It can be a challenge when family members or friends do not understand why you or your child needs a feeding tube. However, many family members do a great job of supporting their loved one. Encourage your family to learn about tube feeding, lend their support, and share their story. It can be isolating and challenging to do this alone. Tell people about why their support matters.
This one is hard for me to write about because we have had both ends of the spectrum, we have had amazing people who have loved us and been there for us and amazing... and some people who have been the complete opposite. I try to focus on the good, the support, but there are still wounds on my heart over things that have been said and as much as I try to mask those wounds, topics like this bring them up. We are SO thankful for everyone who has come along side us and cared, prayed, supported and love us. I can't even explain to you how grateful we are.
Thank you to everyone who supports us when we do a fundraiser whether its for Children's or Ronald McDonald House or the playground or Tubie Friends. Thank you. Thank you for supporting the places that support us! It means SO much to us! Right now I am looking at a pile of stuff for Ronald McDonald House and it makes my heart smile. I am so excited to bring it all up there soon. If you are still wanting to donate we are collecting stuff through this Sunday.
I was thinking and talking to some people recently and one of the things I commented on was how I really struggle with the articles that talk about special needs parenting being the hardest thing ever. Its hard, I am not going to downplay that for a second, but I have never been a parent to a child who does not have special needs. This is my world so I don't have something else to compare it too. And sometimes I think saying that it is the hardest thing ever widens the gap between us and points out our differences. Sometimes it is hard to balance the wanting our kids to be accepted and helping others to understand the struggles. I will admit that I am not always good at writing or speaking that balance. I'm not looking for pity, in fact pity makes my stomach turn, but there are things that are hard about being a mom to kids with special needs. This morning I have already been emailing back and forth with one of our nurses about something someone messed up last week for a test for Lydia (she did need urine not blood, the whole situation is a mess) and have been working on insurance issues. Yesterday I got to deal with med supply deciding to hide cans of formula under feeding pump bags in a box so that was part of my day. Most days there is something that has to be dealt with. But at the same time I want to show the world how much my girls can do. How amazing they are and how I think people need to invest in people who are different from themselves. Its a hard balance.
I want to thank my special needs mommas for a second. We talk a language that sounds so strange. Pumps, machines, heartache and struggle are normal but we keep on chugging and support each other in the process. Thank you for being my listening ears who know where I am coming from. Personal experience brings a level of understanding that is hard to explain. In the midst of your own frustrations you still cheer us on. And as much as I am just a mom, I have very much changed over the past 4 years, I take life as more precious and live today much more then I did before all of this. We are a fierce group. We fight battles and live with the armor on. We balance the lion and the sheep. But I thank my special needs mom team for supporting us, you fill a place in our lives and I am so thankful.
To our friends who don't have kids with special needs I thank you. Thank you for sticking around or choosing to come along side of us. Thank you for listening. Thank you for learning and wanting the best for my girls. Thank you for coming along side of us, often it is special needs parents fighting to fix broken systems and it means a ton to me when parents who are not directly effected by it join the fight too. Often special needs parents fight because we have to for our kids but when others come and join us it means so much and help carry the weight. Thank you to those people who have joined us.
Thank you to family that has not been judgemental. Thank you for your inclusion and love. Thank you for taking my kids how they are and accepting them.
Thank you to our support system. Thank you to places like Ronald McDonald House who support us in this journey. Thank you to our doctors and nurses. Thank you to those people who read this blog and encourage me. Thank you to people who have taken chances on me. Thank you!
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| Thank you to everyone who lives this out! |
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