Loves for Lily Ruth a person first story for all

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by Pam Kumpe
Tribune Features

Lily Ruth Robertson is now six months old and has found her feet, and constantly plays with them. She’s the daughter of DeAnna and Nick Robertson and the baby sister to big brother Brayden, who is three.
Last year, her mother DeAnna, when she was 21 weeks pregnant heard that Lily Ruth was high risk for Down syndrome, and then a few weeks later she heard the words, atrioventricular septal defect (or an AV canal defect).
“We found out that Lily Ruth was born with a partial AV canal defect, and she’ll need surgery to repair it, most likely by this November,” DeAnna said. “We’ve taken an unexpected journey with Lily Ruth, and this has sent me to chronicle the journey on my blog and on Facebook.”
For DeAnna wants to raise awareness of what life with a child with Down syndrome and a congenital heart defect (CHD) is really like, and at the same time let everyone know how beautiful she is, and what a blessing she is, too.
Lily Ruth is teaching her family she can do anything, just on her own time, which also teaches Nick and DeAnna to be happy in the smallest instances.
Brayden has also become fiercely protective of his baby sister, too, and DeAnna said there are some days he is jealous and doesn’t have much to do with her, but you can tell he loves her and would do anything for her.
“I feel weak most days, but my husband says I’m strong. It’s so much to keep up with that oftentimes, I feel like I’m barely keeping my head above water. But with each milestone reached, I feel like we’ve reached a mountain top. I feel very honored that we were chosen as Lily Ruth’s parents, and I want her life to be a light to others.”
However, DeAnna feels like she’s in a constant state of worry right now as Lily Ruth was also diagnosed with infantile spasms recently, and now every movement has them on high alert.
“I’m always thinking is that a spasm? Is she having a seizure? Was that just typical baby movements?”
With the spasms, this adds to the anxiety as they face Lily Ruth’s heart surgery in November. DeAnna bounces from worry and terrified, to knowing Lily Ruth has the best doctors and is in great hands.  “My heart doesn’t always see the logical side of things.”
Their faith has been shaken throughout this season, and even though they love Lily Ruth the way she is, their desire is that she didn’t have the health issues - heart defect, feeding problems, and infantile spasms.
“I’ve been mad at God, but I know He can handle me being upset with Him. It’s just like any other relationship, it’s not always sunshine and rainbows. But Nick and I have prayed more for our family than we have at any other point in our marriage.”
When the diagnosis came, DeAnna said she was initially very scared, but now she just sees her daughter, and has celebrated her birth. “She’s our baby, and made in a God’s image, and I know that His plan is perfect.”
But that hasn’t kept this couple from being afraid, and DeAnna said one of her biggest fears was how it was going to affect Brayden, not because of Down syndrome, but all the time they would have to spend away from him with Lily Ruth’s surgeries and care.
“I shouldn’t have ever worried. Bray has handled it marvelously. I, on the other hand, miss him greatly when we’re apart. He loves to tell everyone to come look at his sister. He doesn’t see Down syndrome, he sees Lily Ruth.”
DeAnna blogs to encourage others to see Lily Ruth as a person first.
“I want other women who are pregnant and who know their child will have Down syndrome to see how loved Lily Ruth is, and maybe they’ll keep their babies. Nine out of ten women with a prenatal diagnosis decide to terminate their children, and I want to change that!”
Lily Ruth has more appointments than most, meeting with two different therapists – a physical therapist and an occupational therapist. DeAnna and Nick learn exercises to do with Lily Ruth, and they have recently been given the go-ahead to begin baby food. Lily Ruth also meets her cardiologist monthly, not counting other specialists.
To learn more about this journey with Lily Ruth, go to www.lovesforlilyruth.com, or go to facebook.com/LovesforLilyRuth.
 

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