Down Syndrome: Year One – Choosing Joy
Baby girl is getting ready to turn one…
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First birthdays have always been emotional for me, but this one is different.
With my first two babies, each milestone was exciting…but brought a little bit of grief because this mama has a hard time letting go and moving on to new things – the lowering of the crib, the first tooth, the first steps, all of those things hurt just a smidge because they were reminders that my baby boys were growing up…and growing up fast.
This time is different. This time, we pray for the milestones…we look forward to the milestones…we celebrate the milestones…and this time, when we cry at the milestones, it’s with tears of joy….never sadness. At each new milestone, we celebrate with chocolate chip cookies from Chick-fil-a, which is a whole thing that started back in January and there’s no sign of it stopping! 😉
If you’ve been following along for the past several months, then you know that when our daughter was 4.5 months old, we received confirmation that she has Down Syndrome. As we near her first birthday, I can not let the opportunity pass without thanking you for the way you responded to our news this past winter. Our January was difficult, and you commented with encouragement…you sent e-mails filled with support…you mailed us beautiful packages…you shared powerful Scriptures…you prayed for us. Your response was incredible and impacted us in ways you may never know. You are part of our story – Thank you.
Maybe you’re new to this space…maybe this is your first time here…maybe you are the parent of a child with special needs…maybe you are a mother or father who has just found out your child has Down Syndrome…
I am by no means an expert in this area. I am new to this journey myself. Our family is only months into walking an uncertain road, but my prayer is that as I share on the topic from time to time that you will feel encouraged and inspired and deeply loved by our good, good Father.
The day we found out our news, we made two very deliberate decisions:
#1 We determined that we would not live as victims. Our daughter is not a victim. We are not victims. We are children of the Heavenly Father – sons and daughters of the King who holds all things in the palm of His hand. Our God makes no mistakes, and we would not move forward in any way that communicated that He had. Did we ever question? Oh yeah. Did we cry? Oh my, yes. Did we struggle? The nights were the worst…but He was there. He held us every moment, and we’ve never known Him deeper. In those early days, we united in pouring our pain into one cause: allowing God to use our story in whatever way He desired. The only cause we would fight for would be the cause of Christ.
The system is never going to work well.
The world is never going to see individuals the way God sees them.
While I understand the heart and passion that drives many parents to fight the system…and join movements to End the R-Word…and crusade for their child to be treated the same as other children, our hearts have been to view our situation through a different lens.
Of course we became information hungry – attempting to learn everything we could to support our daughter.
We chose to focus on her…
…and focus on all of the good gifts God had given us…
…and focus on the kindness and faithfulness of our Creator…
…and focus on how He would want us to share our story to encourage others and honor Him.
#2 We would go on…we would move forward…we would walk in what God had planned for our family…and we would trust Him at every turn. This began with our not cancelling anything on our calendar…even that weekend, we went forward with our already-made plans to host friends at our house for the weekend. Everyone processes things differently, but this approach was exactly what we needed at the time, and I’m so thankful we made this choice. I can not tell you what an encouragement those friends were to us during that time. They prayed Scripture over us…they loved on our littles…they made us a big breakfast…they were here. That Sunday, we went to church just like we usually do on Sundays. We knew that if we could just get to church, our pastor would pour into us from all that God had given Him that week, and we were hungry for that! I will never be able to tell you what He spoke on that day, but I can tell you that whatever it was, it was exactly what we needed to hear at the time. It was as if He was speaking directly to us – and I’m sure there were many others sitting there that day that felt the same way about whatever situation they were facing at the time. I love how God’s word has that kind of power. Those first days and weeks ended up being a little different than we thought when we were first planning our January calendar, but if we’ve learned anything, it’s that
While we may make our plans, God directs our steps… (Proverbs 16:9)
And as we walk the path He has designed for our family, our prayer is that we would choose joy along the way. Satan so badly wants to use the biggest shock of our life to completely destroy us…to wreck our marriage…to devastate our home…to distract our other children from the goodness of our Maker…but we are holding tightly to our Savior and asking Him to take what the evil one intends for evil and use it for good in our lives.
You seek to harm me, but God intends it for my good… (Genesis 5:20)
Happy Birthday, baby girl! You are fearfully and wonderfully made. Marvelous are His works and that our souls know very, very, very well!
I love this so very much! My daughter has DS also and I have chosen to to know that Gods plans are so much better than ours and that she is perfect and made in his image! At only 4 months old she has already taught me so much and the Lord has been so faithful. Thanks for sharing your story. I love following your family.