The Waiting Game and New Adventures!

Waiting is not my strong suit. 

Looking back over the course of my life I see that patience has never been something I've "mastered". When I was in college a friend of mine put me in "patience bootcamp". He told me that he was praying daily that I would gain patience, no matter what trials I would face in order to do so. It was the only time in the 4 years I commuted to and from Albany to Rochester that I had issues driving on the thruway! Something so small but so extremely frustrating for me. One commute took me 2 hours longer than the normal 4 because of a fluke traffic jam (the cause of the jam? A tractor trailer in each lane deciding to hang out and never really pass the other. I've never seen anything like it since.) Another trial sent me through Syracuse in a major snowstorm, during which time my car ran out of windshield wiper fluid and I had to stop at a rest stop and figure out how to fill it back up! These are small examples but that whole time was riddled with really strange trials that required patience. I think I gained a little more patience during my "bootcamp" experience but really the trial of having a child with special needs has dramatically increased how patient I am. The reality of a child with no diagnosis, no way to know what is going on under the surface, constantly waiting for results, doctor appts, phone calls.... These things have increased my patience. Because I have absolutely no choice but to wait.

Right now, I'm waiting for results from the Undiagnosed Diseases Network about whether or not Amelia is accepted into the program. I've been checking the mail religiously since the beginning of January. They gave me an estimated time of mid-January to receive a letter telling us whether she's accepted or denied. Still haven't received anything. We started this process last April! It's taken 10 months to get to this point.... sometimes I just get so frustrated I don't even know what to do. Do I call every minute until someone answers? Or just be patient as I wait for someone to return my voicemail? Probably the latter... but I don't want to wait! *insert foot stomp here*

The month of January was also the month of waiting to decide whether to call the doctor about various symptoms my daughters' were showing. This was agonizing for me because I was putting my children's well-being completely on myself. (Can we talk about unnecessary anxiety??) Whether I called or didn't call the doctor would affect my children's outcomes which would then reflect back on me as a parent deciding whether or not to call. Do I call for something silly and incur a $75 bill for nothing? Or do I not call and miss something huge?? With Amelia, the unknowns are scary! She spent all last week excessively rubbing her eyes. Eye rubbing shouldn't be a concern. But in a child with an unspecified vision impairment and developmental delays?? Is it still not a concern? So I called the pediatrician last week who said to call the ophthalmologist. Who didn't get back to me for a whole day....when anxious thoughts are saying things like, "there's probably pressure building in her eyes...she's going to lose what little sight she has left because you didn't act quick enough," a whole day is agony. I called the next day and they told me her ophthalmologist was out of town. "Try warm compresses and call back next week when he has returned," is what they said. Hmph. Then her vision teacher suggested I get her in to see an ophthalmologist in the Syracuse area (Amelia's is in Rochester). So on Friday I called and was told I needed a referral from the pediatrician's office. I called the pediatrician who said they'd get a referral packet faxed over and they'd contact me when an appointment was made. More waiting! A full weekend of waiting, praying off anxious thoughts, and trying to keep her from rubbing her eyes. Side note: we noticed she didn't rub her eyes with her glasses on! Interesting! So I kept her glasses on constantly. Monday: no word from doc. Tuesday: nothing. Wednesday: I called the new ophthalmologist office and explained the situation. They got me in same day! (Becoming a special needs mama has also made me a major advocate and someone who doesn't care as much about "annoying" people by calling "too much".) I brought her to see the doc... who said she probably has the start of allergies. No pressure build up, no infection, nothing new. Phew! So I probably just incurred the most expensive peace of mind possible by bringing her to a specialist visit for "nothing". But peace of mind is not "nothing" and many times is worth it.

Now onto some of the deeper stuff. Amelia's doctor's appointments are not easy. Physically she's pretty good, she hangs out in her stroller, yells at the doctor, this particular appointment she blew out of her diaper all over me, y'know, the Amelia norm 😆. Emotionally, however, they are rough. "Any underlying diagnoses?" asked the nurse. "Ummm... what kind are you looking for?" I respond. "Anything she's been diagnosed with." "Well, okay, unspecified vision impairment, cortical visual impairment, hypotonia, global development delay..." I trail off as the nurse furiously scribbles on Amelia's chart. I look down at my toddler who looks like a 6 month old and think, "She's 2... non-mobile, non-verbal, cognitive skills unknown..."  I have to stop myself in my tracks. That's what these appointments do to me. They remind me of what I already know: my child is not at an age appropriate level. And I'm okay with that, most of the time. I've accepted it and I love her either way. But that doesn't keep fear from creeping in; or questions from hounding my brain... "how am I going to change her diaper when she's too big for the changing tables?" "how am I going to carry her up the stairs when she's 10 lbs heavier?" "will she always be so floppy?" "what does our future with Amelia look like?" These are questions I have to remind myself don't need answers now. And we've come full circle back to waiting! These questions will be answered in time. And they will be answered when I need them answered. God's grace is available at the time we need it, not in advance. I know that He walks me through these things - I've seen it through this whole journey - so I don't need to doubt that He'll answer my questions when it's time. 

I always like to include a song in my blog posts that has been encouraging to me and that God has been using to bring peace to my soul and remind me of who He is. The song Yet Not I But Through Christ in Me by City Alight has been played on repeat since Matt introduced me to it a few months ago. It is such an encouraging song! A reminder of who holds my life: Christ. Who life is really all about, not me or my kids but Christ!

The second verse says, 

"The night is dark but I am not forsaken, 

for by my side the Savior He will stay, 

I labor on in weakness and rejoicing, 

for in my need His power is displayed. 

To this I hold, my Shepherd will defend me, 

through the deepest valley He will lead! 

Oh the night has been won and I shall overcome 

Yet not I but through Christ in me." 

What a verse! "For in my need His power is displayed." I can really beat myself up sometimes as a mom. And as a mom with special needs it's even worse then it was before I had Amelia. Last night I was plagued with the thought that I somehow had contributed to Amelia's slow development because I didn't work with her enough. "I was battling depression and anxiety through her first 18 months and she's been negatively affected as a result." I know that's a lie. That is false. I know that I will fail as a mom. But I know that God will use it for His glory. And that He shows His strength when I'm weak and falling apart! How beautiful to have a God that is near to us when we call to Him. Today's bible verse on my bible app was so encouraging to me: Deuteronomy 4:7 "What other nation is so great as to have their gods near them the way the Lord our God is near us whenever we pray to him?" God is near to us when we pray! He will lead us and defend us through the deepest valleys.

The last verse of this song is also something I meditate on often. It says,

"With every breath I long to follow Jesus, 

for He has said that He will bring me home. 

And day by day I know He will renew me 

until I stand with joy before the throne. 

To this I hold, my hope is only Jesus. 

All the glory evermore to Him! 

When the race is complete, still my lips shall repeat: 

Yet not I but through Christ in me." 

The third verse about how our sins have been forgiven through Christ leads into this verse about the end of life. Someday we will stand before the throne of God. And those who love Jesus will be Home. Eternally at peace. Done with the race. Joyfully praising Jesus for His grace.  "All the glory evermore to Him" We were created to bring glory and to have hope in something as human beings, sometimes we bring glory or place our hope in our families, our houses, our successes. But the only hope that will ever fulfill and the only thing worthy of our glory is Christ. And when we realize this we can have ultimate peace and comfort. We will know that these things (houses, cars, kids, success) are only temporary but the hope of Christ is eternal. Last year, Matt and I lost a dear, dear friend of ours. He was only 27 and he suddenly died of a heart condition that still hasn't been determined. His wife and very young kids are still like family to us and I have seen how the hope of eternal life in Christ can sustain those left behind on earth. Sometimes the only thing keeping my friend going is knowing that her husband is with Christ where he is whole, complete, and has finished the race. She knows she'll see him again. In her 3 year old daughter's words, "Daddy is in heaven and now Jesus has a friend." *Cue major sobs here*  For Matt and I, the hope of eternal life also brings a strong desire to see Amelia whole and not limited by her earthly disability. I am so comforted to know that when she gets to heaven she will be whole again. I know this is the hope and prayer of many parents whose kids have a disability of some kind. But what a relief it is to know that all the struggles we face on earth will fade away and we will have forever peace with Christ when the race is complete. Praise to Him for His sacrifice on the cross.

Lastly, NEW ADVENTURES!! See these 2 faces?

These beautiful little girls are named Lillie and Josie. They are who I get to spend the better part of 7 weeks hanging out with! Their mama, my very good friend Katie, is going to be with Amelia at her school doing physical therapy work during a maternity leave while I'm hanging out with her 2 girlies! Let's talk about another change God has worked in my life through Amelia: before Amelia I would have NEVER considered doing childcare. EVER. Admittedly I was way too selfish with my time. Didn't want to deal with screaming kids. Didn't want to deal with behavior management. All the things that come with watching other children I wanted no part of. Well, I have now been mothering a perpetual almost newborn for 2 years so it's just kind of something I do. Plus, God has really worked through a lot of my selfishness (believe me, the struggle is still REAL but He's really changed my heart in huge ways). So when Katie asked if I would watch the girls for her, I considered it for 5 minutes and decided I was super excited about it! I know it's not going to be easy. Tuesdays and Thursday I'll have Natalie, Amelia, Lillie, and Josie all to myself. 😨 (Let's give mama some wine on those nights!) But I know it'll be full of joy regardless and I love that God has put me in a position where I can serve a family who has given so much to ours and I can contribute to our household income which is something I've been praying about for quite awhile. It's also temporary which brings comfort to Katie as she will really miss being home with her kiddos and to myself as I figure out how special needs parenting and childcare work together. So prayers for all of us as we work out the details and embark on this new adventure!

As always, I thank all of you for following along, for your encouragement and comments. I apologize I don't always answer comments or messages in a timely fashion. I'm trying to get better at it! I pray you're all blessed and have a beautiful, WARM weekend. God's peace to you all.