There really is no way to say this without sounding like a terrible mom...but I'll just say it anyway. The past few weeks I've felt tired of all of the therapies and work that we have to put in on a daily basis. Today I wished that I could just fill up a sippy cup for Sweet B and plop some finger foods on her high chair tray, and she would just feed herself. She's nineteen months. This is what nineteen month-olds do. But as we all know, Miss Sweet B doesn't want to do this (and for good reason) and I don't know when she will do this. The fact is that she will do it when she wants to do it. This is how this little bundle of pure sweetness/stubbornness operates. We've known this since the day she was born.
Yesterday I was supposed to do my homework for physical therapy and have her practice standing up and bending over to retrieve a toy out of a box. I didn't do it until tonight, and I only had her do it a few times before I became tired and gave up.
My husband has been doing the oral feeds for the last two days while I do the tubing, because I just don't have the stamina to do it.
I'm so thankful that this doesn't happen to me often and when it does, it usually does not last long. Usually I am driven to do every single thing that I can to help Sweet B reach her highest potential. But right now...I'd rather just lay with her on the couch and watch TV.
I'm thinking/hoping that this is normal for all moms, and it's magnified in my case because I do have the added pressure and responsibility to do physical and occupational therapies with her, as well as tube-feeding.
I LOVE her therapists and look forward to seeing them every week, but man, I would kill for a week where I didn't feel the self-imposed guilt of not doing enough physical therapy homework. I would kill for a day where I simply just tube fed her and didn't try oral feeds. But I think that's just part of my personality and the position that I am in. I know that Sweet B needs to do her homework and be given the opportunity to eat orally three times a day, because that is what is best for her. I think the trick of it is finding a good balance for all of us...Where I'm not burned out, yet she is getting everything that she needs.
So I guess you could say that I'm having a pity-party today. Wanna come to my party?!
Tonight I found myself on my computer, reading a post from a woman who was afraid because her baby was just diagnosed with placental insufficiency, before 20 weeks. She asked for a word of hope, and did not get many replies at first. When she finally did, it was apparent that people had not replied because there was not much hope to give.
I read story after story about babies who had IUGR (intra-uterine growth restriction- which is what Sweet B had). Their stories were not nearly as bad as Sweet B's. But these babies had died in the womb. Many of these babies were measuring two or three weeks behind and still passed. Sweet B was measuring 8 weeks behind when she was born. That is amazing. In all of the research I have done, I have only found one other baby measuring as behind as her who lived. Many of these babies were not taken out at the perfect time, like Sweet B was. B was allowed to stay in the womb in order to mature her lungs as much as possible, but taken out as soon as her placental diastolic flow reversed, which is deadly.
Sweet B also had symmetrical IUGR which is the bad kind. In asymmetrical IUGR, the head and the chest stay relatively normal sized as all of the nutrients are directed there. For Sweet B, her entire body was tiny. I remember being told this time and time again and feeling like I wanted to crawl under a rock.
On the other hand, there were women who replied saying that their babies had severe IUGR, and were delivered at 37 weeks and 4.5 pounds. They had been terrified of the 2 day NICU stay (and there is nothing wrong with this. It is scary even if it was only 2 days). But the point is that their growth was restricted and severely so, but it was nothing as dramatic as Sweet B, and this gives me yet another reason to be in awe of the miracle that happened.
I don't often think about the miracle because it scares me to think how close she came to dying. But I need to think about it from time to time, in order to give me the fuel to keep on keeping on.
So here's to hoping that I will get my second wind soon. Come on Sweet B, give this mama a break!
And maybe this will happen...
Obviously I was one of the not so lucky ones. But I don't begrudge you the pity party. It is hard being a parent even of kids without special needs. Have your pity party, then rejoice in your miracle!
ReplyDeleteThat is all so much work. Keep it up and don't feel guilty for hating it sometimes. You are a great mom and B will one day be eating french fries with the other kids!
ReplyDeleteI used to wonder sometimes if my daughter felt the same way, like it was too much. She sure acted like it was too much some days, and those days seemed like a waste of all that went into getting to that appointment. I went to see a child at school this past week, and I always said we would always homeschool, just as all our other children are homeschooled. But I saw this classroom, and I got it. What a blessing to have a (nice, it was really NICE) place where therapy is brought to your child and only done ... with no guilt or apologies ... on days and times when your child is up to it. I know at this age, B's therapies are probably all brought to her, too, (at home), but I know that even that is exhausting some of the time. I saw where someone made a conscious choice to have therapies once (or twice?) a month for her daughter, and to do all the assignments throughout the days in between - and her therapist(s) also come to the home. I wished I had thought of that. The guilt/worry I always had over trying to never to miss an appointment was a huge load.
ReplyDeleteWow, it took awhile, but i found the place where I had read about doing less than weekly therapies:
ReplyDeletehttp://theblessingofverity.com/2011/06/q-a-one-year-old/
Question: How much therapy does Verity get?
Answer: Miss Marcia, her occupational therapist, comes every other Wednesday for one hour. Miss Karen, her physical therapist, comes every other Thursday for one hour. We have them both come the same week so that we can have “therapy week,” and “no therapy week.”
How does such a small amount of therapy help her?
Well, we think of therapy in the same way we think of piano lessons. We have always scheduled piano lessons every other week rather than every week. The teacher runs the student through his paces, observes, corrects, instructs, demonstrates, and gives assignments for the next two weeks.
If a child receives lessons, but doesn’t practice correctly between those lessons, they will not be of much benefit.
So it’s our responsibility to remember our instructor’s teaching and assignments and fit the practicing into our everyday life. Which we are greatly motivated to do when we see how much she is learning!