Summer contained some really incredible and sweet moments, yet also some really challenging moments for us. We definitely were on a metaphorical rollercoaster this summer.
We had the opportunity to attend Joni and Friends family retreat - camp for families with disabilities - in mid-July. While life is never without its challenges, goodness, did the Lord bless us beyond anything we could have imagined at this camp. The people - it was just so wonderful to connect with these amazing families, volunteers, and "buddies"; it meant so much to us to hear their stories and they were SO kind to listen to our life story as well. We learned so much from so many there and the details of God being at work for us to attend were beyond comprehension... that should not shock us. He can do it and did, but also being in awe is beyond justified... God sees and cares. He knows details greater than we even know about ourselves and he provides in ways we are always in awe of. God is so good.
We had just come off of Isla's surgeries in Philadelphia. She was and still is in so much pain. Anxiety and PTSD so very high. We can't often take part in much socially, and while there was a lot of circumstances making us question if we could go, God made it clear we needed to be at this family retreat. It just blessed us so very much. It was an answer to many years of prayer. We will share more about that in another blog post. Truly... cannot wait to share. What a high point of our summer.
We came home from camp and within that next week, we were spun into some extra overwhelming days.
I'm going to try to keep it concise. I had to have two ambulance rides to the ER on two consecutive days due to my Chiari/head pain. It got to outrageous levels. During this happening (I mean literally right in the middle of it) Justin had to have an emergency surgery (private details). So, we were thrown straight into chaos. Praise God, a few of those close to us showed up immediately and we are SO grateful for all their help. Our life comes with unique needs in general - our days are quite intense, so to have trusted help drop everything and come straight over within minutes was a huge lifesaver. We praise God for these heroes (yes...they are all heroes to us). We still don't know how to thank them all. Justin was able to come home from the hospital the day of his surgery but was out of commission and could not work for over two weeks. He has been on light duty at work for the last four weeks. This was a very difficult time, but he is healing well, almost to full recovery, praise God!
My head/neck/spine issues are not well, but I have been holding a bit steadier with my pain levels and thank God I haven't needed to go to the ER this past month. I've finally seen a couple of specialists after a long wait, and we are figuring out more diagnosis and what I will do moving forward for treatment.
Sweet Zeke's health issues have continued to be very challenging as well, and it has been a very difficult season for him. So many ER and doctor visits, so many tests, abnormal results, and such a long wait to see more specialists. He is so brave and so sweet through it all.
Guys, I'm not going to lie - these circumstances really induced some deep fear. It felt like the difficult circumstance level tipped over the edge; like there is an "all-too-much-o-meter" and we went from yellow level to full on dark red.
Being a special needs and medical needs family means being on high alert 24/7 due to so many factors. When your kiddos are suffering for so long and in many ways, it is heartbreaking. When both parents enter a place of medical needs as well, it is so scary and feels all too overwhelming.
God is so very gracious and merciful... so thankful that when we are feeling like life has gone from hard to off-the-chart hard, his truth remains the same and his grace, mercy, and love are experienced at an even greater level.
If we don't go through the hard, would we get to understand the depth of his grace through it? His grace is unending and has no bounds. Would we get to a deeper level of appreciating the little things instead of taking them for granted? My goodness how we shift to appreciating even the littlest things and our eyes are more open to beauty that surrounds us.
Now, I'm not saying crisis hits and I immediately have a grateful heart for those circumstances and every little thing. I'm human - the stress is fully felt and there are many tears cried. But within our fear is the opportunity to trust in all God has shown us...
Psalm 58:6 - You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.
Psalm 34:18 - The LORD is close to the brokenhearted and saves those who are crushed in spirit.
Psalm 58:6 - You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.
Psalm 34:18 - The LORD is close to the brokenhearted and saves those who are crushed in spirit.
Hebrews 4:16 Let us then approach God's throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.
2 Corinthians 4:16 - Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.
And then there is the Bible verse that we chose over Isla's life even prior to her coming home...Romans 15:13 - May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
It is amazing to see how God fights for us in those times. So much doesn't make sense, yet we have the opportunity to go to him, share with him the brokenness we feel, and while it may not all change in that moment, month, year... we find peace because of WHO God is. His promises stand true.
I'll admit, I don't want to all be in a crisis... I'm still battling fear with it and grieving a lot, but I also am able to recognize God at work through it all. There are areas I am growing in, areas he reveals his great love and mercy in - ways we couldn't even fully explain, and just how incredible it is that there can be a felt peace even when that dang all-too-much-o-meter is beyond comprehension. That is the Lord. We are not promised an easy life... we are promised who God is and are able to rest on that through life's challenges.
I'll admit, I don't want to all be in a crisis... I'm still battling fear with it and grieving a lot, but I also am able to recognize God at work through it all. There are areas I am growing in, areas he reveals his great love and mercy in - ways we couldn't even fully explain, and just how incredible it is that there can be a felt peace even when that dang all-too-much-o-meter is beyond comprehension. That is the Lord. We are not promised an easy life... we are promised who God is and are able to rest on that through life's challenges.
We are entering another difficult time in a couple of weeks.
We leave in just over 2 weeks for Isla's next VEPTR expansion surgery. We find ourselves facing more fears.
At Isla's last surgery, the medical team could not intubate her. Isla's airway has gotten significantly worse and was too fragile and swollen for intubation. Due to this, they could not proceed with her surgery. We are praying that Isla is able to be intubated for this surgery and for a successful expansion. We are trying to continue to do expansion surgeries for as long as we possibly can with her current VEPTR rods that she has. Due to her critical airway, we need to avoid longer surgeries (VEPTR replacement surgeries) for as long as we can. Longer surgeries mean a longer time under anesthesia and there are higher risks and complications with that.
Isla has grown so much. Like I shared a few months ago, that is a bittersweet thing. It's easy to see growth and think it only benefits her, but she is suffering with pain in so many ways because of it, too. Isla's lungs are little and along with growth her VEPTR rods need to be expanded to allow room for her lungs to support her.
Along with the physical hardship of surgery comes some very difficult triggers that this brings for Isla. Isla lives in a tornado of confusion and fear in living with intellectual disability combined with PTSD and anxiety. Life is so scary for her in general and another surgery triggers so much for her. I've said it before but imagine not being able to understand what is going on yet having to do it. It breaks our hearts for her. We are doing all we can to talk and play through all the questions she has. It is altogether too difficult for her to understand, yet she has to face it anyway. She has been SO brave. Strongest girl we know. We are praying and asking God for miracles... praying that this surgery can be successful and also for miracle peace for her.
Would you please pray with us?
At Isla's last surgery, the medical team could not intubate her. Isla's airway has gotten significantly worse and was too fragile and swollen for intubation. Due to this, they could not proceed with her surgery. We are praying that Isla is able to be intubated for this surgery and for a successful expansion. We are trying to continue to do expansion surgeries for as long as we possibly can with her current VEPTR rods that she has. Due to her critical airway, we need to avoid longer surgeries (VEPTR replacement surgeries) for as long as we can. Longer surgeries mean a longer time under anesthesia and there are higher risks and complications with that.
Isla has grown so much. Like I shared a few months ago, that is a bittersweet thing. It's easy to see growth and think it only benefits her, but she is suffering with pain in so many ways because of it, too. Isla's lungs are little and along with growth her VEPTR rods need to be expanded to allow room for her lungs to support her.
Along with the physical hardship of surgery comes some very difficult triggers that this brings for Isla. Isla lives in a tornado of confusion and fear in living with intellectual disability combined with PTSD and anxiety. Life is so scary for her in general and another surgery triggers so much for her. I've said it before but imagine not being able to understand what is going on yet having to do it. It breaks our hearts for her. We are doing all we can to talk and play through all the questions she has. It is altogether too difficult for her to understand, yet she has to face it anyway. She has been SO brave. Strongest girl we know. We are praying and asking God for miracles... praying that this surgery can be successful and also for miracle peace for her.
Would you please pray with us?
