Psalm 139:13-16

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be."

Wednesday, August 8, 2012

Eating Issues and Other Ramblings...

I have wanted to write a post about Grace's eating issues for a while.  However, I've been anxious about the comments I might get in response it.  I'm now ready to be honest and hopefully I will receive positive and encouraging comments!  :)

Grace has had eating/feeding issues for a while now.  When she was a baby, she took her bottles with virtually no problems (I even had to try a lot of different bottles because she was spitting up so much).  The only small problem we had was she would take a while (longer than 30 minutes at times) to finish bottles, but after briefly seeing a speech therapist through early intervention, this problem was corrected.  We sailed along and she did fine with transitioning to rice cereal and to stages 1 and 2 baby foods.  She loved to eat, and would pretty much eat everything.

We started having trouble when we were beginning to try to transition to a sippy cup and table foods.  We see a speech therapist on an as needed basis currently, and she has helped us so much!  Through a lot of work, which at times seemed like it wasn't working, Grace now eats most table foods.  She still gags on slippery foods, especially fruits like peaches and strawberries.  But she is able to eat pretty much anything.

She still refuses any type of sippy cup.  She is very sensitive to anything new.  I tried to take away one of her bottles thinking she would be more thirsty and would cooperate with a sippy cup.  That did not work.  Instead, she started getting a little dehydrated.  So I added back that bottle.  She currently takes 3 bottles a day (at 10, 3, and 8) in between meals (at 8, 12, and 6).  Thankfully, she is now only taking whole milk (no formula).  She won't even hold her bottles, although I have recently been using handles that I found that go with Avent bottles.  I've been placing her hands on the handles.  I think she will get it eventually.  During meals, we try to get her to take liquids (milk, water, juice) off of a cup edge (we use nosey cups).  She will take anything from nothing on bad days to maybe an ounce of liquid with meals on really good days.  She is usually pretty offended by even seeing the cup.  I've tried working with her with straw drinking, but she hasn't gotten that yet either (although we haven't been working on that long).

I have a hard time with knowing the balance between pushing her to overcome her sensitivities, and when to be okay with her being sensitive.  

We make her try and feed herself puffs or goldfish (at least 5) before her meals.  This consists of her eventually trying to pick up the puffs/goldfish (after a lot of encouragement) and then us putting our hand around hers so that she will hold it in her hand.  Then we guide her hand to her mouth and put the puff/goldfish in her mouth.  She is proud of herself once she realizes what she's done, but she does not know how to do it on her own.  We've been working on this skill for months.

It is exhausting trying to feed her.  It usually takes around 30 minutes.  While I am thankful she can eat by mouth (many of the children we know with diagnoses like Grace's are tube fed), it is still very exhausting.  There are times that I cry during meals.  There are times that I get angry.

I HATE the disabilities.  I HATE THEM.  It breaks my heart that my child struggles with things like these issues that come so naturally to other children.  EVERY milestone she meets is a pure STRUGGLE.  There are days when I am okay with all that we go through to teach Grace to do new skills, and there are days that I give up and grieve for the things Grace has to go through just to do things that other kids do without even thinking about them.

Some days I feel the (extreme) pressure to achieve "normal".  I want her to be able to do all the normal things other kids do.  Then I realize that maybe she will never be "normal".  This realization is both relieving and utterly heartbreaking...relieving because it takes the pressure off to achieve "normal," and heartbreaking because I know in my heart she will never be normal.

I feel like I'm rambling.  I hope something here makes sense to some mom who has been there and can encourage me with positive thoughts and/or advice.  Thank you for listening!


  1. I've not had to walk in your shoes, but think you do have a huge blessing/burden to deal with every day. I've read about Grace from the time you first shared with us and am just astounded at the glory that belongs to God through her. Right now I'm listening to "Don't Stop Believing"! How appropriate.

    Would there be some one in your church that could come over and do a meal with Grace now and then? If I lived nearby, that would be a blessing for me to do that for your family. We can pray that someone nearby would have a heart for this mission. Please let us know what we can pray for that could help you. Hugs for you and your family.♥♫

  2. I came across your blog and began praying for you and your family while you were waiting on the arrival of Baby Grace. It is been such a joy over the past year and a half to see how God has worked in your lives, and the miracle He performed. While I can certainly appreciate the challenges you face each day, I want you to know how blessed your daughter is to have such a loving mother who always has her daughter's best interests at heart. God knows what he is doing when he places these special needs children into such caring and capable hands. I know she is a blessing to you every day, but you are a blessing to her as well. You are an inspiration for all of us mothers out here trying each day to do our best. Thank you!

  3. I agree with everything the other ladies said!
    Your feeding issues while not exactly like mine were, are close. My oldest child was/is gifted. He started talking at 3 months. Walking at 6 months. His eating however, was difficult. He gaged on everything solid. Took a bottle until he was around 3. Bottle feedings sometimes took an hour. To this day he gags on things he does not like. He will sit at the table up to an hour after we all finish. Did I mention that he is 20?! I worked and worked with him. I know my story is way diffrent than yours. BUT, hang in there.You are an amazeing mother.With God all things are possible. I live outside of Memphis and would love to help you with feedings if you ever want help. I am a foster mom too. Email is if you want to get in touch. I pray Gods grace for you and your family.

  4. Oh, feeding. It is the single most frustrating thing we have dealt with since day 1. 99% of the time, I am SO grateful for the feeding tube, because it really does take the minute to minute stress off. But I still stress a ton about the future- will he EVER eat anything by mouth? Hang in there- you are definitely NOT alone!

  5. Oh Karen - thank you for your heartfelt honesty!!! Although we can never really walk in another's shoes, I can definitely relate so much to your journey with the unbelievable ups and downs. The celebrations of milestones and good times are so wonderful and amazing but the reality of having a child with a disability is incredibly heartwrenching too. SO TRUE that it can make you feel at once proud to see your little one achieve something, but at the same time so frustrating that the achievements are typically things that are taken for granted. I think a lot about the story you posted about how having a child with challenges is like going to Holland when you thought you were going to Italy. I think we're always going to have those moments and days of grief where we still long for "Italy" and wishing and praying so hard that our children could just experience "normal". Everything you said makes sense Karen. I hope that in some small way I can encourage you even if it's just by saying " I can relate!!!!!" May God continue to hold you and Chad and Grace in His palm. You and your family are loved and admired. Stay strong girlfriend!!!!

  6. Don't stop believing, Karen! I can't believe how much Grace has grown. What a blessing.

  7. Karen - my worries about "normal" are like yours, except that Wiley's "new normal" came after 15 years of "normal". Most days we are able to put it to the back of our minds, but our whole family still grieves the loss of the old Wiley but are so very thankful that we have the new Wiley with us. Reading about Grace reminds me every time that God still performs miracle and I am thankful to know that someday Wiley will be "normal" for eternity.