Month: November 2013

want

  Up researching Christmas gifts for the kids. Mostly books since they love to be read to. Never would have imagined I would be trying to find books to teach my boys and baby about losing their sister. And trying to find a book to help me speaking to Jennifer about heaven and God…The good ones are all dragonfly themed…Our symbol of her coming back to us again.     I love all of our kids. They are all miracles and gifts in very different ways. Jennifer is our oldest. She was adopted at birth after a long battle with infertility and miscarriage. The fight to become parents…the thorny and twisted trail to her was supposed to be the hardest thing we would go through. I get asked all the time how do I do it with 4 small kids. My answer has always been the same.  Jennifer.    […]

stolen

Today after radiation she suffered a terrible headache. Usually they wait to get me to come into recovery until she is awake since she wakes so easily and happily. Today when I walked in and saw her it was very obvious she was in a good deal of pain. She had her head buried and when she saw me she could barely reach for me. Her nurse told me she had complained of her head hurting right away…but once mommy was there she couldn’t hold it in any longer. She sobbed as quietly as she could…since it hurt to cry…”oh mommy ow mommy ow.”…They had ordered her Tylenol already. The pain was so bad she felt like she was going to be sick. Let me back up to this morning first. A different nurse came in to access her (put the needle into her port)…I could tell this nurse was[…]

change

I am not a tech savvy mama…not by any stretch of the imagination. So me learning how to put pictures on the blog is quite an accomplishment. In doing so I have found myself lost in pictures of our kids…pre-diagnosis. Its like I don’t recognize them anymore…we are all so different….so forever changed. I remember the way it felt back then…but it still feels like I am looking at a different family. I never thought anything could shatter the 6 of us so quickly. We are changed. I look back on the week leading up to her starting kindergarden and me crying. The night before I got into bed with her and just held her and cried into her hair. I was scared for her…and for how the rest of us would manage away from her a whole 6 hours a day. I desperately didn’t want to let her go…in[…]

tonight

Tonight I hurt. Tonight I ache. Tonight I am sad. Tonight she giggled and laughed with all her might. Will I forget that sound? Tonight she asked why….I ask it too baby and I wish I had a answer for you. One day I will walk into her room…the one she shares with her brother and take her things down and put them away. Or give them away? Or save them for her sister? I am trying to make all the memories I can. Jennifer was supposed to be the one to teach Charlotte how to do her hair and paint her nails. So my 6 month old now has pink toes….Her first time getting her nails painted was by her big sister. These things I can control I grasp onto with all my might. I want to run and hide. I want to have my husband here in this[…]

honest

Its so hard to try to get into a childs mind…to understand or even know what they are thinking. I want to anticipate Jennifer’s needs and fears but the kid sometimes seem to be coming out of left field. We got into a extended stay apartment today but she didn’t want to come. She was so worried about what it was going to be like but I couldn’t understand what about it was causing her concern. When we got here she went in with my Dad and came out to the deck and yelled to me that she likes it. YEA! I am excited for it too. I am hoping this will provide her with some sense of normalcy and stability. Another bit of good news is I got help from the right people at Stanford and they got a frying pan to make eggs for her and put aside[…]

gift

This experience has showed me the goodness in people. We are so grateful for all the love and prayers, the monetary support and meals being delivered to my men folk back home. I am trying really hard to help JLK see how lucky we are and to teach her to find ways to pay it forward. Its hard to do though since I catch myself wondering why? I am no longer raising her to be a productive adult or a good wife. I want to give her only yeses. It has been brought up that maybe we should send her back to kindergarten after treatment. As a way for her to know she is ok and not be scared that we aren’t making her go. Not gonna happen though, both since I am selfish and I cant imagine not being with her….(that make me pause knowing I am going to[…]

nine

9 months. I just need to write it. Those words… to get it all out. If you have googled or read my link then you know the average life span for a child after being diagnosed with DIPG is 9 months. On her birthday when we were first given the prognosis we were told 1.5-2 yrs. That was horrific enough. Last week when she was inpatient we met with her oncology team again. We discussed her life and our lives and our plans. Of course there are exceptions…and we all hope our daughter will be one of those…but no way to know. She is struggling. She is so tired. Her eye is getting worse and now her walking is being impacted. We are scared. Desperately scared. I am surprised by my reactions at times and often ashamed by them. Bitter over Batkid. Longing for a bald child in chemo. And[…]

Dream

My fingers itch to write. I find myself thinking about journaling now…it is such a release for me I think I am doing it a little in my head all day long and finding little ways to release all the emotion that is stirring inside of me. Heres a kicker for you. We got another hospital bill today. For the first oncologist visit where they told us about her having DIPG…when we heard the words we honestly didn’t know existed. Incurable. When I opened I wanted to rip it to shreds. I didn’t, actually I think I cracked a smile because of how ridiculous it is. I guess I should have steeled myself for it though..it is a logical bill…But I don’t know if I can bring myself to sign that check. Today Tony and I did our first cross fit. All the people at the box kept saying how[…]

Signs

Today I feel like a good mom. I like this feeling. When we took her down for radiation I asked for a specific way I want her being put to sleep so we never have a bad time like two mornings ago. I can’t remember if I wrote about that but basically she took much longer to fall asleep and the anesthesiologist tried to separate us way too fast and she remembered it and it scared her. I asked questions to figure out what was different in order to make sure that didn’t happen again. I made sure it didn’t and it won’t again. I also asked the nurse putting in the tube the size of it and how versed she was in the procedure since it went so poorly the night before and I wouldn’t be there to watch it this time. I had them pull her off meds when[…]

Too Little Too Late…

*******the follow me button is ready so this is my final caring bridge posting. I will be blogging on our love4Jlk.org site. Find the follow me button to get updates who I post***** I am writing from the hospital. Jennifer had some severe tummy issues so they admitted her. At first they thought she would have to have the feeding tube to get the sheer volume of meds into her. She has been a total stud though, rocking getting it all in herself. She is due for another dose in 20 mins so we shall just see how that goes. What lead us here makes me feel awful. Basically she is severely constipated. Today we were at the Palo Alto jr museum and she decided she had to go, but she couldn’t. It sounds kinda funny but it was awful. She was screaming in real and true pain. She wanted[…]