Friday, March 16, 2012

A Moment

Finally found where Dalton hid my computer after he wrote that last post, so I do apologize for my lack of writing! These past few weeks have been full of learning opportunities, lots of tears, and even more smiles. Being a Mommy has been so rewarding and I finally feel like I am getting the hang of it. I am sure every Mom has those days where you feel like you are doing absolutely everything wrong. You question every decision you make for your child, questioning how it will affect them. Then of course after the decision is made you beat yourself up for not making the "right one".
Our days spent in Doctors offices and with therapists are actually the days I feel the most in control. Surprising, I know. I feel I have armed myself with the knowledge to be able to advocate for Dalton and his special needs. Along with my teaching degree I feel I have rightfully gone to medical school as well. I find myself rattling off medical terms like it is nobodies business and people stare at me in disbelief. I promised Dalton that no matter how confused or overwhelmed I got from day one, I would fight for him to get him what he needs. I am proud when a therapist looks at me and says "Wow. You're doing a great job working with him", or "I can't believe you have already applied for that federal funding- I'm impressed." I know that when Dalton can understand it all, he will appreciate all the work we have put in to being proactive rather than reactive (a lesson I learned from my parents).
Right now we are seeing physical and occupational therapists working on several different things. We are working on his neck and leg strength in his physical therapy. Also, we are trying to help his little feet turn out using several different exercises and infant massage to assist us. In occupational therapy we are working on his inconsistent suck. I have started nursing (somewhat) but he is not taking to it as easily as we would like. He is making great progress in his weight but is still behind where he should be, not for long though! The cardiologist thinks that we will be able to hold off on his next surgery for another year or two. The hole in his heart is pretty large and the left side is always going to be smaller than it should be. We are monitoring it closely to make sure he does not get too stressed out or is working too hard while trying to eat. He will see a developmental therapist as soon as he starts to show any sign of delay (prayers this never happens!), but we are 100% prepared for when that time does come.
So, I named this post "A Moment" for a reason. This moment I speak of was something so special to me that I even hesitated to share it with everyone. But I feel that all of you have been such a huge part of the journey and have seen such raw emotion from me already that I figured, why not?
Two days ago it was right after his 5 a.m. feeding and Jonathan had just left for work. I laid down in bed and put him in the bassinet right next to the bed, hoping for a few more minutes of sleep. I reached my hand in and started to stroke his hair to help soothe him back to sleep. The next thing I know he gently took my hand and brought my two fingers to his cheek and just held them there. We "held hands" for the next 15 minutes or so and for some reason I just wept. I cried out of joy for what we have overcome and out of fear for what is to come. I love him more than anything in this world and never thought a love this big could even exist. I know that Dalton is a true miracle and a gift from God, sent here to teach many people so many amazing things. He has already shown me how to be selfless, determined, and grateful for everything we are given. To see what he has done in other peoples lives brings me such pride that he is my son. That was a moment that I will treasure forever in my heart. There was just something so pure and innocent between the two of us in that moment. It is so hard to get caught up with all the appointments and running all over town to get him here and there. I often find myself so stressed out about all of the stuff we have to do that I sometimes forget to enjoy those moments. This is my reminder to myself and all the other parents out there- take those moments and breathe them in, embed them in your hearts, and never let them go.

**This is my special shout out Thank You to my amazing brother, Kyle, and my little sister from my sorority, Alison, for setting up a special non profit fund for Dalton's medical expenses- Click here to find out more!. All of the donations are going to help us provide Dalton with the appropriate medical care he needs. You are all so thoughtful and we are blown away by the generosity of everyone. We love you all!**

Also, check out the amazing photos that Christy Martin took of our little family, here. I'm kind of obsessed!

My fav!

12 comments:

  1. I am always excited to read how well Dalton is doing. I dont know you personally but have been praying for you ever since I started reading your posts. I live in Montana and work as a Family Support Specialist, working with children 3 and under with special needs. I recently found out about a grant that will help with medical expenses. If you would ever like to pick my brain for early intervention or resources feel free to through facebook or i can give you my email. on facebook i have liked you page. i am not sure how to message you though. You can find my on facebook under Amy Meissner, my profile picture is of my little boy dressed as a puppy. Prayers are always being sent from my family. Take Care

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  2. Special moments like those you will remember always. The pure sweetness of a newborn is so precious. Thanks for sharing. You are such a great mom!

    Kara G.

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  3. Truly a blessing each & every day! I send continued prayers 4 Dalton's health and strength!! I know how Impowering it is, to know you have to fight for your child and I send continued hope strength and courage to you!
    Beuatiful Pictures!

    Thoughts & Prayers,
    Melisa

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  4. I found your blog through someone else's blog. What a little miracle and blessing Dalton is. So many women would have chosen the "other option" once told the prognosis of their pregnancy! God certainly had bigger plans and is def. not done with y'alls story, so thank you for being obedient and placing all your faith and trust in the Lord for others to witness!

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  5. I think you're amazing and y'all make such an adorable family. I've always been a sucker for dimples. Keep enjoying those special moments, because where children are concerned, time flies and before you know it, years have passed.

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  6. Your little family has been an inspiration to me since I first read about you on Kalee Howard's blog!! Not a day goes by that I don't pray for the 3 of you, many times a day. I always pray for the doctors, therapists, and nurses that take care of Dalton. Through all of the miracles and strides, I always pray for you and Jonathon, because the stress, day-to-day appointments take a toll. But then, that comes with being a parent!! As a Former Special Ed. teacher, that taught severe/profoundly handicapped children, I know as you have said, about all of the therapists you have, and what miracles they can do. I shall keep you 3 in my prayers, knowing our Lord is our greatest physician!! You are amazing!!!

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  7. Hi Dalton
    You are an amazing courageous, strong and determined fighter. You are a brave warrior, smilen champ and an inspiration. You are a super hero, super trooper, and a tough cookie.
    Michael Jordan
    Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it.

    Why didn't the coach trust his team? There were too many sneakers in the locker room.

    http://www.caringbridge.org/visit/champ291

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  8. So beautiful, Kara! Can't wait to see you and Mr. Dalton!

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  9. i will never stop praying for him i ask his dad everyday how he doing and when am going to see i love all the photos u have put on your page he is so special my prays will never stop.

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  10. Hello Kara. My name is Shelly and I have been following your journey for months. I am Marsha's sister-in-law from Canada. I have to tell you that this post really resonated with me. Your writing speaks right to my heart.
    We spent all of November in the NICU when our baby was born in November, so I totally understand how busy life gets with the follow-up appointments and new motherhood. You reminded me just how special our little ones are...thank you for making me pause and appreciate my gift.
    Keep up the great work on the blog....you have no idea how many lives you have touched by sharing Dalton's story. He is a miracle.

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  11. Thank you for the reminder to soak in the special moments and to hold them close to our hearts. The presence of God's goodness oozes from your updates. I will continue to pray that Dalton contantly suprises you and your family in everything he accomplishes.

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  12. So Happy to see an update. I pray all the time for your family. I hope you got the hat in the mail. I never heard from you, but I know how busy you must be!!

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