little miracle. Sending you a great big hug and lots of encouragement as you begin this next round. You are so entitled to your feelings.......thanks for sharing with us. I will say some extra prayers for your special family today! Lots of love from us!

crystal said...

Praying for you. I know that God is in control. He will be there to give you comfort and will also give Scarlett the strength she needs to fight. Sometimes it feels like we will never make it to the mountain top and when it seems like we are about to fall, God is there to lift us. The great thing about coming out of the valley (trials, heartbreaks,etc.)we are in, is that we are climbing up to our mountain top. Always remember this: Don't tell how big your storm is, tell your storm how BIG YOUR(OUR) GOD IS!!!! That is why we can PRAISE him through our storms. Praying for your family!!! Scarlett is a true fighter!!!

Kristina and Aaron said...

What a beautifully written post - I am sending my thoughts and prayers from Arizona to you in California.

Michelle said...

This post really hit hard and has brought me to tears. I am one of your fellow Oct BBC Moms. I actually suggested that you stop over there because you are so missed. I guess I look at Scarlett as an absolute miracle, I know you do too, that I did not think that it might hurt to see what other babies are doing now. Of course that has to be hard. I am so sorry. Scarlett completely amazes me, and so does her Mommy. I wish you and your beautiful baby all the very best.

Bonnie said...

Scarlett has accomplished so much already and amazes our family with all that she has done! I can empathize that its hard to not only have a sick child, but to want them to be progressing the way the books say they "should". My son was born at 25 weeks and spent his first four months of life in the NICU. I went just about crazy trying to figure out what to tell people when they asked how old he was. Actual age or adjusted age or both? And forget the milestones...I learned that his fighting for his life and winning was all the proof that I needed that he can accompish anything. My miracle baby is now nine years old and nobody would ever know that he didn't roll over by the time he was six months old or that he didn't even say his first words until 18 months. But people are amazed when I tell him how premature he was. And I know, no matter what, that he's a fighter and can get through anything that life throws his way. One day you will say the same about Scarlett. She is a fighter and has already amazed so many people who follow her story through your blog. We are always keeping Scarlett and your family in our prayers. I hope she tolerates this next round of chemo well and it is easier that the last one. You and Chris are doing an excellent job. Hang in there, mamma! -Bonnie, BBC Oct 2010 mama

Anonymous said...

A big "hello" from us here in NC to you in CA! Oh, the dreaded "what your child should be doing" charts. Drives me crazy! I just relish the moments that my baby is a baby because they change too quickly (just look at pictures from when they were born!)
I hope this second round of chemo is as easy as it possibly can be. We are rooting and thinking of you! All the best to Scarlett!

Anonymous said...

Your baby girl has stages of her own.She's fight cancer and there is no other harder stage then that.She's a true miracle.God bless Her and your family always.

Sujheiry BBC mommy from the PHB board.

Anonymous said...

What about that "milestone" that she wasn't supposed to be with us anymore?!?! She took that hurdle...and now is working on getting better. The other babies may have to "fight" a cold and have much more energy! Your little girl is fighting for her L I F E! As long there is progess in the long run...with a few step backs here and there...and some smiles and giggles for her Mama that is all she needs to do right now! She can deal with the easy stuff later...good luck with everything and can't to hear more!

Sarah said...

This is so well written I may even borrow your words for a post you have inspired me to write. I am so proud of you for being such a strong mother and even when our kids seem to be "on track" they may even still be off from other kids their same age. It is a miracle that Scarlette is doing so well and I praise God every day that she is still in your arms smiling and growing. Hugs to you all and good luck today!

Anonymous said...

Just so you know, BBC moms tend to have the most advanced babies out there so don't let it get to you. I am so amazed by reading your blog at how well Scarlett is doing. I agree with what one person said, she has reached the greatest milestone...life! Good luck with chemo this week!

Marsha said...

I couldn't agree with you more. I read those updates every week with my first child and I was so concerned if she wasn't doing what they said she should be. Now she's 3 and I don't even think about those things anymore. We spend so much time thinking about what they should do next that we miss out on them being a baby. I now have a 7 month old and I'm just trying to enjoy her time as a baby because now I know how fast it's going to go (and already has). Scarlett is such a strong baby to have gotten through what she has. I am so amazed by all of you. Scarlett has affected so many people and she has changed the way I think. I think about your family every day.
I will be praying that this round of chemo goes as well as it possibly can. Thank you so much for sharing your lives with us.
Marsha (BBC August 2010)

Marquez_Mama said...

Perfectly said Brandi <3

Jessica said...

I feel those milestones and charts are for parents to make sure their babies are "ordinary". We all know there is nothing ordinary about your precious little angel. She is nothing but EXTRAORDINARY!!!

sillykitties said...

when i see my daughter's cousins (she has one 6 months older and the other a few months younger) do things she hasn't even done yet. And I wonder when she will. It used to upset me because I felt that it was my fault because I had her when I was 40. But now I tell myself, she'll do it on her own time and use what they can do as a marker of what to look forward to. And I watch how their moms handle it so I can go through those milestones with the least problems.

Anonymous said...

I understand what you must be feeling, but Scarlett has reached so far beyond any milestone that any baby can reach. Those milestones are meaningless.... they really mean nothing bc all babies "even out" by age 2 or 3. (I am a teacher and I can assure you that kids who reach early milestones do not turn out to be the best or brightest!!) I think of Scarlett and how she has endured more doctor visits, procedures, operations, medications, hospitals, etc in her first months of life than I have in all of my years. I think to myself, what a strong, brave and special little girl. We could all learn from her...who cares about pincer grasp or rolling over! All of it happens when they need it to. All Scarlett needs to do right now is to heal, get better and stay well. I have read that when babies are working on their physical development, the mental slows and vice versa. God, to think of all that Scarlett is working on at all times, it amazing she can do anything besides sleep! Please dont feel bad...you have enough on your plate already. Scarlett is amazing and I think and pray for her everyday. I hope all went ok today.

Hali said...

As an Oct BBC mom, I feel intimidated by all those crazy posts!!!!! Scarlett is such a lovely fighter....all our babies should be so lucky to be as strong and loving as her. She's "off the charts" in my books....and we are thinking of you during Round 2 (I can hear the bell ringing for her to enter the ring....kick some cancer butt little girl!!!!)
- Hali and Cordie

SLM said...

There's nothing I can add that's not been said here but we follow this blog each week and remain blessed how God works. And to those who don't take moments each day to just soak in THOSE MOMENTS, try it and you can't help but love it. Our world moves too fast! Indeed, the tortoise has outsmarted the hare! God's continued blessings to you all....

jenisbrodysmom said...

Praying for you, Scarlett & Chris. I am praying that you find peace in moments of chaos & strength in moments of weakness. I cannot imagine what you are feeling but I know that you are the strongest woman that I know. Please hang in there and know that God is with you & your family. Scarlett is a miracle & she will get there in the development department. She has come farther than should have been possible & she will continue to grow & thrive. Praying for smooth sailing with this next round of chemo & that she will suffer no side effects. She is a miracle! Praying for you.

l said...

http://community.babycenter.com/groups/a432295/delayed_darlings

There is a group on babycenter called Delayed Darlings. It is am amazing group of parents that understand a lot of the things you are or will go through.

heather said...

I can only assume you mean Babycenter and let me tell you it is terrible. My kids are pretty advanced in relation to their real life friends but on babycenter they are so far behind.

But it is good for something. I remember reading a post about Scarlett, one of the first when you were told to go home and enjoy what time you had left. I remember being so lividly mad at the doctor and prayed that you would get a second and third (if necessary) opinion. I check in here everyday and spread your story every where I go because it is so amazing. Your family is such an inspiration and you are all so strong.

My prayers continue to go to you guys and I can't wait for the day when this is all just a distant memory and no one can believe that fiesty little Scarlett was ever sick.

The Chung Family said...

Thank you so much for your honesty. It looks like I'm not the only one whose heart you spoke to today. My son (our youngest of 3) is behind according to the 'milestone' charts on his gross motor skills. He is my first to be behind so it has been extremely stressful to me. He is a mostly 'perfectly healthy' little guy - the "mostly" being that he had allergies & food intolerance early on which has made him a tiny little thing. Trying to keep up with the milestones and hearing what other kids his age were doing was indeed stressing me out and causing me to worry probably unnecessarily.

Keep your head up! She is such a little doll! Enjoy every day and try not to feel the pressure of what every other baby is doing!

arizonaheat1313 said...

I have been following your story from the beginning, and want to say you have one AMAZING little girl. And have been following her stats and developmental milestones with such joy... in seeing how wonderful she is doing. My heart literly flips when I read about what she is up to now.
I have a 9 month old little girl- and I actually just got done weighing her with our home baby scale to compare it to her dr's scale for todays well check. And she topped out at 11 lbs 8 oz! She is a teenie tiny peanut just like her mommy and my whole side of the family. But it took 3 different drs to finally find someone who agreed with us. She doesnt need tests or feeding tubes. And we dont need the backlash from drs for family about "what the charts say" Its mom and dad that know their children best. All that matters is that they are healthy,happy and hitting all milestones. And with all your little butterfly has been through, she is doing awesome!
What helps with us too- my husband is a school psychologist, so he is well aware of the large gaps for milestones. I see all the posts too on the boards of running, babbling babies. Mine is no where near standing. But she sits like a perfect princess and she is attempting to crawl. Im in no rush. I know she will get there...I am just enjoying her every day for the sweet little girl she is.
Much luck to u...stay strong :)
Michelle.

Lisa said...

Brandi,
My heart goes out to you. I'm with another poster....with my oldest (now 3) I worried over all milestones. With my 7 mo old, I just don't care. They hit them when they hit them. I never even read them anymore.
As with what many others said, dear Scarlett is hitting other milestones....battling cancer. I cannot imagine a harder road. Thank God she is obviously a fighter! Stay strong and keep your chin up. You guys are doing a fantastic job! :)