My arms are empty and acheing...

I can’t believe I’m a mother without…

Life has been twisted and turned upside down. As a mother, I had both the wonderful privilege of holding my sweet son as I brought him into this world…and the horrible chore of holding him as he took his last breaths and left this world, at only 7 years old. June 24, 2010 he earned his angel wings, passing away after an inspiring but brief fight against Cystic Fibrosis. Now I live, solely focusing on living a life to get to be with him again in heaven, and to raise awareness for Cystic Fibrosis research. I am dedicated to a cure, not only for my sweet sons legacy but so that other CF families never experience the greatest loss of their lives that we are now facing. My mother’s arms are missing Connerman, yet he still inspires me daily to leave a mark of LOVE on this world…so for you my sweet prince, mommy will try!



Love Love Love

Always Always Always


Tuesday, December 29, 2009

What I learned in 2009...

I'm no good at resolutions, nobody I know is really...so instead of doing that I will write what I've learned this past year....and what a year it has been.
I've learned that this year has been the WORST year of my life thus far. I've learned that things truly are easier said than done. I've learned who my real friends are, and weeded out who are not. I've learned that when you feel out of control and angry, that if you put on just a little bit of makeup or pretty earrings that it makes you feel a tiny bit better (try it!). This year I learned that I really am my sons' greatest advocate. I've learned the power of random acts of kindness. This year I've learned how much I am blessed to have 3 beautiful sons and a loving husband. This year I learned what a bipap machine is. This year i've learned who is there to support me. I've learned it's truly better to give then to receive. I've learned, truly learned, that God is there for me and my family. I've learned just how much pain I would be willing to endure for the sake of my children. This year I learned that kids can "outgrow" their PORTS and have to get it replaced. This year I learned, or finally truly understood just how lethal CF can be when it attacks full force. This year I met my best friends. This year i've learned how hard it is to watch my son struggle to breathe. This year I learned how to read and understand chest xrays. I've learned more about CF this year by my almost daily research than in any year before. This year I've learned just how easy it is to let your fear take over your entire life. I've learned that you can manage to fit in 10 hospitlizations and 10 rounds of home IVs into one calander year. I've learned how great it feels to give 100% of yourself to others, whether it's by buying the stranger behind you in the drivethru their coffee, or by giving even a dollar to a homeless man. I've learned just how amazing it is to have quiet time. This year I've learned how important it is to cry. and scream. and laugh. This year i've allowed myself full honesty when dealing with family or friends. This year I've learned how important it is to me to not make Conner live in a bubble. EVER. This year i've learned to put my family before extended family. I learned not to look differently at people who go out in public in sweats or pj's, it may just be the only way they can make it thru that day emotionally. This year i learned it really takes a village to raise a child. This year I've learned just how hard being a mom to a special needs child is. This year I've learned how to let things go. I've learned to say no and mean it. This year I learned there are books at the bookstore to read to your kids to teach them about a sibling dyeing. I learned I love the chaos of Christmas traveling even though I swore I hated it. I learned that sometimes silence can be deadly. I learned the importance of surrounding yourself with positive people. This year I learned that going to a midnight showing of a movie is actually not as crazy as I had originally thought. This year I learned how music can drastically influence your moood and behavior. This year I learned alot about our CF docs (one LOVES to roast his thanksgiving turkey in an oven bag! another plays guitar in a band and can't figure out how to play boulevard of broken dreams by green day!) I learned this year that having oxygen and a pulse oximeter in my home will cause me to overpanic. I've learned how to calm down my OCD. This year I've learned that if a doc wants a sit down talk with you it's generally not going to be a good discussion. have backup. I learned not to judge others because you never really know exactly what they're dealing with. I learned this year that I guess Tequila and I can be friends again in the form of a frozen margarita....This year I've learned just how much i despise people who CHOOSE to smoke and kill their perfectly healthy, beautiful lungs when there are thousands who did not chose to have horrible lung disease from CF. This year I learned that you can get a tutor to come to your house for your 1st grader, and that he would still make it to 2nd grade. This year I learned the dangers of CF and hottubs, but refused to limit them from my son because he loves them. This year I learned about the Twilight series. and fell in love with it. This year I learned who my greatest enemy was and learned to accept that it is a very strong opponent. Ive learned that you can't put your faith 100% in your Dr's, that nobody truly knows everything. I've learned that spending quality time with your family is the most important thing you can do. I've learned that the dishes and cleaning will wait for you. This year I've learned how to see thru people's smiles. I've learned that I am on Team Edward. This year I learned that when people say they are ok, they really aren't. This year I learned that clinical trials will not accept my son because his lungs are too sick, even though he could benefit the most from those therapies. This year I've learned that a child can decide to no longer eat because it's too hard to eat and breathe at the same time. This year I learned all there is to know about MRSA. I've learned that sometimes Doctors guess! They get stumped. They don't know...This year I've learned that you get to a point where you have to take your health into your own hands when dr's say there's nothing more for they can do. This year I learned how to not let someone telling me NO stop me. This year I learned how much my heart can break by the smallest of children. This year I learned you can get an Xbox 360 and a Wii in the same month. This year I learned how to keep families connected with us by caringbridge. This year Ive learned how lucky we used to be to only have to go to CF clinic once every 3 months. I've learned that I cannot, and will not take on anyone elses stress for my own, because I've learned I have enough already thank you very much. I learned that I really do love to run, even though i spent years saying I hated to. I've learned to accept help when it is offered. I learned homemade chicken noodle soup really is good for the soul. and a cold. This year I learned how to let Conner Make A Wish. This year I've learned that watching my son's health deteriorate in front of my eyes is truly the hardest thing I could ever imagine watching. I've learned to never say never.This year I've finally learned that sometimes a cure doesn't come soon enough. Sometimes prayers aren't enough to heal. I've learned that sometimes people aren't meant to be healed, it's not their plan. I've learned that sometimes you will outlive your children. it does happen. yes, it really does happen. I've learned that the previous lesson takes a LONG time to truly sink in and become real. I've learned that sometimes it is perfectly healthy to be numb to your circumstances. This year I've learned that at the first sign of a lung infection, i start to worry. I've learned I suffer from anxiety and panic attacks. I've learned to always have a bag packed when I head to CF clinic. I've learned to make small, realistic, and acheivable goals for Conner's health, so I don't always feel so helpless. This year I've learned that anytime not spent loving someone is just time very much wasted. I've learned how silly kids look when they lose their teeth and only one or two big teeth come in those gaps. This year I've learned that when you go to Starbucks too often, they memorize your drink down to the temperature. I've learned I've never been so excited for a year to be done with. Yet, I've learned that next year may not be sunshine and roses as well. This year I learned that my son's health is too poor, and he is too fragile to qualify for a lung transplant. I then in turn learned that I would lay down and give him my lungs this second if I could. I've learned there are no guarentees. There is not always a tomorrow. I've learned to be present in each second of every day. I've learned that the smallest moments make the most precious of all memories. I've learned that sometimes medicine just isn't enough. This year I've learned that my children know who God is and they believe in Jesus. I've learned that if we start eating dinner and forget to say "blessings" my son Hunter will always remind us. I've learned that life really can be as carefree as it is for a child. you just have to make that choice. I've learned that thru all I've learned and how much our lives have changed this past year that I'd still rather be fighting the good fight, for my son's life, then to have already lost that fight. and I've learned that all i can do is fight, so all I will ever do is fight.

God bless you and Happy New year to you!

3 comments:

  1. Love you and your family....your my sister, even though your not asian...I ain't mad at cha. Hugs girl!

    ReplyDelete
  2. You are amazing.... I am proud to call you my friend.

    ReplyDelete
  3. OK....Someday I hope you right a book....Tears were streaming down my face as I read your blog post. You're such a strong women and you have no idea how much you have inspired me these past few months. I love your faith, I love you appreciation for family, and I envy your strength. We say many prayers a day for Connor and we will continue to pray everyday until Connor gets better. God bless!

    ReplyDelete

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From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.

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