The heavens opened today and the sun shone down from a crisp blue sky, catching diamond glitter flecks in the air. It's days like today we find so much joy in being alive, sharing this beautiful day together. Anaya has had a good day today, with less seizure activity than before. I've been asked to bring Anaya to see the world expert in Krabbe Leukodystrophy in North Carolina. Dr Escolar may be able to suggest treatments, meds, and therapies that will help keep Anaya comfortable as she progresses on this journey.
I got our passports in order but finances are an issue. It will be a week long trip across the continent. 2 days of travel each way, driving and then flying from Spokane. I'm going to ask family and friends to help us pay for the trip to take Anaya to see this specialist. I think it is very important that we take her as soon as possible. Anyone want to help me organize a fundraiser?
On another note, My older daughter has gone into an emotional slump. Being 8 is the new 13?I can't help but wonder if my sadness has affected her. She's been feeling bad about every little thing and I'm distressed about how to help her and make her feel better. She says she feels "guilty". Guilty for her thoughts. I'm taking her to the doctor. I think she needs a councellor or a child therapist. We can all use a little help to get through these times.
I think we found a home in Nelson that is pretty perfect for us. It has 3 bedrooms and is cute and clean. It's on a direct hospital route. It's yellow and green with big windows. I'm stoked about it. We just need to make sure we can fit our bed up the stairway to the bedroom before we sign a lease.
The community futures business project I'm working on is coming along. It is "Nelson staffing" and basicly I find temp jobs for Brent and I to do for now, until we can hire a few employees. I'm finishing up some marketing materials and will be pounding the pavement distibuting them this week. Hopefully everything will stay sane. Sometimes I feel like there is no way I can keep going with all these things- but I have to trudge on. We need to pay the bills. I'm glad to have the flexibility to be with Anaya when she needs me. I wish I could be with her all the time. Our moments are so precious.
So happy to hear that things are looking up!!! You are such a wonderful family that is having to endure such hard sad times!! We are always thinking of you and praying that everything works out!! Keep us posted on the type of fundraiser you will be doing!! Keep your head up high!
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ReplyDeleteCamara, I don't have words to say... I only look at the sky and take a deep breath for our little warrior, her parents and her sister. The Calgary sky was so blue today and the sun broke all the cold, shining in the white snow... Thanks for sharing your heart and all your activities with this mortal guy and with everyone... You, on earth, are one of my heroes... If your older daughter reads this, tell her that she is my hero too. I had passed through hard times too, but good people is always around you, supporting you... That's what your old daughter is and she should be proud of that... She is your and Anaya's support.
ReplyDeleteI wanted to take my old car and drive the 600 kms between Calgary and Nelson just to say hi and take my wife's milk... But the weather didn't help... I am not a rich guy, but I want to do something to help. I want to support the trip but I cannot send you big money as an oil guy... :)... I can send you like 20 or 30... I hope it works...tell me how to send it.. :(
In the distance... we keep praying for you... a big kiss for the little warrior..our angel...and enjoy your new home..as you said, every momemnt is so precious...
In the name of love...
well, anoyngmous comment 2. This is not time to fight, nonetheless, despite the outcome, those are not the right words to support. If you don't have nothing good to say to support this hard times, better keep it for yourself and your real life wisdom. Stop pretending?
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ReplyDeleteThat's the right word Camara: Coward...plus evil ass and I will add !@#!@#%%!!!. Don't spend time with a person like that, you know who you are... and for sure...you are my hero more than ever!!! Keep fighting my friend!!!!
ReplyDeleteBy the way, how can I send you my small help to your trip. as soon you collect the money, as soon you can go....
Camara, my heart absolutely breaks for you and your family. My little girl is not much older than Anaya...and I can't even imagine, the thought just makes me ill...but yet you face this nightmare everyday with such optimism and grace, you are truly an inspiration. I don't have any milk or much money to help you with your trip, but if you need a hand moving I have a truck, if you need someone to come help you clean, I'll make time, or if you need someone to just bring you a coffee and take I walk, I'll pop by...please don't hesitate to contact me. jkschimpf@gmail.com
ReplyDeleteSweet dreams and wonderful snuggles to you and your babies.
WOW!! Camara you are an amazing mother!! I cant imagine what you have been going through this past year!! Obviously that person with no soul is not a parent because if they were they would never even imagine words like what they wrote! You are such an inspiration! Solara may not understand right now but one day she will and she will be sooooo proud of you and want to be as wonderful a mother and person as you are!! Keep strong for your girls and ignore this awful person!! I sent some money earlier tonight and will again as soon as I can!!
ReplyDeleteOMG, I had better not even start with what I feel for the poster above who said such nasty things.
ReplyDeleteIgnore, for you know life is so precious and to waste even a second on someone like that, would be a second too much.
Hugs for you and Anaya, I hope you get the money together for the trip.
Lu
xxxx
OH MY GOODNESS "Anonymous #2" .... I am taking deep breaths after reading your unbelievably ignorant comments. I feel sad for you and hope you "grow up" into a more caring, peaceful and soulfull person ... I do not want to waste any more of my time on you.
ReplyDeleteCamara, I feel very concerned for you and Anaya doing this long trip but know you will make the right decision for Anaya's well being. As for Solara, how wouldn't she be affected by all that has happened over the last 17 months. I have seen you with her and you are such a wonderful mother to Solara. You are right, time is so precious and I cannot imagine how you could utilize your time any better than you do. My thoughts are with you and your two gorgeous girls. Take good care of yourself and I hope you are able to "Kick" those nasty/ridiculous comments out of your mind ... some people have absolutely no clue.
To Anonymous, who made the nasty, hurtful comments... Your comments are not helpful or empathetic.
ReplyDeleteYou need to walk a mile in Camara, Brent, and Solara's moccasins before you can judge them or even begin to understand what they are going through. I'm sorry your heart is SO HARDENED!
A mother begins to love her child before she/he is even born (while still in the womb). Any parent who is worth their salt, wants to do whatever they can to try to help their child.
Anaya's parents have more courage and strength than you can ever imagine or hope to attain.
You have not spent time with this family. They are doing their best to care for Anaya and Solara. Also, Solara is NOT IGNORED, but is dearly loved and well cared for.
Thank goodness, comments like yours are in the minority.
"Each day of life is a precious gift from God." Charles H. Spurgeon
"Love bears all things, believes all things, hopes all things, endures all things." I Cor. 13:7
Keep strong, Camara, Brent, and Solara! Continue to have courage. You are doing the right thing! I am SO PROUD of you guys!
Love, Marlene
I am SO THRILLED that Anaya is getting to see Dr. Escolar. We were actually there just last week. Karis has been struggling with seizures too and we're aggressively working on a regime to stop them. She hasn't had a seizure in 5 days now :)
ReplyDeleteKEEP FIGHTING FOR HER CAMARA!! Dr. Escolar will be such a blessing! I'm sure if you've been anywhere near Karis' blog you've seen that if we find one more baby with infantile onset to complete the Natural History Study that Karis is in we can start a clinical trial of Enzyme Replacement Therapy!
You and your family are in my prayers. I'd love to hear about about your trip. I know it's stressful and expensive, but I promise it's worth it.
Much love,
Katie Almy
Camara, I am so sorry you are going through this, and hope you somehow find a way to get to the doctor in North Carolina.
ReplyDeleteAs far as Anonymous Nasty Commentor - I'm sure you just want a reaction, and I will waste a very small amount of time on you, not because you deserve it, but because Camara and her family do not deserve to be attacked as you have done and justice needs to be made to them. 'Expensive things you want for Anaya' ... to you they are things she "wants" for Anaya (as if she has a choice) and they seem expensive. To the rest of us... there is no choice, and is there really a price that can be put on making any day of Anayas life more comfortable or a little easier?
Can I venture out to ask whether you know whats it like to be eight years old and knowing that your baby sister is dieing? Do you have any idea whats she's going through? Your gross assumption about her wanting her sister to go is shockingly cold, an unwarranted statement and likely very, very far from the truth. Live one day in that eight years old life and then tell me what you think.
Not once has Camara every tried to 'deny' the outcome of Anayas life on this blog. NOT ONCE. She may say she WANTS to deny the outcome, or change it, but she would be going the wrong direction to pretend she doesn't know whats going to happen. Again, I challenge you to live one day knowing you will burying your baby girl.
Grow-up? Really. Don't be ridiculous. Camara likely had to grow up faster than anyone could imagine when this harsh reality hit.
Let her go in peace? Exactly what Camara and her family are trying to do, by making Anaays (maybe) last days comfortable. And in case you didn't know, Camara and her family don't get to decide when Anaya goes. She decides, or if you believe in a higher power, then they decide, but not Camara. Not Brent. Not Solara. Not you, for writing this mean comment. Nobody gets to choose. So you should just let this little family get to spend their very few days with their beautiful daughter in comfort and happiness. Not in sadness, thinking about what you (a heartless stranger most likely) says to hurt them. Your comment was not helpful, insightful, thoughtful or nice. Why come here if you don't want to hear about their life? Your time is obviously better spent other places. You are not welcome here.
Again, Camara, I am so sorry for all you are going through. I really do hope you can manage to get to North Carolina. My thoughts are with you guys.
Camara, get Anaya the best help you can. I was in Calgary and gave milk to Anaya, but I would like to help with your trip, how would I do that? I wish I could do more, I have a little girl too and can't even imagine what you are going through. As for that rude comment, all I can say is don't even waste your time on that a-hole. He/she obviously is not a mother and if they are, they shouldn't be.
ReplyDeleteCamara, I have been following your blog for a while now. My daughter's name is Anaya too. All I can say is that I am amazed by your strength. You are a wonderful mother caring for your children in the best way that you can in an incredibly hard time. I'm so sorry that someone would post such a horribly negative comment. Blessed Be.
ReplyDeleteI came across your blog a couple of months ago and I have not been able to forget what your little girl is going through. I pray for her every night. I pray that God will reach out and give her a miracle. A thought came to me- would stem cell blood help her at all? I don't know much about the topic- but the thought came to me one night and I wonder if there is any research on it. I am wishing for a miracle and some peace and comfort for your daughter and your family.
ReplyDeleteCamara:
ReplyDeleteIgnore the comment from the moron who posted it. They have little concept of life or the value of it. They are ignorant to a mother's love and the bond you, Anaya, Solara and Brent all share.
I find it amusing that they lack so much integrity to post such strong feelings/convictions but do it in an anonymous manner.
I suppose just attributing this to them being an idiot would suffice.
OH AWFULNESS! to ignorant comment #2...despite your shittiness and hurtfull words towards camara and her life which you know nothing of....we will all pray that you never have to actually go through the same painstaking ordeal or caring for a very ill baby as she is right now. do you not think she has considered the cruel things you say? of course she has. you have NO right!
ReplyDeleteits apparent from not only your lack of empathy but also your general ignorance that your not a mother. i hope you never are.
camara. i am making a poop sandwich for this person right now!
~heather
Wow to read the post by anonymous I am absolutely shocked that someone would have the gull to post such horrible things to a family that is struggling to keep their heads above water as it is. This family is fighting a fight that most of us will never have to endure. They need all the support that we can offer. What are you hoping for by posting such horrible things? Do you want them to give up? Do you want them to let this little girl die in pain and discomfort? You are a disgrace to all humans.
ReplyDeleteAs for Solara I can attest that 8 is so the new 13. Even if her baby sister wasn't sick she'd still be quite emotional. My daughter just turned 10 last week and I remember looking at her when she was 8 and thinking "if she's this moody now what on earth is 13 going to be like". Of course dealing with a sick sibling probably magnifies all of this by 100, so a little counseling will probably really help for her. Just having someone to talk about how she's feeling will make a world of difference.
Camara pay no attention to those horrible posts from anonymous. We all can see that you are doing an amazing job.
Annette