I feel like it is important for me to paint an accurate picture of our lives and of who I am, where I am and what I’m feeling. While we are richly blessed and I am deeply thankful for all the wonderful memories, special quality time together as a family, and the day-to-day with this precious baby that I typically post about, that is not the full picture.
The past month or so I’ve been in quite a funk. I thought perhaps it was the changing weather and a string of rainy days. Then I said that maybe it was our “house arrest” as we protect Clara from the germs of cold and flu season. Then I thought it was accumulated tired from a year and half of not sleeping. But the weather is lovely, we’ve been to GA and back for Thanksgiving, and Clara is sleeping through the night. So, those excuses don’t seem to be it. I’m discouraged and I’m overwhelmed. I remember when I was teaching we would get a few weeks away from a break or summer and just feel desperate for the end. We would feel so burnt out and restless and know that both the kids and the teachers just needed some time away to renew and rest before plunging back in again. That’s kind of how I feel right now, but there is no break. Clara has to eat six times a day and I do five of those feedings. There is no long weekend from this job. And the pressure and responsibility is so much heavier than any I’ve felt before.
Clara’s eating is still a daily struggle. There are days (like this morning) when I spend 45 minutes trying to get her to eat and she only takes three ounces. We fall short of the daily need of milk, just in terms of fluid for hydration purposes, often. She is a very long way from figuring out how to spoon feed. Eating is something that comes so easily and so naturally to most of us. I’ve never appreciated the ability to eat. But for Clara, it’s very difficult. And it’s absolutely critical. The tedium of trying to get those ounces in her six times a day is wearing.
My feelings of being overwhelmed and discouraged are magnified by how isolated I feel. I am so very tired of people telling me that Clara is the picture of health. I’m frustrated with people telling me that I shouldn’t worry, or that she’ll get it when she’s ready, or that “this is being a parent”, or that “babies just spit up”, or that they understand.* I should worry. She really might not get it (enter: g-tube). Parenting a child with health concerns is different. When she throws up we’re losing precious calories and ounces of fluid that were incredibly difficult for me to get in her in the first place. And most people simply don’t understand. I’m tired of asking doctors and therapists questions and them not having any answers. I’m tired of washing bottles. I’m tired of pumping. I’m tired of wiping down every surface with Clorox wipes and worrying about every exposure to germs that Clara has. I’m tired of not being able to be normal.
Today we had an evaluation with a speech therapist for feeding therapy. Like so many appointments before, I had great hope that we might get answers and strategies and solutions. Instead, I left feeling like I had gained nothing (Speaking of gaining, Clara has only gained an ounce and half in the last three weeks. It’s not enough.) And as I drove home, I just cried. Here I am finally living the dream that I’ve had my whole life of being a mother, and I love every single minute of the ordinary, but I’m just so frustrated with the challenges that come with this particular child. I know that every child has their struggles and challenges and that motherhood is not a picnic for anyone. I don’t have unrealistic expectations. I’m just saying that this gig I’ve got going on right now is extremely difficult. I usually love challenges. But right now I’m feeling a little worn down and there’s not yet a light at the end of the tunnel.
I don’t write all of this to garner sympathy from you, my faithful readers, or to ask for advice or solutions. I just wanted you to know that it’s not all pumpkin patches and apple orchards. Clara is a beautiful miracle and I am thankful for her life every minute of every day. But this life is hard. It’s hard for her and it’s hard for me. And the truth of the matter is, I am still struggling with this.
So, I’m praying that the burden will get lighter. I’m praying that she will have more and more good days where she eats enough and it doesn’t involve an epic battle and she doesn’t throw it up. I’m praying that she learns how to spoon feed and drink from a cup because in four months that bottle needs to go. I’m praying that she might decide that she can eat while she’s awake instead of me having to sneak in all her feedings while she’s sleeping. I’m praying that she might start gaining weight again a little faster. I’m praying that she stays healthy this winter because I cannot bear the thought of her facing respiratory illness. I’m praying for grace for me and for Clara. I’m praying that I will have a sense of calm and patience when it comes to feeding her instead of the far-too-frequent meltdowns and tantrums I’ve been having lately. I’m thanking God for her strong will, even when it’s causing her to fight me, because I know that same strong will is why she is even alive today. I’m thanking God for all the support I have and the resources that are at our disposal. I’m thanking God for this opportunity to be a parent because it has always been the desire of my heart. I’m thanking God for His infinite wisdom in giving me the child that is just right for me and giving Clara the mother that is just right for her. I’m thanking God for the mothers of other CDH children He has put in my life because they do understand. I’m thanking God for giving me the most patient and loving husband who puts up with my mood swings so graciously. I’m thanking God for the promise of tomorrow, a fresh new start, and another day to work on serving Him, and meeting Clara’s needs. Join me in prayer?
* If you are one of the many, many people who has said any of these things, or similar things, to me - please know that I am not angry at you. I recognize that it is your way of saying that you care and that you do not intend them to be hurtful. I don’t want for you to think you’ve offended or hurt me or feel like I have just singled any one of you out. I hear these things from everyone, including my family. I do appreciate everyone’s desire to problem solve and offer feedback and solutions…. I learned many months ago that people often say the wrong things and that it’s best to try to hear their intention instead of the words that may be hurtful. I’m still working on that….
Loving and Praying for ALL of you!ReplyDelete
As someone who survived a special needs childhood and cares for families and special needs children for living. It will get better. There are days where things seem impossible and its ok to feel that way. Clara has already proved to us she is beautiful, resilient, resourceful soul. I have no doubt that you guys and God will get through the no-germ, eating struggles season. Love and prayers.ReplyDelete
Sending a big ol' virtual hug your way...and many prayers.ReplyDelete
Chrissy, I pray that another CDH mommy will be of help to you since the speech therapist was not. I know of a great adult speech therapist who has helped throat cancer survivors to eat again, I may contact her to see if she can point to a more positive direction.ReplyDelete
You and Clara will push through this hurdle! I am sorry you are discouraged right now, but this phase will not last forever. Will pray for Clara's eating to go forward.
Chrissy feeding issues for a CDH child are almost as challenging as survival at the beginning of life! I wish there was a quick answer someone could give you, but there is not. Prayer, persistence, more prayer, and confidence that you are doing the very best ANY one could do for Clara, will get you through. My grandson was right sided CDH. After 101 days in the NICU he went home. My precious daughter-in-law worked for months, singing and playing games during feeding time while trying to accomplish what for most babies is so instinctive, getting her child to eat. She and my son WORKED to get this amazing little boy to keep down the formula he was fed. But so often the reflux monster would cause him to lose those precious calories. Solids were an even greater challenge. I know many prayers and tears that were a part of feeding times for quite a few months. But her mothering instinct kept her going and now they have a little boy who loves to eat and is not picky like many other 3 year olds. So keep trying, feeding after feeding, day after day and know God is there with you and Clara. I applaud you for sharing the fact that you are struggling. Now we all know what to pray for with confidence that God will answer.ReplyDelete
Thank you for writing this. I DO understand. I share your sense of overwhelm and that some days are just hard. These aren't regular challenges - these are our children. The stakes are high and every ounce of our heart is invested in doing the right thing by these amazing little people. That sense of struggle doesn't diminish our love and gratitude for our little CDH miracles.
I'm so glad that you were honest about where you are at. It makes me feel a little less lonely about my own tearful car-ride home from our appointments today. Sending big hugs your way.
mama to Samuel, lcdh, Feb1/11
I have been following you ever since your sweet girl was born. I have to tell you that I understand everything that you are righting. I really want you to come to my blog and read the post that I did about our feeding saga.ReplyDelete
B was a micro-preemie born at 1 pound 11 ounces, so they did not have the same diagnosis. But, the eating issues-yes. Please let me know if you would like to talk or if you need someone to bounce ideas off of. You can leave a comment in my blog and I won't publish it if you'd like me not to.
I went through very hard times with the feeding issues. I am still in it, but I am not where I was, and for that I am grateful.
You will make it through this.
I meant "writing" and not "righting." I'm embarrassed!ReplyDelete
I can't say that I can understand completely because each one of our miracles is different, but my Dakota was very similar in her eating struggles to Clara and I remember the bone weary tiredness I felt and the actual feeling of dread I would get before each feeding. I also pumped. Dakota never breast fed. I also exclusively fed her in her sleep for a good three to four months months. I worked full time and went back to work 2 weeks after I came home from the hospital (didn't want to, hated it, but had to) so that came with its own challenges and despair but also came with a break in the day. So like I said, I don't understand completely, but I understand a lot of it. There is a light at the end of the tunnel. For us, solids is what got us over the hump. It didn't happen the first few feedings. But the first thing she started to eat was smushed banana. Then my dad taught her how to eat rice cereal by putting her fingers in her mouth to help her swallow. The first time she actually opened her mouth for food I cried. I think she was more than 7 months old before she actually wanted to eat anything. For some reason eating solids made her start to like her bottle more. She still never took a lot, but she didn't turn her head away and cry when I offered it anymore. She was negative on the growth curve until her 2nd birthday and we went months with her only gaining half a pound, but we muddled through. She is now 4% on the growth curve and I still get a little anxiety when she doesn't eat a good meal, however, then I look at her energy and spirit and overall health and I try not to worry about it. I will be thinking of you as you go through these tough days.ReplyDelete
Mom to Dakota 12-25-2008
I get it. I so totally get. Even at 2.5 we fight the daily struggle for RUby to eat.
Remember that she's the picture of health because all of you have worked so hard. I bring that up every time someone who doesn't get says that. I usually say "we've all worked very hard to keep her healthy."
The winter is the hardest. I felt so isolated. I couldn't even go walk around Target for fear of Ruby getting sick. It's hard but I would try to get out as much as I could in the evenings. We found a retired NICU nurse to babysit (Ruby was still on an NG tube at 10 months).
Feel free to email me (firstname.lastname@example.org) or call.
You're doing an awesome job.
Mom to Ruby 4/10/09
oh Chrissy, I am praying for you!! ...Clara isn't the only one that amazes us with her strength! Strength doesn't mean that you never feel down, or tired, or frustrated. Strength means that you overcome! I hate that things are so hard right now! I want you to be able to just enjoy your sweet sweet baby. Nobody wants to fight all day every day! Even soldiers get breaks!!! grr!ReplyDelete
ok and heres my anoying advice:) lol If at all possible get your heart rate up! Moderate aerobic exercise for as little as 20 min (you can even split it into two bouts of 10 min) has been shown to improve cognitive function and emotional well-being! If 20 min is too much now...do anything you can! Walking faster than your normal gait counts!!! Walking up and down your stairs counts!! pretty much anything that makes you breath heavier counts! :)
I offer a prayer for YOU .... that GOD will give you the extra strength needed to get Clara through this critical growth spurt and then bless you with many easy days of parenthood. It won't all be easy but He will guide you through. The sun is shining on you this morning and for that we are all thankful. You CAN and WILL endure!ReplyDelete
I have been following your blog from PA for many months. I am here to tell you...I get it. Truly. My children both have different medical issues (they are now 6 and 8). Feeding issues drove me over the edge, I wanted to run away from the house screaming...anywhere but here. In it went, out it came. We had it to a science changing out of puked clothes from the highchair...to the bath and laundry. Vomit in the hair, all over the child, all over and over and over. I cried, he cried. We danced around the tube feeds for what seemed an eternity. We danced at the doctor's when he gained. Now at 6, he's still only 32 pounds. A squirt, a chicken...but healthy, loving, and wise beyond his years. He plays ice hockey and I'm thinking 'oh the calorie consumption!'. We did feeding therapy, OT, behavior therapy. I'm not here to tell you it's easy, it sucks, it's a roller coaster you can't get off of! But KNOW you CAN do this, you WILL do this!ReplyDelete
I have been following your blog since the beginning of Clara's journey - and this post really hit home for me. I felt (and still feel much of the time) many of the exact same feelings. My son Andrew is now 2-1/2 and a CDH/ECMO survivor with many of the same comlications that Clara had during his NICU stay. You are not alone in this, so many of us can relate to everything you wrote! I too felt very isolated and I just couldn't believe how many people said so many things that they thought were helping, but just weren't. Even people in my own family! Bottom line is that they just don't understand the worries we are facing. Yes, all babies spit up, sneeze, catch colds etc. but this just isn't the same thing for our kids. They look and act so "normal" (because we have done such a great job taking care of them)that people all think they are fine. It is really frusturating and difficult sometimes. Hang in there, it really helps me to get out, take a break, even just to get my hair cut or go for a quick walk. Taking some time to take care of yourself will help. I used to work outside the home, and since Andrew was born, I have decided to stay home and that has been a really difficult transition for me by itself, let alone taking care of a child with some challenges. Hang in there, you, Clara and your husband are an inspiration to so many!ReplyDelete
Mom to Andrew
CDH/ECMO Survivior - 6/15/09