Just last night I was singing this old song to Eliana as she was splashing in her bath. As I sang the first line, she broke into a her endearing grin. It was as though she understood the words and her joy just spilled forth from her bright eyes to her toothless smile. It was a precious moment.
It gave me time to reflect on some of what has happened in the last couple of days as I pondered the fact that "Jesus loves the little children, ALL the children of the world." ALL the children. Something the world hasn't quite learned yet - though something I see played out in my life everyday. From friends that are parenting children with special needs to others that are adopting to others loving children daily in spite of their actions. It's these sweet moments that I need to remember as they are ones that give me a glimpse of God.
This song and others are ones many of us learned as children. Jesus loves me is another one of my favorites. One of my friends commented on this verse in a slightly different way, yet one that also makes a powerful statement.
Jesus knows me, this I love.
Yes, He knows me - you - all of us. And in spite of our mistakes and flaws loves us deeply. I often tell Eliana that - Jesus loves you - even though at the moment she may not understand how much Jesus loves her! The last couple of days have given me times to ponder this thought, especially when it is confronted with the fact that the world often does not love "all the little children".
We visited the Down syndrome clinic on Thursday. I was asked many, many questions about our family history. I know that they are trying to understand, but honestly can any of us really know why God creates some chlldren differently? Other than it being one more opportunity to give Him glory. I know that some of what happens in this world is just a result of living in a fallen and broken world. It is this backdrop of pain and suffering that really shows the love, compassion and grace of our Father.
I talked with a developmental pediatrician who was very nice. She explained some of what they do at the clinic. Our visit was short as we are already connected to many of the services that they provide from eye, ear, cardiology, physical therapy and occupational therapy. The doctor told me we were doing a great job in getting Eliana the things that she needed. It's always nice to be encouraged by a professional even though it isn't the approval that I need to seek.
She also talked with me about the blood test. They will be testing her thyroid function. It's been normal thus far, but can change and is often a problem in people with DS. They will also be checking for leukemia. Oh, just the mention of this caused tears to well up in my eyes - as even now they are there at the thought of it. Seeing the hurt in my eyes, the dr commented that this was very treatable in children with DS. It isn't a road that I want to walk - though it also isn't my choice either.
When we arrived at the clinic and I talked with a nurse, I told her I wanted to put emla cream on Eliana's arm to numb it in preparation for her blood draw. She told me that wasn't a good idea as it constricted the blood vessels and made it harder to get a good stick. She seemed so sure and yet, I do trust my ped who prescribed the cream. I also know what it has been like in the past. Painful. Difficult. Sometimes unsuccessful. I wasn't insistent, yet sensing my concern she agreed to put it on her "best" arm. She told me that she would do this since the vein looked good, but that the other arm would be a back-up if needed.
When she went to have her blood drawn, the tech was able to get a good stick the first time. The cream was working too as Eliana did not cry. As we waited for the vial to fill, it was then I became thankful for the cream. We waited and waited and the tech commented on how sloooowly her blood was coming. I secretly prayed that she would not have to do a poke in another place. We waited for a long time - maybe 5 minutes? She did get it all. Through the whole thing, not a peep from Eliana. She did try to grab the tubing though. That's my girl - great at pulling tubes. LOL So we had a successful blood draw with no pain for Eliana. Thank you God for this answer to prayer!
We should hear the results from the bloodwork in a week or so. This gives me yet another opportunity to just hand it over to God. It isn't any use worrying about it as it won't change a thing. If something is wrong, then we will deal with it when we need to. I'm going to try not to borrow trouble as each day has enough of its own. ;-) So many lessons for me. I wonder at times if I'm just not getting it and that's why I keep getting new opportunities. I can be stubborn. Either way, I hope and pray that through it all I will learn and God will get the glory.
Since we arrived at the clinic as the first patient, we weren't in the waiting room much and didn't have much opportunity to see others. I had wondered if I might have a chance to talk with another Mom or meet another child with Down syndrome. This wasn't the case though. I did see children in wheelchairs and with a variety of other special needs and it hurts my heart. It hurts for the pain these children experience as well as that of their parents.
A Mom on my homeschool board shared that she needed prayers for her hurting heart. Her special needs daughter was being excluded and it was hard to keep her heart from becoming hard. Other Moms of special needs children understood this pain. The pain of having siblings invited to a party while one is excluded. The pain of comments from others. The pain of distance or even just the look from people who don't understand - and don't really want to either. I haven't had much experience with that yet.
For now, most people think Eliana is cute. I love hearing those comments. I think she is so beautiful, though at first it was hard to see past her differences. I'm sure that will be true of others as well. Another mom of a baby with DS shared with me recently that she thought it was easier in some ways now - with a baby that is cute. What is it like though when they are children and even more so into adulthood. Those are things I don't need to worry about now, though I'd be lying if I told you that the thoughts never entered my mind. It's often when I hear from other Moms who are hurting or when we do get an odd look.
It's then that I try to focus on the truth that Jesus loves me. Jesus loves Eliana. He loves all of us - just as we are. I wonder sometimes if my vision will change. Will I be able to love more fully now? Will I have more compassion? Will I have a greater understanding of how much I am loved? Will I have a greater knowledge of how much I need a Saviour? I think so.
I love you, O Lord, my strength. - Psalm 18:1
Let all that you do, be done in love. - 1 Cor. 16:14
With love to all of you,