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I am Not as Strong as I appear. I enjoy weakness from time to time. We are a homeschooling, special needs family of 6. My 4th son has a Congenital Heart defect, and my oldest has ADHD. I am a survivor of Adultery and mental abuse. I learned that you never really know someone until you are strong enough to stand up and walk away. I love and protect my children, with everything I have. My life might seem unbelievable, but I couldn't make this shit up if I tried! Stick around & let's get to know each other.

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Random Thoughts of a CHD Mom

We had an amazing Mended Little Hearts meeting tonight. Our 3 leaders live in different towns and only really get to see each other once a month. It has always made planning for the group a bit difficult. We had a leaders meeting tonight and were able to sit down and talk about our goals and the future of the group. It was so nice to be able to sit and talk face to face instead of phone calls, emails and texts. We also had a member of UVa staff there who is one of the main organizers of the UVa peds Heart Center and it was wonderful to get input from her about the things that we are doing and what we can do to improve our relationship with the inpatients we support. We talked more about the food bags that I wrote about last night and what we can do to get more food and more donations. I am so excited about everything we talked about tonight!

I have been in a bit of a funk lately.

The other day I realized it was April. More specifically, it is April and in a few months it will be Owee’s 3rd birthday. I have written, several times about how hard April and May are for me, how I struggle to celebrate his life when images and memories of the days and weeks after he was born haunt me.

And now while I have been thinking about his next surgery coming up in June and everything known and unknowing about what will happen then, now I am slipping back into that April-May funk. The up-down days of random emotions.

But I am better prepared this year than I have been in the past. I know what to expect.

Last April when Wee Nut was sick and ended up in the hospital for the second time in 2 months, he decided that he is unable to go to bed without first cuddling on the couch with me. That is a complete turn around from the way he I used to tuck him into bed and he would roll over and go to sleep.

There was a short time when I was starting to get frustrated and annoyed that he wouldn’t just go to bed. It makes my days so much longer that I have to stop everything and cuddle with him before I can finish my day. For the longest time I had to wait until he was in a deep sleep, and often even after an hour, he would start crying when I tried to put him in bed.

My cuddle time with my little Owee every night is one of my favorite parts of my day. I am so tired. I have to stop everything. I love it. It forces me to finish my day early, to walk away from everything and curl up on the couch with him. I watch him sleep, drooling on me. I smell his hair.

Sometimes I worry, if I don’t do it now, I might not be able to do it later. I hate those thoughts. Owee’s doctors are amazing. They are amazing. They are brilliant.

But I still worry. The unknown. It taunts me, sneaking into my thoughts.

Now Owee will cuddle with me and willingly go to bed after awhile. Now I am the one who has a hard time letting go.

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8 Responses to Random Thoughts of a CHD Mom

  1. Becca on August 31, 2011 at 6:33 pm

    I am so glad I found your blog . . . I just had my baby 3 weeks ago and we found out after his birth that he had some major heart defects (critical aortic stenosis, mitral stenosis, coarctation of aorta and a few other things) — he just came home from the hospital after having the ross-konno procedure at 5 days old . . . Anywaysm I’ve been struggling with post partum and fear/anxiety over everything — and I just wanted to say thanks for helping me feel not so alone!

    • Hazel Nut on August 31, 2011 at 9:59 pm

      Becca, you are NOT alone!

      I am so glad that you found my blog! My son is 3 years old and just had his 3rd surgery…I still struggle with his CHD and our life every day, but there is such an amazing and strong CHD Community. I have been on Zoloft for about 2 year and if you think you need help, don’t be afraid to ask your Dr. I suffered for over a year trying to be strong and it wasn’t until my son’s baby sister was born that the PPD hit me really hard.

      How is your son doing? Will he need more surgeries? I will be thinking of you and him and your family, and praying for him and for your strength. Heart Hugs <3

  2. AnnieB. on June 20, 2011 at 6:03 pm

    I didn’t realize you were on the leadership board of Mended Little Hearts Charlottesville. I’m a member!! My little baby Gracie had her BT Shunt and Glenn at UVA. I look forward to meeting you at an event someday!
    AnnieB. recently posted..In Colby’s WordsMy Profile

    • Hazel Nut on June 21, 2011 at 10:32 am

      I love the UVa peds cardiology team! They are amazing :) I hope to see you at one of our events soon :)

      Owain is going in for his Fontan on Friday, I even knowing how amazing peds cardiology here is, I am still so anxious and nervous.

  3. Stefenie on April 12, 2011 at 9:24 am

    Lisa, I am the exact same way in the months leading up to Logan’s birthday. It is a bittersweet time because I am so overjoyed to be getting to celebrate another year with my sweet boy but, just like you, I am haunted by what we have been through. The memories of his diagnosis, how it all came about and the hell that followed is sometimes hard to get past. It’s hard.

    I enjoy ending my days early and snuggling in bed with Logan each night. I treasure it. It is a great way to get me to end my day too, relax and just enjoy that precious moment.

    Thinking of you!!
    Stefenie recently posted..Redneck kind of a weekendMy Profile

    • Hazel Nut on April 14, 2011 at 10:37 pm

      Thanks Stefenie! I am starting to get a little anxious, but am finding if I can stay super busy I don’t have time to think about it…and lots of cuddles don’t hurt either.
      Hazel Nut recently posted..Weighday for Wing NutMy Profile

  4. Laura on April 12, 2011 at 6:34 am

    Lisa, I know the feeling. A few months ago when Riley had her strange breathing attack she became very attached to me at bed time and wanted me to rock her. Sometimes it would be an hour and both of us would fall asleep. Then when I’d go to put her down she would get upset and end up sleeping in our bed. That started 3 months ago and we are still rocking to sleep.
    Last year when Riley’s birthday came around I was in a funk for 2 months or so too. You helped me feel better about being so upset. I hope this year’s funk is easier for you to deal with and not as traumatic as last.

    • Hazel Nut on April 12, 2011 at 8:30 am

      Thanks Laura! At least this year I am not so blindsided and caught off guard. It did sneak up on me thought, and that is just due to all the other things we have going on. I find it hard to say no to Owee when he wants to cuddle, every minute is so precious.

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