I have spent the day racing around, trying to repack clothes, supplies, food, and somehow get somewhat organized with all of Noah's medical stuff. So much has changed since we were home last time. Hopefully we will get all our supplies and prescriptions by this evening. Right now I am thinking that I am a bit crazy to attempt to get away already with so much waiting to be done at home. But it can all wait some more. And it will be worth it, right???
In the midst of this, today I have experienced the downside of having a public blog for all to see. I got an email today from someone who has concerns that others are seeing what I have written (particularly of our travel issues) as magnifying our problems. Since I tend to be too sensitive and cannot brush these things off very easily, I feel the need to address it here. Just so it is clear, this is a public blog of our family's very personal thoughts, feelings and experiences. I am disappointed that others feel the need to judge what I write or to compare it to others who are suffering. Sometimes I need to vent, and this is the place for me to do it. I am not expecting everyone to agree with everything I post. I am not comparing our travels or our medical system to others in third world countries and I am well aware of those issues. I know that we are very fortunate to have all that we have and to have access to these opportunities for Noah. There are so many others of you who have much larger burdens to bear, which was very apparent at Sick Kids.
However, we battle everyday for Noah...we battle the medical system...we battle other systems that create obstacles for special needs...these can get very frustrating and overwhelming. Even though some of these battles may seem very minor to others, and perhaps rightly so, this is our world and for us at the time, they are huge. I do not expect others to understand, just as I cannot begin to understand what others are going through. We all have our own battles to face. But, I do expect this to be a place where I can freely express what is going on in our family.
Very much looking forward to spending this evening with friends that I have missed terribly. Tomorrow I am off to my parents cabin with Noah, and the kids are each spending a few days out at Turtle Mountain Bible Camp. Brad has to stay back to catch up on work. I will be away from the world of computers and blogger for a while and hoping for some relaxation. So no news on here will be good news!
On September 21/05 we were blessed with a beautiful son. Born with a chromosome 12q deletion (q15q21.2), the challenges were many...cleft lip/palate, complex feeding issues, developmental delays, failure to thrive, multiple infections, blood clots, asthma, sleep apnea, GI and pulmonary bleeds, TPN dependency and kidney issues. Noah embraced life and taught us how to love. On July 29/09, Noah's journey ended, leaving us on a new journey...this journey on the pathway of grief...
About Me
- Nichole
- I am mom to 3 beautiful children. I also work casual as a nurse. Our life is a crazy one, and nothing like we ever expected it would be. Yet, this journey has changed me and the way I view others. And it has helped us slow down and enjoy the most precious things in life. I wouldn't trade those lessons for anything.
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17 comments:
Nichole:
First, I am thrilled that you are home! I am glad that you returned to a house made ready, and that you are able to connect with family and friends. I can hear the relief in your "voice" as you write.
Second, I hope you have a wonderful time up at the cabin. Won't it be nice to regroup, actually spend huge amounts of time outdoors and just...breathe...?
And lastly, I am so sorry that you had an...unfortunate, let's give it that...email. You all face so many challenges with such courage and grace. You deserve a place to vent a bit! We all benefit from being able to keep up to date with Noah's progress and being able to offer our words of support. I hope you won't let that email get you down too much.
I have had another reminder of how precious life is - we learned yesterday that the 17 year old daughter of my dear friend has had a recurrence of the cancer that she fought at age 8. Such a recurrence of this type of cancer is very rare, but the prognosis based on past results is not good. Sarah and her family will share a place in my prayers with your family. May God grant them strength in the face of the unknown.
I hope you have a wonderful, relaxing time!
Alison
Well said, Nichole. Blessings and prayers to your family as you have some 'nature time'. Peace be with you!
I would like to say, that most people have no idea what these past 4 years have been for you and Brad. Not only fighting for Noah every step of the way, but sacrificing time spent with the other 2 kids. We have seen you face many dissapointments, but have remained strong throughout everything. As your mom, my heart aches for you today. Your joy at being home has been overshadowed by an insensitive comment. I am so very proud of you, and I have sensed your vulnerability as you share your heart on your blog. You have alwys been honest, and very open. Don't let anyone ever critisize you for that. May the Lord help each one of us to have a sensitive heart of compassion, and before taking the speck out of someone elses's eyes, maybe remove the plank from our own.We love you, and look forward to spenidng time with you this week. It has been a long time since we have done that. Can hardly wait!!! mom
Nicole - you are wonderful in that you feel willing to share your family's journey so openly with us all through this blog. Not all of us have that courage, even if we face our own battles and challenges. I commend you for your honesty and your faithfulness. It continues to empower others - way beyond the church family.
You might be using this to tell Noah's story and to vent about things that challenge your lives along the way - but I need to tell you that your faith, your love for your kids, and your continued hope blesses me and my circle of friends each and every day.
God bless you all as you take some time to refresh.
- Myrna D
Nichole...
As hard as it is...please don't give that email another thought. What a crazy notion...that you are magnifying your struggles??? Really? Goodness no. I have never seen anything you have written that way.
Quite the contrary, honestly.
Hang in there! Enjoy the time you have at home with your sweet family!!! :) We are praying for you!!!
The person who worte that email needs a smack in the face in my opinion! Goodness! Let them walk a day in your shoes and see how they feel.
Anyways, enough of my ranting (my husband would accuse me of being rude ;) ), I'm so happy that you guys are able to spend some time together as a family!!! That is just awesome! Have an absolutely amazing time! :)
Glad to hear that you guys are home and doing well. Have a great time at the cabin-its much deserved.
Love you all!
Take care and God bless.
~Rissa and family
That is horrible that you received that! I hate getting reminded that other people can and will do stupid stuff because of a public blog. I have stopped writing in mine because of it and it really makes me mad.
I found your blog from your link on the DIS and I have really enjoyed reading it. We don't know each other, but I do pray for your family and Noah and could never even begin to understand what you and your family have to sacrifice to keep him well.
Try not to stress about it...you have many more things to think about!
Have fun at TMBC Kailyn and Joshua...we love it there! And Nichole, I love this blog and have followed faithfully for a couple of years now...keep writing, and we'll keep praying.
I've been praying for your family for along time. I have a little Noah as well. He has Trisomy 8. I was just wondering where you get your little "slippers" that your Noah wears.
I am replying to a note that you are referring to.The concern was not as judging but in how the last few entries look like she is near exhaustion and as a result experiences are becoming too large to handle smoothly. I know Nichole as having a "gentle spirit" and we are concerned for her. It was a personal note and also stated how we admire them and their ability to cope and work at trying to keep their family life.We also uphold them in prayer as they walk this difficult journey and did say that they are fortunate to live in Canada where health care and treatment is available unlike many countries [even USA].We are wanting God's love & "peace" to give them a MUCH needed rest at the cabin. Her parents are great encouragers and prayer warriers. We also love Noah's smiles.
hey Nichole (and Brad, Kailyn, Joshua, and Noah!) -
I hope you guys are doing well! I have been checking back here every day to make sure everything is going well!!! :)
I am glad to hear no news and hope that really means that everything is great! :)
:) mary
Hope you had a good time of rest and rejuvenation.;
Perhaps the person who sent the email and continues to make insensitive comments should save some typing and simply say "Sorry".
I am embarrased that other readers of your valued blog would be equally insesitive, unkind, and rude.
You are an awesome woman, mother, and wife. Your kids, your husband, and your friends are lucky to have you in their lives.
Missing you all...hope you had a very restful week. You all deserve it! Hugs to my Bean...
I hope you guys are doing good and had a great time away! :)
Sometimes people just need to keep their opinions / negative comments to themselves or get up enough nerve to post it out front and direct if its such a big concern since everything else on this blog is out for everyone to read.
In being on a multitude of forums and being a mod on a couple etc such behavior is just childish. People (old and young) can be "ignorant" of the facts and just assume.
Looking forward to camping in the future and hope you can make it.
Kent
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