Temporary setbacks are overpowered by persistence

Quentin L. Cook

After condo hopping for a little over a week we were able to move into our new “home,” at the Ronald McDonald House of Philadelphia. I was thrilled. Not only was the constant moving really hard on me physically, but I was ready to just feel secure and know that we had a long term place to stay that was close to the hospital. I had all of those worst case scenario situations about early labor running through my mind and my anxiety was through the roof constantly. We arrived and I instantly felt better.

For anyone who isn’t familiar with this charity let me share a little background. The string of Ronald Mcdonald House charities act as homes away from home, for families dealing with pediatric illnesses and treatments at hospitals in the host city. It is a place for the parents and siblings of sick children, and or the children receiving treatment to stay at little to know cost to themselves. You get a room for your family, a ton of therapy and group resources, access to social workers, as well as free meals while you stay there. They have big play areas for the kids, and constantly try and keep it positive for the children, which I think is amazing. They have enough to deal with. It is a truly incredible charity, and once we are back in the black financially I plan on donating to them yearly, as they have done SO much for my family. The PRMH was the first of its kind in the entire country, and was founded in 1974. At that time they could support 7 families at a time, and now with various moves and expansions that number has increased to over 100. They just expanded and built a brand new building, which is where we are currently staying. We are the first people to ever stay in our room, and I am completely comfortable and taken care of. Every week on the day of my appointment there is a shuttle service to take us to and from the hospital, so we dont have to worry about driving. Its not home but like.. truly is amazing, and I am completely grateful we get to stay here.

We have been at PRMH over a month now, and its been ten weeks since I have seen my home. Its difficult. Some days are really hard. I am about five weeks from my scheduled C section, and am holding out that he makes it to 37 weeks, which would be the absolutely best case scenario for his development. My goal over the past month or so has just been…. STAY PREGNANT. Take your meds, keep calm, rest, dont over exert yourself. Stay pregnant. Strict bedrest was really rough because its hard to convince yourself to take care of yourself when you arent going anywhere. Luckily that only lasted three weeks, but I had to bargain with myself and convince myself to do basic things like brush my teeth, and shower, change shirts etc. There didnt seem to be a point if I wasnt allowed out of my bedroom anyway, plus for the first week or so I was still dealing with a fair amount of pain. I dipped into a little bit of a depression but luckily once I was cleared to modified bed rest and was at least able to take walks and have short excursions in the real world, it has made a HUGE difference. Now we can at least go to the store, or the movies, lunch etc, my husband and I can have SHORT dates together, although inevitably I come back to the room and fall asleep. The tiniest things make me exhausted and I am … really hoping my normal energy level returns after the baby is here… because its non existent currently. All my nurses have assured me it will! Fingers crossed! I feel like a bit of a hot mess, although every week its a little easier to walk, bend, and do basic tasks. So far I have not had any contractions, bleeding or signs of early labor but I am still being very cautious. Probably a little over cautious but, better safe than sorry.

Thursdays are my favorite days of the week because its appointment day. That may seem strange that my favorite day of the week is going to the hospital, but it is! It means I get to see my baby! Every week we have a short ultrasound to check his progress, and its nice to see his tiny face, and hands, and know that he is doing well. I like the reassurance of seeing him, and getting to see my reason for going through all of this really hard stuff. My baby <3. The love of my life. So while the rest of the weeks may be really hard and repetitive, Thursdays are ALWAYS a good day ❤ So far the little guy is doing well. His brain and heart are looking great. His Chiari II brain malformation has virtually reversed and his ventricles in his brain are currently well within the normal range. He does not currently suffer from Hydrocephalus, this may change but I am holding out hope. This was my main goal for getting this treatment done. Any mobility/orthopedic/other issues we must face moving forward, at least I was able to do what I could to make sure that some of his neurological issues and surgeries could be avoided. if I could improve ONE thing it would be worth it, and mean less invasive intervention later in his life. I am so pleased with his progress and healing so far, and he is already stronger than almost anyone I know. Mommy’s little warrior for sure.

Thursdays also mean prenatal class aka “Mama Care,” at CHOP. I … LOVE Mama Care. Its a voluntary group weekly meeting with a small group of parents also getting treatment from the Special Delivery Unit. Varying diagnoses, varying backgrounds etc. I had felt so alone until our first group meeting. Its definitely a form of therapy for me, to hear that I am not alone. There are other families, and other mothers who have the exact same fears as me. Fears about this really scary and hard situation, fears for their beautiful and innocent children, and the future. These women are so beautiful and strong, and I am so grateful that I get to see them once a week. This coming week is the last one for the session and I am somewhat devastated its ending. Some of the women in our class have already given birth or are set to in the next few weeks, so the sessions have been getting smaller, but I really have gotten SO much out of it. Several of the mothers and support family members are also staying at PRMH and its nice to see familiar faces in the hallways and the cafeteria.

We will be here until delivery at the end of July. Send good vibes that the little man behaves that long! I need to have this bun in the oven for as long as possible!

Ciao for now.

2 thoughts on “Temporary Living

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