It has almost been one year since I went to the hospital with contractions and had JT. It has been a year full of blessings, questions, confusion prayers and a year full of God. JT is going to be 1 on Thursday. He is not sitting up or crawling and he is having difficulty eating solid foods. This is all due to his Cerebral Palsy. Even though he is facing these challenges he is a beautiful happy little boy who loves to watch his brother play and who loves to talk! His smile can brighten up a room in an instant.
Recently I had a few swift kicks in the gut. This past week I was talking to JT's physical therapist about things that are going on as we discussed his need for special needs equipment. Next week we will meet with the specialist who will help us pick out and order the equipment JT needs. We will be getting a special stroller and high chair. Today I was sent some links to what the equipment looked like. My breath was taken from me! My heart sank, tears welled in my eyes. Having a special needs child is strange. You think you know things and you come to realize you know nothing! The equipment is overwhelming both physically as well as emotionally. I am sharing this information as well as I would like to b/c I am still dealing with it myself. I am not sure how to approach God on this other than to say "help me Lord!" I am at a loss. I am emotionally drained. I am sad! I had such hopes that he would be just fine! I had hopes that he would shock everyone and he would show them they are wrong. Instead, God continues to use Justin to work on me and on who I am in Him. It is very humbling.
So, that was the first kick. The second was that Justin's physical therapist began to talk to me about braces for his legs. Now that I have seen the equipment I think my mindset has changed. Originally I was thinking, "the doctors say his legs are fine, he won't need them." As we discussed it further, it turns out that over 90% of CP children begin their life in leg braces. That took my breath away as well. Now after seeing the equipment JT needs, instead of thinking, "my poor baby", I am thinking thank God and thinking "they think he will walk!"
In both of these instances my heart has stopped beating, I have lost my breath and I teared up. BUT, in both of these instances God has helped my heart beat again. He has given me my next breath and He has comforted my while my tears have welled. My God is a loving God and while I struggle with this. As Jake and I struggle with this He continues to give us joy in all things. He tells us "For I know the plans I have for you," declares the LORD, "plans to prosper you and not harm you, plans to give you hope and a future." Jeremiah 29:11
JT has a future. We have a future. God is with us. He has blessed JT with Ethan. Ethan is an amazing big brother. He loves JT so much. The other day I smiled with utter joy when Ethan said "JT, you come play cars with me?" Then I sadly had to tell Ethan that JT can watch Ethan play cars. Thankfully Ethan was okay with that, but as JT laid on the floor, Ethan took over a car to him and gave it to him to play with. Mommy was wrong, thankfully wrong, JT COULD play with Ethan and his cars!
If you think of it and have time please keep us in your prayers. Pray that God would guide us. Pray that God would bring us peace and comfort as we learn how to be the parents of a child with growing needs. Pray that God would bless us with a support system that we can lean on. People who know what we are going through. Praise God for our boys, for the love they have for each other. Praise God for being our rock!
Many blessings to you
Melissa
Monday, October 25, 2010
Summer 2010
This is much over due but here it goes.
This June we traveled to VA beach for Jake's sisters wedding. A dear friend of ours allowed us to stay at her house a few blocks from the beach. She was in town and stayed with her sister so we could use the house. It was such a blessing to us! We left late at night in the hopes that the boys would simply sleep in the car. On the way down it became very clear that Ethan was sick. He was coughing and crying and just couldn't sleep. It was so sad. He would fall asleep then cough and wake himself up crying. He would ask for a hug. Since we were on the highway a hug wasn't going to happen. So I told him I would hug his hand. I then was stuck "hugging" his hand most of the way down to the beach. Not a comfortable traveling position for one of us. But it helped him sleep a little better.
We got to the beach at about 12:30am. As we were driving trying to find the house, we couldn't! We could not find the house at all! We drove up and down the street, I said I didn't recognize it and I couldn't believe that I would forget what it looked like. Finally we thought we found the house. Problem was, there was a TV on (the house was suppose to be empty) and the key wouldn't work. So what did we do? We knocked. At 1am we are knocking on the door. No answer! By 1:30 JT woke up to eat and Ethan was a disaster. So we called it quits and spent the night in a hotel. The hotel was suppose to get us 2 roll away cribs. We waited, called the front desk, no answer. Waited, called... you get the picture. Finally Jake headed to the car and dug out the pack n plays. At 2am we got the boys in bed and the room was quiet. Then suddenly we hear this extremely loud noise.... I started laughing/crying. It was JT sucking his fingers. REALLY! What else could happen?
In the morning we got up, called my friend and discovered that I had the wrong address! So at 1am we were knocking on some poor persons house. AWESOME!
We got up, checked out, packed the car, and headed to the house that was in fact vacant and ready for us. We then spent part of the day with my friend and her family at the beach. It was a great time to catch up.
Ethan LOVES the beach and the ocean. Keeping him out of the water was a task in and of itself.
That night we to dinner with Jake's family. We ate at a local seafood place where we had a great time seeing everyone and catching up. Jake ended up getting food poisoning (we think) and was beyond ill. Later that night I woke up suddenly. Something wasn't right. I suddenly heard it, JT wasn't breathing well. I listened for a while, not wanting to wake him up. I thought maybe he had a shell fish allergy we didn't know about. Finally, I had Jake go and check on him (if he sees me he thinks food, ya know!) Turns out he got Ethan's cold. Our concern was that if it went to JT's lungs as it often went to Ethan's lungs we would end up in the hospital. Because he is a premie we have to be worried about these things. The next day we went we watched JT carefully as we got ready for Jake's sisters wedding. I called the pediatrician and spent about 45 min on the phone with them trying to determine if we should come home or if we could go on our vacation in NC. Thankfully I packed Ethan's nebulizar so she told me to treat JT with the neb. She then said go on vacation. If it got any worse head home, we had time.
That evening we watched Jake's sister get married in beautiful gardens. She looked stunning! It was a beautiful wedding and I think they really enjoyed the day.
The next day we headed down to Kills Devil Hills where some other friends of ours blessed us by allowing us to stay at their condo. NC was beautiful but a challenge. Jake and I decided no more beach vacations unless we have help. Taking both boys, and beach tents, chairs, toys, beach bag... was a little much for just 2 of us. But, Ethan LOVED the beach and the ocean and JT didn't. I spent most of our beach time under the umbrella holding our little monster. On the way home from the beach the boys fell asleep in the car. I started laughing. Jake asked what was so funny. I said "this is the most peaceful moment we have had and we are on our way home." Oh well. We were thankful for our vacation, but glad to get home.
In July we spent most of the month house hunting and then looking at rentals. In August we moved and celebrated Jake's 30th b-day. Another surprise party for my love! This time we caught his reaction on film.
In late Aug we traveled to NC once again but this time we went with my family. My sister in laws family allowed us to use their family house in Coralla. It was awesome! We had a great time at the beach in the ocean and with my family. It was a true blessing to wrap up the summer. Plus, this time everyone stayed healthy! YES!
So, although we had a very busy summer we had a very blessed summer!
This June we traveled to VA beach for Jake's sisters wedding. A dear friend of ours allowed us to stay at her house a few blocks from the beach. She was in town and stayed with her sister so we could use the house. It was such a blessing to us! We left late at night in the hopes that the boys would simply sleep in the car. On the way down it became very clear that Ethan was sick. He was coughing and crying and just couldn't sleep. It was so sad. He would fall asleep then cough and wake himself up crying. He would ask for a hug. Since we were on the highway a hug wasn't going to happen. So I told him I would hug his hand. I then was stuck "hugging" his hand most of the way down to the beach. Not a comfortable traveling position for one of us. But it helped him sleep a little better.
We got to the beach at about 12:30am. As we were driving trying to find the house, we couldn't! We could not find the house at all! We drove up and down the street, I said I didn't recognize it and I couldn't believe that I would forget what it looked like. Finally we thought we found the house. Problem was, there was a TV on (the house was suppose to be empty) and the key wouldn't work. So what did we do? We knocked. At 1am we are knocking on the door. No answer! By 1:30 JT woke up to eat and Ethan was a disaster. So we called it quits and spent the night in a hotel. The hotel was suppose to get us 2 roll away cribs. We waited, called the front desk, no answer. Waited, called... you get the picture. Finally Jake headed to the car and dug out the pack n plays. At 2am we got the boys in bed and the room was quiet. Then suddenly we hear this extremely loud noise.... I started laughing/crying. It was JT sucking his fingers. REALLY! What else could happen?
In the morning we got up, called my friend and discovered that I had the wrong address! So at 1am we were knocking on some poor persons house. AWESOME!
We got up, checked out, packed the car, and headed to the house that was in fact vacant and ready for us. We then spent part of the day with my friend and her family at the beach. It was a great time to catch up.
Ethan LOVES the beach and the ocean. Keeping him out of the water was a task in and of itself.
That night we to dinner with Jake's family. We ate at a local seafood place where we had a great time seeing everyone and catching up. Jake ended up getting food poisoning (we think) and was beyond ill. Later that night I woke up suddenly. Something wasn't right. I suddenly heard it, JT wasn't breathing well. I listened for a while, not wanting to wake him up. I thought maybe he had a shell fish allergy we didn't know about. Finally, I had Jake go and check on him (if he sees me he thinks food, ya know!) Turns out he got Ethan's cold. Our concern was that if it went to JT's lungs as it often went to Ethan's lungs we would end up in the hospital. Because he is a premie we have to be worried about these things. The next day we went we watched JT carefully as we got ready for Jake's sisters wedding. I called the pediatrician and spent about 45 min on the phone with them trying to determine if we should come home or if we could go on our vacation in NC. Thankfully I packed Ethan's nebulizar so she told me to treat JT with the neb. She then said go on vacation. If it got any worse head home, we had time.
That evening we watched Jake's sister get married in beautiful gardens. She looked stunning! It was a beautiful wedding and I think they really enjoyed the day.
The next day we headed down to Kills Devil Hills where some other friends of ours blessed us by allowing us to stay at their condo. NC was beautiful but a challenge. Jake and I decided no more beach vacations unless we have help. Taking both boys, and beach tents, chairs, toys, beach bag... was a little much for just 2 of us. But, Ethan LOVED the beach and the ocean and JT didn't. I spent most of our beach time under the umbrella holding our little monster. On the way home from the beach the boys fell asleep in the car. I started laughing. Jake asked what was so funny. I said "this is the most peaceful moment we have had and we are on our way home." Oh well. We were thankful for our vacation, but glad to get home.
In July we spent most of the month house hunting and then looking at rentals. In August we moved and celebrated Jake's 30th b-day. Another surprise party for my love! This time we caught his reaction on film.
In late Aug we traveled to NC once again but this time we went with my family. My sister in laws family allowed us to use their family house in Coralla. It was awesome! We had a great time at the beach in the ocean and with my family. It was a true blessing to wrap up the summer. Plus, this time everyone stayed healthy! YES!
So, although we had a very busy summer we had a very blessed summer!
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