Reflecting

I think most mothers (and fathers, too) can relate to wanting their child to be perfect and healthy in every way. I don't think we would be normal if we didn't want that. I didn't get that with either of my boys. Kyler was born with pulmonary valve stenosis, a congenital heart defect (CHD) which was corrected at three months of age during a heart catheterization. In addition to that, he had a significant speech and language delay and gross motor delay. We are so blessed that his CHD was fixed so “easily” and he hasn't any further problems with it. And, with the help of speech therapy, music therapy and occupational therapy for 18 months, Kyler is now age-appropriate in the areas of his previous delays. Again, we are so blessed to have been able to provide Kyler with the necessary services to help him catch up where he was behind.

I remember when Greg and I were talking about having another baby. Before we even decided to try to get pregnant, I remember praying for a healthy baby. I felt we had struggled so much with Kyler and I didn't want to go through that again. As it turned out, we found out we were having a baby with significantly more severe problems than Kyler. Problems we were initally told would be fatal. Most of you have been following our story, so I won't go into major details here but will list the major problems he was born with (not what was actually seen in utero). Coarctation of the aorta (CHD), diaphragmatic eventration (a form of congenital diaphragmatic hernia-CDH), congenital scoliosis and several other more “minor” anamolies.

Of course we did receive a miracle and Caden is with us and alive. What an amazing thing! However, he has significant challenges he has to face in the months and probably years to come. I don't want to sound ungrateful for where we are at, because I definitely am not ungrateful. I am so happy to have my baby boy with us and doing as well as he is. But he will have ongoing respiratory issues and he faces HUGE gross motor delays. And, the fact that he still REFUSES to take any food by mouth is another huge stress. I realize in the big picture, these are relatively “small” things but they are stresses.

There are times when I grieve the loss of a “normal” child that I didn't get to have. I grieve not being able to simply enjoy the first days/months/years of their lives. Instead we are faced with constantly having to make medical decisions, not being able to attend certain events because of not wanting to expose your child to the germs. This feels selfish in so many ways, yet if I am honest, I feel that way a lot.

I have many friends who currently have “healthy” toddlers and babies, or are pregnant. I am so thrilled for them that they have normal, healthy babies and can expect to go through the normal adjustments of adding a new baby to the household. I wouldn't wish our situation on anyone! I wish everyone could have healthy children. But, it can be hard not to compare your children to those around you. I see babies the same age as Caden, or slightly younger, doing all the “right” things. They are rolling over, crawling, pulling up, crusing around furniture, etc. It's awfully hard to not look at Caden and wish for him to be able to do those same things. His therapists (physical therapist, feeding therapist, and developmental specialist) are constantly reminding me not to do that. I need to evaluate him on how far he has progressed from where he started to where he is now. And, when I do that, I can see significant improvement. I am not ignoring the strides he has made because he is definitely making progress. But I still grieve the “hoped-for” healthy, normal child.

In talking to another heart mom, I mused as to why we were faced with these challenges. Especially when you see some pregnant women smoking through their entire pregnancy and having a perfectly healthy baby. Or a teenage girl pregnant with an unwanted baby, give birth to a healthy child. Then there are those of us who do everything we can to stay healthy during our pregnancy and desire our babies with all our heart, only to discover that the child we are longing for and love so much, has problems, even life-threatening conditions. This heart mom said she thought it was because we were equipped to deal with them and give them the help that they needed. I think she is right. In many ways, the issues with Kyler prepared us for the situation with Caden. We already knew what resources were available and could more readily access them. So that is a blessing also!

Another thing that is hard is that we encounter a couple different kinds of people. There are those who thought that the minute Caden was discharged from the hospital, that everything was fine and there was nothing wrong with him anymore. And, there are those who seem to think that Caden is knocking at death's door every day. And, there are many people who fall somewhere in between. I suppose there is truth to both sides of these thoughts. On one hand, he wouldn't have been discharged from the hospital if he wasn't well enough to leave. And, on the other hand, he is still high risk for getting sick which could potentially be fatal depending on how severe it is. That being said, I feel like I am often trying to convince people one way or the other. It's tiring.

For some people I feel I am trying to convince them that Caden still has many challenges and health concerns and that he's not out of the woods yet. And for other people, I feel like I'm trying to tell them how healthy Caden is and how well he is doing; that he's not going to drop dead at any moment. It's a strange place to be and a weird feeling to have. I know that people probably just don't have enough information to really know how Caden is doing. So, what I am saying right now is that he is doing amazingly well considering where we started. He surprises all the doctors in regards to how well he is doing. But he still faces many challenges and will remain a high-risk child for many years. I mourn not having a typical, average baby where I don't have to constantly explain things to people.

I know this post sounds like I am feeling sorry for myself. I admit I do feel that way some of the time. But most of the time, I don't have the time for that. I have to be focused in order to get everything done I need to which includes many doctor and therapy appointments each week. Let me say that I am blessed and I know it. I have a wonderful husband who recognizes I can't do this alone and is there for me and our boys. I also have two amazing sons. Kyler is a live-wire! He has enough energy for the whole household, if only he could share it. :) Even though I have a hard time keeping up with him most of the time, he brings so much joy to my life with the things he says and does. Of course, he is three and a half years old so he also knows how to push my buttons and add as much stress to my life as possible. Then there is Caden... What can I say? He is the most amazing baby in so many ways. In contrast to Kyler's intense personality, he is mellow, laid back and just plain sweet. He has such a sweet temperament and every day he gets more interactive with us. I love the quote that says, “having children is like seeing your heart walk around outside your body.” It is so true. Both my children have huge pieces of my heart and I don't know what I would do without them. As much stress as I have, I love my chilren more than I thought was humanly possible. I am truly and wonderfully blessed!