I used to pray that I would hurry up and get over it, that I would accept the situation and that I would love Juliana just as I loved Calvin. When the days were long and difficult, when she was vomiting everywhere, when she still wasn’t smiling at us or even looking at us, I kept on keeping on by telling myself that someday the situation might be different. Even in a depressive state, I didn’t want to have regrets of how I spent the first few months of her life.
I hope that that in sharing our journey over the past eighteen months I have not inadvertently blamed the stress, the sadness, the PPD on Kabuki syndrome. I wasn’t depressed because Juliana had concerning health issues: I was depressed because she would not eat. The emotional toll that this takes is absolutely incredible. I sincerely hope that I have never portrayed Juliana as a burden. She is not. She is most certainly a blessing.
We most certainly got off on the wrong foot, with health issues and a feeding/GI nightmare. Add in the fact that she was in the NICU from the time that she was a few minutes old until she was 4 weeks old. Very unexpectedly, I had a hard time bonding to her initially. There simply was no opportunity to do so. It gave me a lot of grief as I strongly believed that things would become immeasurably easier once I had a strong bond to her.
Things are very much easier now. To be clear, life may never again be as ‘easy’ as it once was. I look around at others and sometimes I can’t help but to think about how my challenges are greater than theirs (quite possibly I’m wrong - comparisons like this are admittedly completely unfair to all parties). I used to find myself dwelling on this but as time goes on these thoughts are extremely fleeting. These days I chastise myself for thinking that easier somehow equates to better or more fulfilling. It doesn’t.
I recently read Angel Unaware, the story of Roy and Dale Evan Rogers’ daughter who had Down syndrome. (Hopefully my younger readers know who Roy Rogers is.... David didn't!!) It was a very quick read and honestly I found it hard to relate to the 50s era outlook portrayed in the story. While the Rogers loved their daughter very much and they outright rejected the idea of sending her away, they also gave up much of her care to a live-in nanny and for the most part they continued to maintain their busy schedules. It’s particularly saddening to me since their daughter died after her second birthday. All that aside, the Rogers had a wonderful outlook on life and I particularly enjoyed an account that Dale recalls:
One day Father Smith, whom I had not met, called on the telephone and said to me, simply, “I want you to understand that I know all about your child. You have done the right thing in bringing her home with you to cherish her and love her. You and your husband will soon begin to receive what our Lord wants you to learn from this child. In my opinion these little children are allowed to come into this world to bless lives. Their presence teaches patience and understanding that makes those around them more godly. Mrs. Rogers, you are truly blessed by the Lord, and you may be sure that your sweet Robin will one day be rewarded handsomely in the hereafter.From the outside looking in, this may simply sound like a platitude. It’s not. We humans may be masters of self-deception but with this type of experience platitudes don’t go too far. Juliana has brought with her a lot of change to our lives and all of it has been good. All of it has made us better. We’ve experienced a roller coaster of emotions, from depression to worry to happiness and pride. I am immensely proud of her. This is really the first time I’ve experienced this type of pride as a parent. Don’t get me wrong - we think that Calvin is one of the most amazing human beings to have ever been born. But it’s undeniable that everything comes easily and naturally for him, so this type of pride is quite different. It is far more intense. Juliana amazes us on a regular basis.
Not that long ago I wrote that I would take away Kabuki syndrome in a heartbeat if possible. I didn’t yet understand the (wiser) parents who said that they wouldn’t change anything about their child. But as I have healed from the immense stress of our first year I have slowly come to a much greater appreciation of this acceptance. Personally I’ve come to the conclusion that diagnosis is irrelevant. When I look at Juliana I don’t see Kabuki syndrome. I see her for who she really is and her personality far outshines other issues.
I’ve been very honest in my accounts over the past year as I don’t think there is any point in sugarcoating or anything less than genuine. I hope that my posts demonstrate a progression from feeling sorry for myself to empowerment, peace, love, happiness and all that jazz. I hate to think that I’ve painted a negative picture of parenting a child with different needs, but at the same time I have to be honest about the difficulties. The lows are very low. But I want you to know that the highs are higher than you would ever believe.