It has been a while since my last post and there is a reason for that. I was down… yes, just plane old wiped out and sad. The last two weeks had been so hard with no sleep, Collin doing so bad, trying to keep up with everything, doctor appointments, and to top it off Collin does not like to be at home. He likes to go, go, go and in the summer with the heat and UV being so strong it is hard to just go. So, he tends to get angry and lash out. He is getting bigger and so much harder to control. So, add all of this wonderful stuff up and I was in a funk! I am happy to say though that my funk is gone!!! I truly feel that these “funk times” come with a purpose. I know that my Heavenly Father hates to see me suffer but LETS me suffer for a purpose. I am constantly amazed at how each bad run I think “oh I just can’t handle one more bad day” BUT then another one comes and believe it or not… I survived! After these “funk” episodes I come away feeling stronger and noticing the little joys in my life so much more often. The good days just seem so much better!!
I have a magnet on my fridge that says “The pessimist sees difficulty in every opportunity, The optimist see the opportunity in ever difficulty.” I have a feeling that this is how our Heavenly Father sees our lives in the “big picture”. To us it is often times so hard to see the opportunity to grow BUT our Heavenly Father knowing all things gives us these wonderful opportunities to walk away better, stronger, and relying more on him in our faith. I am so grateful for that!!
So, today since the funk is gone I thought I would share some of the WONDERFUL things that I have noticed lately.
1. I don’t know what it is but I feel so blessed on Sundays. Collin is ALWAYS wanting to go “out” but on Sundays he is content with just being at home. He does not fight it, bring us our shoes, or sit at the door longingly looking out at the world that he is missing. He is happy just being with us cuddling, playing and going to church. I am grateful for the blessings we have received for being obedient by keeping the Sabbath day holy. I LOVE and try to enjoy every second of these days. Hey, I even get a nap in once and a while on these calm days!!
2. Regan is such an amazing sister! Well, I already knew this but each time Collin is having a hard time she will say or do something new that just touches my heart. Last week when Collin was acting out he hit Regan in the head. Instead of getting mad at him she took his head and got in his ear and told him something. I asked her what she told him. She replied “I told Bubba that it make Jesus sad when he is mean.” Then I told him “I love you Bubba I am sorry you don’t feel good.” Can I just tell you that she has the biggest heart that I have ever seen!!!!! I know that I am the one that is supposed to be teaching my children but I feel that they are constantly teaching me.
3. I am so incredibly grateful for the recourses that we have available to us. (One day I will share Collin’s diagnosis story but it was a VERY long and hard road.) We will be traveling to the National Institute for Health (NIH) in Maryland next month to see an amazing team of doctors that are doing research on TTD. We have been out there several times and each time I am more and more grateful for them. My sister Nancy will be going with us this next time to help with Regan while we are at the hospital with Collin. As I am planning this trip I feel so lucky that as this beast that is trichothiodystrophy takes over his sweet little body I have some where to turn for answers.
4. I am so grateful to all of my family and friends that reached out to me!!!! Your phone calls, visits, and countless plates of cookies and brownies just did the trick!! I feel so blessed to have such a loving and wonderful support system around me.
5. I will end with how grateful I am for my sweet husband. I am so thankful for Jason and the amazing support he is to me. We make a great team and I could not have asked for a better friend in hard times. I could not have ever imagined that in our almost nine years of marriage we would be so strong after going through so much. I adore and love him so much!!!
14 comments:
Julie I love reading your blog! Every time I read about Regan, she is an example to me on how to be a sister!! What a sweetie!
Julie you have more patience and faith than I probably ever will. You are such an example to me and everyone who knows you! What a sweet little family you have :>)
Hey Julie, you left a comment on my blog that I think was meant for someone else. It was about a hat and leopard fabric, so just want to let you know so you can answer the right person. Don't think my boys would go for leopard print :)
Sis.. I love you so much and everytime I read your blogs I get a tear in my eye, or just out right ball like a little baby, and most of the time i'm at work. I wish I could be there more for you and your amazing family, but you know i'm just a phone call away if you ever need me.
Julie, sorry your family has had a difficult time these past weeks. I hope your trip goes well. Prayers that things will be better. luv ya, daleen
Oh Jules- I am sorry but I am so glad you are feeling better! We are headed to the desert tonight & then headed to Laguna for Kelsey's wedding. Then on Sunday we may be in Long Beach. We will also be in San Diego all week!!!!!! Maybe we can find a time to meet up!?! Please CALL me or I will call you!!!!!!!!!!!!!!
Julie, you are such an inspiration! I hope that your trip to NIH goes well. You had asked how far we live from Dallas? It's about 3 hrs. Actually, I have a sister that lives in Dallas. When will you be there? Maybe we can come see y'all! Just let me know!
Your daughter has such a beautiful spirit!! She seems like such an amazing little girl! What a blessing in your life!
I'm sorry to hear about your funkiness! I was inquiring because I was thinking about ordering some bows for my daughter, and I love the leopard print. I think they are fabulous! We go to Corona Del Mar(Newport). Do you just order them off your website, or do I need to email you?
Julie,
I hope you are feeling better and the funk has passed. Sending hugs your way!
Hey Julie, Its Julie Carr. I just wanted to say Hi and I hope you are feeling better. I was driving the other day and your name kept coming to my mind. I just want you to know that I am thinking about you and that I hope this pasees soon. Being in a funk is no fun. Your children are truly amazing and you and jason are wonderful parents.
Lets get together and have the kids play.
Love
Julie
You are a great example of how to endure well! When I see you, you are always smiling. I can't say that I can always do that well when dark clouds hang over us! I'm excited for you to go back East.I hope that it will bring you strength and comfort getting the latest info.for Colin.
Julie I can't believe we missed each other again! What is that all about?!! Thank you so much for the headbands! They are so cute and you are so very talented! Avie was in desperate need of some new ones! She wore the lepeord one today and look soooo cute! We really need to see each other! Call me when you are up again!
Love you and thanks for thinking of me!!!!
Hey Julie,
I came across another thing you may be interested in or may have even heard of already. I am considering doing it with Caleb. It is called www.littlestherosproject.org
They will come and take pictures of Collin and your family if want for free! And then they use his story on the their website.
Just a thought :)
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