Last night we drove to Houma for baby Owen's wake services. My sister stayed outside with Tripp while my mom and I went in. This was the first time I had been to a wake for a baby and I was scared at what it would do to me (especially a baby with JEB). But I knew I had to be there for Katie and Allen. And to my surprise, it was okay. Of course it was sad and we cried, but there was also an "at peace" feeling about it. Katie and Allen amazed me at their strength. But like they said (and like I know ALL of us EB parents feel) they knew their baby was no longer in pain and that he was in a safe place. Just like Leah, and all the other EB angels in heaven. Meg, Leah's Mommy, wrote a beautiful post about this. Read it here.
We were BLESSED to have gotten to meet Owen, Katie and Allen. They are such kind, caring, and wonderful people. God puts certain people into your lives for a reason... and I feel like God did just that with this family... Because just as we had taught them "EB" things and how to bandage, etc, etc... They have shown us how lucky we are to have gotten to spend 11 months and counting with our son. You know, you always try and think of the good.. but it's hard when you have a sick child who is in pain all of the time. But God brought this family to us so that we would be grateful. I hope to God that we will remain in touch with this couple and I pray that with time they can come to peace with the whole situation. I can imagine you ever understand why God takes a child away from you... that has got to be the hardest thing to comprehend. All I can do is pray for them and be a support system for them. I just wish I could do more. Even though you've come to peace with things and you know your baby is pain-free, there still has to be the feeling of unending sadness. My heart breaks for them. I think about them all day long. Join me in praying for this couple and for their families. Thanks :)
Yesterday I received the nicest gift. A very kind lady named Beth sent me the sweetest email about a week ago after reading my blog. She said that she reads my blog and she saw Tripp's picture in the cart at WalMart. She said she was so glad to see Tripp out and about and she wanted to send me a shopping cart cover to make our trips out a little easier and more comfortable for us. I was touched.
Beth ordered the shopping cart cover for Tripp from another very kind lady named Rachel. Rachel has a store online with all kinds of precious items. She said she would be happy to make the cover and she also included extra batting at no additional charge to make it more comfortable for him. The cover is BEAUTIFUL. We didn't go shopping yet, but we did go to Olive Garden last night after the wake and got to use it in the high chair. It worked out great and all the extra padding made it extra comfy for him and even gave him a little play area in front to set his toys. See?
Please visit Rachel's store and check out her shopping cart covers, along with all of her other baby products. www.michaelmooodesign.etsy.com This cover is top notch. It is very thick fabric and excellent quality! I loooove it!! She also included a seat belt so we wouldn't have to use the yucky one on the cart!
Sorry about the poor quality pic! It was from my phone and it was dark in the restaurant! I promise there will be more pics to come when we get out shopping!!
Thank you Beth and Thank you Rachel. A simple gesture goes a very long way!!
Tripp's eye looks a lot better today and he is actually feeling a lot better. Besides him being spoiled rotten he has had a pretty good day. As of now, our next doctor's appointments are May 4. I stacked them all on one day again, which I like! We see the ENT to check his ears/trach, the dietician (finally), and the eye doctor. So please continue to pray that his eye stays well and that we can have some "normal" days again. Whatever that means! ha.
Here are some videos from last week.