ok, so here's the discouraging stuff....
I am so very tired. I love my daughter, with a deep loyal love, but this constant feeding is starting to put me over the edge again. Yesterday in church, I had to heat up a bottle five times in the two hours we were there. How many one year olds need a bottle that often? We took the night last night too. And it was awful, feeds every 15 minutes or half hour for my part of it. (up until 4am when Dave took over and he didn't sleep after that either). I dread these nights. And there's more coming for us.
In the past few days, I have felt so discouraged and even anxious about our respite situation. We have been hoping that we could get some more respite hours but it doesn't look too promising at this point. (we will get the final answer next week.) The thing that really bites is that we have been going over our allotted hours for awhile now because we felt that we needed sleep. (especially during and after the recent rough patch) And now there are a bunch of nights coming up that we need to do ourselves. I want to be more positive about this. I am SO GRATEFUL for the hours we have been given. I honestly do not know how we could have survived the last year without this help. But I am exhausted even with what we have been given! This is really hard work! And we have never faced something this demanding before.
Please keep praying with us for more relief, and if more hours don't come, please pray that God would give us more and more endurance. I feel like a lousy mother when I am this tired and when there are signs of spells or blueishness, I am so much more easily stressed. Please pray too that I will be able to accept the situation we are in, and submit myself to God, who loves and cares for us. And this has been such a battle for me lately. I don't want to submit. I don't want to bend. In my heart, I feel insanely selfish sometimes. I often fantasize of a time when I can do whatever I want. Even the idea of running out to the park with the kids sounds like an impossibly wonderful plan - it's one that just doesn't happen here without alot of careful planning. I am terrified of another difficult summer ahead. But I also want to be faithful in the journey we are on. I want to live joyfully, even in these days when much is asked of me. God, please give us courage to live this way.
Our prayers are with you all Kendra. I can only imagine how hard it is to keep going on like this. I pray that God will be with you and give you strength and endurance in the days ahead. Our love and prayers are with you. Frank & Debbie
ReplyDeleteoh yes - courage to live this way...
ReplyDeletebeautiful.
Your family is constantly in my prayers. If I could ask God to take my sleep and give it to you, I would. I'll be praying for more help to come your way.
ReplyDeleteI have been a lurker for almost a year now. My prayers are with you that you may find the strength you need to continue to care for yourself but also meet the needs of Rachel and the other kids and most of all to be a support to your husband. The idea came to my mind is there any funds available through Variety or Rotary etc to help cover more respite. Just an idea hope you don`t mind me sharing. Take care you are doing an amazing job!
ReplyDeleteit was so good to read of how good things were going for rachel. all the smiles and laughter . . . an answer to prayer!! when i did not see any updates for a while, i figured things must be going well. praise God! and we shall pray that God provides the sleep you need as well, whether through more respite, or through longer sleep times at night for rachel. kendra, coping well without sleep is a feat few can accomplish. i will pray that God gives supernatural endurance and that He gives you strong hope in your ability to endure - ok, not just endure, but to thrive :D you are so loved!! you are God's precious child whom He cherishes. He will provide for all of your needs according to His unfailing riches because He cares for you.
ReplyDeleteIf only we were close by, we could come and do nights for you in the summer. Failing that, I will be praying for you. Kendra, we can all empathize with your struggles; unfortunately, none of us have attained sainthood yet. I pray that you will have the endurance and strength you need for the nights, the patience and love that you need for the day; peace and joy for your nights and days. Love you.
ReplyDeleteIt's hard to hear that you are so stretch right now, but we will continue to pray that God will work things out so that you can rest. However that looks, we pray for strength and peace and most of all rest.
ReplyDeleteKendra, when Logan was at his sickest we had to feed him a bottle every single hour day and night. IT WAS AWFUL. I know exactly how you are feeling. The exhaustion is so overwhelming and then you can't deal with anything during the day. Even after 2+ open heart surgeries Logan still needs 2-4 feedings in the middle of the night. It is a combination of gastric delayed empyting, small stomach capacity, and tiring during feeds. Have they thought about an NG tube? Then you could get a pump to feed constantly thru the night. That would help tremendously. I know oh so well, exactly how you guys are feeling.
ReplyDeleteIs there a possible way that they (Drs)could put something in her so you could attach a feeding tube so she could get food on a slow drip at night so she might sleep longer if it is the food she needs constantly. That way she would not tire herself out & at least you could get some decent sleep, Kendra. My prayer goes up for your whole family. This is totally draining you, it is so hard to see you suffer, and we are so helpless as to what to do. I can not even begin to understand the stress you are under. May the loving Lord have mercy on you and also precious Rachel.
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