I was just indulging in my favorite time of the day, rocking my wee little man and smelling his yumminess....and thinking about the past year of his life.
He is now 12 1/2 months old. One year ago "today", we'd been home from the NICU for about a week. We were doing irrigations every 6 hours and just holding our breath until his surgery at about 7 weeks old when he'd be "healed".
Fast forward to his first birthday, we've had a NICU stay, a disease diagnosis, a new vocabulary, a new skill-set, a new how-our-family-functions, a major sugery, more close calls with infection than I can count, many more months of irrigations and Dr. visits and wondering and watching and learning and stress, enterocolitus and another hospital stay, HOME from the hospital 2 days before his birthday, and now we are back to irrigations two times a day from now until who-knows-when.
Whew.
If I could go back to a year ago today what would I tell myself?
NOTHING!!
There is a reason God only gives us one day a time. I ABSOLUTELY would have had a mental breakdown if I had "known" what the first year of Titus' life would look like and what it would mean for me as a mother and for our other childrens' lives and our time as a couple.
For that matter, there's a reason God only gives us one second at a time!!
I could NOT have absorbed it.
I could not have understood any of it.
When we were in the Dr. office in Milwaukee as Titus was about to be admitted a few weeks ago with enterocolitus I was talking to the nurse and just trying to make sense of what was going on. Hirschsprung's is so hard to put your finger on sometimes. I absolutely felt like an idiot. Just like the worst mother in the WORLD. How was it possible that, I, a mother of 4, had NO IDEA my baby was so sick?!? We had left home that morning thinking we were headed to Milwaukee for a routine follow-up appointment and 15 minutes into our appointment our little one is admitted with a roaring infection. Another two hours later and he is seriously, SERIOUSLY ill. What the???
Sometimes having other kids is a really, really good thing when you have a sick baby - it gives you confidence that you DO know what you are talking about. Dr.'s trust your gut more than maybe they would if you were a first time parent, I think. BUT....it also gives you a whole lot of experience with which to compare "symptoms" to - (I'm SO not explaining this at all....you're probably about ready to switch off this update and onto something entirely more entertaining!! Go ahead! I won't blame you! :)
What do I mean....well, HD issues, or enterocolitus symptoms in particular, are very "normal" in a lot of ways - vomiting, diarrhea, not wanting to eat, dehydration, fever, fussiness, crying, lethargy, distention, foul smelling stool, wicked diaper rash, etc.....OK, that list all together like that is a pretty good indicator that something is seriously wrong. AND IT IS!! But, in the midst of life, one of those things on their own in a "normal" child is no call for alarm. Several of those things in a "normal" child is a bugger, but no call for alarm. When you have other children, you see one or two of those things and you start to wonder - but, then don't want to overreact because you know "kids get sick". If I called the hospital and said, "my baby has a fever", or "my baby has diarrhea", or "my baby is quite fussy" - I'd be totally dismissed.
However, with HD it all snowballs SO FAST!!! At 7:00am the morning we left he was fine. Basically. For the past few days he'd been kind of "off". Just kind of clingy. Kind of fussy. Wanting to be carried around all the time. He was starting to get a little distended (but, that is a continual thing - more/less/more/less - it just ebbs and flows all the time). He was eating and drinking a little - less than he should - but, not flat out refusing...just not enough. He had woken up SCREAMING in the middle of the night with a big poopy diaper (which was very weird for him), and he had another huge, REALLY FOUL smelling diaper in the morning (which was very weird)....but, we knew we were headed to Milwaukee to see his Dr.'s, so we were a little concerned...but we had no idea.
By noon he was admitted.
By this point, he had a roaring fever, he had EXPLOSIVE stools, he was vomiting, he was dehydrated from refusing to drink or eat, he had a serious infection, he was HUGELY distended, he was completely lethargic, he was screaming and crying. Ugh. And all of us were with so while dealing with all of this and the fear and worry and guilt and anxiety and "logistics" of being 3 hours away from home - we were entertaining and trying to have "happy faces" for the other three kids who were watching all of this and getting quite concerned.
"He'll never remember and You'll never forget". I don't know how many times I've heard those words from Dr.'s and nurses in the last year. I've said them to people myself! And, up until the past couple months I'd say they were true. Praise God he won't remember his time in the NICU, he won't remember his surgery at all, he won't remember so much of the pain of the beginning of his life.
It's not true anymore. He KNOWS now. He is terribly fearful of Dr.'s now. He starts crying as soon as we enter the exam room. He was terrified of the bed in the hospital because that was where the IV insertions happened and all of his irrigations. He is now furious and very sad almost everytime we need to irrigate him. As soon as I lay him on the table he starts to cry. It breaks my heart. He just looks at me and cries and shakes and tries to get away the whole time I'm irrigating him. I KNOW that I'm doing this because I love him and because it keeps him healthy and because it has to be done. I KNOW that I would jump in front of a bus for him. But, what does he think? When it's over and I can get us all cleaned up I just hold him and kiss him and tell him "it'll be all better...soon".
I feel mean. I have apologized to my other children more in the past year than I ever expected to in my life! Just last night, after another especially stressful irrigation I went upstairs and screamed and hollered at everyone for everything...and then sat down and cried. And apologized. I told them I'm so sorry for yelling and being so impatient and that nothing I'd been mad about was even wrong and I'm sorry I was so crabby. I explained that Titus has a disease called Hirschsprung's Disease (Isaac went completely white and FREAKED OUT! - we've never before called "it" anything) - I told them that this was why we had to help Titus with his poops and this was why he had had his surgery and his hospital stay and I reassured them that nothing had changed and nothing new had happened and nothing was wrong, but, that when Titus cries so much it is stressful for Mommy and it makes me sad and upset and I feel bad and that that is why sometimes I get so crabby afterwards and yell so much. And I'm sorry. And I love them and it isn't their fault and would they please forgive me. And Lydia patted my head and said, "You're OK Mommy. It's OK now.", and Isaac said "Of course I forgive you. I'm sorry we stressed you out. Can I read tonight?", and Susanna said, "I wuv you Mommy. Oh Ti-us! You so tute!"....And Titus had "forgiven" me by this point and was crawling around with his cutest-baby-in-THE-WORLD little red-headed self smiling and bringing joy to everyone.....and I was overwhelmed with how blessed I am! How have I been given this life and this much beauty and this much love and this much blessing!?! My cup runneth over.
I could not have understood all of this one year ago. I am so thankful to be here. "Here I raise my Ebenezer. Here I lay my burdens down." I have never been left alone....Praise Be To God!
