“Hush Little baby, don’t say a word…” this lullaby was my mother’s favorite, and she sung it to my brother and me a lot as small children, so naturally it comes to mind a lot as I now rock my little baby girl. Now granted I do not rock her a lot. She is an independent sort of little girl who is much better at putting herself to sleep than having Mommie rock her. Trust me, I have tried to rock her to sleep even as a newborn and then place her as gently as possible in her crib and she instantly wakes up. So our normal bedtime routine after bath and feeding is to read a story, say our prayers, and get kissed goodnight as Mommie tucks in the covers around the baby and before long, with the lullabies playing above her she drifts off to sleepy land like only babies can.
But then there’s the rare occasions, like tonight, where our near perfect bedtime routine does not go as smoothly. Abigail isn’t as sleepy as we think she is, or in tonight’s case, those teeth or something else is ailing her and she is, do I dare say, fussy. From the living room, above the noise of the music of her turning mobile I hear little whimpers and whines coming from my usually peaceful daughter. I cannot stand it for long, so I go in and lift her out and just hold her. I don’t talk, I don’t sing, I don’t even hum. I simply gaze into her big eyes and smile. It is all I can do. Of course she giggles and blows me one of her famous raspberries and I know she is okay. I guess she just needed some extra Mommie snuggles this night. I think of the ten other things I need to do like laundry, dishes, and grocery lists. My mind becomes a battlefield of things vying for my attention. But then I remember the lullaby, “Hush Little Baby.” The to-do list can wait. I have precious other things to do right now like love on my baby and comfort her before she drifts off. So I begin to sing. Rather badly but Abigail is mesmerized – those eyes looking right back to me. Oh, Precious Little One, there are so many things I wish I could tell you. But for now she just needs to know she is loved, she is beautiful, and I am so proud of her. I hold her and talk to her for awhile and I know she needs to go to sleep. So I kiss her goodnight again and tuck her in again. I take a long look at the face I see everyday, but this one is to say so much more than I could say with words, and I walk out. Soon Abigail is asleep and looking so peaceful as she dreams.
After a night like that I have so much on my mind. You see my sweet baby girl is turning one in a few weeks. We have had Abigail in our lives now for a year, and we have been planning for her long before that. What a special treasure she has been. Abigail is truly one of the happiest, most content babies you will ever meet. She rarely cries or whines. Her smiles and giggles just make the sun shine brighter even on a cloudy day. There is just something about her laugh that gets me every time – it is the most precious thing about her. Abigail is stubborn and independent, but she loves her family and is a joy to everyone she meets.
But while Abigail is turning one in May, she is not your normal one-year-old. My sweet little girl has special needs. It is hard for me to say that, not because I am embarrassed by the fact or because it makes me sad, but because that means the next thing people want is why is she special needs. What is wrong with her? As Abigail grows and does not meet her milestones people are going to notice that something is not quite right and these last few weeks I have been coming to terms with that. But I would propose that there is nothing wrong with Abigail. Abigail is exactly who God created her to be – a puzzling, perfect person.
No, Abigail cannot roll over, but she does have perfect head control. No, Abigail cannot sit up, but everyday I can feel her trying to use those core muscles more and more. No, Abigail cannot crawl yet, but she can grasp and hold objects for a long time now. No, Abigail cannot walk, but she can do tummy time like a champ. No, Abigail may not be eating table food yet, but she will take a couple bites sometimes and that’s a praise. No, Abigail is not saying any words yet, but she loves to blow raspberries. And yes, her focus may be a little off now and then, but she can track objects from left to right perfectly.
Abigail has not met any milestones really, but Jordan and I see progress everyday. It is Abigail’s progress and I cannot compare her to anyone else because she is on her own chart. She is growing perfectly, and is the healthiest little baby. I am thankful through this journey we have not had to undergo heart surgeries or other major health issues often related to babies with low muscle tone.
The question is still out there then of what can be the cause of all this? And all I know is that we simply do not know. That is the hardest part. I have come to terms slowly that my baby will progress in her own way, but not having any answers is tough. I do not know if my baby will ever walk. I do not know if my baby will ever be able to go to school like a ‘normal’ kindergartener. I do not know if my baby will ever be able to leave the house. I do not know what Abigail’s future holds, and as a planner that is hard. We have had many tests completed and seen many doctors, and we have a long road of tests and other doctors ahead of us. Since all the major (and normal) syndromes that Abigail could have have been ruled out this leads us on a road to find out what it is that Abigail does have. But when every doctor you go to tells you that your daughter is puzzling it is not encouraging that this slow process will get any faster.
This journey is a challenge. Having a special needs baby that seems normal on the outside is a challenge. Waiting for answers is a challenge. But loving this precious bundle God has blessed Jordan and I with to raise to love Jesus is not a challenge. I am so thankful God has entrusted us with Abigail. My trust and faith in God is being stretched daily. My prayer life is being renewed, and my love for a special little person is growing day by day. Most days I do not feel adequate to do this. I do not feel like a can handle the unknown, the never ending questions, or the uncertainty of tomorrow. But each day I am reminded of my calling to be Abigail’s mother, her role model, and Jordan’s helpmeet. I am reminded that God still loves me and He chose me to complete this road. Heaven knows I have shed many tears about this, but my God is still alive and He has a plan I will never understand.
I asked Jordan the other day if he ever prayed for Abigail’s healing and he said no. To be honest I don’t either. You may think we are awful parents. But oddly our prayers for Abigail do not include healing. They include her continuing development, her quality of life, and most of all, her salvation. Abigail is perfect the way she is, and her story is one that should be shared. She is an unique treasure in Christ, and while this journey is a hard one I am so thankful to walk through it with my family. God has great things in store for the Lidhs and I cannot wait to see what God has in store for all of us.